Am I crazy for wanting off of this "miraculous" drug?
I ask myself the same question often I have to say ! Here's my view on it : spoiler alert : it's going be a long post !!
Before starting Enbrel I was in constant pain for about 2 years (constant but getting worst & worst) in most of my peripheral joints : feet ankles knees elbows shoulder neck wrists fingers... Those were dark times with a lot of dark thoughts. Then I was put on Embrel & literally overnight got better. Within a couple weeks I felt "normal" and was full of beans !! I got my life back. Miracle ? Hell yeah !! However I still needed methotrexate and I tried stopping NSAIDs but I couldn't, the pain & fatigue would come back within a couple days. So over the next 3 years I stayed on that trio of drugs : Enbrel 50mg/week, mtx 20mg/week and mobic 15mg/day. I lived as close to a "normal life" as anyone with AS could wish for. I brushed AS under the carpet and enjoyed blessed denial.
Then over the past year, I've started "taking an interest" in my body and AS. I started taking those drugs when I was 25 (17 for the NSAIDS), and I don't think I can keep taking such strong drugs for the rest of my life. I don't think my body could cope with it for another 50 years or so (hopefully). After all MTX is low-dose chemo, can it really be a good thing long time ? And I also started to look at immunodepressant differently. A good metaphor I think is this one : it's like if your fire alarm starts blaring, and you take the batteries out : the noise won't bother you anymore but your house is still on fire ! That's why I feel about anti tnfs : they are doing a great job of covering the symptoms but are not addressing the cause of the problem. And that's exactly what I've been trying to do through diet. Understand why my immune system goes berserk. Listening to my body & working with it, not against it.
So I've started weaning myself off drugs, and when I started struggling following a very stressful time, I went NSD and was able to completely drop NSAIDs for the first time in years ! I'm now down to Enbrel 25mg/fortnight and MTX 7,5mg/week, no NSAIDs. I'm seeing my rheumy end of January and hopefully drop it altogether. I do have some pains although I'm fully functional and exercise a lot. I'm trying to determine whether I'm in more pain now than when I was on full dose but it's hard. Pain is so subjective I find it hard to remember how much pain you felt at a specific point. I think today's pain always feels worse than yesterday's pain. When I see my rheumy I'm gonna ask him for some imaging, to see if I've got any damage ( compared to previous ones taken before anti tnfs).
I've still got a long way to go diet-wise and plan to do a strict elimination diet/heal the gut plan in the next year (I've been a naughty girl over the holidays). I want to exhaust the "natural remedies" route (I'm also doing acupuncture & taking Chinese medicinal plants). Then & only then if I can't manage my pain this way, I'll get back on the hard drugs.
I'm also planning to start a family, so if I can't wean myself off drugs I'll have to explore other routes, like adoption.
I hope I've answered your questions, don't hesitate to ask anymore and let us know how ur weaning off goes !!
Stay strong !
Marion
