Ankylsoing spondlytits & Humira

Hello All,

Its my first time to share something with you, I'm suffering from Ankylosing spondylitis 8 years ago, and its actually diagnosed 1 year ago, normal medications didn't work out, till they prescribed Humira, it was very good for 6 months I felt normal, then I started to feel that the dose effect doesn't long for 14 days like before maybe 10 or 8 in some cases. (4 months so far)

I don't know should I change humira, or should I add methotrexate as I stopped it from a while, and if I changed Humira to another one,,,,should this happen again to me ?

I wish some RA specialists could advise as its really annoying me..

thank you in advance

8 Replies

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  • I'm finding I need to have a small dose, 7.5mg, of MTX as well as humira. Why did you stop it? I've been on humira since last December and find the effects last well over 2 weeks.

  • All those things you suggest are possibilities (increase the frequency, add MTX or change biologics) but which is best for you would need to be discussed with your rheumatologist. It does seem that not many rheumatologists are particularly interested in or knowledgeable about ankylosing spondylitis, so maybe you could ask if there is one with a special interest in AS or if there is an AS clinic in your area that you could be transferred to.

  • Whereabouts are you NourGamal? I know that some folks in the US take Humira every 10 days, though I haven't yet heard of people in the UK getting it that frequently, presumably because of cost implications for the NHS.

    My experience of Humira is that it became more effective little by little over a period of at least a year so you may yet find that it works even better than it is already. I suppose everything hinges on how bad things are for you after that 8 - 10 day period and how effective it is during that time period. If you're getting 10 good days & just 4 that are a little more tricky then maybe it's not such a bad deal. And it could be that it is working well, just not for quite long enough after each dose. You'd do well to ask your rheumy about adding in Methotrexate I think.

    It's possible too that your rheumy is taking a 'wait and see' approach. Infuriating as that can be it does so often seem the most sensible course with many forms of treatment. I doubt whether any rheumy would be able to predict how you'd fare on another biologic seeing as people respond so differently. Do you find that your rheumy just won't discuss your concerns at all? And have you really tried your hardest to get some answers? I'd prefer an uncommunicative rheumy who prescribes the best treatment to one with a chatty manner who doesn't.

  • Thank you very much for your response, however it work 9 days properly and the rest 5 was a badly painful.

    I contact my DR to see him what can we do.

    I spent 6 months at beginning with Humira with amazing impact that's why I'm annoyed.

    Thank you all for your feedback, and I wish if someone had a similar experience with my case who can advise

  • 5 very painful days sounds horrible. And sorry, I thought you'd only been on Humira 4 months. I do hope your doctor is able to help. Perhaps it is time for a change of biologic .... or seeing whether adding Methotrexate helps. All the best to you, good luck.

  • I was right where you were. For some reason the Humira stopped working. So, for a short period of time we added Methotrexate into the mix, 12.5 mg, pill form weekly along with folic acid. It helped a little but not enough for true relief. So then we dropped the Humira, kept the Methotrexate and switched to Enbrel. It was immediate success, Amen!!! Maybe discuss switching to Enbrel with your doctor. I was told from my doctor, that increasing Humira to like 10 days or weekly would not help and that the risk of taking that much Humira did not out weigh the benefit.

    Blessing and keep looking up, it will get better!!!

    Brian

  • Thank you Dear, But who long did you take humira before its impact stopped ? , also for who long are you using Enbrel ?

  • I was on Humira for three years and I've been taking Enbrel for just over three months now.

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