Methotrexate and Infiximab

[mtmunster]

Hi,

I have neuro Bechets. Diagnosed September 2014 (but had symptoms for 20 years before that). I was taking cellcept and warfarin for the past 2 years, but finally -after further clot in the lung and an internal bleed -it was acknowledged that these meds weren't working and I was finally referred by the hospital who were treating me (who basically didn't know what to do) to a vascular specialist who is treating me with methotrexate and infliximab and has thankfully taken me off the other meds. I am also on Prednisolone at the moment -started at 100mg in March tapering down. Has anyone else taken these meds and how did it go for them? I had bad chest pain which has gone away now but I'm very very tired. My legs feel like lead and I get tightness in my right shoulder/neck if I try to do much. I'm really struggling with it and I'm not working either so I can't blame it on that. Ive been told that the infliximab takes 6 months to work and I've been having the infusions since March. I'm finding this very difficult -I cannot return to work at the moment and my quality of life is poor as I make plans to go out etc and then I just can't. I am praying that I will improve and find this such a lonely disease as I've never met anyone who has it. I'm sorry for moaning on but any advice would be really welcome. Thanks.

[Paul_E]

Hello, I really appreciate what you mean about this being a lonely illness. I was diagnosed nearly 30 years ago by St. Thomas', London, and I was thankfully in the RAF at the time and they were excellent with their support. I have taken all of the meds you mention (and plenty more lol!) and have taken Prednisolone for most of time with doses up to 100mg when I was getting a lot of problems with my eyes in the 90's.

I was recently started on Infliximab however it did not appear to be anything apart from making me feel exhausted and weak. I even fell asleep standing up whilst sorting my daily medication ending up with a nice bruise on my back and a lump on my head! Therefore my medication has been changed to 'Humira' which doesn't appear to be doing a lot yet but at least it's not doing me any harm!

[nanajana]

I am so sorry you feel alone in your disease. Most of us with this disease understand both the loneliness and the disappointment of trying to make plans and having to cancel over and over. I have behcet's with GI involvement. I can look back and see that I have had this disease for more than 50 years. It took a dramatic turn for the worse around 5 years ago when I ended up bedridden for 1 1/2 years. I tell you that to give you hope and encourage patience. Until I started Remicade 2 years ago, nothing made that much of a difference. However, it took a whole year before I could see some improvement. My dose and frequency was increased twice, and now another year has gone by, and I am definitely improved from last year. Not that I am normal, but I can now mostly complete any plans that I make to get out. My quality of life is much, much better! The changes are not dramatic, but over time they add up. Don't give up too quickly unless you experience dangerous side effects.

[mtmunster]

Thanks so much for taking the time to reply to me. I am sorry to hear that you've both been so ill though. At the same time I see that you've managed to live with this for a long time -this helps me as to be honest, given that I've had blood clots in the brain and in my lung, I've been really worried lately about not getting past the next few years without the right treatment. I take my hat off to both of you and it means a lot to me that you replied.

[UKADMIN Partner Behcet's Syndrome Society]

Hi there Mtmunster

If you would like to contact our helpline for a chat, please do. It is currently manned by 3 volunteers who all have BD themselves and are there to listen and can signpost and provide information too. They may not always be able to get to the phone, but please leave a message and they will be sure to call you back for a chat. 0345 130 7329. Wishes you all the very best.