ADVERTISEMENT
Close
Treatments > Drug Guide > Types of Drugs > Drug Guide: Biologics
Text Size Plus Minus | Print Email

Drug Guide: Biologics

Everything you need to know about biologic response modifiers

By Donna Rae Siegfried

What are biologics?

In general, biologics are genetically engineered medication made from a living organism, such as a virus, gene or protein, and then used to treat a problem occurring in a different organism, such as a human. Vaccines are one type of biologic agent. In contrast, other drugs are synthesized chemicals.

What conditions do biologics treat?

Because the biologics block triggers of inflammation, they are used to treat autoimmune forms of arthritis, such as rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), ankylosing spondylitis or psoriasis/psoriatic arthritis. Inflammation is the result of the immune system’s errant attack on the body’s tissues, causing joint pain and destruction, as well as other systemic effects, such as fatigue and heart and lung damage. Some biologics approved for rheumatoid arthritis are approved for, or are in development for, other conditions, ranging from Crohn’s disease to cancer.

How are biologics used?

Some biologics are used after a patient has “failed,” or not responded adequately to, traditional disease-modifying anti-rheumatic drugs (DMARDs) or other biologics. When a biologic drug is used for treatment, it is used often in combination with a traditional DMARD, such as methotrexate, for greater effectiveness.

Will biologics cure RA or other conditions?

Unfortunately, no! But the biologics, which work for about two-thirds of people who have rheumatoid arthritis, can induce remission in most people who respond favorably. A clinical remission is defined as fewer than 15 minutes of morning stiffness, and no tender or swollen joints for at least three months. Treating rheumatoid arthritis and other inflammatory forms of arthritis aggressively with DMARDs, including biologics, as soon as possible after diagnosis increases the chance of remission, as well as minimizes the risk of limited function due to permanent joint destruction.

Why can’t two biologics be taken together?

Biologics and other DMARDs decrease inflammation and disease activity by impairing the immune system’s activity. But suppress the immune system too much, and an overwhelming infection could take hold. Limited studies suggest that taking two biologics at the same time would increase the risk of infection markedly, without an increase in therapeutic benefit.

Why are biologics so expensive?

The materials required to create these agents are more expensive, and the manufacturing processes using live organisms are more complex than are required for traditional chemical pharmaceuticals. Other factors include the high cost of research and development. 

All of the current biologics are still under patent protection. After a traditional drug patent expires (20 years from the date the company applies for it), other companies can produce generic versions that cost less.

Page 1 | 2

Belinda Milne
30 Dec 2011, 04:25
Hi I live in Australia and my son Ronan who is now 3 years old was diagnosed with JIA in April this year when he was still 2 years old. He currently has seven joints affected the worst being his left wrist which he has very little movement in. He is being treated with Naprosyn twice daily, Methotrexate once a week (tablet) and has just this week had his seond Enbrel injection. We are hoping that the Enbrel will bring some relief and that he can be taken off the other two drugs which he reacts to (stomach pains and a general feeling of unwell, not eating and just being miserable). My husband and I are helping put together a JIA Support Group in the ACT (Canberra) where we live as there isn't one at the moment, but there are quite a few children with JIA the same age or there abouts as Ronan. I am constantly searching the internet for any information that may help. I have found and Ronan's paediatrian agrees that a gluten and dairy free diet helps to lessen the symptoms of the arthritis as they are flammatory foods and we have found this to be accurate. I hope in the not to distant future they find a cure :)
Sofia
07 Dec 2011, 12:44
I was recently diagnosed with RA this past summer and I'm worried my son might have some form of arthritis too. Im not sure how long I've had this but I always remember feeling fatigued occasionally and my feet and back would ache a lot as a child. What are some signs for to look for in children? My son complains that his knees and legs hurt a lot. Which can be mistaken for growing pains.
PHYLLIS
06 Dec 2011, 15:07
I too have RA and other types of arthritis,fibromylgia. After reading about the children, I feel very blessed to be as well as I am. I really am sorry for the children and their parents that have to go thru this. I have taken the insaids, Humira,Methrotrate, now I am on Embrel and it seems to be doing OK. I try not to think about the side affects. I just know that I can at least get out of the bed now and have a life and along with the tramadol for pain, I can be semi active. I wish we could still take the darvocet, it was better for pain than anyother thing I have tried.
Deb
15 Nov 2011, 09:17
My 10 year old daughter was diagnosed with JIA in Feb 2010. Our story is very similar to yours. She tried everything your son has with minimal pain relief. She has been on methotrexate injections for almost a year with not a lot of relief and added embrel in the spring. She has been pain free since a month after she started on embrel. It has been amazing! I don't love her being on all these drugs but to have her back to normal function is more important. We are trying to ween her off of the methotrexate slowly and see if she can do as well on the embrel only. She has had no side effects at all. 2 week before she started the enbrel she could barely get off the couch and now she has normal range in all of her joints. Good luck! I hope your son does as well as my daughter has on it.
DawnRey
26 Oct 2011, 22:30
My son, Xavier, 12 yrs old, was diagnosed with JIA in June 2011, he has been taking Methotrexate (which he has been taking orally because he didn't want to get a weekly shot), Prednisone and Folic Acid, which he has been taking for the last 6 weeks, of course he just started treatment, but it doesn't seem to be working. He has over 10 joints effected by this and his RA Specialist isn't happy with his progress, because of our insurance covering the costs of treatments, we have to continue with the Methotrexate (however this time he will get weekly shots),Prednisone and Folic Acid for another 6 weeks...at that time, if he still hasn't improved, his RA Specialist wants to change his meds and have him start taking Enbrel weekly.
After reading everyones comments, I'm concerned about the side effects from Enbrel. Has anyone gone onto Enbrel and it worked without all the side effects? Is there any other options? His Doc is very informative and concerned and caring, she is very reputable, so I don't doubt her ~ I'm just very concerned about my son and his future with this disease.
Thanks in advance!!
Patsy
18 Oct 2011, 19:45
Gosh, I have read your stories and can identify with alot of you. I have had RA for 5 years now. Been thru Enbrel, Humira, Remicade, Orencia and now a new drug Actemra. Just had the first dose of that so to early to tell. Thru bloodwork, it was discovered that I was not absorbing the methotrexate I was taking in pill form, so we have now moved to weekly injections. Seem to be working so far.
The swelling has subsided some (thank goodness). As we all know, swelling means the disease is active and joint destruction is happening.
Since taking all of these, I have now been diagnosed with Pulmonary Fibrosis and Emphysema. Pulmonary believes these are both brought on by the drugs, particularly the Pulmonary Fibrosis.
I don't know what the future holds for me. At this point I am very disillusioned with the whole process of treatment.
Good luck everybody! We have rough roads ahead!
Helen
08 Aug 2011, 17:19
I have RA, Chron's, Fibromyalgia, Chronic Anemia, Planters Faciatis all since 2003. It came on very suddenly. I was forced to retire on disability after taking plaquenil, methotrexate, prednisone. I needed a bowel resection due to overuse of prednisone and I also went from a size 12 to a 2 in 8 mos. Then Remicade was suggested, I used it for 1 year and caught Pneumonia and Sepsis had to be flown to a city hospital was in coma for 7 days my poor husband didn't know what to do. We switched to Humira, before I completed the first 6 initial injections I went to ER and was flown out again with blood clots in the lungs and pneumonia. After that my husband refuses to hear of anymore biologics they do destroy the immune system and leave you exposed to every germ that comes along. I since have gone back to celebrex, methotrexate, and Evocac for dry mouth. It seems to work but as everyone else I have that vicious cycle of pain, feel good and then back to pain again.
Amanda
19 Jun 2011, 01:40
Please read:

I as well as many others suffer from RA, Lupus, fibromyalgia, and other auto immune diseases. I have spent the last 7 years on medications orally, IV, and injections. I am currently taking SQ methotrextate injections, Enberol injections. I have recently finished a month of Rocephin antibiotics IV and have gone on a downward spiral of pain. My husband and I have many of the same concerns with the medications causing cancer and other side effects. We have recently watched a documentary called "Food Matters", very interesting and highly recommended. We also have done research along with this movie in that their is a all natural supplement you may order it online. It is called Eiacsse Tea. Proven to minimize if not defeat symptoms of RA, Cancer, Fibro, etc. We are ordering this next pay period and I plan on going all natural with no traditional meds as of July 1st. I will keep you up to date. Good luck with all of you who suffer like I do.
Debby
04 May 2011, 17:15
I had RA, for the last 34 years in last 3-4 yrs I have come up wi OA, Ankyloosing spondilitis,(arthritis of spine) and stenosis.
I have been on Emberal, Humeria and now I am on Remicade (IV infusion). At first I didn't think I could inject myself because I don't like needles either but I have learned if I don't want to live in severe pain and I want to see my son Graduate from High school and go into Marines I have to rely on these drugs to keep me going and. Hopefully the side effects and anything bad will pass me by. If I wanta life I have to try somthing.
Elaine P
01 Feb 2011, 10:01
To Melissa D and all,


I too have RA and had it almost 21 years. I have over the years taken a variety of meds. I am on Arava, methotrexate, daypro. I have good and bad days as you all know.

Mt RA doctor gets me so mad. We must have to same RA doctor. LOL I swear she doesn't understand. She wants me to take either enbrel, or remicade. I read all the terrible side affects and am scared to death.

my hip and knee are in constant pain and worse at night. she give me for pain this worthless med. tramadol. My PCP is better understanding I get generic vicodin form him. I am in the process of finding a new RA doctor the only problem is it is about 65 miles away. I just have been very depressed with all this. I really can't handle needles so I certainly won't inject myself.
Denise
19 Jan 2011, 14:44
This is for Kathy regarding Braggs Apple Cider Vinegar. The organic, raw, unfiltered is fine, but any apple cider vinegar works the same. Taste wise, and for added benefits, try drinking it like a cup of tea, 1 in morning, 1 at nite. 2 Tblspoons vinegar & 1 large Tblspoon honey or to taste, enough to sweeten. Add boiling water, stir. Drinking this as a hot tea is rather nice, somewhat tart, yet sweet with honey. Easy to get used to and even enjoy.How much honey, how sweet is personal preference. The honey is very good for alot of things (remember bee sting treatments) and a real boost combined with apple cider vinegar. This was a very common home treatment used long before pills, pills, pills. There is an old book called Vermont Folk Medicine all about this, can't remember the author, but should be easy to find. It REALLY works, when drank consistently twice a day. Within a few weeks you should notice much improvement in the flexibility of any bothering joints, diminished pain and discomfort. Also any other ways to incorporate apple cider vinegar into meals, spritzers on salads, veggies, fruits. KEY: Can't hurt, might help, unlike pill therapy, which has gotten scary to say the least. Also look into tumeric, also very beneficial for RA. Aloha
Melissa D
02 Dec 2010, 08:54
I was diagnosed Nov, 13 2009 with RA. I know I have been living with it undiagnosed for many years, as my medical records dated back to 2002 where my now ex physician noted I complained a lot about my painful hands, etc. His comment was laughingly, 'its all just part of getting older'. I was only 37 years old at the time!

I finally took matters into my own hands last year and made an appointment with a Rheumatologist. My blood tests did NOT show any of the markers for RA, but the xray results did show marked deterioration. I was diagnosed in the moderate to severe stages from the start.

A year into treatment with Methotrexate injections, 1.0mL weekly, had to stop the Arava due to liver toxicity building. RA doc wanted to put me on Remicaide infusions I believe it was. I heard the dollar amount and told him there was no way I could afford this amount. He actually got angry and walked away. Not offering any other options. Needless to say, my PCP referred me to another RA specialist 65 miles away, I will be seeing her in Feb 2011.

My old RA doc would not prescribe pain management other than Tramadol which was making me so ill. Twice my PCP had to give me pain medication injections in the office to simply get a control on my pain. He now has me on good pain management. Some days I dont need more than one tablet, others I need the maximum and wish for more. Either way, at least he cares enough to try and help.

Was hospitalized the week before Thanksgiving for infection, and fever.

I am scared now about what new medication the new RA doc will try me on. I cant live with the pain and the option to NOT treat is NOT an option, but the medications, scare me to death now. Any suggestions?

I dont want to die :(
Tish Frame
29 Oct 2010, 18:35
Just so you know...I see a Rheumatologist who is well known and respected,regularly, have blood tests done every 6 to 8 months, am in Northern California. My rheumatologist did not suggest this treatment,I found out about it online when I was first diagnosed, and asked to try it. See www.roadback.org, read the book. After 5 years my Rheumatoligist is now finally becoming convinced that this treatment may be something he should be recommending to other patients...the cost is minimal, the toxicity is minimal. Any questions just contact me at plframe@yahoo.com and I will respond. I cannot understand those who will not try this...
Tish Frame
29 Oct 2010, 18:22
I was diagnosed with Rheumatoid Arthritis five years ago. I have been using minocycline (100mg/day) for one month, then Vibramycin (100mg/day) for the next month, alternating months. This stops the issue of minocycline causing greying tooth enamel. My RA has been in complete remission with this regime. No stiffness, EVER. I initially was using a generic doxycycline which worked fine, but the manufacturer changed some of the "inert" ingredients and suddenly it stopped working. I went thru six months of hell until I figured out what the problem was. That is when I went to the brand Vibramycin. To keep costs down, minocycline is used every other month. Five years of total remission (except for that breakthru when the generic changed its formula - at which point within 6 months my hands were totally stiff, every joint inflamed and weak, I could not hold a coffee cup by the handle or start my car without using a pair of pliers to hold the key....so trust me, I definitely understand the pain of RA). But now...no pain at all. No other meds. No NSAIDS. No supplements. Just the antibiotics...they work, they have MINIMAL side effects compared to the toxicity of the biologics and methotrexate et al.
renee thomson
29 Oct 2010, 18:17
I am female, age 50. Got diagnosed with RA 5 years ago. suffering badly. stayed on Enbrel for 3 years.it worked very well. one year ago, I began geting lots of infections, in my lungs, nose, etc.recently, I was getting headaches, had a cat scan and MRI done of my brain. They found "white spots" on my brain.This is evidence of either MS or Dementia. I then re-read the side effects of Enbrel, and bingo, there it was.In their clinical trials, it can cause what i was just diagnosed with.lucky me, huh? I immediatly stopped the Enbrel. I have been free of it for just 6 weeks and I am back to square one. Suffering daily with horrific pain, swelling, etc. I am still taking the methotrexate, but doesn't seem to be doing a thing for me. I do not know where I am headed, because, now, I realize all drugs must be harmful in one way or another. And I am very afraid of my future.Good luck, but watch out for those drugs, people.
kelly
23 Sep 2010, 08:33
i have just found out after 13 years of pain i have ankylosing spondylitis. i was so relieved to have an answer to the severe pain i was having. i give myself the shots of enbrel once a week and it has helped a lot. i hardly have to take pain pills anymore. i even did a cartwheel(my dr frowned upon that one ha ha)last weekend. just wanted to tell someone who knows whats im talking about
kathleen
04 Sep 2010, 07:48
i am being treated with remicade for ulcerative colitis. it has worked so well controlling this disease. however, i now have muscle and bone pain, not joint pain. does anybody else have this side effect?
Kathy
27 Jul 2010, 03:14
I forgot to mention that I also take Celebrex once or twice a day depending on flares. I supplement this with a product by NOW called D-Flame. It doesn't work as well as Celebrex for pain/inflamation, but it does let me get by with just one Celebrex per day sometimes. When I am suffering badly from flares, I take two Celebrex a day. Regardless, I take 4 to 6 D-Flames a day with meals. I have also just started to take Bragg's (with Mother) apple cider vinegar. One or two teaspoons in 8 oz. of water one to three times per day. It is supposed to help alkalyze your body. (Tastes bad!!!) I hope this helps someone. Any comments about the apple cider vinegar? I would appreciate your feedback. :)
Kathy
27 Jul 2010, 03:05
I have A.S. and probably O.A. I have had arthritis for 20 years. I have suffered greatly at times, experience iritis/uveitis, have a replaced hip, extreme fatigue and pain. I was on Enbrel and Methotrexate for several years. I started experiencing my legs just collapsing from under me. My doctor said I was having M.S. symptoms, but didn't have M.S. Who knows? There is a disease similar to M.S. that is linked to Enbrel. Long story short, I am off Enbrel and Methotrexate. I just wanted to tell everyone here that a low starch diet WILL help your symptoms. I am not saying that it is a cure all, just that if you really stick to it, you will suffer less symptoms. Also, I am currently on a long-term antibiotic treatment. I am taking doxycycline, 100mg once a day. I tolerate it very well and believe that it is helping me as well. I have been taking this about 8 months. As most of you know, sleep is the single most important factor in helping your symptoms naturally. If you have not been tested for sleep apnea, do it now. God bless you all. I hope this helps someone. I realize that when you or a loved one is in horrible pain, that you will take almost anything to get out of it and get your life back. Just be careful with the biologicals. Pub-Med website is a great place to check out problems with drugs.
Karla
19 Jul 2010, 23:41
For Jake,

I have two kids on methotrexate and they had both been on nsaids indocin and naproxen. my eldest who had the more severe flare has had many joint involvements and is on her 3 flare up since she was diagnosed at 18 months. my ped rheumatologist didn't like how quick her body was flaring. within a month she flared in her knees ankles, wrists and cervical spine. We started with just and nsaid and when that didn't work after 3 months and the endless pain, the doc moved on to a dmard. We have had problems with the combination after a while. it was driving up her liver enzymes to an alarming number. For this flare, my oldest now 7 is on a month by month plan. we just aded sulindac (or something like that, and after a month, if the flare hasn't gone down at all, we are adding another nsaid, and of nothing still, we are switching to a biologic. I am a little afraid as well about the side effects but I often wonder what conditions the kids are in that had the bad responses to the drug... I mostly write this just so you know you aren't the only one..

Best of luck for your son. I hope you find some pain free time soon for him.

Wanda
10 Jun 2010, 11:21
For Kendall and anyone else this might help -
A very good website is www.kickas.org
The site is for ankylosing spondylitis, but there are many people there with other types of inflammatory arthritis, like RA, PsA, etc. The support there is phenomenal!
Hélia
04 Jun 2010, 15:19
I'm Portuguese, and I started whith Enbrel last year in Lisbon, and now I'm doind my life like I was before having RA. I'm glad whith this biologic treatment, but I am also afread of tumural factor. does anyone can tell me something about it? Best regards and sorry about my english. Hélia
jen
01 Jun 2010, 14:36
I was diagnosed with PA about 3 years ago. I was put on Enbrel which work great. I felt that I was given my life back and was pain free for 2 years. Slowly I have been experiencing more soreness. I get achey between treatments and I never feel painfree like I did in the beginning. My Doc insists that methetrexate is my next logical treatment and feels that I am being unreasonable for not wanting to take it. The drug scares me. and I am already experiencing hair thinning with just having the psoriasis, If I take the methetrexate I'm worried about losing my hair even more. Has anyone had any experience with this?
Sharon
24 May 2010, 13:59
Went just the other day for the second series of Ritoxon infusions.I had the first ones in Nov last year and immediately took pneumonia after the 2nd one in Nov so they are watching me very closely to ward it off if it happens again. I really went too long between infusions because I was having so much swelling and pain I could hardly go.They say every six monthsfor the infusions but they have also told me I may have to go every four months.The edma was so severe they had to give lasix in the IV before they sterted the Riruxon,by mouth during along with 2bendryls and cut in half the amount of saline they run in with the Rituxon.Then I had to report to my primary care Dr.the next day and I had to increase the normal daily amount of lasix from 20mgs to 80mgs.it took about six days at that level to get it where I could wear any of my shoes or bend my toes.They have given me a prescription for a year at this level.The inflamation made my blood pressure go way up and my feet and legs hurt so bad.I have tried everything else so rituxon is what he hopes will work th e best for me.Once before I was on a cocktail of mextrexate,arava,plaquinil and sasalate.When they added the arava I showed remarkable improvement for about 3mos and then landed in intensive care for three weeks and almost died with pneumonia related to the side effects of the medicine so now I can't take any of those drugs and nothing but prednisone helps at all.I am diabetic,have thyroid problems,high blood pressure,RA and degenerative disk disese on several levels.Some days I have pain shootiong down my back into the hip and all way down to my toes.I will not be a candidate for back surgery because of my other problems and it is not safe to me under for surgery.I just try to stay as positive as possible, count my blessings and put up with as much pain as I can.I am still working a full time job at the bank but wonder how long I can do it.The thing that helps me most is water therapy that I take twice aweek.Check your local rehabilitation centers as it very reasonable and listed as wellness classes.It will benefit all of you I believe.
Vanessa
13 May 2010, 15:07
for Jake...
finally I found a very similar case...
My daughter have JRA since she was 18 months and she is now a little over 2 years old. She is on Naproxen and Methotrexate as well but is not helping her. The doctor wants to change to Enbrel and I'm very concern. I really don't know what to do.
Alberto
09 Apr 2010, 22:33
For Jake..

There is no conclusive study linking biologics to higher cancer rate. However, this would be the least of my concerns. Pediatric clinical studies have documented other more severe side effects such as digestive tract inflammation, varicela infection, skin ulcer and others. Drugs such as Enbrel have not been studied in children younger than 4 years old.
I am very sorry to hear about your 2-year-old baby. I am not sure what his/her diagnosis is, but as a parent I would be very reluctant to put my son into a life-long biologic treatment (please, I’m not a doctor and this is not a formal advice). Our prayers go to you and family. Let us know if we can help in any way.
jeff smith
28 Mar 2010, 22:57
for Kendall
check out this web site its for psoriatic arthritis
http://www.papaa.org/tiki-custom_home.php
Kendall
23 Mar 2010, 15:48
I was diagnosted by my rheumatologis March 1 with psoratic arthrisis. I went to my dertalogliest 9 months prior with the same stiff joints, "peeling" skin, and sausage toes, so bad I limped for 5 months. Im kind of confused as to why my deramotgist never put the two together. I did, and make an appointment with a padiatristes who inmediattle sent me to my rheuatoligist.

Anyway, i have been on Indomethaice for 3 weeks now. I have seen a 75% adjustment in the first two weeks. I have only had a few side effects, mainly stomache pains, canker sours, dizzyness and being light headed. I fear that once I stop taking these Anti-Inflam pills, it will come right back. Plus, I'm a chef. Im on my feet 14 to 18 hours a day.
I'm really new with all of this and have been reading like crazy!! I'm scared that this my ruin my passion as being a Chef. If anyone has good ideas or websites and such that would be Great help!!

Also, I gained 12 ponds in the 3 weeks on this medication. Is that normal?
Jake
16 Mar 2010, 14:10
Anyone have information on biologics and cancer rates. My son is just under 2 years old. On Naproxen and Methotrexate...very common I understand. MD thinks biologic might help but my wife and I have great concern after reading about cancer risk. He only has one joint affected and we worry about doing more harm than good. Are there any good sites we can access to learn more?
Thanks
Jeff
21 Feb 2010, 22:49
I have psa,oa,emphysema. I have been on enbrel for 3 years and works good but being on medicare part d my insurance copay is 495 a month so i have not been on it after the new year. Ache all over, fingers lockup stiff and sore even my feet hurt. rhumy dr put me on meloxicam but it has not helped. The dr did a appeal for me but who knows when we will get a reply. good luck to all
marie-agnes
15 Feb 2010, 17:10
What do you know abou INSTAFLEX ?
Is Celebrex one having the least side effect?
how can antibiotics taken for something
else appears to lower the inflamation due\
to the arthritis?
Finally how do you cope between the use
of ice pad to reduce the swelling the knee,
knowing that you need heat pad for the
inflamation????
cindy Sutter
31 Jan 2010, 12:02
I have RA. I take Methotrexate, folic acid, and Plaquel. My rhematologist wants to start me on Cimzia injections. I will still be taking my other medications. This scares me. Whats worse for my body...Does anyone know anything about this drug?
Beth H
26 Dec 2009, 18:03
Victora C. you are amazing! I've just starting having problems again, in what I call a flare of pain. My knuckles hurt. My main doc has me on Mobic, which doesn't do a thing. In the past they didn't know what kind of arthritis I had, so I got disgusted with my rheumatologist, like a lot of you, and just lived with the pain. Now everything is on fire and painful. I worry that I won't be able to work. I worry about my marriage and try to keep a good face on it, but get frustrated that there is nowhere to whine about the pain. I'm seeing a new rheumatologist on Monday, I'm glad I saw your messages to keep me aware of problems that were solved or not. I just want some pain relief! Being 41 with this amping up scares me. What's it going to be like when I'm 60? Wow.
Damaris
15 Dec 2009, 13:31
I have RA for 3 years the meds are not working for me to ease the pain my body is use to the meds and it's not helping me with the serve pain I have I try to excerise but the pain is worse.
Jodi
18 Nov 2009, 08:16
I have RA, OA, and Fibromyalgia. I was also diagnosed recently with Lymphedema is both legs. I had been on Remicade for 1.5 years along with methotrexate, lyrica, folic acid, prednisone and pain meds. I am fortunate to have a PCP that understands pain and helps keep it under control. I was going to a rheumatologist to handle the biologics. I have experienced that the rheumatologists I have went to don't want any part of managing the pain aspect of these diseases which is strange to me. I would think they would have a better understanding of the pain these diseases produce. But, after a year and a half with no improvement on the Remicade, we decided to try Rotuxin. The first infusion I needed some extra Benadryl during the infusion for some itching that had developed but it went away and the infusion went fine. You get another one 2 weeks later and all was fine. The next one is 6 months later, followed by one in two weeks. The third one was good, all of them had been infused over 6-7 hours. The fourth infusion was infused over 3-4 hours as I had been doing so well. Later that day, I began having involuntary movements of both my arms and legs. It was like I was having seizures but remained awake and aware while it was happening. The movements were so violent and uncontrollable that I bruised my arms hitting furniture. It was terrifying to me. I had to be taken by ambulance to the ER. It took three people to hold my arm still to get an IV going.They pumped me full of everything they could think of to stop what was happening but it took hours to stop. I was in the hospital 5 days on massive amounts of solumedrol IV to keep the reaction under control. At first my rheumatologist didn't believe it was a reaction to the Rotuxin but a pharmacist at the hospital looked it up and this was listed under the possible reactions. I was off work 2.5 months while I came down from the prednisone I had to take. I was on 5mg BID before this happened. I left the hospital at 60 mg BID and had to wean down slowly. I was in so much pain and the weakness was horrible. It took everything I had to get out of bed. I was successful in weaning down to my regular dose of prednisone and I'm now back to work but I am not the same. The pain is worse, because of course now that this happened, the rheumatologist won't give me any other biologics. My insurance will only pay for the infusion meds, not the injectables. My PCP is continuing the methotrexate and all my other meds for me because I was taken off everyting in the hospital and the rheumatologist won't let me go back on my regular maintenance meds. It's very difficult because the Rotuxin was working and making my pain less and my mobility increased. I don't know what is going to happen now, I'm trying to find another rheumatologist but there aren't many in my area. I wanted to relate this experience to you all in the hopes that it will allow you a little more information about this drug. I think that I had a reaction because it was infused faster than it had been before, that was the only difference in the four infusions. The physician doesn't agree with me and when I called the manufacturer of Rotuxin, they said that it can be infused over 3-4 hours. So maybe I'm wrong but perhaps I'm just someone that needs a slower infusion. It's a moot point anyway because I can't ever get this infusion again, I wouldn't want to go through that again. I'm just disappointed because it was helping. Good luck to all and thanks for all these posts. They really help me to cope.
Victoria C.
06 Nov 2009, 23:12
I am 65 -- I was born w/o a rt. hip & had 3 operations... in a body cast from 16 mos. to almost 3 years. My orthopedic carved me a hip from my pelvis... didn't charge my mom one cent. I learned to walk, as mother was what I later called "the PT Whisperer"... besides taking therapy, I had swimming lessons, rode horses, climbed trees, rode my bike, and was a basic tom-boy until high school. Then my mom enrolled me in modeling school so I could better learn how to walk, to carry myself, since my rt. hip was stiff & I had a slightly pronouced limp. I took restricted PE, taking golf and archery classes. All in all, my childhood and middle thru high school life was pretty normal... if I don't include the falls, the injuries, & pain that would sometimes cry me to sleep. When I turned 18, my wonderful old miracle-maker doctor sat me down for a serious talk. He said I had the body of an 80 year old woman now. I can remember sitting there, stunned. Perhaps I said something flippant like 'you don't know who you're talking to... I'm going to prove you wrong'. Can't remember the whole thing... I just wanted to get out of there FAST. And that's what I did -- I lived my life fast too, like a shadow was chasing me. For 10 years, things went pretty good... then it all started to catch up to me. I hate to admit this, but I have now had 39 surgeries. Amazing. But each time when I was in PT feeling sorry for myself perhaps, for some reason God would show me someone else who was in worse trouble then me. I've learned a lot of lessons while going thru this. I'm married now, we have a 37 year old son & we're finally grandparents... I'm so happy. But I'm also frustrated... I have tried so many different procedures & treatments. I have 3 artifical joints, 2 hips & a knee... the other knee is what they call 'inoperatable' as I was only 28 when I had my 1st hip replacement (that rt. one). Since it was a 'teaching hospital' they said I was going to be the youngest patient to get a total hip. Back then, they had to heat the glue very, very hot so it would attach to the femur. However, the glue seeped out of the femor, running into the femoral nerve and destoying it. Within 6 mos. I had no quads. I went to 26 doctors in 10 years, desperately trying to find the doctor 'who could fix it'... and believe me when I say there were a lot who wanted to 'try'. I finally desided that I would have the knee replacement... scheduled it. But 1 week before that surgery I drempt that I should talk to the surgeon again. So I did -- I asked how many of these surgerys he'd done. Would you believe he told me he had never done even one??? Well, it's the truth... however, he did say he'd been 'talking with his collegues, and he thought he could do it'. The saddest part is how angry he (& even his nurse!) got when I said I'd changed my mind!
About 6 mos. later, I was seen my a doctor who only worked on knees... when I told him my tale of woe, especially the part about almost having that knee replacement... whoa. The only thing I can say is how very,very lucky I was. To begin with, he explained that when I had my hip replacement there were very few doctors who knew how to do the surgery since so few had been done. Because of this, at teaching hospitals especially, sales reps who were selling those new doctors hip joints were actually showing the doctors how to do the surgery... lots of times they were the ones doing the surgery while the doctors watched! And my problem with hot glue burning out my femoral nerve was NOT unusual... lots of patients had this problem. But my biggest miracle -- not having that knee replaced. Because the femoral nerve was burned, I lost my quads... quads hold our knees together, and w/o quads... I would have lost my leg within 6 months! He said there was nothing there to hold it all together. So dear people, patients who are going thru hell and back -- beware. Trust your gut & your dreams. Don't be so anxious to have it 'fixed' that you make the problem bigger then it already is. At 18 I didn't understand how I could have an 80 years old body... but at 65, it all makes sense to me. It was a warning... yes, I'd won a lot of battles, but what I didn't allow myself to see was how many more battles were going to be ahead of me. And I also have learned to accept what I have and to honor it. I now have severe OA, RA, PSa, Fibro, Shogren's Syndrome, Uveitis (3 surgeries so far, another coming up in Jan. 10), and Chronic Pain. I have been on Humira for 3 1/2 years... since it's starting to lose it's punch now & not doing as well as it use to the Rhuematoid doc is trying to get it for me once weekly... the insurance company is balking again. I have tried several other DMARD's, but had allergic reactions (from heart problem to out of body experience). It's really important to find a good pain specialist. My primary care had handled this problem for over 15 years, but I had a lot of stigma regarding taking medication. Finally I have a specialist who has truly helped me get over that stupid 'shame' thing I was going thru -- hey, this is a real problem... nobody should have to go through unrelenting pain. Keep looking for a good doctor who can help you understand it... the trick is to 'stay ahead of the pain'. And when you get to use to one type, switch to another kind... then you can go back to the other one when you get use to the 2nd one. I'm not ashamed anymore... I'm a survivor!
Sue ellen
15 Sep 2009, 10:57
To Terri,

There are foundations that can help with payment for the biologics. I have psoriatic arthritis, and went through 2 knee replacements and then it went to the hands, I left my job in January and am waiting for SS. We are living on one, very small income, my insurance through hubby only covers part of my remicade infusion (which by the way has helped a lotespecially for fatigue) and a foundation that my rhemy referred me to is picking up that other portion, which wld have been 2,500 a month for me, I cld still not afford even if I was working. so don't worry there is help out there, also hang in there. I have really bad days too, pain don't feel like going on anymore, appreciate the good days. God bless
Jean H.
02 Sep 2009, 14:06
Claudette, you should check with Enbrel directly. Drug companies usually have financial assistance in a case such as your's.
claudette
26 Aug 2009, 13:37
i have been reading these and now i seem more afraid. I am on enbrel and methotrexate and for awhile it seemed o.k.but not so good now. my doctor is thinking of switching to infusion. i am a little worried. my doctor does not pr escribe pain meds but sends me to pain clinic. she keeps up with blood work every other month, now i have lost COBRA and medicare does not kick in for 7 mos. where do i go for financial help?
Judith
17 Aug 2009, 14:51
The high cost of biologic modifiers is horrifying, and hardest on people without any insurance. For those with low enough income, some of the drug companies will help to subsidize their biologics. Although I do have Medicare part D insurance, and am taking enbrel monthly at what will be a cost to me this year of at least $1500 a month, I wondered if there is any subsidy for people of lower middle income?
terri
06 Aug 2009, 20:04

i like reading everyones text;however I am so confused on what to take next. i have Fibro OA RA.It has gotton where I work and almost nothing else just rest in evenings I fell isolated because I cant really be social I dont have the energy. I have three dogs that keep me company and a great husband, two kids 21 and 18 both in college.Struggling with pain and depression. I am taking plaquinil, nsaids ultram,lunesta to sleep and muscle relaxer.Go to Rhemotoid dr, end of August wants me to start methotexate. I already get sick all the time........
Angel
05 Aug 2009, 15:29
Pss..
Please people take the time to write the FDA & your local congressman/respresentitives. It takes all of us "together" to make changes. They need to know how we feel about the medications we are or are not being prescribed.

Arthritis Advocate
Angel
05 Aug 2009, 15:24
I totally agree with Jean.."If you can't cure it, at least let the pain be less!" There is no cure for RA. The meds they have "suck". There are all kinds of side effects to these drugs whether you get them sooner or later is the only question. These docs can kiss my A**! They are all out for kickbacks anyways..its true. Even the pharmacies are getting kickbacks off the prescriptions they sale. Its like we cant trust our own doctors or pharmacies...thats really sad! Its all about the $! Looks like every doc out there is prescribing Lyrica..hmmm..they dont even know the long term effects of this drug. Yet, we cant get pain meds that have been around forever and ever. FDA is so afraid "we" are all addicts out here that we are having to suffer in pain because the govt has their fingers in everyones pie! I have RA, Fibromyalgia,bursitis in my hip, and nerve entrapment in my elbow, so I understand pain. Im telling you...I just dont think they care.
jingyi ou
04 Aug 2009, 20:01
i have RA for only a year.i used to be a international student.now because of my RA,i have to quit my school and go back to China. being alone in the u.s. is so helpless to me.after searching all kinds of information, i find out the place where i born, guangzhou,China,the doctors treating RA are much more skillful than the u.s.doctors!never think of the benifit due to the large population.every time i got pain,they will have ways to help me out by only using DMARD and MTX.now i am living without pain.
Kim Knight
04 Aug 2009, 13:18
My son has just turned 14. He was diagnosed with arthritis (still unknown what type) when he was 8. He is currently on Feldene. It isn't working. He is in so much pain. He is now quitting sports at school. He complains of pain to his temples, jaw, back, neck, right shoulder, right knee and both feet. I have to wait 3 months at a time to see the pediatric rheumatologist. I feel helpless. It seems that with each visit we are getting nowhere. Does anyone know where I can get help for my son. I will go anywhere.
Bob M
04 Aug 2009, 12:29
I was diagnosed with Psoriatic Arthritis 40 years ago, very mild, mostly in my hands. Over that time I have been on almost all anti-inflamatory drugs. In the early 80's I was put on Methotrexate. I was on it off-and-on since then. Since 2005 I have tried Enbrel, Humira, Remicade, and Methotrexate. Since 2008 I have just been on Methotrexate and have gotten good results. In May of 2009 I developed what appeared to be the flu and went to the emergency room. I was diagnosed with Renal Failure due to Methotrexate poisoning. I will now most likely be on dialysis for the rest of my life. I had the appropriate lab tests every other month, and saw my Rhuematologist regularly.

Don't take Methotrexate for granted, it can be very dangerous.
Marti
23 Jul 2009, 15:06
Well after readig these I am not sure what will happen. I was diagnosed a long time ago when I was 7 but my parents made the decision to not tell me. I caught conversations some time where I did hear someone say I would be lucky if I was not in a wheelchair by 30. I am fifty years old ad I am not in a wheelchair and have worked hard as an RN for years. I had a accident which for some reason made what I had been living with unbearable. I have never had a day without pain and stiffness that I can remeber but now its a different story. After my accident my neurologist put me on fentanyl for my pain. I could not stand the effects from other pain relievers---pain fog, zoneing out and not recalling what I did just a few minutes before. I had been sent to a rheumatologist who confirmed that I had the autimmune disease and also told me that due to my allergies I could not take anything else. I lived with the fentanyl, lyrica, amytriptaline, and other meds. My pain stayed under control until due to insurance I had to swithch Dr. I do not know if any of you live in TN but it is a pain to find pain control here. So I went looking for a new Dr. Many turned me down ,some refued to see me after I gave them a list of diagnoses. I finally found a doctor but by then I was hurting sooo bad and my hands were totally useless because of the extreme pain that he also put me on hydromorphone along with the patch. Well after 5 months he goes into practice with another Dr. and I have been given 23 days to find a DR who will prescribe my meds for me because they will no longer precribe class 2 meds. I have osteochondritis dessecans and Alkylosing spondalytis with neuro effects fron a right temporal brain injury with neck and back injury. So After reading all of this does someone have any suggestions. When the Dr. told me I had less rthan a month to find one I lost it in his office. Not yelling at him but getting upset that I would have to go through finding another Dr. when I had just done it 6 months ago and it was so hard. well I will say goodby and maybe someone knows a med that would work and at least keep the edge off the pain.
Dian Ryburn
22 Jul 2009, 15:36
I was diagnosed with Rheumatoid Arthritis over 10 years ago. Originally, I started out on various oral medications. These included methotrexate and folic acid. Over the years, I have progressed to different medications to control my flare-ups. I have been on Enbrel and methotrexate, then switched to Remicade & methorexate. At one point, my bone marrow quit producing new blood cells. They managed to save my life (it was in question) and I was told never to take any more methotrexate. I was on it for 10 years before it nearly did me in. I can sure tell I no longer take it, though the Remicade seems to be working pretty well at this point. I take it every 6 weeks. In addition, I have a pain killer I take regularly. God bless my rheumatologist. Some days, I don't need any....other days, I need several. I have been extremely lucky in the selection of my doctors. Having had one knee replacement, I am still in better condition than I was 5 or 10 years ago. I think a certain amount of pain and swelling and stiffness just go with the problem. Positive thinking and determination help.
JennS
11 Jul 2009, 17:21
I was diagnosed with severe PA a little over 3 years ago, at 27. I was started on NSAIDs (several different kinds), then moved onto methotrexate (with increasing dosages) and eventually Humira. I had horrible, excruciating pain in my jaw, upper back, shoulders, elbows, wrists, hands, knees and feet (heels and balls of feet) along with inflammation (swelling) of all my fingers and toes - to the point that my rings had to be cut off.

The Humira began working almost immediately (within 2 weeks). I was on a combination of Humira and Methotrexate for a year, I then went off the Methotrexate and was only the Humira every other week. I was doing so well that my Rheumatologist moved me to taking the injection every 3 weeks. Last November (9 mos ago), I started to have pain in my knees and feet but no swelling. I would have random pain on and off in my legs and feet.

I moved back to taking Humira every other week, but within the last 2 months, extreme pain and inflammation has come back and I don't think the Humira is working anymore. It's awful bc I was pain-free for almost 2 years. I now feel worse than I did before I was diagnosed. I have terrible pain in my shoulders and upper back, elbows, wrists and my fingers are swollen again. At night, I hate to fall asleep because I know I will wake up several times a night with extreme pain and in the morning. I also experience terrible pain in my knees.

My Rheumatologist started me on NSAIDs again (with Humira) a month ago, with no change and I started Methotrexate again this week. I hope the combo of Methotrexate and Humira will help me. Has anyone else experienced something similar? I wonder if this disease will go into remission again and I will just get random flare-ups and then go back into remission from time-to-time (fingers crossed). I can't imagine being in this much pain and having it get worse for the rest of my life. I'm only 30!
Diane
07 Jul 2009, 15:48
Last July I was diagnosed with psoriatic arthritis. I was barely able to walk, had pains in shoulders, hips and feet and some fingers and toes had stiffened. Went to a Rheumotologist and she stared me on Methotrezate injections. After several months of limitied improvement, in February I started Remicade infusions. Wow, after my second one, I was so much better. Now after 4 infusions, I am so happy to say that I am about 90% back to normal.
And thank goodness, with no side effects, either! I am on an 8 week program.
Still on Methotrexate pills, folic acid and iron supplements, but no pain pills. I am keeping my fingers crossed (yes I can do that again without pain).
C. Meadow
19 Jun 2009, 15:16
My mother is in the process of switching rheumatologists, in search of another medication for her pain. Her pain until recently had diminished, but returned after taking a Tai Chi class to relieve anxiety. She has noticed that many of the newer medications, although effective, are not safe for older people (that over 60.) People should heed these warnings and consider alternatives where needed.
Griselda M
16 Jun 2009, 12:26
I was diagnosed with juvenile rheumatoid arthritis when I was 16 years old, I'm turning 30 soon. I feel like I have been an experiment for the doctors with all the trials of medications...In the last few years I was taking Enbrel it started pretty good but then I started getting sick lots of sinus infections, I was off Enbrel more than what I was on it, but the rheumotologist wouldn't change it, it was very frustruated. Finally I had to see another Doctor and even though he didn't think Humira would be any different he change my medications. Humira has worked for me, I don't take it with methotrexate, i wan't to not take a lot of meds, there are still those days that are horrible and people don't seem to understand what I'm going thru...I won't give up I will continue with the Humira hopeful that it won't give me any problems in the future
marty conquest
16 Jun 2009, 10:10
I've ben taking Embrel for several years now and have noticed a significant improvement in my ability to do everyday tasks. I was originaly given methotrexate and this really upset my stomach to the point of being hospitalized. Talk to your health care provider and choose the right treatment, whatever it may be
C. Meadow
02 Jun 2009, 16:57
My mother has had rheumatoid arthritis for over 30 years now, and her hands are severely deformed. When she was first diagnosed, doctors only gave her aspirin to treat the symptoms. There wasn't adequate treatment available back then and RA was difficult to detect in the blood, as well. About 5 years ago she was given Enbrel injections. She later developed shingles, which is a viral infection, and had to stop taking immuno-suppressants (Enbrel). Since, then she switched rheumatologists, and has been taking Arava, which seems to have put her in a remission, though she recently stopped taking it due to some side effects. I would strongly encourage those with RA or any rheumatic disease to continue your search for better and safer medications, and to strive for remission. Improve your diet, get extra rest and keep a positive mental attitude by reducing stress. Best of luck to you all!
Deb
23 May 2009, 23:36
I have been fighting psoriatic arthritis and fibromyalgia for 4 years. My joints totally locked up and I was in terrible pain. I found Humira was Wonderful with Methotrexate and Nabumetone for my Problems. I was feeling the Best I had felt in years. However, I had side effects from the Humira and had to stop using it. :( I am now using Embrel with Methotrexate and Nabumetone. It is helping but not as well as the Humira, but the side effects from they Humira have gone away... I started having Problems with my weight & my Regular Physician put me on Phentermine, I take a half a dose - I haven't lost any weight but interesting enough I found that it has helped my fibromyalgia and I have less fatigue. Due to Insurance going up so high, I just spoke to my Regular Physician to see if he can prescribe my medications & he said he can, so long as my Rheumatologist agrees. I will talk to my Rheumatologist about it next month about seeing her once a year. I tried Celebrex and I hate to say, but it did Nothing for me. Maybe your p/c can switch you to something else like Nabumetone or another nonsteroidal anti-inflammatory drug. I take each day as it comes and I have always been a fighter, so I am hopeful one day I will be pain free, I am better than I was 4 years ago, but I do deal with my pain and lock ups daily. I just try not to dwell on them and try to me Positive. I remind myself daily how much better I am than I was and it could be worst. I know I have good days and bad days, but I look forward to the good ones. Good Luck and I hope they find a cure for us soon.
Jean L
19 May 2009, 22:39
I have been diagnosed with psoriatic arthritis and osteoarthritis by a rheumatologist after being treated by my pc for over 15 years for fibromyalgia. The only differance I see from the primary care to the rheumatologist is the addition on Enbrel and trying to decrease the lortab 10 to one a day from 2-3 a day. I also take Lyrica and celebrex daily. At this point I am getting very upset with the rheumatologist because I don't understand where the progression of my disease is and feel my primary physician worked with me better on controling the pain at least. Does anyone else have this kind of problem? I have tried to avoid going to multiple drs. I now see why people do go to more than one for pain meds. If you can't cure it at least let the pain be less!
sue ellen
05 May 2009, 11:53
Jan,

Saw your text, I don't know either as I will be getting my fourth infusion for PA and have not seen pain relieved yet. am going on 5-13 and having a heart to heart with dr. My PA has caused 1 knee replacement and I am getting the other one this year. Had to quit work due to this.
Jan S
17 Apr 2009, 15:17
I just started Remicade treatments for AS. I've had two infusions so far and take weekly injections of Methotrexate as well. My doctor and rheumatologist say the affects are often felt after the second infusion. But I still have more that 15 minutes of stiffness in the morning and my ankle swelled up just the other day. Will things get better or am I doomed to have pain and stiffness forever?

Leave a Comment

The comment function provides the opportunity to comment on the content above.

General comments or questions to Arthritis Today editors and medical experts can be submitted here. Past medical questions and answers are available here.

Promotion of products and services and other inappropriate comments are prohibited and will be removed. If you spot one of these before we do, please send an alert.

All fields are required but only your name and comment will be displayed. Your e-mail address will not be used for any other purpose.

Name:
Email:
Text:

ADVERTISEMENT