Infliximab infusion

Hi ,

I have had bechets most of my life, and have been in and out of remission, 3 years ago after a 4 year break it came back with vengeance!! I have not been able to get it under control this time and at the start of the year began infliximab infusions.

Has anyone else tried infliximab? And if so did you see any positive results.

So far all its done is brought on drug induced lupus and fibromyalgia for me. So I am yet to see how this is a good option.

My problem is that I have tried all other drugs and this is the end of the line as I have to come off the steroids (my magic pill)

All advice greatfully received.

Zowie

5 Replies

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  • Hi,

    I have Behcets too and after trying various combinations of pred, mycophenolate, Azathioprine and cyclophosphamide (and others) I've ended up with Infliximab and methotrexate.

    I've just finished the loading dose and feel much improved generally. Personally I've found the drug to be fantastic but as I'm sure you're aware, every drug works differently for each individual.

    Good luck!

  • That's interesting, I am not doing the combination with methotrexate as when I tried the tablet form I was really sick so I asked not to have it, I have done the loading dose and I am about to have the 3rd top up next week. If you don't mind me asking did you try methotrexate in tablet form and did it make you sick?

    Thanks for the reply and good luck to you too!

  • Hi Zowie

    I am so sorry your remission has ended. I have tried Infliximab/Remicade, but found out I am allergic. My doctor had high hopes for it as well. I say give it a try. BD is so illusive and we never give up. I really hope you find some comfort. Don't give up hope; new meds are on the horizon.

    Xoxo

    Ash

  • Yikes! Zowie.....so sorry you are going through this:/ I have been dodging that infusion bullet for past year. I too have had BD since childhood but only dx for certain in 2012 months before it hit with a vengeance after 10 yrs. Wish I knew how good I had it:( It's been constant big flare since Oct.2012 and have tried all the meds and on my 3rd type of injection now-kineret.

    So far no luck. I am terrified to try infusions as I have the crappiest veins ever. As it stands right now, they are(dermatologist and rheumy) investigating me for Lupus😢 and I am convinced I have developed Sjogren's in past months...it makes so much sense.

    I hope for your sake the infusions work! I have heard other BD'ers say that infusion provided remission. What happens with all these other syndromes/disease in the mix? How do they treat that?

    Wishing you health and luck-sorry i have no answers for you:/

    Gen:)

  • Hi Zowie,

    I'm sorry to hear of your experience with Infliximab. Have you tried Otezla? Clinical studies suggest it is a promising treatment specifically for Behcet's. Two of my specialists have suggested I add it to the Simponi and Methotrexate I already take. I have a starter-pack of the drug and am I'm looking for an opportune time in my schedule to try it.

    Best of luck.

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