Rheumatoid arthritis is a devastating disease. Besides crippling joints, it can leave the victim exhausted and in excruciating pain.
Over the last several decades, drug companies have offered patients a Faustian deal: prompt pain relief with serious long-term consequences.
In the 1950s doctors prescribed cortisone-type drugs to reduce inflammation and alleviate pain. These medications were seen as wonder drugs. Patients came into the office on crutches or in wheel chairs. Within a few weeks on drugs like dexamethasone, prednisolone or prednisone they were walking again.
It took many months or even years before side effects such as cataracts, glaucoma, weight gain, high blood pressure, muscle weakness, ulcers, irregular heart rhythms or diabetes showed up. Osteoporosis is another catastrophic consequence of long-term, high-dose steroid use. We’ll never forget the rheumatologist who told us that corticosteroids “melt bone.”
Many of these arthritis patients felt betrayed when they discovered that their pain relief came at such a high price to their health.
That’s why non-steroidal anti-inflammatory drugs (NSAIDs) became so popular. The very name implied that they were not as dangerous as “steroids.” Drugs like diclofenac (Voltaren), etodolac (Lodine), flurbiprofen (Ansaid), ibuprofen (Motrin), indomethacin (Indocin), ketoprofen (Orudis), nabumetone (Relafen), naproxen (Naprosyn), piroxicam (Feldene) and sulindac (Clinoril) each had its moment of glory.
The only problem with NSAIDs is that they too have some serious side effects. They raise blood pressure, increase the risk for heart attacks and strokes, irritate the digestive tract and can result in bleeding ulcers. Other complications can include visual disturbances, irregular heart rhythms, kidney problems and ringing in the ears. It was estimated that over 16,000 people died each year as a result of gastrointestinal bleeding triggered by NSAIDs (New England Journal of Medicine, June 17, 1999).
Fast-forward to the late 1990s and the introduction of “biologic medications.” TNF blockers such as adalimumab (Humira), certolizumab (Cimzia), etanercept (Enbrel), golimumab (Simponi) and infliximab (Remicade) were heralded as miracles against rheumatoid arthritis. (TNF stands for tumor necrosis factor, a natural compound produced in the body.)
By affecting the immune system, such drugs were supposed to eliminate inflammation in the joints, slow or reverse the disease process and prevent joint deformities. Many experts described these drugs as revolutionary, fundamentally altering the treatment of rheumatoid arthritis.
It should not be surprising that the TNF blockers turn out to have some serious complications. The FDA has issued new warnings that these drugs can increase the risk of certain cancers (lymphoma and leukemia). People who never had psoriasis may develop this skin problem when they stop the medicine. Because these drugs suppress the immune system, both bacterial and fungal infections may become life threatening. Liver damage is another rare but very serious reaction.
This history should lead patients and doctors alike to be cautious in looking for the next miracle cure for rheumatoid arthritis.

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  1. BGP
    Reply

    I have black and blue marks (bleed under skin) from using ANSAIDS, i.e.: Flurbiprofen for pain from knee surgery gone wrong (fractured my tibia) and rib resection 1955 and 2088 removing 4-1/2 ribs total.
    My spine turned into the cavity and I am now 5’4 instead of 5’7–it is not too evident unless I am tired. My chin and pelvis are in line–it is in-between where the problem is. I have epidurals every 4 months to relieve the pain. I also use Ultram (generic). Is there any help for the marks on my forearms??

  2. JD
    Reply

    Um, you are forgetting that RA causes terrible deformities. This isn’t about pain. SO before you go encouraging people to question their RA meds consider that being off meds can lead to damage and death.

  3. j gates
    Reply

    I have been taking feldene melt for a few years. Just lately after press I try to stop then but my whole body aches and other pain killers aren’t much good. I take blood pressure tablets beta blockers. Is this all right or can you help. I am 66 years of age. thanks

  4. SE
    Reply

    ENBREL ALMOST KILLED ME. Watch out for a fever and if you develop one, call you Dr right away or get to the ER.
    ENBREL caused me to get a abdominal cyst that I was unaware of until it started spilling bacteria into my blood stream causing Sepsis, which attacked my Mitral Valve in my Heart, and I ended up having Open Heart Surgery 3 months later.

  5. April
    Reply

    Hi, I have had RA for 16 yrs. I am only 36 yrs old. I had to have knee surgery multi-times before Enbrel. I started on Enbrel as soon as it came out.
    I never had any side effects until about 10 yrs after. Very strange, I know. Anyways, It started small like a wart on my elbow and slowing started moving. My rheumatologist thought then maybe I should change to Humira. I did and my skin exploded!!
    I was covered with a plaque psoriasis rash that I never in my life have had! It was so bad I looked like I had a flesh eating disease. Awful and very painful!
    It took a team of doctors 2 yrs to clear me, not cure me. I will have to fight this 4ever!
    I had never as much had a skin blemish must less a rash that covered over 95% of my body! It was typed SEVERE Psoriais. I was told only a small group of people had done this and I was maybe the 26th one in the world and there was NO research being done on why this happened!
    After all had failed My rheumy and I talked about how Remicade was helping people with Psoriasis and I said I wanted to try it. Oh yeah what I didn’t say was that the culprit to my breakout was TNF blockers! Remicade has a TNF blocker in it as well but Nothing was working. You name it and they had me on it trying to stop it! This was the end of the road. They told me if I as much as got a lil pimple looking spot that was new or if one of the older ones was getting bigger then they would put me in the hospital.
    Well, Remicade worked!, Why NO ONE KNOWS, not even the doctors! How long we don’t know. It has been almost 2 yrs as well. I am not spotted anymore but I am scared! I am clear but I am still having issues that seem to have been fast forwarded from all of this, Glaucoma, and now early breast cancer.
    I am a fighter and don’t want sympathy just want to find others like me. I am also looking into Enbrel’s liability. I just want to be a mother to my boys and hopefully grow old enough to see my grandchildren. I wanted a life then and I do now. It would even today still be hard to choose not to take Enbrel if it was my only choice. Thats like saying do I wanna walk or not, take your pick, I pick walk. But at what price?

  6. chill
    Reply

    I had bladder cancer. I was treated with BCG (nine installations) about 1 1/2 years ago. Since then my arthritis has become so bad I can hardly deal with it. There are lots of stories among bladder cancer patients about this strong and effective (?) drug. I guess no one wants to look into this horrible side effect.

  7. chill
    Reply

    Thank you for your letter. I could not bring myself to begin Methatrexate, now I think I will not. I am so angry that doctors do not ever present us with the terrible side effects of these dangerous drugs. Good luck to you.

  8. Pat W
    Reply

    Hi,
    I am fairly new to this entire medical problem. Let me start with my 3 disk neck surgery 8/07 within a month I noticed my hands were getting nasty looking I had biopsy done and was told it was psoriasis, then in the next month I was getting stiff joints and nodules. I was told it was rheumatoid arthritis, (I also have COPD) metotrexate was prescribed but is bad for lungs. I was then put on areva.
    I now have bladder Cancer!!! which was treated with BCG which is a bacteria. I asked about this immune thing and was ignored. It is now over 9 months and the bladder has not recovered from this treatment… The cancer is now negative but the treatment lingers on and on and on….any help ???
    P.S. they put in cadaver bone which I asked them not to do.

  9. ggmsmolly
    Reply

    More money is spent on advertising drugs than the actual research that goes in to them. That is a proven fact. Why can’t researchers scratch some of the advertising, work longer and hard to produce drugs that are safe and work at the same time. It is scary reading the side effects of some drugs that are suppose to be good for you. If it isn’t broken, don’t fix it. Unless it is critical to my health, I don’t take anything.
    I read the People’s Pharmacy column, save articles that show natural healing powers and use that rather than rely on prescription drugs. We swear by gin/golden raisins for arthritis pain.

  10. Tania
    Reply

    I complete agree with what you say. I’ve suffered from RA for nearly 30 years now
    (being 47 today). For 15 years I have started to not only leave it to the meds to look after my health, but to help my self (healthy diet, yoga, swimming, homeopathy…). Since then, gradually my life has improved, and today I live like a normal person, and I enjoy my life. So it’s really worth it to be positive.

  11. Sue
    Reply

    Lorna: is the numbness and tingling from a pinched nerve, caused by inflammation? This happened to me and I had to have carpal tunnel surgery.

  12. mom
    Reply

    DD and TL – this article doesn’t say NOT to treat RA. It mentions the history of “hidden hazards” with prednisone, NSAIDS, and biologics. There are other disease-modifying options.

  13. T.L.
    Reply

    Thank you so much for being a voice of reason. I would love to have what you wrote put in BOLD letters before any article of this type was ever printed! You are ABSOLUTELY right.

  14. mom
    Reply

    I am very concerned about the use of the biologics in young children. I read (on an insurance website) that the studies in children were set up in a way that made it impossible to determine ‘number needed to treat’.
    At every Dr. visit, we are told our child needs these drugs. We are also told that our child will need them for a lifetime. I cannot understand the logic in starting them at a very young age for a child who is happy and active.
    We would not hesitate if our child was suffering or missing out on any aspect of life, but that is simply not the case. We are very confused by the pressure placed on us to take this risk at this point.

  15. Holly T.
    Reply

    I am responding to your comments about having RA and trying to cope with Humira. I am a 29 year old patient which also is taking Hunmira for RA. I take the medication once a week for almost a year an half now. Before I had tried Humira I was miserable. I had trouble doing everyday things like walking, running on a treadmill, and even trying to keep a full time job. Nothing seemed to work.
    I tried every anti-inflammatory pill and even shots. All I ended up with was a ulcer. But with Humira at its highest dose I get enough relief that I can live an almost normal life. I have good and bad days. Weather seems to play a part of my pain level. I also get tingling and numbness like you do. On my bad days I use a Lidoderm Patch which seems to do wonders. Thank you for your comments about this disease and Humira.

  16. JR
    Reply

    DD I’m glad you are one person here with common sense. You are right! How can anyone live with RA left untreated? That’s crazy especially if you are younger person. I’m don’t want to live like an invalid the rest of my life so this is why I choose to be treated with Remicade so that I can enjoy my life NOW before I am too old to do anything!! Everyone is different and you won’t know how these meds will affect you until you try them. If you have an adverse affect to one there are many other things you can try. But not trying something because of the way it affected someone else is crazy!

  17. Lorna R.
    Reply

    I have had severe RA for 30 years. I am 48 and have had it since I was 18. I was on Enbrel for 8 years and it helped with pain and stiffness for a few years and then stopped working. I have now been on Humira for almost 2 years and it is only helping a little. I have also been having numbness and tingling and blurred vision and the rheumatologist cant seem to find out whats causing this.
    I would like to know if any one else is having any of these problems while on humira. I would also like to know if anyone else has tried the new drugs, Simponi and cimzia. I am considering asking my doctor to try one of these new drugs.

  18. Steve P.
    Reply

    I’ve been reading the comments you have all left. I don’t know if your protocol allows more than one post, but what the hell I’m 70 and allowed to say whatever I want to.
    I ‘m reading with interest the horrible reactions people are getting from these new biologic disease modifiers. They don’t seem to me to be worth the side effects that most people suffer. I tried it, it almost killed me.
    So I’m gonna stick to corticosteroids that work without the overt side effects. Incidentally, I cannot take NSAIDS because I also have to take Coumadin for Blood Clots and the NSAIDS can cause excessive bleeding.
    I had a new bone scan and my osteo is not progressing. Also, my immune system is slightly compromised, but nothing like being on the new junk they’re selling for thousands of dollars. What a Ripoff!!
    Steve P

  19. stramber
    Reply

    Thanks sooooooo much for this comment. I was a victim of immuno suppressant drugs. After 8 yrs my immune system must have gone and a Fungus Aspergillus got in and I had holes in both lungs–round opaic holes. The biggest was about 5″ as they didn’t know what it was they cut off half my lung.
    We must all look at both sides of the coin when using any drug for anything (and some of the health alternatives too). Be aware and don’t take your doctor’s word for anything. Research yourself.
    This is the voice of experience here. By all means be positive – be do yourself a favour and be aware and knowledgeable!! Just suppressing the immune system is a horrible thing to do. It can leave us vulnerable to other opportune nasty things.
    One day soon I hope with gene technology and stem cells research the whole story of RA will become clear and then specific drugs to treat. Not just kill of the immune system and hope for the best.

  20. DD
    Reply

    I found this editorial very unhelpful and downright depressing. Yes, all medications have potential side effects. Yes, all patients needs to be aware of these possibilities. I think that most people with rheumatoid arthritis will tell you that not treating RA because of medication risks is not a realistic or wise option.
    Untreated Rheumatoid Arthritis is shear misery, and unchecked inflammation destroys the body. This editorial offers no wise council, and only serves to heighten fear. My advice, both as a health professional and as someone who is living with rheumatoid arthritis, is to take excellent care of your body, educate yourself about all treatment options, and work closely with your rheumatologist to manage your disease.
    Research and find what works best for you. Eat wisely, learn how to manage stress, and exercise within the safe limits of your abilities. AND use medications cautiously and judiciously, but treat your disease. The alternative is to live in increasing pain and suffer further physical loss and disability.

  21. Joyce J.
    Reply

    I was diagnosed with RA 7 years ago. After a few months, maybe a year my rheumatologist decided I should try Humira. My husband gave me my injections faithfully every two weeks for 3 years. I did not stop or change medications but ended up with psoriasis anyway. Of all places to have it, I had a severe case on the soles of my feet.
    My Dr. switched me to Enbrel, twice a week to fight it. It didn’t help. I got an infection, stopped the Enbrel, and my feet eventually quit hurting and I could walk again. I could never see where the biologics helped me; they did not ease pain or fatigue. If I were ever going to go through the injections again, there will have to be a written guarantee.

  22. JR
    Reply

    I totally agree with Steve P. to me quality of life is more important than quantity. I am 55 yo woman who was diagnosed with RA and Polychondritis. I first tried Enbrel and Methotrexate which did not work for me. My doctor has me on Remicade and Luflunomide now and what a difference. I know what flares are like and I would probably be in a wheelchair if it weren’t for the Remicade treatments every six weeks.
    I was always a very active person swimming, biking playing sports and having RA has really puts a crimp in my life. After many years I have finally adopted an attitude that you have to live life to it’s fullest when you can. So I do as much as I possible can when the pain is at bay. And if Remicade does have bad side effects down the road at least I can say I lived MY life when I could.

  23. PMK
    Reply

    I am a white female and have had RA for 39 years having been diagnosed when I was 32. Over the years have taken ascriptin (asprin w/maalox), napersyn, gold shots, pennicillamine feldene, and prednisone to name a few. My condition continued to slowly go downhill. Until 1999 prednisone was the only drug that made a day to day difference. Then came remicade. My life was transformed and returned to me.
    I have been receiving remicade treatments since it was approved in 1999. The swelling and joint destruction have stopped. The damage was done earlier and resulted in over 14 surgeries but I am off prednisone and work part time. Actually I worked part time from 1973 until 1998.
    Now I teach arthritis water aerobics and love every minute of it. There are side affects, but I agree with Seve P that quality is more important than quantity. Those of us with RA or any chronic condition need to take control of our lives and live to the fullest!

  24. JMC
    Reply

    On a recent radio show you talked about hearing that bee stings helped ease the pain of arthritis. Joe said he had been hearing reports about it for the last 30 years. I am 70 years old and I remember as a child hearing my Grandmother talk about using this remedy and how much it helped her. I expect that was at least 60 years ago. At any rate, it has been used for a long time.

  25. Steve P.
    Reply

    In addition to having MS, I was also diagnosed with RA. Unfortunately the drug of choice for both is corticosteroids. For several years I was prescribed 1 gram Solumedrol IV for 3 days. These treatments lasted 3 days 4 times a year. Then they gave me 1 gram IV once a month.
    I continued the treatment until I realized that the protocol had compromised my immune system. I suffered 3 pneumonias over a 3 month period, one of the hospitalizations resulted in a life threatening C-Diff infection (almost lost my colon).
    Then I was dx’d with RA. Mine is episodic. One day I’ll wake up and my joints a swollen to the point that I cannot use my hands or feet.
    The “smart” Docs put me on a step up dose of Methotrexate until I reached 20mgs. Problem is they didn’t tell me that I was taking another immune suppression drug. 5 hospitalizations later, one with Sepsis that was about to kill me, I was taken off that drug.
    I do have Osteo at 2.5.
    I have made a decision in my life. I am a 70 yo male, still able to do most things in my life. I have decided to resume the Prednisone. I’m currently taking 10 mgs/day. That dosage keeps the MS and the RA at bay. I’m sure the Prednisone will eventually kill me, but QUALITY OF LIFE IS MORE IMPORTANT THAN QUANTITY. On occasion I have to up the dosage of p..sone, but I step right down.
    I hope my philosophy can help someone.

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