The following comment was posted to this Web site on Jan. 20, 2010 by April. This story captures the dilemma that so many people must face when balancing the benefits and risks of powerful medicines. Support groups can be very helpful in dealing with these challenges. We wanted to make sure others have a chance to read about April’s experience and comment on it, if so inclined.
The People’s Pharmacy
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Date: January 20, 2010
I have had RA [rheumatoid arthritis] for 16 years. I am only 36 years old. I had to have knee surgery multiple times before Enbrel. I started on Enbrel as soon as it came out.
I never had any side effects until about 10 years after. Very strange, I know. Anyway, 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 two years to clear me, not cure me. I will have to fight this forever.
I had never as much had a skin blemish, much less a rash that covered over 95% of my body. It was typed SEVERE psoriasis. I was told only a small group of people had had this. 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 rheumatologist 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 [the category of drugs that includes Enbrel, Humira and Remicade]. Remicade is a TNF blocker as well but nothing else was working.
You name it and they had me on it trying to stop the plaque psoriasis! This was the end of the road. They told me if I as much as got a little 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 two years 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; I 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. That’s like saying do I wanna walk or not? Take your pick, I pick walk. But at what price?
April

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  1. Dorothy P.
    Reply

    I have had two back surgeries and two hip surgeries; I fell in January and was in the hospital for tests; three MRI’s, several cat scans and several x-rays; nothing broken; just bruised; My back and my legs are very painful; my legs are also becoming more numb each week; I have been to two neurosurgeons this year. One ordered a mylogram and said he could not help me; the other neurossurgeon said that I needed to see a vascular surgeon.
    I need help in finding the direction to go to get relief from the pain and to get the feelings back in my legs; I use a walker to walk.
    Thank you for any help you can give me. Dorothy P.

  2. rj
    Reply

    I have been taking Enbrel now ever since it came out about 13 years ago.
    I wish to answer how you decide to take a drug that has such bad side effects.
    When it was first prescribed for me, it sat in my refrigerator for almost 3 months before I finally had deteriorated so badly that the thought of a potential early death caused by side effect illnesses from use of this drug actually seemed better than the state I was currently in. For me, I can say, this has been a miracle drug.
    I am aware that I could be waylaid by the side effects at any time. I am also aware that the past 13 years would not have been without it. I was totally bedridden and in constant crippling pain when I started taking it. While I do not want the side effects, without this drug, I am also aware that I would not have had the quality of life I have had for the past years.
    I guess that is how you decide. Understand the risks completely and then decide it the benefit outweighs the risk. When the pain got so bad I was wishing for death, taking this risk just didn’t seem important anymore. I can’t say this would be a good risk for someone who’s condition was mostly cosmetic, but if say the psoriasis is extremely painful and nothing else is working, then maybe, I have RA… a rather severe case. For me, it has been a good decision. Best of luck to you in your decision making process. It isn’t easy and drugs work differently for everyone.

  3. mom
    Reply

    “Is it possible that April had psoriatic arthritis all this time, and that the skin plaques did not show up until years later?”
    Let me guess – this is what your rheumatologist told you when you developed psoriasis? That you’ve had it all along? It just coincidentally showed up after you used a TNF blocker that is known to cause psoriasis?

  4. pw
    Reply

    8/10/07 I had 3 disks replaced in my neck (with carbon cage and cadaver bone (which I did not want). By September I experienced psoriasis on my hands found out what it was (after being tested.) By October I was told I had RA and by November I had bladder cancer…
    There is no history of any of these things in my family. It makes me wonder what could be the answer to all these things… someone else’s DNA???? The surgery was done at southern baptist in Winston Salem NC.

  5. Patricia
    Reply

    My son is 20 yrs old and has servere Crohn’s disease, the G.I. is pushing Humira as a treatment but the side effects are so frightening, how do you decide to take something that may give you such horrid side effects?
    The prednisone and methatraxate he has been on are doing him no good at this time. With Humira he may be able to say his Crohn’s is under control but now he has cancer… there is no easy answer.

  6. HBF
    Reply

    I used prescription creams and pills, including Prednisone, for kind of an ulcer on my leg. The medication finally gave me a terrible itchy rash first on my chest, then on my arms and finally over almost all of my body. I thought my skin was going to fall off, it hurt – I could not sleep.
    The dermatologist wanted to send me to a hospital. I declined and saw a Holistic Health Professional. He put me on a special diet (gluten-free) and a cleansing program. Within two months my skin was almost completely clear. The itching came back after a few months, but with strict diet and a soothing lotion it soon disappeared and never came back. I still watch my diet.

  7. ebm
    Reply

    My best friend had rheumatoid diagnosed at age 21 when he left the Marine Corp. He thinks he might have had it as early as 8yrs when he used to sit in the corner and cry from pain. They were very poor and he had TWO paper routes and other jobs then to help support the family. He was told it was “growing pains”. My feeling is that he probably had strep, a virus or fungal infection left untreated and it encapsulated/lingered and triggered his immune system to go haywire.
    He was on crutches at times but kept right on working to support (by then) his wife and two children to provide for their future since he never knew how long he would last. Then came the drugs, methotrexate injections, then Remicade which had to be discontinued because of Lupus symptoms. Back to methotrexate. For the last year he was on Orencia infusions once a month which, like Remicade makes his hair fall out, his blood pressure is hard to control even with 2 meds, same with cholesterol.
    After surgery and an infection in the hospital he got daily 2hrs infusions with Vanco-
    miacin and AM and PM Cipro orally. He had to discontinue the Orencia for 3 months and had no pain at all!!! Could it be that these strong antibiotics finally killed the
    old and new bacteria or fungus???
    I now make him take Probiotics, aloe juice and persimmon “tea” because the antibiotics caused severe stomach problems and acidity and lots of vomiting after discontinuance of Omniprazole. Thanks to the People’s Pharmacy we found out that it interfered with Plavix absorption/optimization and Plavix costs $160/30 pills! Dr. still makes him take methotrexate PILLS, 6 tablets once a week, even with Orencia. I don’t like it but it is not my body either.
    Good luck, April

  8. KFC
    Reply

    I was losing motion and strength in my arms over several years. Pain came with attempts to raise my arms or to handle small physical jobs.
    At the same time, I found my memory slipping and overall balance going up and down stairs fraught with fear of falling. I fell several times going UP the stairs as well as down. I began a regimen of curcumin capsules and a homemade
    mixture of turmeric and mayonnaise for use as spread on bread. I had and continue to have great improvement both in pain relief and motion. I can raise my arms completely overhead without pain. I also noted that the statin drugs I had been taking seemed responsible for some of my disabilities. At 77 I rather not worry about cholesterol and concern myself more with quality of daily living.
    My ability and confidence in walking and managing stairs is greatly improved.

  9. DE
    Reply

    People in our gluten intolerant support group with RA have been helped by a gluten-free diet. Medical studies have suggested a commonality between RA and celiac disease, and also psoriasis. I would assume that you have been tested for gliadin antibodies. If you haven’t you should insist on the test. Also, Healthier Without Wheat, by Dr. Steve Wagnan, might be helpful for further understanding of this.

  10. Barb S.
    Reply

    Is it possible all these miseries are immune system disorders? I suggest April do some background research on Vitamin D3, which is essential for a healthy immune response. Taking 5,000 IU a day can do no harm and just might make a difference.
    Research in small studies shows D3 also reduces incidence of many cancers, especially prostate and breast, by up to 75%. Since it is so cheap, there’s little motive for Big Pharm to study it. Instead some are trying to develop similar chemicals that do the same job, be patentable and sell for high prices.

  11. KJC
    Reply

    Is it possible that April had psoriatic arthritis all this time, and that the skin plaques did not show up until years later?
    PEOPLE’S PHARMACY RESPONSE:
    Years after the TNF blockers like Enbrel, Humira and Remicade were first marketed it was discovered that psoriasis could be a side effect. The FDA has told doctors to:
    “Be aware of the possibility and monitor for the emergence or worsening of psoriasis during treatment with TNF blockers, particularly pustular and palmoplantar forms of psoriasis.”
    Paradoxically, these drugs are used to treat psoriasis and can be helpful. It is hard to understand how drugs used to treat this skin problem can also trigger severe psoriasis in people who did not have it to start with.

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