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Simponi Approved to Treat Three Kinds of Arthritis

By Brenda Goodman

04/24/2009 Federal regulators on Friday approved golimumab (Simponi), a new biologic drug to treat rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis, conditions where the immune system attacks the joints causing pain, stiffness and restricted motion.

In announcing the approval of golimumab, a once-monthly, under-the-skin injection, Food and Drug Administration officials noted that the new drug was intended to be used in combination with methotrexate for cases of moderate-to-severe rheumatoid arthritis and alone or in combination with methotrexate for cases of active psoriatic arthritis or active ankylosing spondylitis.

Golimumab belongs to a class of medications that block tumor necrosis factor-alpha, or TNF-a, a chemical signal for inflammation. Like similar medications, golimumab will carry a boxed warning about the increased risks of tuberculosis and invasive fungal infections associated with its use.

In a press statement, Bob Rappaport, MD, director of the Division of Anesthesia, Analgesia, and Rheumatology Products in the FDA’s Center for Drug Evaluation said that approval of golimumab offered another treatment option to people who live with “these three debilitating disorders.”

“And the steps we’re taking to minimize the risks will give patients the same level of safety protection required for other drugs in its class," Dr. Rappaport said.

In clinical trials, the most common side effects reported with the use of golimumab included respiratory infection, sore throat and nasal congestion.

The SmartJect Autoinjector, a more patient-friendly take on the classic syringe, which will be sold along with the drug, has received the Arthritis Foundation's Ease-of-Use Commendation.

Dani
23 Oct 2011, 15:04
Have been reading all the posts. I am 51 years old and for 26 years have been experiencing so many health problems. Recently diagnosed with Hashimoto's disease, I already had fibromyalgia (that is what has been said all these years) I am on 15 different meds a day and still not functioning well. My rhematogist is leaning towards Psoriatic arthritis and lupus, I just wish that he would decide and get me started on the meds for it. It is so hard just trying to function like this. My pain levels are almost more than I can bear and the pressure on my husband if I can not continue working is overwhelming him. Please pray for us as we walk this journey. I don't want to drag anyone down.
antonietta
01 Sep 2011, 09:26
Hi, i have AS. I was diagnosed last september and i havent had a normal day since. My doctor started giving me anti inflamatory meds galore...still no relief. I've had many trips to the hospital for umbareable pain. He then made me start simponi and honestly it ain't working. I have bad side effects and the pain is still there. I take morphine daily every 4 hours. I at the point now of considering having the the total hip replacement to solve once and for all this problem that has ruined my life. I will have pain at first from the surgery but it can only get better. I dont know why they call simponi the miracle drug, i find its just another way for pharmacutical companys to make their money. I pay 1700$ a month for this dumb medication and for me its a waste of time.
Prancer
18 Apr 2011, 17:40
Hello I have had Ankylosing Spondulyitis since age 16, diagnosed at age 18. The gene is HLA-B27.

Any way The NSAIDS only caused sever depression with me and as I am asthmatic I would have difficult breathing every night and alomst forced to go to hospital due to the asthma attack.

Now I am supposed to have Simponi injected once every month and am scared S....!@$&*#@&$*# less because of the side effects. They say it is new and improved but I don't know if they are lying or telling the truth. Is the government trying to bump us off because we have this disease and they don't like to have people claiming disability tax credits. I am so worried and almost parinoid. Is this chemical war fare... You never know and if any one has any feed back on this subject of Simponi over 6 months treatment let me know. I would appreciate it very much.

Geesh it is scary to think you could die from complications while supressing the imune system.

Thanks

Prancer the other raindeer.
Judy
26 Dec 2010, 20:28
Has anyone considered Stem Cell Therapy? I've had RA for about 25 years...been on lots of meds....just started on Simponi, was on Embrel for years....but didnt seem to be working anymore...just had my first injections of Simponi hope it improves my life.
Dian
15 Sep 2010, 16:11
I can relate to almost all of the comments. I was diagnosed with RA over 10 years ago. I was put on several different medication in addition to methotrexate. None of the pills worked enough to give me any relief. I then went on Enbrel with methotrexate. That worked really well. About 3 years ago, the methotrexate began to kill my bone marrow, I became really anemic and could no longer make new blood. They took me off the meth. immediately. I was then put on Remicade. It worked pretty well and made it manageable (along with my percoset), but I could sure tell I was no longer taking the methotrexate.

In June of this year, my potassium went dangerously high. I was give Lasix for 6 days in a row with no potassium which I normally took with the Lasix. That seemed to solve the high potassium. However, the next month, my creatanin was up. We waited 2 weeks, tested it again, and it was soaring. I was sent to the hospital, tried several different medications and was diagnosed with End Stage Renal Disease. When I was placed on dialysis, I could no longer take my Remicade. The dialysis would filter out the Remicade along with the other toxins. My alternative was Simponi. It has a different cell size and the dialysis would not filter it out. My doctor gave me one shot in August. I secured an exception from my insurance (Plan D) to cover the drug Simponi as it was not on their list. However, I am on Medicare, with Plan D coverage, and since I have so many medications, I am in what they refer to as the "donut hole". That means I have to pay the full amount for the drug. When finding the cost I was quoted $3000.00 for the one shot per month. Sorry folks!! Don't know how very many average Americans can afford this. If you have insurance coverage (I pay a lot for my "Plan D" coverage) be grateful! Guess I'll see how my RA reacts to at least 4 months of non-medication.
Rosemary F.
30 Aug 2010, 21:48
I was diagnosed with RA at age 19 (in 1966) and treated with high-dose aspirin & gold shots. I went into remission until 2001. I've since been treated with Remicade (2 1/2 years) then Enbrel (5 years) until they stopped working. I'm now about to take my 2nd dose of Simponi. Contrary to my rheumatologists's estimate of 3-4 weeks before I would feel any effects, I felt somewhat better in 3-4 days and have continued to improve. I have also been taking Arava (methotrexate did nothing to improve my symptoms and made me vomit 3 days out of 7, nausea for the rest of the week) and Medrol, which I tolerate better than prednisone.

I had a good run with the 5 years on Enbrel, I'm hoping for at least that on Simponi. My first rheumatologst in 2001 did absolutely nothing for me; my current MD is a treasure. If you're not happy with your caregiver, try again. There are terrifi rhematologists out there.

Courage, mes amis.
Annette O'Neill
24 Jul 2010, 02:44
I was diagnosed with Ankolysing Spondylitis 2 years ago. I now have a good Rheumatologist. I am taking Meloxicam for the inflammation and Tramadol for pain. The best thing one can do for chronic inflammation is to eat a very low fat, high protein diet. This has helped. I also take fish oil, ginger and turmeric supplements. They help inflammation without any side effects like the drugs have. All immnosuppresent drugs suppress the immune system and put the disease into remission. They do not cure these diseases and there is still tissue damage from the drugs in the long run. There still are not many answers to those with autoimmune diseases.
Chris Mckay
08 Jul 2010, 22:17
Hello to everyone,
I got some wonder news today, I am being put on Simponi,probably will take a few weeks before I get my first shot. I have had RA for 10 years, using methotrexate with poor results along with sulpha salazine and arthotec. Will keep everyone posted.
Patty
06 Jul 2010, 12:47
I am 50 yrs old and have Fibromyalgia, RA and Raynaulds. I was diagnosed with Ra 3 Yrs ago and they started me out on plaquenil and sulfasalizine for the RA. I failed getting better with those, so my Dr. added Humeria. I tryed that for 8 mos, didn't work so we tried Enbrel, that with the other drugs works longer. About 6 mos ago, things started going south again. She then tolf me about SIMPONI. I had my first injection 2 weeks ago, so far I am liking it. I did have about 3 day of nausea, the first day it was very bad. I take about 22 pills daily for all my illnesses. I just want to say to all of you suffering...HANG IN There!! I feel for you. You just need to find a kind and understanding Dr. and be willing to try different combinations of drugs. Its not fun this the added side effects on top of the pain, but I am having better days. Good luck to You all.
Patty
13 May 2010, 09:57
I have had RA for 20 years and tried mostly all the medications. I just had a shot of Simponi for the first time last month. I have had bad reactions to most drugs, but I had a very bad reaction to Simponi. Nausea,chest pain,body aches, stomach pain,bladder infection, headache,itching, thrush.I will not take Simponi again. The effects lasted a good part of three to four weeks. Anyone else have a problem with Simponi?
Matt
25 Apr 2010, 11:43
I am 60 yrs.old have had psoriatic arthritis for past twelve yrs. I was on placquinal and other milder drugs for the first couple of years with varied results .When the bio's came out I when on Enbrel with great results.Recently began to have flares again and was told might have developed some antibodies to the drug.I am now researching what my options might be if I have to switch to another drug.If anyone has had a similar experience and could shed some light on the subject I would appreciate it.My heart goes out to all of who suffer with these diseases.
Renee
18 Apr 2010, 01:45
I started being in great pain in my back,shoulders,hips,knees,tail bone,wrists since July of 2008. I went to a chiropractor he made matters much worst for me.As of June 2009 I have become a cripple need a walker to get around. I hurt to sit,stand,lie down on right side or left. I cry a lot can not drive, wash my floors on my hands and knees. My husband does the house work except for cooking, washing the clothes. I have ostro,hernated disc,degenerated disc. I will be doing a needle test in May twice to test for nerve damage, I have read up about this test that it hurts. I hate needles so scared. I use to weigh 107lbs now over 155lbs I would exercise 5 days a week for over a hour, can not do this now. I was wearing a size 6-8 pants, small tops,size 4 blouse. I now wear a size 16 pants, xl top. I have dry mouth and the tongue burns. I am 57 years old this all started at age 55 years. My husband and I loved to travel and ride a Harley well do not do this anymore. I do not sleep more than 2 hours in 24hrs.Just reading about others what they are going through makes me feel like I'm not alone. My husband says quit complaining, other people hurt too you are not the only one. I saw a surgeon in 2008 he said no surgery to help, seek pain management. They wanted to inject in my back a steriod.
Nancy Straughan
06 Jan 2010, 10:42
I started on Simponi today so will keep posted to how it works... This is the first biologic for me.
Mary Jane
22 Dec 2009, 16:31
Back in June I wrote about my asthma issues and being told it wasn't caused by the Orencia I was using. When I wasn't getting better I voluntarily took myself off the Orencia in May. I decided not to take any RA meds as I was feeling really good as far as the RA. I continued to cough and in August went to a Pulmonologist. He put me on a drug regime and said I had a type of asthma that was hard to control but that he could do it. In the meantime I stayed off RA drugs and for 5 months was symptom free. This past October my RA symptoms returned. It was at that time the truth started coming out. I found out that I basically was on a drug type remission as it takes up to 3 to 6 months for the RA IV drug to completely leave your system. And I was told by the PA in the office that Orencia has been known to cause respriatory issues. DAH... I previously had respiratory issues from Remicade. But they kept telling me, no, this one won't do that, each drug is made differently even though they use the same ingredients. My coughing is virtually gone. Since I have always had respiratory issues from drugs causing asthma type systems, I truly feel that the Orencia set it off again. I did have to go back on RA drugs as my symptoms came back with a vengeance. But I decided I did not want any of the biological drugs. I was offered Retuxin IV's, I said NO. I researched all the IV RA drugs and everyone of them are made from both mouse and human DNA. I feel it is the mouse protein that I am allergic too. The shots only have human proteins in them. And I never had a problem with the shots when I used them. But I was told once you go off them you can't use them again. I disagree with the Dr. that the drugs are made differently, maybe they are, but the mouse ingredient is there and I am now terrified to even think of trying another IV. So for now I have decided to go with methotrexate and plaquenil. I took it when I first got RA 19 years ago and it worked. I only stopped because they started coming out with these biological drugs. For now I am slowly responding with the RA and until I can't take the pain anymore I am to afraid to try anything else new on the market, as I know they just released some new shots. I know Simponi is one of the new shots, but I am afraid to try anything new right now after a year of coughing. But for someone else, go for it, if you have not had bad reactions to these drugs other than they haven't helped your RA symptoms, try them. They might be your drug of choice for you. Thanks for all the input from my first post. MJ
Anne R.
08 Sep 2009, 21:11
This is for Kim Parsons and Sue Ellen:

I am 46 and was diagnosed with Psoriatic Arthritis 4 years ago, and Fibromyalgia just recently. I have tried Methotrexate(and all it's forms), Enbrel, and Humera. The side effects were so awful I couldn't work, or manage my daily life. Now I only 5 mg. of Prednisone, Tramadol, fish oil. Nothing is working!!! The pain is intense, although my psoriasis has gotten better since I began taking Synthroid for low thyriod. My feet, hands, ankles, 1 wrist, my jaws and 1 shoulder and lower back are affected by the PA. I'm afraid that all my 3 children & wonderful husband will remember about me is that I could never do the things other moms did! I have great hope, however, in the new drug Simponi. A family member was in the drug trial and loves. He has been on it for years and his pain is gone, fingernails grew back, skin cleared up, hair grew back! I cling to the verse..."I can do all things through Christ who strengthens me..." Am praying for all of us.
Linda
21 Jun 2009, 18:44
This is for Mary Jane.
I was diagnosed with RA 20 yrs ago and was told for 16 yrs that I didn't have RA. About 2 and a half years ago, I kept coughing for months and was told it was just my asthma. Finally, one of my family doctors had me get a CAT scan. What was found was ground glass effect in my lungs and nodules. When I went to the lung specialist he informed me that this was caused by RA that was not being treated with immune suppressing drugs and if I didn't get treatment for that, I would continue to have lung problems and be short of breath. I also had heart issues that were because of the RA. I finally got all the doctors to get on the same page and asked for a new Rheumatoid Specialist in the Medical Center, since the one I was seeing was suppose to be one of the top Specialist in the country and she misdiagnosed me. Finally, my new RA Specialist had to start treating me with methotextrate, plaquenel and immuran. My coughing is almost non-existent now unless I miss my meds or have to temporarily stop them. Since the meds the nodules have disappeared and my breathing tests have improved some. I have found because of being misdiagnosed for years that I have extensive joint damage and will need numerous surgeries to fix my damaged joints. I had both kness replaced last year at 54 and my left wrist done a month ago and my other wrist will be done in a few weeks. All of my joints in my feet are destroyed and I have knuckles and fingers that need fixed. If I would have been treated correctly a lot of this damage could have been avoided. I thank my lung specialist everyday for sticking his neck out and getting all the doctors on the same page. I wish I could say that my RA Specialist is 100% behind me, but she reluctantly has to be because the medication is working. In fact, she took my case to study with the other RA doctors and they just say I have an inflammitory disease. I even had hand MRI's done showing that I had extensive inflammation consistent with RA and secondary OA but since I don't test positive on a blood test for RA then I couldn't have it. Seems, that old time RA Specialist 20 years ago called it right when he said that I was one of those people who will never test positive for it in a blood test but still have it. One advice would be not to give up because there is someone out there who will help you and we have to be proactive in getting the help that we need. Don't take no for an answer.



Mary
08 Jun 2009, 22:31
I have been diagnosed with RA since June of 2006. At the time I was 60 years old and RA was just a word. The disease came on my like being hit with a truck. I could not understant the pain...I could struggle to get in a car...at times I could not turn the ignition. I could not sleep in bed...had to sit in recliner chair and somedays could not brush my hair or teeth...it was scary. I finally met a wonderful dr. who has helped me to have a normal life. I first began with 7 pills methotrexate and prednisone...I took that for a few months and then went to Avara...that drug did not do good for me at all...I had the side effects and no benefits so we moved two years ago to Orencia. I agree with the commercial that says Yes I Can for the most part I am pain and stiffness free and have regained my life. With the monthly infusion of Orencia I have cut back to 5 methotrexate. I have blood work done periodically and have had no side effects so far. Recently I had a terrible time with my esophagus and had many nodules removed and my stomach was very inflamed. After biopsy I was relieved that there was no cancer. I was afraid that I would have to give up the nexium and the methotrexate but that was just my thoughts...not reality. I went on nexium and being careful of my diet and so far feeling good. I hope this helps for others...I am grateful for the Orencia and feel blessed that if I have to have this disease that there are so many wonderful medicines to take. as far as the side effects I think positive and I pray but I do want quality of life before quanitity if quantity if filled with days of pain where I can think about nothing else. I hope this helps others. God bless you all.
Mary
Mary Jane
29 May 2009, 16:42
I have had RA for 19 years. My mother had it and now both my daughters have it also. I use gold shots, methotrexate, Arava, Enbrel, stopped to try Remicade and failed it from severe respiratory side effects. Went back to Enbrel, failed it after a long time when I had to go off of it for a MRSA infection. Went on Humira but it didn't work well. Started Orencia and after about the 7th IV I started coughing, a nasty astmatic type cough. I have been treated with inhalers, nebulizer treatments, nose sprays, antihistamines, cough suppressants pills, told I have allergies, asthma, and when none of that stopped the coughing, told I was allergic to my BP med, Lisnopril. I stopped the BP med and started on HCTZ 25 mg. The coughng subsided after about 2 weeks only to return again after my last IV. This has all been occurring in the last 4 months. I cough daily sometimes unable to speak. Did I mention I also had a clear chest Xray. Today I called the RA doctors office and told them I am canceling my next IV. Now I am wondering if I truly might have some kind of respiratory condition, mild COPD that was never diagnosed and the Orencia is compounding it. I know their is a warning on the drug for COPD. I was also allergic to Voltaren XR, dicoflenac which gave me severe bronco spasms of coughing, like I am getting now. I almost died from the Voltaren incident, I was diagnosed with Pulmonary Fibrosis, I researched my meds and found out it wasn't that it was the Voltaren. When I stopped taking it, I got better. When I get a cold I usually get bronchitis or a mild asthma type condition.

I am wondering if anyone else has experienced anything like this while on Orencia? Does anyone know how long it takes for this drug to leave your system? My last IV was May 6th and I am still coughing. I don't want anyone else to go through this, but if their is anyone with similar problems please write in. The RA doc said any problems would have shown up right away, I don't believe that, with past experience on drug side effects they can come on at any time. Please, if you can help me find some answers. Thank you!
Jeanna
27 May 2009, 08:37
This is for Paula. I was wondering why you are no longer on Orencia, if you were doing well. Were the side effects really bad? My daughter is 21 years old and has had RA since she was 22 months old. Currently she is on methotrexate, prednesone and remicade, which are not making a dramatic difference, but some of these side effects are really scary.

Thanks

Jeanna
Kim Parsons
26 May 2009, 22:09
I e-mailed a question to Arthritis Today concerning Simponi and was sent a Website to research. www.accessdata.fda.gov/scripts/cder/drugsatfda/index.cfm?fuseaction=Search. Label_ApprovalHistory

She said it is about 47 pages long and I have just begun to read about the medication. When I first began Enbrel, it was wonderful. After a few years, I stopped responding to it and tried Humira. Humira has not improved my arthritis or psoriasis at all. Of course, I am not supplementing my medication with any other drug. Maybe I should try that and see if I could restore some of my energy. As you know, fatigue is NO fun! I enjoyed reading all of the emails and really like the support. I live in a small rural area and do not have too many people that have this disease. A support group is a wonderful thing!

Kim Parsons
Paula
25 May 2009, 21:54
I'm RA for 23 years; participated in clinical trials for Celebrex, Kineret and Orencia. Orencia left me pain free, able to do most everything; Now on Humira, every two weeks injection; 10 mgs. methotrexate weekly. Doing very well on current meds. Hands are slowly twisting but still type and maintain. Feet painful because of metatarsyl dislocations and loss of cartilage on balls of feet; use various orthotics for walking. But no flares in feet or hands, so that's the good part. I'm thankful for excellent care through the years and cutting edge meds now in use; and that my insurance covers them. Also had fibromyalgia episodes that were almost as bad as RA. Once I started on biologic injections,no more fibromyalgia.
Hang in there, fellow RA's. There's hope.

Paula
Becky
24 May 2009, 13:16
Hi,
This is the first I have heard of Simponi.
I've had RA for 6 years now and failed at Enbrel and am taking Humira now, along with
Methotrexate and prednisone. I hate prednisone, so I will see if my doc will try to switch me to Simponi or Remicade, as I can't get off of the prednisone (which gave me diabetes). My RA affects my hands, wrists and feet.
Jan
22 May 2009, 15:40
I have late-onset RA and freaked when I learned I had the disease. I watched my mother-in-law suffer with it for years. There is no genetic reason I should have it, and I felt sorry my husband who was her primary care-taker at times when he was young as twelve. Anyway what I went to see the rheumatolologist, I knew I would have trouble following what she says, so I bring Phil along with me, and he sits in on the sessions with me so we can compare notes later.

The drugs scare me as much as the diagnosis. I happen to be a chemist/teacher and understand what the drugs are betters than most. I've had cancer twice and opted for radical surgery rather than take chemotherapy. Now I'm learning that a side-effect of most RA meds is some form of cancer. So my health problems boil down to find relief for RA sysmptoms without turning my immune system down so far that it can't fight the cancer cells that are in my body.

I've learned to cope by writing poetry which gets me focused on the beauty in the world. That's where I begin each day.

Catherine
22 May 2009, 10:18
In reply to Kelli...I totally agree with you, it is so hard to figure out RA when you are first diagnosed and seems very scary and daunting. Sounds like you have a severe case and really should be on a Biologic drug. I think it all comes down to insurance and money...like so many things in life! I take Humera now but my Dr. didn't suggest it, I had to bring it up myself. He said "Well..we could try it but it's very expensive". Well too bad!! He did end up prescribing it for me and it helps very much. You need it ( or Enbrel ) and you need to push for it. I almost think Dr.s hands are tied by the insurance companies on this, they can cost $20,000 a year which might just cut in to their profits...poor dears.
You can control this disease and live a good life but you have to get the right help. I too thank God everyday for the people who researched and developed these drugs, they are truly amazing and I do think that one day we will eliminate many of these auto immune diseases.
Good luck to you, hang in there.
laura j. winter
21 May 2009, 23:28
My name is Laura and I'm 61 years old and have had R/A for36 years. 4 knee replacements and all the drugs. I'm on Humira now and doing great. Don't give up!!!! The big thing is finding a great Dr. who doesn't tell you you'll just have to live with it. Not true, my Dr. kept trying till we hit the right combination Hang in there and keep trying And by the way watch out for all the nsaids, I'm having trouble w/ my kidneys after 36 years on them, I'm off all of them now and only taking the Humira and doing great. I even got off the methotrexate, and got my hair back too! Good luck!!
John Jentelson
21 May 2009, 14:41
I was first Dxd with psoriatic arthritis and the associated skin problems back in 1985 or so. My wonderful rheumatologist died about 10 years ago so I switched to Dr. Foad in Cincinnati and he's helpful, too. I take Diclofenac BID and an occasional Vicodin for pain and inflamation. I have couple of herniated discs in my lower back and a torn right quad. The meds only bring mild relief.

I've gone thru two bouts of PT in the last 2 years but they didn't help much. Never had surgery at the advice of good doctors. I see a dermatologist 3-4 times a year for rashes. Lately, I've had itchy hands and arms. I have Rosacea, under control.

I can only do light excercise. I can only stand for about 10 minutes at a time due to my back pain.

That's about it. John J.
CHERRY
21 May 2009, 10:33
I am 49 yrs old and I have RA when I was first told this my numbers was very high i was told i probably had it for a number of yrs..i took methoxetrate buy my liver test came back bad so no more of that..I hated the side effects of the prednisone even though my Dr. kept trying to put me back on it and said I needed it I said no..I weighed the side effects versas the pain which was extreme..I tried Avara, Humira for 4 months..now i am takin Rituxan it scared me when I heard the word chemo but I wanted quality so I said lets do it..my first treatment was april 28 and secong may 11. I am feeling better hurt no quite so bad and fatigue is better not sleeping 20 hours a day out of 24..lol For those of you that dont have Insurance Or Insurance Company wont approve a Drug most the makers of Drugs has several different ways of helping you out finacially, I still have pain and swelling in every different joint and I about gave up..Dont or you will not find what works for you..If one dr doesnt seem to be helping get a second opinion..when I first got this diease I thought ok a shot or pill and We will have it under control,,, How wrong was that lol,,they are really testing alot of drugs for RA so dont give up..just dont push it it will just cause you more harm...You all are in my prayers to find relief...just keep searching if you give up then you have lost the battle...hugs you all.ps i moved from texas to colorado in the beginning i thought it was just a change in climate...pain and swelling is not normal get checked out please
Dawn
21 May 2009, 08:54
I have recently been diagnosed with AS. My previous doc diagnosed me with Fibro and put me on Tramadol which I've had to increase more and more lately. My current doctor just prescribed me Simponi and I'm waiting for my insurance company to approve it. I'll keep you all posted. My concerns is the number of people experiencing bad side affects from similar drugs like Enbrel, Humira and Remicaide. Is it really that common? My doc says getting sick is uncommon. I'd love more feedback. My heart goes out to everyone with arthritis. My pain is not as bad some of the stories I'm hearing and for that I'm lucky. But, as a fitness instructor, I've had to cut back on my classes and battle with the stiffness everyday. Please email me, I'd love to hear from you!

Dawn
Sue Ellen
20 May 2009, 17:18
PS.on exercise

water aerobics helps me a lot. I can do it at my own pace with my brace on, and even when my legs or one of my hands hurts I always feel better just being in the water, and it gets me out of the house and socializing which is good. Check into a program in a pool near you, for me it is the only exercise I can do and it helps me so much!
Sue Ellen
20 May 2009, 17:14
I am 45 and have had psoriatic arthritis for what the dr thinks "a long time" was finally dxd just a year ago. I had 1 knee replacment and am going to surgeon tomorrow to set appt for the other knee replacement, very painful now. The disease just a few months ago went to my hands and wrists, I even have rhemotoid nodules on my wrists, had to leave my job due to this, lucky I can type now for a little. I wqas very active and this disease has turned my life upside down, sometimes too much to bear, but I know God is with me. I am on plaquenil, lexapro, amitriptoline, celebrex, and Ultram, 100 mg 4 x a day, and Remicade infusions. I have tried Enbrel, Humira (1x a week even)sulfazine, methotrexate. on 4th infusion with Remicade I felt a little relief in the hands, it is amazing how many joints the body has once you have this disease. I hope after this knee is replaced I can at least walk again, I use a metal brace and can barely walk now, it destroyed my knees bad. I am excited about another drug, I am a health nut,. but no amount of natural meds can prevent this destruction of this disease, I have chose this path to make my life on earth more manageable; afterall how can I affect the world for Christ if I cannot get past my pain?

I would love to hear from other women with this disease for support. Please email me.

Hang in there everyone, we can make it through this if we lift each other up!
Karin
20 May 2009, 14:12
I was diagnosed with Lupus (SLE) and RA 19 years ago and spent years with incredible pain and fatigue daily that felt like I had just run a marathon but without the endorphin high that goes with running. After many years of taking all the medications already mentioned by the previous people I finally qualified for Remicade Infusion. I am presently getting 500mg every 5 weeks (I started out on a much lower dosage every 8 weeks. I also give myself a shot of Methotrexate 12.5mg weekly, 400mg Plaquenil and 2mg of Medrol which is much easier on my digestive tract.

I am not totally pain free but much better and can function well most of the time if I am careful and pace myself however the fatigue is still a problem and very frustrating but I manage.

I live in Colorado and use the terrific Rheumatologists at National Jewish Medical Center in Denver and fortunately my Medicare and supplemental cover most of the cost.

I have, over the years come to the conclusion that life will never be like it used to be but I am so much better after years of trying everything and only hope it will continue to help me. I also am currious about the "New Injectable Biologic" and would love to hear some feed back from someone who had tried it.

I will be keeping you all in my prayers and good thoughts.

Best regards, Karin
Marsha
20 May 2009, 12:29
I was diagnosed with RA 3 and 1/2 years ago. My mother had this and I was just a basket case when I heard this is what my joint pian was from, of course I was in denial that I would inherit this disease but got the short straw! My poor Mother lived to 66 years with this where they had nothing but cortizone for her and hse lived miserably. There are so many wonderful drugs out there now that can help everyone along thank goodenss! Prayers to allout there with any disease. I am controlling it with methotrexate 7 tabs a week, plus I take clebrex as needed and every two weeks i take the pen type shot of humaria. Seesm right now to be doing pretty good. But then ther are good and bad days! This new drug I am looking at seems to be pretty nice. I think I will ask my Dr. about this! Good days are the best days! Hope everyone always has some good in their day!
Kay
20 May 2009, 10:33
I was married in April, 1999, and in September of that year I started having great difficulty with my left foot and it spread rapidly throughout my body until I could barely function. By February I was walking with a cane, had to sell my sports car because I could no longer work the manual shift, couldn't even turn the ignition on. Fortunately, my husband and I worked for the same company so I could ride to work with him. I had been diagnosed with a severe form of Rheumatoid Arthritis but my employer would not approve the much more expensive biologic drugs until I had tried every nsaid on the market, plus prednisone, Celebrex, and a host of other drugs which was a waste of time and money as I continued to get worse. Finally, the biologic was approved and I started taking Enbrel injections. I saw improvement with the first shot and I have now been on Enbrel and nothing else for nine years. It gave me back my normal life and I am eternally grateful to those who research and develop this class of drugs. Without Enbrel (or another drug in this class), I would surely be in a wheelchair by now.
Kathleen
20 May 2009, 06:58
to Kelli - I too have been recently diagnosed with RA and am new to this "World" of RA. My 1st dr. started me on 6 methatrexate a week & prednisone - however it made me extremely sick. We then switched to injections of Methatrexate - still made me sick but not as bad. The problem was that it did not help my symptoms and once I was off the prednisone - the swelling and pain came back even worse than before. I am now seeing a new rheumatologist who started me on Enbrel and I can tell you that after one dose the swelling is almost gone and I notice a change in my pain level each day. The fatigue is still pretty bad, but alot of that comes with the Vitamin D deficiency (if they haven't checked yours be sure they do) and once those level go up my fatugue should lessen. I wish it wasn't so hard to get straight up information on RA once you are diagnosed. There are many websites, but so many different opinions and trying to get an appointment with a rheumatologist was almost impossible. It would be nice if they had a nurse navigator like they do after a cancer diagnosis to walk you through everything.
Bob
19 May 2009, 22:02
I have delt with ankylosing spondylitis for the past 26 years (I'm 63 ).My initial treatment /medication was motron which required 2400 mg to aliviate the pain.This caused problems with my digestive system and then was given a sulfa drug to combat the constantproblems I had.FOR THE PAST 6 years I have been fortunate to have access to celebrex.
Inatially it was a "wonder drug " for me But,as usual after about 6/8 months it no longer had the same results.today I try to keep as physically active as possible,take my celebrex and give thanks I have the mobility I still have.I do handy man work and during the spring/summer stay busy 5/6 days.I believe ,even on a "bad day" the fact that I keep moving has allowed Me a quality of life that no medication could possibly give.I feel that the harder You try to force yourself to stay active You can still live a full life.
Kelli
19 May 2009, 21:17
I was diagnosed with severe R.A. in February 2009 and I am only on methotrexate (6 per week) and predisone and still have bad pain in my hands, back, neck, knees, ankles, and feet. I also have been off work since February and don't know when I will be released to go back the doctor took me off of work because of all the things I can not do now. I have always been a tom boy and loved to work on cars, and redo furniture as well as sew and now I am just too tired and/or too sore to do even the dishes. My doctor has not said any thing about any other meds except that they are expensive. What exactly I am looking for is what is next if the meds I am on do not work? I am still getting aquainted with my doc. and over whelmed with every thing and always forget to ask and if I write it down I forget to take the list with me. Hope this don't sound silly but I need some answers in laymans terms not big long words like doctors use.
Dena
19 May 2009, 19:20
God bless all of you I have had RA since Sept.08 after about 2 wks of test I the mother of three was given the news and felt my life was over but after hearing your stories i realize i am lucky i was given celebrex and predonisone for about 2 months then methnatrixate now and my life feels almost normal yes i have days of some real stiffness and pain (not unbearable pain that i felt in sept but alot more days of tiredness but after hearing all the meds some are on and still unbearing pain i say a prayer for you and thank the lord for what i can do
LUCY HERRING
19 May 2009, 19:03
I'm 75 years old, had mild polioat age 10, maleria...later developed R/A....and later also OSTEO/A. I too have dealt with the gallopin heart to ..missed beats..and feeling like my heart would stop. Got that corrected..had a bout of E-COLI INFECTION IN MY KIDNEYS A FEW YEARS AGO...CORRECTED. HAD PANCREATITIS A YR. AGO HEALED OF THAT.
I ALSO SUFFER EXCRUCIATING PAIN...IN MY SPINE AND HIPS...AND COLLAR BONE..AND FEET..AND RIGHT EYE, AND RIGHT KNEE. I TAKE MOTRIN 800MG, AS NEEDED, DARVOCETT N-100, AS NEEDED ,AND I USE THE TENS UNIT WHICH WORKS GREAT..BEEN USING IT FOR OVER 5 YEARS...ALSO AM ON GABAPENTIN FOR TRI-GEMINI PAIN OF MY FACE. I WALJ WITHOUT A CANE..DO SOME GARDENING, WORK OUT AT OUR LOCAL YMCA, TAKE CARE OF 2 PARAKEETS, 4 COCKATIELS....2 ARE ONLY 1 MONTH OLD, FEED WILD RACOONS, POSSUMS..I COOK...MONITOR MY HUSBAND WHO HAS RECOVERED FROM 4 BI-PASSES, AND A TRIPLE A.{{ HE'S 72}} HE MOWS..AND HAS A GARDEN. SOME DAYS ARE SUPER GOOD DAYS, SOME DAYS ARE ROTTEN...BUT WE FEEL THAT WE'RE BLESSED TO HAVE BEEN BORN IN THIS UNITED STATES...HAVE WONDERFUL FRIENDS..AND WE BOTH CAN UST THIS COMPUTER!!! MY ENCOURAGEMENT ...KEEP ON KEEPING..AND TRUST IN GOD..DON'T GIVE UP. {{1 CUP OF EPSOM SALTS IN YOUR BATHTUB WATER REALLY HELPS EASE THE ACHES. LUCY HERRING
Steven Stoltz
19 May 2009, 18:34
I was diagnosed with Fibro Mialja when I was a teenager, which later I found out I actually had Severe Rhumatoid Arthritis which affects my legs, hip, back, neck, arms and hands. I've tried several treatment methods, which currently i'm on enbrel injections weekly along with methotrexate and viccodin. It's been several months and my RA has only progressed to the point where I had to cut my hours at work to the min. that I could so where I could keep my medical coverage - since without insurance the enbrel would cost me $350 a week! I'm excited to hear there is a new medication to treat RA, since most that exsist now have failed to help me at all. I'm currently 27 years old and sadly I live the life of an 80 year old. I'm hoping this new medication break through will help everyone who suffers from this group of chronic disorders. I think most of all I'd just like to be a young adult again and be able to do things like dress myself and go for a jog or even just a walk in the park, since I can't do these things now. Thank god for research!!
Willene Edgar
19 May 2009, 15:48
I have had Fibro since my early 20's, but back then no one knew what was going on. In the early ninety's I was diagnosed with OA and both knees replaced in 1999. Nothing was really helping until I started taking Vioxx, it worked for 6 years so I could hold a full time job and take care of my family. But the side effects were hard on me, rapid heart beat and blood pressure problems, Now I have to take 2 different pills to keep the heart working normal. 3 years ago I was diagnosed with D.I.S.H which is effecting my spine and bone spurs thoughout my body. I would like to find something with NO SIDE EFFECTS, that would help and stop or at least dull the pain I feel every day.
Karen
19 May 2009, 15:37
This is the first I heard of Simponi. Love to hear some results. I have had RA since 1995 - I have been on Plaquenil, Arava, Humera, Remicade, Methotrexate, Embrel, Prednisone and now Orencia. I stopped breathing twice on Remicade....I have been on Orencia for six months - some gradual reduction in pain and inflammation - along with methotrexate and prednisone.

Thanks for sharing the information regarding herbal supplements. I will look into them for myself.

Would love to stop the pills and trips to the doc.
Jeannie
19 May 2009, 15:27
I have had bone pain since I was 8yrs old when I 1st broke out with psorisis. As I grew older and after many surgury's to my hands and spine I finally was diagnosed w/ Paget's Disease this was after many years of being thought to have psoratic RA. I was on so many meds before this diagnoses I appeared to be a stroke wictim or a person w/ organic brain damage. Please people do not let Dr's tell you you just have RA. It could be something more.Since I was correctly diagnosed I am off all of the wrong treatments. I can actually speak again and use only a cane for short walks.(I do use a chair for long journey's to save what cartiledge I have left.) Although I am still disabled and have major physical limitations, it is nice to have a clear head w/o all those drugs. Unfourtunately there is no cure for Paget's. The pain management med 'KADIAN' has me having a life again! I even have written a book that has been published and am writting another. A year ago I was unable to sit at my PC for more than 5 mins. Look at me now! I also take mega doses of calcium and vit D. Life is worth living again. Why are you guys trusting all those unknown drugs w/ all of those horrible side effects? I suggest getting appropriate pain management with natural suppliments and enjoy the time you have in this wonderful adventure called life. FORGET ALL THOSE MEDS WITH THE OUTRAGIOUS PHYISCAL AND MENTAL SIDE EFFECTS AND SELF ABUSE. GOD BLESS YOU ALL!
Dawn M.
19 May 2009, 13:56
I have RA. I have taken alot of the meds most of which I have bad side affects. I am currently on Cellcept and Enbrel but I end up taking the Enbrel for a couple weeks and then have to stop because I am sick again. In the past year I have had multiple sinus infections ,stomach flu, Pancreatitis, and Viral Menningitis. The meds seem to hurt more than they help. I now have Gout in my right foot which I took prednisone for and the tried Colchicine which about killed me I slept and was extremely weak for the last three days. Now doctor wants to give me a cortisone shot in my foot but I am so run down I am really scared to get it. I haven't heard about about the Simponi medicine until today.I myself will probly wait til more people have tried it.
KRISTEN
19 May 2009, 11:51
RA.,Lupus,Hep.C,sjorgens, Fibro,Raynualds,. I am wondering,23 years ago May2nd, i was given "bad" blood transfusions, and wound up w/ Hep.C, they had just started testing for HIV, then and the dr. said I got the better of the two. Well, Itt seems every person Ive spoken to w/ RA, has Hep. C also??? Iam thinking maybe some research should be done on this . i am not saying just a few people, I mean like close to 100???? Nothing helps anymore, i can't afford the meds, that may, and my dr.s seem ,well, like I am just being a baby about it.I am on medicade......I did get to try enbrel for a year free thru the company, and it has helped some of the disfiguring most woman my age 44 would already have. so I assume that too is something the dr.'s figure do not hurt,as i am not badly disfigured.The pain has become intense, I bearly do anything, I miss playing w/ my dogs and turtles, I miss cooking,sewing,gardening, I set out w/ good intensions and yet, I never can finish my projects, have'nt been able to sew in over 3 years. I look at all my wonderful sewing stuff, and cry, depressed ? yes, but ive been on so many pills for that too, I finally weaned myself off the 9 my dr. had me on. heads clearer, but now, ive a new problem, Ive gotten hooked on my anti-anxiety pills and am feeling embaressed and crying alot, I am going to talk to the dr. next visit about helping me get off them , but......Sorry, I can not write more.
tamar
19 May 2009, 11:35
Hi all, I've been diagnosed with Psoriatic Arthritis one year ago, have moved from Ibuprofen to prednisone to methotrexate and now to Enbrel. It's been 3 months since I started Enbrel, and the improvement has been minimal - I had expected much more. got a pneumonia and a tonsilitis all at once, and have been off the enbrel for almost two weeks, until that gets better. joints getting sore again, but not as terrible as I had feared they would. Just hope the pneumonia isn't the result of Enbrel.
Kathleen
19 May 2009, 11:33
I was diagnosed w/Degenerative Rheumatoid Arthritis/osteoarthritis since 1996,and have had a total knee replacement in 2002. During this surgery I went into a coma from the Morphine. In 1994 I was diagnosed w/Fibromyalgia. I have been on so many oral meds for Arthritis and meds for fibromylgia all have had side affects for me. I was on Viox for a year and it really helped me till they took it off the market and then my arthritis just seemed to explode. I was on Humira for almost 3 years but had to go off of it due to side affects of 2 Squamos Cell cancers on the top of my head and nose this past year.....surgery was done. I am now on an Orencia Trial Study since September 2008. The Orencia has helped a great deal giving more relief and less side affects than any other I have been on. I take 8 Methotrexate every Wednesday. I am 64 now and miss the active life I had. I find the high humidity and high dew point especially when it rains really affects my body. With my arthritis almost in control but fibromyalgia is off the wall w/pain. I will see my doctor tomorrow to figure out what to do for it. With the Humira I ended up w/so many sores and spots on my face that will not go away. I had no wrinkles and beautiful skin till then. My Dad had the very same arthritis as I have and had a massive heart attack at age 62. My doctors have been trying to prevent this. They are the best doctors I have ever had. They are so supportive and helpful to me and my husband who is a blessing to me. He does all the house work and cooking on my bad days. I could not make it w/o him. I try to find 7 good things during my nightly prayers. I wake up and bless the day 1st. This illness has changed me from a "bubbly, people person" to a quiet person. I push myself and refused to use my cane or a wheel chair. I used to love to walk and shop but the severe pain in my ankles and feet hold me back. I do receive injections in my feet which really helps. I have hesitated to tell my story but I have been reading all the comments and today I chose to tell my story to help all the younger people who are suffering so much. A special note of help..A jacuzzi really helps as does swimming. God Bless you all and I continue to keep you in my nightly prayers. If I can be of any help do not hesitate to email me. Kathleen.
Vickey Barnett
19 May 2009, 11:19
I have RA Have had it for 29 years.My doctor started me out on Gold, had heart trouble with it, so he put me on the thick gold I did great with it I could do anything I cared to do. No pain. They took it off the market and a day don't go by that i am pain free. I am on Methotrexate. Right now i have pain in knee, foot,back and hand. Please bring back the thick gold.
Victoria
19 May 2009, 11:15
I am also wondering if anyone has switched to Simponi. I had read about it previously but was not sure when it would be available for use. I have requested information from the official Simponi website but I'd much rather hear about someone's experience first!

I am 23 and have had JRA for 12 years. Right now giving Humira weekly, along with Arava and Plaquenil. Love the thought of only injecting once a month as opposed to 4x a month!

Clare
19 May 2009, 10:37
I have gotten off all meds except for sulfasalazine and Plaquenil. I take the herbal supplements Quercetin, ginger, turmeric, fish oil and 2 aleve everyday. I am 43 and was diagnosed with RA at 39. I've been on Methatrexate and prednisone for ever! Glad to be off most meds and feeling great! Hope they keep researching and finding help for people with this horrible disease!
Jane
19 May 2009, 10:31
I have had RA for 15 years and Scleroderma since 68 but only in extremities. RA is much worse. I have been on Enbrel, Humira, Kineret, & Rituxin, all of which help for a short period of time. I am presently on 5 mg of Methotrexate wkly. & 10 mg Prednisone.
Not much help. Feel not only joints a problem but of late muscles seem affected. Off all statins & no cholesteral meds. Any suggestions please? I am miserable most of the time, more so lately. Thank you.
Jane Giancola
Shep
19 May 2009, 10:24
I was wondering the same thing as Kim; has anyone tried it? It was just approved, I think, the 24th of April. I have been through Enbrel and am currently on Humira and can't tell that it is helping much. Also, I take Methotrexate and Mobic and pain pills.
Melissa
19 May 2009, 09:45
I was recently in my doctor’s office reading my labs; and it seems I am still not there yet! To feel no pain or at lease less pain. I started on Enbrel in 2005 and was changed to Humira in 2007 and still I have a lot of pain in hands, 1 knee and back. I am 38 yrs old and have two beautiful children 6 and 3. These are the times of running around playing and a lot of physical activity and yet, I cannot do much. My doctor recommended to stay 2 more months on Humira, Methrothexate (inj), medrol and others to see how we react; if not well she is considering to change my medication; not sure if to Simponi, will see. God Bless all and I hope that we all have symptom free very soon.
Melissa
Debra Elliott
19 May 2009, 09:43
I find that my HUMIRA works better by supplementing it with 500mg pure resveratrol, 2 grams carnitine, 75mg 5-loxim,serapeptase,Gaba, shark cartilage, and olive leaf extract. then I have less pain and more energy and feel more positive.
Debra Elliott
19 May 2009, 09:36
please tel me more about Simponi background, and how many people are now switching to it from HUMIRA, and their experiences. I've been on HUMIRA almost one year but I find that it works better supplementing it with shark cartilage serrapeptase , and 2 grams of carnitine a day and 500mg of pure resveratrol and 75mg of 5-loxin. 5/18/09
Pat Mutraporn
19 May 2009, 09:30
Pat Mutraporn

I am so pleased to hear about this new drug for the injection and would love very much to try this on a.s.a.p as I have suffered with Arthritis on my knee very badly for more than 10 years now with the intermittent right anterior knee pain. My knee sometime locking and give way and very dangerous when I get out off the bus and crossing the road. It kept me awake at night. and the x-ray shown straight lower limb alignment and significant right quadriceps wasting and there are patellfemoral and anteromedial joint line tenderness and patellofemoral osteoarthristis with osteophytes over the trochlea and calcific densities projected over the intercondylar tibial spines. I have patellar maltracking and tight ITB. I would like very much to try on this new drug please.

Looking forward to hearing from you. God bless you and if I feel better I would like to give this good news to everyone who suffered with this awful pain like me and will do anything to help everyone as much as I could and until I die!!!!

Pat
tammi
19 May 2009, 09:18
Kim,
I was thinking the same thing! WOW!! A shot once a month instead of weekly would be great!
Enbrel is a miracle drug for me and I am able to be soooooo active with little or no pain. I'll be talking to my Doc next visit!
Tammi
Alaina
19 May 2009, 09:16
Kim-

This is the first I heard of it but I am very interested in learning more. I am 37 and have rheumatoid arthritis. I started Enbrel several months ago. It worked great at first but then I had a negative neurological reaction to it and was hospitalized for close to a week. They flushed it out of my system completely. Ever since then, it no longer is working. I take it in combination to Methotrexate. Did neither Enbrel & Humira help you at all? It gets really frustrating to always be "guinea pigging" ourselves with all these medications. Perhaps one day, someone will find something that really works.

Alaina
Kim Parsons
18 May 2009, 15:19
Has anyone tried the new medication, Simponi? I was just wondering b/c my doctor and I are thinking of changing from Humira to Simponi. I have had Psoriatic Arthritis for seventeen years. I began Enbrel in 2000 and changed to Humira in 2007. No major changes have occurred and I would like some relief. There is very little literature on Simponi.

Thanks,

Kim

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