Thinking about Going off Enbrel | Arthritis Information

 

hi everyone. I have had severe RA since 4/2004 and have always had trouble with staying on my medications because of the fears of cancer and other major problems.

In the beginning, I made the mistake of ignoring the doctors orders and I didnt take my medications (instead trying some natural diets-- which I didnt follow 100% so they didnt work for me).

I ended up with damage in both ankles and my right elbow joint and have had two synovectomies. (left arm worked, right arm still contracted at 90 degrees with no flexation)

I went through two looong years of severe pain, and recently I have just gotten on prednisone (I have had a fear of gaining more weight because of some blood sugar issues and gaining seventy pounds after my RA diagnosis.) I decided on prednisone orally because I went ahead and got the lapband weight reduction surgery done.

after realizing the pain and everything, and accepting the fact that I was damaging myjoints I went on Enbrel and Gold Shots. These lightened the pain a little bit, but still in extreme pain with my elbow so I wasnt satisfied.

 

I have never been so good on prednisone! It is so amazing. 5mgs a day has allowed me to have a good half day at Kings Island Amusement park with rollar coasters. Before I had to go in a wheel chair!

 

I recently got some blood tests back. High blood platelet count of 530. (normal is 140-400) so I googled that and found out that it was common in severe RA people to have that.

Im more concerned about my high ABs LYMPH blood results. I am 21 years old, and a friend of mine just died of leukymia. It hit me hard because I never thought that it was possible to die so young. So it made me realize that we are all susceptable to anything, and life is so short.

TNF modifyers are crazy. Anything that modifies the tiny delicate cells in our body is frightening to me. Especially since I am a medical student and have studied these things.

I am thinking about getting off enbrel.

Since prednisone has made me feel better than ENBREL AND GOLD SHOTS combined, and I am now on methotrexate -- do you think its right for me to do this. I just want to be healthy. I am revamping everything. Exercise, Food Intake, Nutrients and Vitamins. I just am so skeptical about these dangerous expensive blood modifying drugs.

 

please your opinion.

 

also please, if your interested please come to my web-blog. It is not just about my personal life, I have many times recorded my experiences with RA. I have also created a web-ring for RA and JRA patients on xanga. So far, I have spoken and shared experiences with quite a few people and I think that our conversations together as RA patients are very important

www.xanga.com/chabutter

sophistablack38991.5149884259It's a tough question to answer.  There certainly are a lot of unknowns regarding the newer, more powerful drugs.  One thing to consider though is the risk of not agressively treating RA. Joint damage can lead to surgery which has it's own risks, and untreated RA can lead to inflammation of internal organs, including the heart, which also has significant risks. I've even heard that untreated RA can increase the risk of certain kinds of cancer due to chronic inflammation and how it affects the body.  So, are the drug risks higher than the risk of not taking them...very hard to say.  In the end, I decided that given the uncertainty I would rather choose a path that makes me feel better now, so I'm currently taking Humira and MTX.  Clearly it's a personal decision we all have to make for ourselves...good luck!I worry about my Enbrel.  To be honest, I am glad it was not in the study with Remicade and Humira that resulted in higher risks of cancer than previously thought.  I so miss the days I thought everything I put in my body was healthy except once in awhile - I would allow myself a cigarette or a drink.  Never on a regular basis.  I ate all organic, lots of variety, vitamins, and exercise, exercise, exercise.  RA had to be devastating to me to get me to try such risky drugs but now - for me - the difference between me on Enbrel or not - I cannot trade off the quality of life.  Enbrel does not cure me but it gives me a few good days a week.  I need those days to accept the bad days.  I pray someday, lifestyle and time will allow me to try to get off Enbrel.  I don't know why but Enbrel does not scare me as much as mtx or pred.  Could be because I had such adverse reactions from both of those drugs.  It is such a tough, personal decision.  Good luck.  I am also on Enbrel and worry incessantly about the lymphoma risk. It has been determined though that those who suffer from RA have an increased risk of lymphoma so it is not clear whether it is the treatment or the disease. Curiously though, I don't recall seeing any increased lymphoma report for methotrexate.

So, I'm with you on this.

I do know, however, that it is not a good thing to be on prednisone longterm.

My RA does not seem to be as bad as some others on this board so it makes my decision even more difficult. Do I expose myself to the risks of Enbrel in order to maintain my activity level? Or do I go for a more sedentary lifestyle but less agressive drugs?

But bottom line is the progression of the disease needs to be halted. I finally made my decision to go on Enbrel when I realized I had lost some range of motion on my wrists in a relatively short period of time. I am 41 years old and hope to be moving around at 70-80-90.

If I develop lymphoma next year will it be worth it? Of course not. And therein lies the conflict.

Copyright ArthritisInsight.com