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
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?