Enbrel an Bechets

[ABon2001]

Hi everyone! I'm curious to see if any of you are using Enbrel to control your Bechets and if so, is it helping? Also, what are some of the side effects? My current medications are no longer working and my doctor is thinking of adding this. Any information would be appreciated! Thanks!

[Stablest]

I was on Enbrel without much success for 2 years. I had fair control of the symptoms and no ups or downs I have gone onto Infliximab and am seeing better results especially in my feet and skin lesions BUT in Australia I can only have it every 8 weeks (government protocol) and I get symptoms back at week 5 to 6. my daughter was similar on Infliximab and is doing better on Enbrel. Give it a try and see what happens. Good luck. I'm still on methotrexate 25mg tab weekly. Occasionally also need depo medrol injections.

[ABon2001 in reply to Stablest]

Thanks for the reply Stablest. I guess we all react differently to each medication, I wish you and your daughter the best of luck

[nurse_ratchet]

Hi there, I went on Enbrel a little over 2 yrs ago when other med cocktails failed and I was so done and blown up fr prednisone. Unfortunately it did not put out my flare. I even got the go ahead to try to take it 3 x's a week at 25 mg a shot, thinking I was feeling a little bit of relief/energy after the shot but short lived. It did not give me any bad side effects that I could think of?

I might have been more weepy than usual-but then again it could be due to hormones:/

Better luck to you, it's worth a try!

I've been switched to Simponi as of March this year but, so far...not much for change

I wish you well on your trial and hoping for good results!

Gen

[ABon2001 in reply to nurse_ratchet]

Thanks nurse_ratchet. I really hope I get good results, the Plaquenil that I have been taking used to seem like it helped but not anymore. The Colcrys causes too much stomach trouble but does seem to help in other areas. I have never heard of Simponi, but I am newly diagnosed. I have been dealing with this illness for 10 years now and finally have the right dr on my side. I pray that you find what medication is best for you and keep me posted. Have a great weekend and keep your chin up!

[nurse_ratchet in reply to ABon2001]

I'm on those 2 meds also-plaquenil and colchicine since around 2011. It sure takes awhile for us BD'ers to get diagnosed-not an easy puzzle to figure out:/ Glad you got on with a good dr-makes world of difference!

Keeping fingers crossed for you and Enbrel

Gen

[lovenothate]

Hi, I've been on Enbrel for 5 months. I have had no side effects at all, but unfortunately I've had no positive effects either. I've been in a severe and deteriorating 'flare' for two years and have worked through lots of Meds without success. I hope you have more positive results!! Warm wishes, Will.

[ABon2001 in reply to lovenothate]

I'm sorry to hear that Will. I certainly hope they get you something that helps soon. Thanks for your response. Good night and good luck!

[Miataman]

Have you considered Cellcept? Enbrel can have some heavy side effects (like most things) Cellcept is slow acting but once it kicks in, it is very good. It has helped me a lot. The gains are high and the dangers are very low. I've not heard many folks being on it.

[Hidden in reply to Miataman]

Cellcept ( mycophenolate Motefil ) is a potent immunosuppressant and carries the same sort of risks as anti TNF's ( Enbrel, Inflximab etc ).

[Miataman in reply to Hidden]

It is potent, esp at higher doses 3,000mg but at lower doses my Dr tells me it is very safe. I am 100% managed at 1,000mg.

You are right, there are risk. Just going off of what my Mayo Dr told me, the risk are low compared to other drugs for this condition. He told me at most a 5% greater risk of cancer IF I had to stay at the higher does for my lifetime.

I have two doctors who have told me the same thing as far as that goes, if you have any more info I'd like to have it.

[Hidden in reply to Miataman]

My understanding is that anti TNF's aren't associated with a greater risk of cancer now that they have looked at the evidence from their use over the past 10 yrs.

What all these drugs ( immunosupresants ) have in common is that they can double your chance of severe infection. That is the big day to day risk and is part of the reason why Dr's seem reluctant to prescribe them. Your symptoms have to be worse than the side effects of the medication ( risk V benefit ).

The problem is that it is very difficult to predict who will have severe side effects and who won't. In the UK these meds can only be prescribed by a Consultant for a reason. I just felt that it was innapropriate to say the " dangers are very low " regarding any immunosupressant!

[Miataman in reply to Hidden]

I understand.

I guess much of that is a perspective thing. I'd rather have lower risk of cancer, I can deal with a weaker immune system. But that is just me.

It sure is scary to go on meds for a long term. You have to do as much research as you can and hope that with the help of doctors that you make good choices.