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Drug Guide: DMARDs

Without treatment, joint inflammation can cause permanent damage. Doctors know that it is wise to prescribe a disease-modifying antirheumatic drug (DMARD) before such damage occurs. People newly diagnosed with an inflammatory form of arthritis, such as rheumatoid arthritis, may be prescribed a DMARD upon their diagnosis.

Another reason DMARDs should be started early is that, although they are generally effective, they take a long time to show results. For example, hydroxychloroquine (Plaquenil) and sulfasalazine (Azulfidine) may take up to three or four months before effects are noticed. Other drugs, such as methotrexate, work more quickly, but often not quickly enough. For that reason, doctors frequently prescribe an additional drug – such as a corticosteroid or an NSAID – to help control pain and inflammation while the DMARD starts to work.

DMARDs are most commonly used for rheumatoid arthritis, but some are also used for juvenile RA, ankylosing spondylitis, psoriatic arthritis and lupus. Some, such as chlorambucil (Leukeran), mycophenolate mofetil (CellCept) or cyclosphosphamide (Cytoxan), are used mainly to treat severe organ disease, such as kidney disease caused by lupus or vasculitis. The dosages listed in this chart are for those with RA; your dosage may vary depending on your specific condition and factors like disease severity, age, body weight and other medications you are taking.

Only three DMARDs – auranofin (Ridaura), leflunomide (Arava) and Azulfidine – were actually developed for rheumatoid arthritis. The others were borrowed from different areas of medicine: Hydroxychloroquine (Plaquenil) is a malaria drug, chlorambucil (Leukeran) and methotrexate are cancer medications and cyclosporine (Neoral) originally was developed to keep the body from rejecting transplanted organs.

Because DMARDs suppress the immune system, always watch for signs of infection – chills, fever, sore throat or cough – and report them to your doctor. And check with your doctor before getting any vaccinations.

Louis Poff
31 Jan 2012, 10:30


i am a 44 year old male with Psoriatic Arthritis for 27 years
And I have taken all of the medications listed above. Although this article was somewhat informative if you are looking for the correct spelling it didn't say much else. There are lots of other drugs they didn't mention.

I have also taken Embrel, Remicade,Humria and one other I can't remember its name. Until I acquired MRSA (A possibility they forgot to mention).

But I can give you some advice I wish someone had given me. Be proactive at all costs, know everything. Be a smarty-pants when you go to the doctor. You are in charge, it's your life. You're the one that has to live with the pain. You are the person giving up everything for your illness. Doctors don't always know best, you know your body better than anyone else
linda
26 Jan 2012, 17:12
I have been diag. with dermatomyosits after having surgery for acdf jly. of 2011. It all started with a really itchy rash and has esculated from there. This is an autoimmune disease. Don't know anyone else that has this rare disease. I am on prednisone and also methotrexate. Does anyone out there know anything about this disease? I need info.
Peter Lekas
23 Dec 2011, 23:20
Eva, thank you for your kind words. I wish everyone here a wonderful holiday season as well as bright new year and those that follow...
Eva
16 Dec 2011, 21:35
Connie, I noticed a huge difference with the pharmaceutical maker PRASCO. I switched back to the maker TEVA for my Leflunomide. I've heard that generics are all the same but that's bs. I started getting worse with PRASCO and the side effects were wicked. Talk to your pharmacy about a switch or ask your doctor for an "exception" for non-generic Arava.

Peter-I'm very sorry about the loss of your daughter. Please know that RA is a monster and it knows no age or gender. It can be well controlled with meds and yet some of the meds could kill us. However, quality of life means so much to us all.
I became a severe anemic on metrotrexate and ended up needing an emergency blood transfusion. My current rheumatologist DID NOT take me off the medication after the incident. I took myself off and demanded another rheumatologist and after 4 months my bloodwork is back to normal. We have to be our own advocate when it comes to these dangerous meds. Don't blame yourself as we all resarch and learn so much when this monster hits us or a loved one. May god bless you and your family.

All the rest of you should visit and join DAILYSTRENGTH.COM They have a RA group that has over 2500 members. People talk about current problems and treatments as well as offer support for eachother. No one really answers you here. Good luck to you all.
Brandi
13 Dec 2011, 09:44
My lil girl is 18 months old and was diagnosed 2 months ago with RA. Anyone's lil one diagnosed this young? And if so, what treatment plan did y'all pursue? She was treated yesterday with cortisone injections in both knees, but her MD is suggesting methotrexate as the next step, if the steroids are not successful. I have read some comments about devestating results of this med, and it just adds to my hesitancy. I am familiar with methotrexate as a chemo drug only, and have seen it's results as an oncology nurse for 2 years.
Connie
11 Dec 2011, 17:01
Have any of you who take Leflunomide noticed an increase in side effects since the manufacturer resumed production in late summer 2011? Since a script refill in September, I've been experiencing a tremendous amount of hair loss. I'm currently awaiting results of a scalp biopsy, but I truly think there must have been a change in the Leflunomide formula.
Peter
07 Dec 2011, 13:40
To Liz:

You stated being surprised about some of the comments you've read here? I'm curious to know what specifically 'surprised' you?
Liz
06 Dec 2011, 19:36
I work in Rheumatology and am surprised by some of the posts I have read here. Whenever I start someone on a DMARD I advise them of the risks in general, i.e., lowered immunity, more susceptible to infection and slower healing. I always tell them to hold the medications if they develop any kind of infection and not to restart it until whatever is going on is healed or they are off antibiotics. I also give them information of specifics related to their medications, such as the increased risk of eye problems with Plaquenil and the need for monitoring by an opthamologist.
One of the lesser advertised "treatments" with autoimmune disease, however, are dietary changes and supplements. I have many patients who have had good success in avoiding gluten and thus decreasing or eliminating their RA symptoms. A gluten free diet can also help psoriasis and psoriatic arthritis. Fish oil is a great anti-inflammatory supplement. Boswellia is another.
There are many times that I will examine a patient and find obvious inflammation such as swollen joints, and yet their blood work does not show any changes. I treat what I see and what my patients report, not necessarily what the blood work shows. You are a whole person, not a number on a piece of paper! Don't let anyone treat you as such. In my area Rheumatologists are few and thankfully the group I work with is knowledgeable and caring. If you are diagnosed with any type of inflammatory arthritis such as RA or psoriatic arthritis, get a referral to a RHeumatologist right away! It is in your best interest to do so. You don't have to just "deal" with the pain. There is a whole lot more going on besides pain. RA will destroy your joints and cripple you if left untreated. Your body is attacking itself. There is effective treatment and there is hope. Don't be afraid to ask questions or to get a second opinion.
you will find just as many people who say that the meds worked for them as you will find say they didn't or caused terrible side effects. The meds are not without risk, just like anything else. But sometimes the side effects are a lot better than the long term consequences of untreated disease. This is one area in which I believe complementary medicine is a very good adjunct to traditional medicine. Good luck!
gail
26 Nov 2011, 07:06
I have just been told I have fibromyalgia and R A I have been worried about taking the Plaqeunil but after reading your comments I feel much more assured thanks for the help
Peter Lekas
24 Nov 2011, 02:41
To Khristen:

I am SO sorry it took me so long to check back on this site and I'm so glad I did. Thank you first of all for your kind words. We've all heard that losing a child is the worst possible tragedy in life and im here to tell you that it goes far beyond that. Anyway, my daughter, Patrice was in the 5th grade when she began having symptoms of JRA... She was first treated with Prednazone alondg with Folic Acid etc.. which completely transformed her thin lanky body into an inflated balloon. Her doctor was the Chief of Rheumatology at Stanford Children's Hospital in Palo Alto, CA. Patrice was then treated with methotrexate via injection (LARGEST needle I had ever seen)..eventually she was prescribed pill form.. she took it on and off for several years and ulitmately went into remission reverting back to her slim figure and all symptoms disappeared. For her high school graduation, an aunt had given her a trip to New York City as a present. Although it has been written in numerous articlae Ive read to stay away from large crowwds in public places to limit any risk of being infected from others, she and her aunt were on tour buses, subways, airplanes etc surround by thousands of tourists etc. Upon her return home, she started college for one day and then became ill with sore throat high fever of 103.7 and severe nausea. I had taken her to a Kaiser ER 3 times but they never admitted her. On the 4th time, she went into shock and cause of death was incomplications of infectious mononucleousis including ruptured spleen, anemia and low platelet counts. Methotrexate is SO toxic and powerful that people sometimes dont experience any side effects until months after stopping treatment.. Had I know, I NEVER wouldve allowed thids drug to be part of treatment... i HOPE for the best for your girls.. you sound like a wonderful Mom and I want to give you my email addrsss in case you want too keep intouch and.or need advice in any way.. Email me at peter.lekas@coldwellbanker.com Kind regards, -Peter PS: FGO to the following web site and light a candle if you wish to http://pclwithlove.memory-of.com/About.aspx
Readytokickbutt
21 Oct 2011, 17:04
Khristen-I don't have a child with RA but I can attest to the treatment of metrotrexate. Watch her symptoms carefully on this medication. I was dx in May and immediately put on this medication. I lost 50lbs over a course of 4 months, it depleted my B12, and my RA progressively felt or actually got worse. My new rheumy just took me off of it and placed me on Arava. I don't mean to scare you but some arthritis medications actually make the disease progress. If she stays tired all the time and you notice she's not getting around then take her off of it. I watched a documentary where a 13 year old had since she was 6. She eventually went on Acterma and she started to really improve. I currently take Humira and Arava and if this mixture doesn't work I'm seriously considering the Acterma. Good luck and remember the metrotrexate can be deadly to some as it was for me.
Khristen
15 Oct 2011, 13:48
@ Peter... Are you still on here? My daughters were both diagnosed with JRA two years ago (7 and 5). They have been getting the injections with each flare, which is about every 6 months. My 5 year old did not respond to the steroid on her wrist and just took her first dose of the Methotrexate. I am worried about this drug. She is not taking it with any other medication other than Naproxen. Please tell me more about your daughter, if you are up to it. I can't imagine how hard it must be for you and I'm so sorry for your loss...
Peter Lekas
08 Oct 2011, 01:41
My daughter was diagnosed with JRA (Juvenile Rheumatoid Arthritis)when she was 10 years old and was treated with drugs like prednisone and methotrexate. At the age of 17, she died as a result of complications from mononucleousis because her immune system was SO damaged, her body could not fight off this 'rarely fatal' diagnosis. Think twice before you allow someone you love to take methotrexate. IF my comment is actually posted here, pay attention! Do your own research. My daughter was my life. End of story.
Sheryl
05 Oct 2011, 16:52
I recently had blood test revealing RA. I am trying to find a low or no cost prescription place for the hyrochloroquine. I have no insurance and used a county clinic which is very limited. But my pain level is terrible and I really want to start meds, any ideas would greatly be accepted.
Sheryl
Gwen
23 Sep 2011, 17:43
I was diagnosed with RA in my blood stream (throughout my whole body)about a month ago. My doctor started me out with samples of Celebrex. I believe the Celebrex worked because now I am having major symptoms like swelling across my right shoulder, shooting pains down my spine, throbbing pains in my ankles, etc. A week ago he prescribed Gabapentin which does not help at all. When he originally diagnosed me my B12 was low,my vitamin D level was low, I had high levels of Uric Acid in my blood, my Potassium level was low and I found out that I am a border line Diabetic. That was all quite depressing. Do some of these symptoms go hand in hand? My doctor did not refer me to a Rhematologist. I will suggest it though. I am not able to do much most days and then I have a really good day and over do it. I have not been able to return to work after getting laid off almost two years ago because of back trouble and now this. Any wise words?
raju
14 Sep 2011, 12:42
hi, im raju from mumbai, india.
im suffering from RA since 1992.i would like to get more deatil on medicine which work more effectively & for long period,that to avaliable in india
Jeanne
12 Sep 2011, 20:16
I am 60 years old and have had RA for 4 years. Before being diagnosed I had asthma so severe that I had to take a boatload of meds and did not have breath to do anything. After being diagnosed with the RA the doctors put me on Celebrex and Methotrexate. It waS like a miracle for me as it helped the RA but more importantly to me, it took care of 95% of my 20 plus years of asthma symptoms. Being asthma is an immune disease it must have helped. I still take the methotrexate once a week but only take the Celebrex as needed. If I could choose I would take any pain that any arthritis can dishout instead of any lung disease that affects ones ability to breathe. There is nothing worse. We all seem to have crosses to bear but sometimes they turn out not to be a cross at all. Hope that you all feel as well as you can and go with what you've been given
Debbie Kuebler
11 Sep 2011, 19:02
I'm 55 yr old female, diagnosed 3 yrs ago with RA. My internist knew immediately what was wrong & sent me to a Rheumatologist. He started me on prednisone, celebrex, folic acid, methotrexate & plaquenil. I followed his directions down to the last detail & haven't had a flare-up in 24 months! He has removed the celebrex & prednisone. Now we are working on the methotrexate. My numbers match that of a normal, healthy person. His goal is to lead me into remission & reduce all meds!!!!! I have had very little side-effects...not even any worth mentioning. My hair is healthy & strong. I would like to encourage you to be a team with your doctors, do what they ask & take your meds. My hope for you is that together you can make it through!
Kathleen
08 Sep 2011, 22:12
Christa,

You said you were scared to start taking Plaquenil because you heard it causes hair loss. I've been on Plaquenil for 7-8 years and I have hair to my waist and my ponytail is as big around as a lemon. I'm 52 years old and had my first flare at 35; the doctors thought it was bursitis, then a pulled muscle, etc. I was in my mid-forties before I got the news...it was RA. Because of that I already had some damage and some catching up to do with a DMARD. Plaquenil works amazingly well for me. I used to have flares (excruciatingly painful flares) about 5-6 times per month. Now I have tiny flares (more annoying than painful) 2-3 times a year and ibuprofen knocks them out. While taking Plaquenil, you need to get your eyes checked 2-3 times per year (I've not had any problems there either). The ONLY side effect I can remember having in the very beginning was nausea and diarrhea in the mornings for an hour or so. That only lasted a couple of weeks though while my body acclimated. It has been a miracle drug for me, please give a try if that's what your doctor wants you to do.
Jo
06 Sep 2011, 05:08
I have been on methotrexate now for 5 years. I had tried other drugs but none worked. To begin with I was on methotrexate once perweek and prendisoline. Worked a treat. My Rheumotoligist prefers patients to get of the predisoline as soon as possible. It wrecks your bones and just not great for you.
Methotrexate...lost a little hair...regular blood tests (weekly after first dose, then monthly, then I am now at quarterly).
I could not move, hug my children, cook dinner before I had this drug. And whilst I appreciate their can be side affects I have lived the last 5 years relatively pain free and normally. There was no choice.
I was scared of it at first, but I talked to my doctor and got the facts. May I suggest this for advice rather than just accepting others (including mine).
I have two friends who have been on this drug for 15 years and seem fine. But everyone is different.

Christa
02 Sep 2011, 00:12
I've been taking Methotrexate for over a year now. I just saw my Ruemmy Dr and ask him if I can get off the medication. He said "yes." A few days after that I starting to have pain in my hand and knee. I don't know if I should call him and tell him or just tolerate the pain. I would said the pain level is 3-4. I told the Dr I refuse to go back on Methotrexate. He said if I get pain or flares up then he want to put me on Plaquenil. I read on the internet that cause hair loss just like Methotrexate. I have very thin hair and don't want to lose more from the medication. I just don't know what to do. Right now I'm trying to tolerate the pain the best I can.
Sue
18 Aug 2011, 23:26
March 2010 my left knee swelled up and became very painful. I thought that my 150 lb. dog had bumped me the wrong way so I just went to the E.R. The Dr told me that I was overweight, old and had degenerating joints. He acted as if I was just trying to get drugs. I finally went to see a regular Dr when the pain and swelling kept getting worse. By then I needed crutches to get around. She took blood tests and called me at home to tell me the results, as she put it "the results are positive for RA and they are through the roof". By then it was July 2010. When you have no insurance your treatment options are few. It took 5 months after diagnosis to get in to see a specialist. Very few are in this area. Methotrexate,leflunomide,Plaquenil and Prednisone. All cause different side effects but I go every 4 weeks for blood tests to make sure that liver is ok. Warm water therapy has been suggested but cost is out of my reach due to the fact that I cannot work anymore. I am now able to walk without any crutches or canes. Have to be careful of the drugs because of allergies to sulfas.
DM
18 Aug 2011, 17:01
I was diagnosed with RA about three weeks ago. I had been going to the gym for about three months, and started noticing that every day something new would hurt. One day arms the next day legs, then my feet. Then one day everything started to flare with inflammation at the same time. I couldnt work out anymore, much less walk. So I went to my family doctor's office and explained to him my symptoms, and he said "its sounds like you have RA". They did the blood work, and it turned up positive for the rheumatic factor. I have been on Naproxen since August 3rd, and began taking Methotrexate last thursday. I cannot wait til the methotrexate kicks in because I cannot stand the pain, and I can barely make it thru a work day anymore. Aside from taking methotrexate, I also take Folic acid, multi vitamins, b12, and calcium pills. I can only hope that they find a cure soon, because I cannot picture living like this much longer.
Rosemary
13 Aug 2011, 16:16
Cyndi, take heart. A week from today I'll be 78 and three days ago my MD told me my blood tests revealed RA. I finally went to him about the pain and swelling in my fingers and increasing difficulty in getting up from my knees -- all of which I had attributed to age! He prescribed what I refer to as a "starter drug," meloxicam, and it has helped. Go back to him in a little more than a week. Can't get into see the one and only local rheumatologist until Dec. I've read so many of these postings and can only say I'm at a minor inconvenience when compared to so many of you. I wish all of you well.
Julie Myers
24 Jul 2011, 21:30
I was diagnosed with RA three days ago. They also told me I have Vitamin B. defienacy, Raynauds Syndrome, and also a blockage in my middle finger.I was diagnosed when I was five with juvenile arthiritis.I am worried about the RA The doctors found a shadow on my lungs so I do not know if that is from the RA or the broncotis that I have. I am 33 and have four wonderful children. I would like all the information about the RA that anyone could give me. Thanks.
Annie
20 Jul 2011, 11:07
I dont know if any of you have done a hollistic approach. I avoid dairy, meat and sugar. I try to avoid gluten, but it's really hard. It has helped a lot! I simply eat 80% vegtables, 10% protein (beans, lentils, quinoa) and 10% grain (rice, couscous, amaranth etc) I do have flare ups from time to time when my diet is off coarse. A good read is Crazy Sexy Diet by Kris Carr
BB
12 Jul 2011, 12:19
I was diagnosed with RA at age 31. I fought two years before that to get someone to believe me! I have inflammation in my hands,wrists,elbows,shoulders. I am now starting to notice it traveling to other joints. I am not a believer in doctors who just want medicate, which is why I am on my 4th RA doctor. I am on Methotrexate, but not much else. I have managed to get my RA somewhat under control. If you are not on Vitamin D or taking Vitamin D do so, you are going to need about double a normal person. I am also a user of accupunture, it works for me. It won't be covered by most insurances, but sometimes the person will work with you on price. I am too scared to try the biologics, they just don't have enough studies about the effects, the drugs have on people. I also use analgesic balms directly on the sore spots, it seems to help. I am also taking a non narcotic based pain killer, formula 303, now you do have to take more than two pills to get affect, but they are homeopathic and non habit forming, also no grogy feeling. Hope this helps someone.
Janice
08 Jul 2011, 18:05
After reading a lot of your comments, I can tell you I identify with those of you who are just not ready to take on the strong medicines needed to help symptoms. I was diagnosed with psoriatic arthritis about 3 yrs ago. The pain in my feet was unbearable. To date, I have not taken any of the strong meds used for this condition such as Methotrexate, DMARDS, biologics or sulfasalazine, and by using ice packs and taking CoQ10, my feet feel completely better. However, 3 weeks ago, I think I developed A.S. My lower back is killing me, with severe pain in my hands, neck and shoulder, along with weakness in my legs and arms. When I see how many different meds people are taking, I'm thinking that's just crazy! Almost every med I've taken causes side effects. Such as I did take some Nabumetone 500, but I got depressed and teary the days I took it. On top of that, it didn't relieve the pain! I have dealt with psoriasis for 30+ years now, but this psoriatic arthritis and A.S. is getting the best of me. Someone mentioned they have really good results with Sulfasalizine, which I am considering. How about Prednisone? Does that work? My mom took a small dose of it for several years for Polymialgia. Does anyone just "wait it out" and hope for a remission? That's sort of what I'm inclined to do. It seems like all pains subside eventually. I could really use some good advice and encouragement!
Cindy H
05 Jul 2011, 15:39
Was diagnosed w/a "touch" of RA, Polyarthritis, Osteoarthritis, and to make it complete Degenerative Disk Disease a several years ago; I don't have too many joints left on me that doesn't hurt to some extent. I figured my lactose intolerance and 20 years in the Army finally caught up w/me. Am 52 and taking Plaquenil, Methotrexate, Sulfasalazine, Folic Acid, Calcium/Vit D, Flaxseed Oil but still hurt. Have tried but can't take several meds out there as I'm too sensitive to the side effects (THAT didn't happen til after I hit 40). Won't consider shots/IV's as my family has a history of cancer and that's a chance I just can't take.
I've been on and off Prednisone for a few years - wonderful til you are off it when the pain is twice as bad as before. Am considering a pain med finally since you can't stay on prednisone forever, but, am concerned about becoming too dependent on them. Not sure if there's anything left (in pill form) that I can take that will help.
Any ideas?
Donna
21 Jun 2011, 16:39
I am 56 and was diagonosied with aggressive RA November 2010. I have taken metrotrexate injections and Humura. Had a bad rash reaction at the shot site and had to be taken off Humura. Also my liver panel went crazy after several months on metrotrexate so am off that.I have been on Embrel for seven weeks now. It gets you down and am wating for results. There is so many medicines and I just do not know what to do. I have it in feet,hands and right kneel.
Adrienne
12 Jun 2011, 10:08
I am recently diagnosed and want to hear about anitbiotic therapy. My understanding is that this has been added officially as a DMARD. Anyone else on the therapy without methotrexate or biologics?

Thanks
Brittany
10 Jun 2011, 07:56
I never leave comments, but I so enjoy reading others. I thought it was high time I shared my story. I ended up in the hospital in January of 2010 unable to walk or use any part of the left side of my body. After tons of tests, including a lumbar puncture and full body MRI, and months of seeing one specialist after another I finally made my way into a Rheumatologist. I was diagnosed with severe RA. I started sulphsalizine three times a day with vit d and c. When I went back three months later my xrays showed even more inflammation. I started the 50MG Enbrel and I have been taking this for 18 months now. I recently added methotrexate to this. I also take vicodin and use lidocane pain patches. Although I am not sympto free, I see the light at the end of the tunnel. By the way, I am only 25. I recently got fired from my job because my boss thought I was faking.
Kevin
07 Jun 2011, 16:50
I have been having the swelling and pain in the joints since I was 21, the doctor at that time said I had Gout and sid it was just something I was just going to have to deal with in life and gave me a treatment plan. It never really worked. I would get the pains every year and just assumed it was the Gout and did what I could, but this time something wasnt the same. My joints in my hands, feet, knees, and shoulders got really swollen and I could hardly move. My new doctor sent me to a Rheumatologist and took a ton of tests. Last night he finally diaginoised me with sero-negative RA. From what I am reading I am being given text book treatments. I am taking Sulfasalazine 2x's a day, Prednisone 1x day, Folic Acid 1x a day, and have to give my self a shot of Methotrexate once a week, plus something to help me sleep at night. I am so happy I found this site and can see what and how other people are going through. I am so freaked out by this whole thing and am trying to learn as much about RA as I can.
Judy
03 Jun 2011, 23:25
Cindy,

I was diagnosed with RA last fall at age 65, so it happens. My mother had it starting at age 40 - so I feel lucky it took so long to get me.

Good luck.
Judy
cyndi
28 May 2011, 01:15
I'm 71 and I just been diagnosed with r.a.
is there anyone you have ever heard of getting r.a.this late in life
chrissy
21 May 2011, 19:57
Im a little disappointed that its taken me so long to pay attention to this site. Im 30 years old, and was diagnosed almost a year ago with Ankylosing Spondilitis. I visited 13 doctors over 10 years, most thought the pain was due to the bulging discs, minor arthritis,along with many other diagnoses.... including one doc that said it was all in my head. My primary care had me on vicodin for 2 years, when she opted to add in oxycontin as well, because the pain was so bad. I walked with a cane for 2 years, and was borderline wheelchair bound when finally, another PCP in the practice did a full blood test and discovered the hla-b27 gene. Years of various surgeries, injections, and boatloads of treatment plans and drugs later... I visited a rheumatologist , who prescribed me 50mg injection of Enbrel once a week... andin 2 months i was back on my feet again. side effects are minimal - headaches - but manageable considering the alternative! so to anyone with AS- i am a firm believer in enbrel and recommend it 150% to improve your quality of life!! THANK YOU ENBREL!!!
Sylvia
01 Feb 2011, 12:41
Pat...I was diagnosed with A.S. about a year ago after my wonderful eye doctor treated me for Iritis three times and ordered blood tests. I tested positive for the gene and was started on Prednisone 20 mg a day and Methotrexate shots titrated up to 20 mg a week. After seeing a specialist I was put on oral medications but still have to have blood tests every 6-8 weeks. He also took me off the Prednisone as I wash developing Cushings Syndrome and he feels its the worse drug to take. I am so much better. Yes, the Methotrexate caused some hair loss but I have found that wigs help out when I'm going out but at home I don't bother. Good Luck. It's a difficult diagnosis but follow your doctors suggestions and it will get better. I've had no problems with the Methotrexate as far as my stomach or nausea. I am having problems with my knees but that is osteoarthritis and probably just a symptom of old age. I am 77 but everyone thinks I am much younger. I worked until I was 74 and hated giving up that independence. I do a lot of volunteer work and hope to continue that. Keeping a good attitude can be a lot of help. Also I like to sit in the hot tub each morning to work out the kinks. I like the suggestion above about a heat mattress pad. I may try that too.
Susan
01 Feb 2011, 10:05
I was diagnosed in October 2010 with sero postive rheumatoid athritis. This was after exetensive testing at the Mayo Clinic. Although Sjogren's and Lupus SLE were often mentioned my rheumatologist has never stated that I have either of these for sure. I started out with Plaquenil 400mg and a burst and taper regime of Prednisone and also Caltrate with vitamin D twice a day. When the prednisone ended my joints became more inflamed, stiff and sore so I was started on Methotrexate 15mg (oral) just this past week taken once a week. (This has made me naseated)I live in Minnesota and we are experiencing cold weather. I find myself at home often instead of work and that gets frustrating because I have employers that think I am "faking" how I feel. I would never wish this on anyone but it would be interesting to see how they felt roaming around in the bitter temperatures with this problem. I also go to the gym three times a week and keep moving on the SciFit Rex machine. This has seemed to help my legs as long as I don't work the machine too hard and I will be so brave to say it has helped with the fatigue some. I also quit smoking. My rheumotolgist was very kind and did not scold but simply stated that the smoking would not help my medications work. So after 30+ years I ditched that nasty habit. It wasn't as hard as I thought it would be but I do miss it.
I've made many changes in order to fight this disease. I am 49 and I do not want to become "old" before my time. I am just so frustrated because a year ago I didn't even take a tylenol and now I am eating pills all week. Is there ever relief? I feel I haven't found anything that really is changing much. My stomach hurts now because of all the pills and sometimes I feel like giving up hope and just taking the the disease that the good Lord for an unknown reason to me has given me and going with it. Has anyone found anything better than what I am taking for mediation? Mine seem to be the "norm".
Sharon
13 Jan 2011, 10:22
As a fairly long term (8+ years)RA sufferer, I was glad to find this site. I often find the the comments of the people dealing with this condition are more helpful than the irrationally upbeat"you can do everything" articles.
I've been on methotrexate injections for probably 6 years. (The pill made be nauseous.) I follow that with leucovorin the next day, and arthrotec 75 am 50 pm. I get multiple shots of cortisone throughout the year and take prednisone for the flare ups.
Lately, the flare up have been much more frequent. Dr. said add plaquenil. I checked out the side effects and the sites said it could cause psoriasis flare ups. I have psoriasis and really don't need yet another difficulty. Does anyone know about this possible side effect? I'm also wondering if you need to change the NSAIDs from time to time?

I saw above that someone started minocycline. I was just started on that too and there seems to be some functionality improvement(hands still all swollen up but they work better.) If you haven't found it already, there is an entire site dedicated to the use of minocycline(www.roadback.org). Lots and lots of information.

Also saw above, several people praising the biologics. If they work, they are a miracle, but there are serious side effects. Embrel was the first thing my Doc put me on. Buried in the 40 page side effect notice was transverse myoletus. Got a mild case with my second dose and have never recovered(it's nerve thing, pain and creepy-crawlies on one side of my body).Please research and carefully conisder what the doc is pruposing.
PENNY WALSTON
12 Jan 2011, 14:59
IS ANYBODY ON MEDS FOR ULCERS?MY HUSBAND HAS RA AND WAS ON METHOTRXATE,PREDNISONE,HUMIRA,CIMZIA,PLAQINEAL,ALEVE AND FOLIC ACID AND MY HUSBAND GOT AN ULCER THAT ATTACHED TO HIS INTESTINES THEN BURST.HE WAS IN THE HOSPITAL FOR 30 DAYS.HE LOST 1/4 OF HIS STOMACH, 4 IN OF HIS LARGE INTESTINES AND 2IN OF HIS COLON.I WANT EVERYONE TO KNOW GO GET TESTED FOR ULCERS.IF YOU ARE ON THESE MEDS YOU WANT NOTICE ANY SYMPTOMS BECAUSE THESE MEDS ARE FOR PAIN.PLEASE ASK YOUR DOC ABOUT CHECKING FOR ULCERS IT JUST MIGHT SAVE YOUR LIFE.MY HUSBAND ALMOST DIED AND NOW HE CAN'T TAKE ANY MEDS BY MOUTH.
Jenn
05 Jan 2011, 21:13
I am a 37 year old woman who was diagnosed with RA in June of 2010. I am currently on Plaquenil, Methotrexate, Folic Acid and Celebrex. I have been weaned off of the steriods which seemed to give the greatest relief. I also have Raynauds Syndrome so I have recently begun taking ProCardia as well. I still have pain and am growing so very tired of taking medicine! Does anyone on this forum have RA as well as Raynauds Syndrome? Has anyone tried yoga and or have any suggestions for exercise?
Gracie Rose
20 Dec 2010, 18:46
Our 15 yr old daughter was diagnosed with AS last week with a positive HLA B27. She has had joint problems all her life, but we have a connective tissue disease so thought it was that. She began Methotrexate 25mg by injection Sat. and will begin Enbrel soon.

Your thoughts?

We are new to this but not to medical as we have several children with serious medical issues. She also has Type 1 Diabetes and several other diagnosis.

Thanks
jan
19 Dec 2010, 06:31
Hi Kim,

I feel for you. MRSA is a terrible thing and with everything else you've got going on there's not much that can be done.

My two-week bout of Pristiq put me over the edge and I'm at the point, NO MORE MEDICATION; I'm tired of feeling like crap all the time, I'll just deal with the pain. And since I've taken this attitude I'm much happier. Plus my rheumy is afraid to put me on anything else because of my reactions.

So the only suggestions I can make would be to try to eat stuff to pump up your immune system to at least keep you healthy.

Try your best (I know this can be hard) to keep a positive attitude and a good sense of humor and don't worry that you've become a couch potato which was the hardest thing for me. I felt/feel so useless, but I do what I can and when I can't do anymore I don't. By giving myself the down time I do much better than if I push myself, by taking a rest, even if it's ten a day, I can do more because when I overdo it I end up in bed a couple of days, so I've learned. And when people comment on the way I walk, I just joke and tell them, yeah, today I got that board shoved up me sideways, which usually gets a laugh, which is the best medicine in the world.

As for the pain you live with if possible, try to keep pain medication at a minimum; use ice packs, heating pads, epsom salts baths, rice packs that can be heated in the microwave, if possible try to do some stretching exercises throughout the day, and when you absolutely can't stand the pain, lay down and take a nap; if it takes six pillows to get you comfortable, use them! My poor husband has slept on the couch the past five years because I need the whole bed to get comfortable.

Also, a heated mattress pad is wonderful. I wake up stiff every morning, but the constant heat throughout the night seems to help; at least my muscles don't feel as though they want to cramp when I get up.

I hope this helps.

jan

Kim
08 Dec 2010, 11:16
Hi. I'm really new to this. I have had Juvenile rheumatoid arthritis nearly all my life. Now I have Osteo arthritis and neurofibromialgia and I have taken all those drugs that you have mentioned for most of my life and now can no longer can take them because they have ruined my immune system. You see last year I caught this disease called MRSA and it ate away at my foot from the inside out as well as my nose. I now have a deviated septum and an amputated portion of a foot and no chance of taking any drug to relieve the pain for these diseases. Do you have any suggestions? The Doctors don't. They say any drug they put me on will lower my immune system and cause the infection to come back, see it's been back twice. What ever suggestions you can give would be great. Thanks. Kim
jan
03 Nov 2010, 16:30
Hi Pat,
I'm a 53 yr old female, and was diagnosed with ankylosing spondylitis, but I never told my dr I was having problems until April 2008. I just thought being a clutz was catching up with me. I carry the HLA B27 gene, as well as my daughter and my oldest brother--brother is off and on in a wheelchair, 50 yrs ago my grandfather was confined to one. Mine started about 15 yrs ago with my shoulders and lower back aching, then the hips started, but everything got worse when I was rear-ended in Aug of 2008. I now walk with a limp due to the hip pain, and have a hard time sitting because of the back and hip pain, so I had to quit my job. To date I have been on Sulfasalzine, Methotrexate, Humira, Cymbalta, Lyrica, Neurontine, Enbrel, and Savella with side effects ranging from kidney infections, respiratory infections to severe constipation, due to the lack of intestinal motility because of the massive abdominal adhesions I have from numerous surgeries. I've had an injection in the lower back and in the hip, with no luck. Both doctors, family and rheumy, said I should have complained years ago, that the damage is already done. My regular doctor started me on Pristiq today, not for depression, he explained something about the neuro transmitters in the brain, so time will tell. Hopefully, you won't have any problems with the medication. But do give them a chance. I have low resistence to infection anyway, and some of the meds lowers it more. In talking to my rheumy dr, he said some people just can't take the medication, and I'm one of the unfortunate ones, I guess. Wish you the best of luck.
Diane
29 Oct 2010, 21:41
This is the first time that I have encountered this comment forum and found it not only interesting but also informative. I too have tried Plaquenil for arthritis issues that are inflammatory and degenerative in two of my fingers. My RA tests have been negative. I am fearful about continuing Plaquenil whose positive effects were not outstanding in my case. I found that taking either a product like Advil or Celebrex helped my pain and stiffness. Also a number of my friends encouraged me to not take Plaquenil due to possible side effects on the retina. I was having check-ups with a retina specialist who didn't note any side effects although I felt that I was noticing some changes in my eyes. I discontinued the Plaquenil last March and seemed to be going through a remission. My rheumatologist left the decision up to me. I still see him regularly. Unfortunately with the change of seasons, I am experiencing more pain and stiffness. After reading the many comments which include very few negative descriptions of side effects from Plaquenil, I am considering trying it again and perhaps at the increased dose that my doctor originally suggested: twice a day. Some of you recommended removing sugar, wheat and dairy products from your diet. Does this really make a difference? I am also trying to introduce Lovaza into my vitamin regime on a regular basis. I guess I am lucky in that only my hands are really affected. The knuckle on my right index finger is rather enlarged and not as flexible, but that seems to be my only problem area. My daily routine has never been compromised. Thanks for all the sharing and advice. I may try the Plaquenil again. I guess we live with these issues and deal with them on a daily basis. And many of you deal with multiple issues.
Donna
27 Oct 2010, 11:59
I was diagnosed with undefined inflammatory arthritis in July upon positive blood test results with inflammatory markers and symptoms of increasingly severe joint pain that had migrated from different joints over the previous year. I was prescribed plaquenil - 400 mg/day as well as cortisone injection. At that time I also chose to modify my diet by eliminating sugar, wheat and dairy. I have seen amazing results over the last 3 months - all joint pain is gone and I have lots more energy and have lost weight. It took me about 2 weeks to adjust to the diet but after that it became much easier. I do occasionally have small sweet treats but the majority of time I stay away from all processed foods and it is making a difference. I'm sure the plaquenil is part of the equation also.
Ariancita
27 Sep 2010, 16:43
I am a female diagnosed with Ankylosing Spondylitis 6 years ago. My doctor put me on sulfasalzine and it has worked miracles. I took 2000mg a day for 3 years, then went up to 3000mg for two years but found it didn't add any benefit and I actually seemed to get worse. I went back down to 2000mg and that seems to be the sweet spot. I know a lot of people can't tolerate it, but if you haven't tried it and are suffering, maybe consider it. It's one of the older drugs and for those for who it works, it seems to be particularly efficacious.

And I'd like to add that I had a very severe onset (triggered by dysentery from working in a developing country) with aggressive symptoms (jaw pain, sternum pain that restricted breathing, could not walk at all, hip pain, fingers swollen, sausage toes, back pain), and the sulfasalazine actually counteracted the symptoms very quickly. I went from losing the ability to walk (because of pain and spasms) to resuming running and standing for long periods without back pain.

One strange symptom though is that my immunity has actually increased. It's supposed to be an immune suppressant, but not in my case. I used to get every single cold and flu that went around, but in the 6 years I've been taking it, I only had swine flu which lasted only 2 days (I went through the entire spectrum of symptoms in two days). Also, I do get iron deficiency anemia now, but experience no other side effects.

For fatigue, which this medication does not help, I've found great luck in taking spirulina (at the highest dosage). It's given me back more energy and elevated my mood. So if you think you can tolerate a sulfa medication, try asking your rheumy. For those who can tolerate it, it seems to work excellently. Good luck!
Holly
25 Sep 2010, 20:48
Christa, you can switch over to a prenatal vitamin for your folic acid and get the benefit of better hair worked wonders for me and cheaper my doc put me on 2 a day. do bad the hydrocloriquine didn't work
Christa
29 Aug 2010, 06:23
I start with the Methotrexate 6 month ago(2.5 mg) 6 pill weekly with Folic Acid. I'm doing much better and no flares up or swelling. Only thing is that I starting to have thin hair. I just saw my Rheumatologist and see if I can increase the Folic Acid and he won't do it. I asked about adding Fish Oil but I forgot to ask how many a day. Anyone could suggest how many a day. I would like to start that.
Hemant
14 Aug 2010, 20:02
Hi,

It feels "at home" this forum. I have been reading, and feel my experiences may have something to contribute and spark discussion.

I've been "diagnosed" with sero-negative undifferentiated polyarthritis - which is sort of just a label because I have inflammation, multiple joints, but tests did not indicate RA, lupus, and various spondyloarthitis.

All this started about 10 weeks ago. I had some dental surgery under general anesthesia, then a week later severe diarrhea, and following that stiffness and pain started in mid-back, spread to lower, hips, R knee, R palm, L elbow.

Then i went to see a rheumatologist, switched my Ibuprofen to Nabumetone. Took that for a few days, then my hip/knee pain went to 10 on a 10- scale, at which point he put me on 30 mg prednisone. Did wonders, except pain returned as we tapered towards
zero. In 2 weeks. Also got a new joint ( L ankle). Then he put me on Meloxicam (Mobic), which did wonders on my critical hip/knee, but failed to address other joints. At the next visit in mid-July, my CRP was very high (10) and so he thought I need to go on DMARDs right away - either Plaquenil or Methotrexate.

I'm concerned about 1) the need to take the lifetime, 2) the low probability for any one of the long list of drugs, that it would actually work, and 3) all the sided effects.

So, I started a course of homeopathy (16 years ago, this doctor treated me, when I had had 11 years of severe back, hip, knee problems - and I've been fine until now). But this time i had to consult him over the phone. I also did a major diet restrictions ( cut : citrus, ,sweets, and limited wheat and dairy) - thigh my regulate diet was already very "good". I'm also taking fish oil supplements, MSM/chondroitin/glucosamineand occasional Vicodin.

Where am I today? When I started this treatment 3 weeks ago, my knee, elbow, finger, ankle problems varied in a 2-5 range on a 10-scale. Today Id put my pain at 1-3. My last two CRP levels were 4.3 and 3.9, high but down from 10 earlier. ESR is still high at 60 (earlier 21-31) but i understand it's a delayed response. Ankle swelling limits my walking and
standing, and Elbow swelling, pain is also restrictive. But i exercise in a pool 70 minutes every day, have resumed bicycle to work.

I want to try this out another 5 weeks. If inflammations lasts, then I have to consider the DMARDs. Though if it is mild, as its been lately, i wonder what the risk of joint damage is. does anyone understand how and whether the risk correlates with the severity of inflammation?

Do any of you consider alternative treatments?

Cheers,

Hemant



Marjie
04 Aug 2010, 08:07
In response to request from Sue for thoughts on Plaquenil. I have been on Plaquenil for a couple of years and it seems to be keeping my RA pretty well controlled. I haven't noticed any problems with it and my eye exams have been fine. I have been treated with other drugs, and even though they worked well on my RA, I developed side effects which led to their being discontinued. (pneumonitis from Methotrexate, abnormal blood tests from Arava). I still have stiffness in joints in AM, and pain in ankles and tops of feet, but all-in-all, I can do most things, at least for a while. The thing that bothers me most is the fatigue. I know that is one of the RA symptoms. I get plenty of sleep, but some days I just can't do much. This keeps me from being as active as I should be. Very frustrating! I occasionally use Ultram for pain if it becomes annoying. I've been diagnosed for 13 years and have a very good Rheumatologist.
Sue
20 Jul 2010, 22:20
I have been having increasing degrees of morning stiffness and also night stiffness and pain pretty much constantly. This has become increasingly problematic over the past 2 years so that I was having to take advil and/or aspirin every day.
My doctor wants me to go on plaquenil. I am concerned about the long and short term effects of it. I also take two tablets of ultram daily for pain which helps a great deal and also 2-4 tablets of nordic fish oils and one tablet of flaxeed oil as well as try to each more fish. I find the fish and flaxeed oil make a huge difference in feling better and if I stop taking them, the difference is immediately noticeable.
Please let me know if anyone has any thoughts on the negatives or positives of plaquenil.
Betsy
06 Jul 2010, 13:14
I'm very upbeat, active and hate complaining, but need an "RA family"!
After having both hips replaced 3 years ago and a lifetime of back pain, 10 years of knee pain, etc., I was diagnosed 2 years ago with not only osteo-arth but also RA.(my second auto immune disease-thyroid disease was first) Started two years ago with our beloved Pred. and 10mg Methotrexate per week. Flares were treated with Pred dose packs. New doc doubled the meth last Aug. to 20mg per week. THREE mos. later, my hair started falling out noticeably. We lowered metho to 10mgs(each pill is 2.5). 3 months later, flares started up. We increased to 15mgs. Hair not really growing in, not falling out as much, but still losing more than i should, still having some flares. He is asking ME if i want to start adding biologics. ADVICE???
Jamie
13 Jun 2010, 22:46
Two months ago I was diagnosed with mono and pneumonia. At that same time, I also started having severe muscle stiffness and joint swelling/stiffness. I couldn't move. I couldn't roll over, go to the bathroom or anything. I was put on short courses of Prednisone and oxycodone.

Finally I went to a rheumatologist, and it turns out I have psoriatic arthritis. She put me back on Prednisone (20mg a day) and wanted me to do some thinking about starting up on Methotrexate or Sulfasalazine. Scary.

If anything, I have a lot of questions for her. This forum has been amazing to hear the different stories about all the DMARD drugs. It looks like no one is better than the other.
Sharon
02 Jun 2010, 15:42
I have been on oral methotrexatee since the mid-1980s and have done remarkably well (along with other drugs over the years). Last year had abnormal liver tests and had to keep cutting back on it until finally had to stop it completely. Six months later having some joint discomfort and swelling occasionally. Started sulfasalazine recently (was on it years ago)but had migraines so had to stop. I think methotrexate is a pretty safe drug considering I was on it for over 20 years with no problems until recently. I am also on Enbrel injections weekly and 4 mg of prednisone daily. Unfortunately, if you want to have good quality of life you have to take these kinds of drugs. I work full time and can only remember missing work for a flare only once or twice during all this time. My right wrist was permanently damaged before the arthritis was under good control, but other than that my joints look pretty normal. I have had RA for 25 years. Good luck to all with your treatment.
lea
19 May 2010, 12:09
Please, anyone that will be or already has started taking methotrexate, hear this!!! After being diagnosed with RA, I began treatment about every 3 months with steroid injections in my back, knees, and ankles. With that I took Plaquenil 200MG 2 times daily and methotrexate injections weekly. It helped my arthritis, but, I was not told of the potential side effects. I was told the methorexate might affect my immunity. I took that to mean that I might be more likely to catch a cold or flu. I did very well that winter. Didn't have a cold or flu for the first time in years. RA was better. Six months later my achilles tendon ruptured completely. I had surgery for the tendon repair, which my orthopedic said went well. But, the repair did not heal properly. My 3 inch incision soon became a 6 inch by 2 inch wide wound, after having to cut out the dying tissue. My foot was literally rotting off. Fortunately due to an excellent wound care specialist and 43 days in a hyperbaric unit a skin graft and excellent wound care twice weekly for several weeks then weekly for following the 7 months, my foot was saved,but will never be the same. I was unable to put any weight an it for 7 months. Am now in physical therapy. The orthopedic feels the rupture is a result of possible "nicking the tendon" when the rheumatoligist's nurse practioner injected the steroid just behind the tendon. The fact that I didn't heal was probably a result of the methotrexate. Be aware. I thought I was doing what I needed to do to prevent further joint damage and starting treament soon as I was diagnosed
with RA. I was being treated by a rheumatologist. I thought the doctor knew what he's doing. That's why I was seeing a specialist. Despite the fact the RA treaments worked, I don't believe it was worth it. Now I have even more pain than ever. Beware the side effects are worse that you may think.
Barbara
11 May 2010, 02:49
I've been treating RA since 2006...I refused Methotrexate but finally started on 5 pills per week 2.5mg each followed by folic acid the following day...this was added to plaquenil 400mg and predisone 5mg a day. I was also on salzafaline which was stopped recently after starting antibiotic therepy of 100mg of dozycycline hyclate which has really helped..hopefully I will be taken off of plaquenil next...I also started on juice plus 3 months ago...for the past 3 weeks I've been feeling better with just an ache in one ankle. I pray it will stay this way. some days I have nausea which I take a ginger pill (it works) I rest when tired but for the most....I sometimes forget how bad it was......good luck and remember everyone is different and you may never get as bad as some you read about but there is a set of the drugs that will help you to remission
loeta
10 May 2010, 16:14
Regarding Methotroxate: I tried this medicine several years ago and it did make my hair fall out. Once I stopped taking it my hair grew back. As with any medicine, everyone will have different experiences. Best to try and see, rather than suffer.
ddsugarbear
10 May 2010, 11:13
I am 53 yrs old and was diagnosed with severe ra 3 yrs ago. I lost my home, job as a mail carrier, lived in fl and had to move back to pgh to live with my sister. This is an awful disease. I take Enbrel shots weekly, 25 mgs of methotrexate, mobic, predisone (5 mgs day) and now just diagnosed with fiber.....and they want to put me on Lyrica. I asked my doctor about the side effects of all these meds and he sd that if someone in his family had it this bad, he wouldn't worry about the side effects. The methotrexate makes me so sick every week that I take it, but my dr tells me that I don't have any choice. I find that hard to believe. These combinations of meds really helped me over the years. Now instead of crawling to the bathroom, I can walk. I hate taking all these meds but they say that I don't have a choice. I take percoset for pain. If you have severe ra, maybe you should try these combos as they have worked for me. GOD BLESS EVERYONE.
Terry
06 May 2010, 16:40
Someone please put my mind at ease. I was just diagnosed with psoriatic arthritis. I only have a little spot of psoriasis on my leg and elbow. I had a positive ANA test with speckled pattern. My numbers were 1:80. I saw the rheumatologist yesterday and automatically she wants to put me on methotrexate.My knee,ankle and hip have been bothering me somewhat, nothing drastic though.Do you feel I should start the medicine now or get a second opinion from another doctor.I am scared to death because I have heard in some people that you can lose your hair.The dosage is (4) 2.5 mgs. a week. What do you suggest ??? And also being very nauseas and tired.
Darlene
20 Apr 2010, 15:38
I've been diagnosed with sero-negative RA.
The doc prescribed prednisone 10mg and methotrexate 15mg with folic acid supplements.
Blood tests every 4 weeks 9/09. After Dec 09,
I went to 20mg metho. I have not had any serious side effects, just completely tired
and sleepy that day and the next. I'm down to 4 mg prednisone and 2-4 ibuprofren as needed.
My pain is only bad in my right wrist and fingers now. I was terrified to start methotrexate but it hasn't been bad.
Julie
06 Apr 2010, 09:59
My daugher is eleven and was diagnosed with juvenile RA last year. She has been on methotrexate for about one year (injected) and has had NO side effects and has no flares. She is a star basketball player. She has occasional pain in her wrists, but does not affect her day to day life. This drug has a 30 year history and seems pretty benign at her dose. (started a 15, now is down to 12.5)Because the drug inhibits folic acid, you cannot get pregnant (not a concern for her) For us, it has been a real lifesaver. I do know that if you have Epstein Barr virus, however, that taking methotrexate can increase your risk of lymphoma so before starting the drug, you should be checked for that.
Kacey
27 Mar 2010, 01:58
Hello,

I was diagnosed with RA over two years ago when I was 26 yrs old. I have been on plaquenil and it took awhile to kick in, but it really helped with the stiffness in the mornings. Didnt notice any side effects, but I still have swollen, red, puffy joints and my doctor wants me to start taking methodrexate because my xray showed joint damage starting on my pinky toe. I feel great, I am active, and I am scared to try this new drug in fear that it will make me feel worse, not better, but I also dont want RA to leave me disabled. I am meeting with him soon to discuss the drug. I am going to continue to stay positive and hope in my life time they find a cure! Good luck all!
Margaret Pappas
19 Mar 2010, 06:52
I was diagonised with RA in 1993, have been on several meds, including methtrexate, Humira, predisone and the list goes on. I had a chest x-ray three weeks ago and found knots (Rheumatoid nodules) on my lungs. Then had a pet scan and it was confirmed...my rheumatologist says it is a side effect from the methotrexate..also it is a RA symptom. I have these same "knots on my elbows" very unsightly and if bumped they really hurt. They can be removed but will just come back, so why go to the procedure and expense. The thing with the nodules on my lungs ( and if you are on meth)
please have x-rays every year...they will interfere with my breathing and then what???This is very upsetting to me, you think you are doing what is best then it turns around and kicks you in the gut.
Danielle
16 Mar 2010, 11:37
I've been taking Methotrexate for 2 months now. I'm still experiencing some nausea and vomiting every so often. However, I have noticed an improvement. I am able to move around much more easily and I can sleep through the night. I also take Voltaren and get the occasional cortisone injection. I'm 38 and was diagnosed in Feb. with Ankylosing Spondylitis. After years (more than 20) of pain and misdiagnosis it was good to finally get the correct diagnosis. Like many here, I was nervous about starting MTX, but so far the benefits are outweighing the side effects. Just be sure to take folic acid the rest of the week! I see my Rheumy today for a follow up.
C. LynnS
16 Mar 2010, 09:50
I am a 33 yr old female that suspected I had some sort of arthritis. I have been experiencing mild shoulder pain for the last 3 yrs and over the last 3 months my shoulder pain went down my arms, wrist, hands and neck. The pain was so horrible I could hardly open medicine tops, move my neck and fingers became stiff. I finally got in to see a Rheumatologist and by blood work and the symptoms I was experiencing, they treated me for RA. I am on hydroxychloroquine 200mg 2x a day and for the first 3 weeks on predisone for the pain and flare ups. I am optimistic and believe that I will get better one day at a time. It is comforting to hear others stories and know I am not alone; however, I pray that each and every one of you get better and pain is gone forever :)God Bless to all and keep your faith strong.
Beverly
26 Feb 2010, 09:28
Can anyone that has taken placquenil for RA share the side effects they have experienced, in particular...hair loss? Also, how long did it take before hair loss was noticed, and will it reverse when the drug is stopped? I know asking this may sound like simple vanity, but my mother has auto-immune disease and she has dealt with this problem all her life. And since it was many years ago when it began, it has been a true personal and social nightmare for her. She is a much stronger person than I am, and Im not sure I would be able to cope. I've been taking mobic but my RA is getting so much worse and I'm going to need to begin other treatment very soon. I'm trying to look at all my options. Also, does anyone know if plaquenil will help with fatigue? THAT in addition to the pain and stiffness is also MUCH worse and very difficult to deal with. Thanks so much for any info you can provide.
Bella
11 Feb 2010, 16:32
I was diagnosed with RA 7 weeks ago and instantly put on Methotrexate. I take 15mg a week. I was told I should have my blood tested every 4 weeks or so to check liver/kidney funtion. The Dr has not done that and I do not see him for another 4 weeks. Should ask him or even demand a blood test then? Taking the MTX scares me. I feel tired and my blood pressure has gone up dramatically. I also have a lot of nausea. I am 39 yo and trying to learn all I can about RA.
Linette
06 Jan 2010, 01:03
I have been diagnosed in 2007 with RA however I have been on many meds. I am now on Prednisone 5 mg per day, Lodine 800 mg per day and Plaquenil 400 mg per day. I have been on Plaquenil for well over a year and I am still experiencing a great deal of pain. Flares are occurring more often especially now that it is winter and my stiffness and swelling in my hands last most days until well after noon. I was also on Methotrexate 15mg a week but it did not sit well with me. I also suffer from extreme fatigue all the time. Some weekends I do not (and cannot) get out of the bed. And to make matters worse, in the summer when I go out to my daughter's soccer games or I am just outside, the sun causes me to get horrible mouth/lip sores that are very painful. I sometimes feel like I am complaining too much but this is painful and causes me to be just plain exhausted. I have set up an appt with a new RA doctor however that is not until May. That is the soonest I could get in. I am concerned because the symptoms seem to be getting worse and more frequent. I don't know what to do. Help! I see many talking about fish oil -- what is the scoup on that??
Lynne
05 Jan 2010, 15:26
Hello All,

I was diagnosed w/RA a year ago. My Reumy Dr. instantly put me on Plaquenil (200mg 2x day) but also added Fish Oil tabs (6 per day) Vit D & E and SamE. This combo has worked beautifuly for me...no side effects..and no problems with my immune system. I have been in remission for 3 months (no swelling or pain) but now feel it coming back. My Dr. wants to add methotrexate as the next step, I'm nervous about adding such a toxic drug to my system. Right now I'm focused on trying to keep a positive attitude and just dealing with things on a day to day basis! I wish better health to everyone! Lynne
sheila
05 Jan 2010, 11:33
i was diagnosed with RA and am 41yrs old. for two years they just kept on saying it was fibromyalgia. all my blood test came back neg. after research and a new dr. i am finally getting treated for the right thing and am taking Plaquenil 200mg a day and the weather is killing me besides ive been in severe pain for the past few years and can not work. i take neurontin, valium, pristiq, and norco. does anyone have any ideas they used that work? i hate popping pills. my pristiq i do need and valium since i suffer from chronic depression/anxiety from along time ago. i do take fish oil....
cheryl
29 Dec 2009, 17:28
I was diagnosed with RA officially in Oct. this year. Had many tests because no one seemed to have an answer, everything from MS to lupus, then finally the right doctor saw the right blood test and has started to treat me. Only on methotrexate 10 mg. once a week. Also did a round of prednisone which gave relief after 2 weeks. Have had injections in my hips and spine. Lasted about 2 weeks. I'm a mail carrier and now that the weather is cold aches seem worse.
See doctor tomorrow for updates.
Katz
15 Dec 2009, 14:46
Ann,

I am also afraid to have to start taking methotrexate. Fortunately, I don't have to. I've been on Plaquenil for many, many years with great results. It is the safest of all the DMARD's (although some folks don't consider it a DMARD, my rheumy and I do). Even though my numbers were off the charts, you'd never know I had RA if you saw me. I do take Pred. and Advil during flares which are few and far between. Good luck.
Ray
03 Dec 2009, 09:10
Pat,
I have had AS for approx. 55 years and was told by my Rhematologists that I had a relatively mild case. Anklosing Spondilytis (AS) can be and frequently is, a very serious disease, with possible heart valve problems, eye infections and extremely painfully hip/back/ribs/shoulder and neck joint pain. The good news is it tends to do all its damage over a forty/fifty year period and than burns out or goes away. The bad news is that all the damage it caused over that period now starts to flare up as a result of Osteoarthritis and I am once again experiencing severe, debilitating pain with weather changes. This year I had both shoulders completely replaced and my Dr. is now talking about doing surgery on my neck. I am going back to my Rhematologist to see if there is some other medicine that can help and not kill me in the process. There are a number of very helpful medicines but they can also be dangerous to your health/life but, had they been available 30 years ago, I would have undoubtedly tried them. Good luck Pat and hopefully your disease will a relatively mild case.
Kimberley
01 Dec 2009, 16:32
I have had RA since 1969,I was 9years old. I have been on alot of different treatments. Steroids the longest,as back then the docs didnt know much about it. If you stay on those steroids to long it is very hard to get off them. I was taking them for about 30years.I finally got off them, this year. I am on Enbrel currenty and it is working great! Just keep a positive attitude and KEEP moving no matter what.
Lexy
16 Nov 2009, 20:02
I've been recetly diagnosed with spotty RA. My RAF & CCP tests are positive. I had remission for 9 motnhs until October when weather turned cold & rainy. I am on Minocycline 100mg 3 days/week. Has anyone else tried antibiotic therapy? Any side effects?
Mickey
15 Nov 2009, 09:48
Have been on 20 mg methotrexate weekly for about 2 years now and 6 months ago we added Humira. The RA and PSA are reasonably under control, except one hand is useless,but my blood tests just recently indicated a problem. My doctor is now adjusting the methotrexate to a lower dosage.
Cannot stress enough the importance of blood tests if you are on methrotrexate and another biological.
Vikki
03 Nov 2009, 11:39
I was diagnosed with very severe RA almost 5 years ago and with fibromyalgia about 4 months ago. I have been on several of the biologics (Humira, Enbrel, etc) and cannot tolerate. I take methotrexate 25mg injections weekly along with Plaquenil and Arava. I also take Cymbalta for the fibro and depression. All of these medications can potentially be liver toxic, so I do not drink except maybe a single glass of wine on very rare occasions. I take Aleve for pain only if I need to, but I live with the pain for the most part. I stay as active as possible, and even on the days when I don't want to get up, I do, and do as much as I can. I have seen firsthand what the future holds for me, (I'm a nurse) and that alternative is not an option. The thought of being in a body that doesn't work with a mind that does scares the hell out of me. Good luck to all of you!!!!!
Ann
20 Oct 2009, 13:12
I've had arthritis since 1987 or so. After trying many drugs (other than that wonderful Prednisone that they wouldn't leave me on even at a very low dose), we found that Naprosyn worked best for me. Now, 20-plus years later, I'm getting worse and worse. I think the Naprosyn is losing its effect.

This year, my newest rheumie confirmed that I do have RA and wants to put me on Methotrexate, which he says is the next drug of choice. For some reason that drug really frightens me, so I've put off taking it. I've heard it gives you mouth sores, but I'm already dealing with that (which I think is due to the Naprosyn), hair loss, and weight gain to mention a few side effects that I remember reading about. I would be much more willing to try Celebrex, but he doesn't seem to want to go there.

I'm wondering if I should try taking 1-2 Tb daily of flaxseed oil, which I hear is good for RA and constipation (another problem caused by the Naprosyn).
kristine
20 Oct 2009, 13:03
I was diagnosed with RA in June 2009 during a major flare. Ive been on 15mg Methotrexte once a week and have had great results. I actually feel better than I have in years. I was on 5-20 mg of prednisone(on and off) daily for several weeks as well but have been off that for about a month now. My pain is very minimal as I believe the methotrexate is really doing it's job. It took about 3-4 weeks for it to really kick in.
Mike
14 Oct 2009, 03:41
Just digo with ploymyalgia rheumatica. Doc (rheumatologist) put me on prednisone 5 mg 2 a day. And hydroxycloroquine 200mg 2 per day. Don't know much about the polymyalgia or any of the RX for helping the pain. Would appreciate any support and advise you have to give.
Thanks
MIKE
Barb
13 Oct 2009, 17:27
Hi
Was reading all your comments!!
I have RA It's been 12 years and plenty of up's and downs Now with this weather being cooler I feel the ache's I am on Arava and also
Enbrel 2x week I give myself the shot.
Every day is different, when you have no pain enjoy as if it might be your last and you wake up the next day and a flare-up and no use to any one. Prednisone is great the wonder pill also has side affect's I have cataract's. So hope every one finds their way!!!
Think Positive.
Christina
05 Oct 2009, 16:46
I was just diaganosed with RA no one in my family have had RA. I have Been put on a couple of meds. Im taking methotrexate now so far its not working yet. I take 4 pills once aweek.Does anybody now how much longer I have before I get some relief?
Tessie
17 Sep 2009, 12:23
This note is response to Stephanie's note from July 21st. I've been taking Plaquenil for over 4 years for RA and have had no problems concerning a lowered immunity. I started at 400mg plus a steroid pill for about 2 months. I was weened off the steroid. The Plaquenil takes a few months to really kick in. After about a year I started weening myself down from 400mg to 300mg (cut a pill in half) to eventually just one pill. To help with the rumbling stomach issues I take the Plaquenil in the late evening about 1/2 hour or so before bed. That really helps. Unfortunately I've recently went back up to 300mgs and was just prescribed Methotrexate because I've been experiencing a lot of stiffness, swelling and pain for the last 6 months or so.
Ken
15 Sep 2009, 12:53
Joyce,

It depends on your prescription, but methotrexate is not terribly expensive. At Costco, it's $17 for (30) 2.5mg pills. This would last for ten weeks for me. (Three pills a week.)

Ken
joyce
19 Aug 2009, 12:16
hi,
I was just diagnosed with RA two weeks ago.
the Dr. i saw gave me prednisone to take for 1 week just to keep inflam. down. boy does that work fast (although i was off the charts on my titer and i am RA+ he said i had a normal range sed rate-- of course i finally got in after a horrible flare was over.
I am uninsured and make too much to get assistance, I hear the meds are very expensive, i have yet to get into a Rhumatologist. anyone tell me the price of meds with no ins???
eg: methatrexate
hell- it's gonna cost from 300 to 650 just to visit the DR!!!

I'm glad there is a support group out there!
thanks
joyce
Pattie
04 Aug 2009, 09:46
I was diagnosed with Psoriatic Arthritis about 7 years ago and am being treated by a Rheumatologist. At first I was given Enbrel and methotrexate. The methotrexate helped with the psoriasis. The Enbrel stopped working so my doctor started me on Rhemicaid. It works like a charm. I go in to the hospital once every 8 weeks and get my infusion. I heard that methotrexate was a very powerful drug and you can not drink even 1 glass of wine ever. Since I like wine I started to ween myself off the methotrexate. I was fine with just the Rhemicaid but I am now having spouts of psoriasis again. I have an appointment with a Dermatologist in a couple of weeks so I will see what he suggests. I don't want to go back on Methotrexate...
Mary K
03 Aug 2009, 09:06
I have a split diagnosis:
Monoundifferentiated arthritis of the rt clavicle. My rheumatologist says likely atypical rheumatoid arthritis OR spondyloarthropy. She is recommending methotrexate.
Prednisone and cortisone injections have provided some relief. My other primary symptom is fatigue.

Is there anything else I should ask or try before methotrexate? Sounds like I would have to be on that for the rest of my life?
Stephanie
21 Jul 2009, 09:34
Hi-

I've been officially diagnosed with RA about 3 weeks ago. I'm an active 36 yr old woman. My mom has RA pretty bad and I just don't want to end up like this. I feel horrible for her because she just can't seem to find a drug that helps.

I've been on Plaquenil for almost 3 weeks and just recently added a 2nd pill making it 400mg/day. Just when my body was getting used to 200mg/day now I'm dealing w/the side affects. I don't like them and I'm really hoping this works. I'm curious about adding more fish oil to my diet as mentioned above. But what I did NOT know what that this drug lowers your immune system.

Anyone have any issues with this?

Thanks,
Steph
khyati
24 Jun 2009, 03:11
hi,I am just 22 and have never taken any medicine before..i got a severe pain in my back and doc suspected that one small surgery may cure it permanently..but i m relly scared of the surgery..should i go for it...
Helen Moss
16 Jun 2009, 16:43
I am 53 years old and i was diagonise with
RA a year ago at first i was put on meteroate
I lost too much weight and then i was put
on humaria it helped alot I needed something
else So i was put on arava I've been taking
it for a week now so far so good I barely
have any pain now I am just looking for
the side affects now I hope It goes ok.
A Daley
16 Jun 2009, 01:44
I was diagnosed with RA back in early 2007. Dr suggested methotroxate originaaly. I did some research and found that Adelaide University did a study on RA and the benefits of taking liquid fish oil.

I spoke to my Dr about not going straight onto methotroxate at first and suggested we try a lower solution to my RA. This was agreed and I went onto Plaquenil and on my own accord I went onto at the same time 20ml of liquid fish oil a day.

Within 3 months my RA improved to the degree that I play golf at least 3 times a week.

I only see my Dr once a year now. At present I do not suffer from inflammation.

I believe fish oil has worked for me and suggest others might consider it.
Laurie
10 Jun 2009, 09:38
I have Behcets, and use a few DMARDS. I find alot of support with YAHOO groups, lots of others can share and support. Great support communities there.
Laurie
pat
02 Jun 2009, 20:11

Hi. I just found out I have Ankylosing Spondylitis. Is there anyone out there who has this? I never heard of it until now, and I would like to hear from someone who has it also.

thanks,
Pat
Shelly
02 Jun 2009, 18:50
No, J. Kato you are not the only man with arthritis. My husband has arthritis in his back. He has had three back surgeries and the doc suspects that is where it came from. They haven't told him what kind it is, and I suspect we'll never know. He's only 31, but after all these surgeries it seems par for the course. If I were you I would educate myself prior to the next appointment (it looks like you already are), write down questions you have for the doc so you don't forget them, ask the doc what tests could be ran to see if it actually is arthritis or a pinched nerve, then insist she run the tests she tells you about. See if there are any tests suggested online. If you are not happy with the results of your next appointment it might be time to seek a second opinion if that is at all possible. I know it hurts and I'm so sorry. I hope this helps even a little bit.
Shelly
J. Kato
30 May 2009, 05:15
Ok... My spelling isn't very good and its just after six am... been up all night. Now... To correct a post I made a few minutes ago (somewhere else I think), Here goes...

Excuse me, BUT... Am I the only man on earth that has arthritis? I certainly do not mean to offend anyone, but I'm feeling a bit alone here.

I have recently been told by my doctor
(a woman) :O) at the VA that I have arthritis in my back.

I have no idea what kind it is, and I understand there are over a hundred kinds it could be. In many cases of arthritis, they (doctors) don't have a clue as to what causes it.

About three months ago I began having severe back pain. It is now also in my left leg and foot and my right foot. It has began to affect my back and neck also.

One doctor said I had a "pinched nerve" and arthritis.

I have been given Ibuprofen and methocarbamol and a heating pad. It helps some, but not much. I am to see my doctor this June 22nd for father evaluation. Any suggestions? :O)

Peace to all... Jack
Anette
19 May 2009, 18:32
Even a fue shot can give a flare-up. Didn't have enough info.before i had my annual flu shot. I was also just diagnosed. Do not get any vaccine before talking to your Dr.

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