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Joined: Nov 2008
Posts: 28
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Joined: Nov 2008
Posts: 28 |
Hi Folks so I have had AS for about a million years. I have been on Embrel for about 5 years now. Used to be one injection per week. About 18 months ago I started to stretch it out - one injection every 10 days, then once every 2 weeks. for the last few months have been only injecting once per month. Now I find, I have not injected for about 7 weeks. No symptoms, no pain. I don't really want to have to inject. Is there any way I have gone into remission? Or will I eventually start to feel the pain again? Or am I harming / endangering myself by not injecting? Or have I gone into remission (does that ever happen?) What would you do in my circumstances? Thanks Lorcan
Last edited by Lorcan; 10/14/15 05:55 PM.
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Joined: Jul 2001
Posts: 3,334
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Joined: Jul 2001
Posts: 3,334 |
Enbrel could still be in your system due to its half life: Etanercept imitates the effects of the naturally occurring soluble TNF receptors. However, as TNF is a fusion protein, rather than a simple TNF receptor, it has a much longer half-life in the bloodstream. In other words, etanercept has a longer-lasting effect in the bloodstream than the naturally occurring soluble TNF receptors. http://www.medicalnewstoday.com/articles/180143.php
Timo
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Joined: Nov 2008
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Thanks Timo
I suspect you are right. A bit sore in my sacral this morning. Drat!! I wonder do people ever ggo into remission with AS?
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Joined: Nov 2008
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Thanks Timo
I suspect you are right. A bit sore in my sacral this morning. Drat!! I wonder do people ever ggo into remission with AS?
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Joined: Feb 2015
Posts: 7
New_Member
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New_Member
Joined: Feb 2015
Posts: 7 |
Hi I did the same as you Lorcan, I started to stretch out my Humira doses. At first I worked out I could go a month without a shot, then 6 weeks. Eventually I decided I would try coming off it completely, I was scared of the pain coming back but in the end I just did it without planning to. I managed about 8 months without any major flare ups or pain, then I got a major flare up in my neck and back that crippled me, I could barely tolerate the weight of my own head and couldn't move my neck without shocks of pain. I took another shot of Humira to calm things down. Again I went about 8 months without any pain, after a holiday in Greece where I had a bad flare up in my gut (I have some sort of IBD that's not that severe). Now it's tolerable but constantly present. I may take another shot while I am working out things to do with my diet and such like but I think I could probably mange on 2 shots per year, where as the guidance says to take a shot every two weeks.
Diagnosed with AS 25 years, just stopped anti-TNF too see if I can go drug free by adjusting my diet.
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Joined: Dec 2013
Posts: 169
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: Dec 2013
Posts: 169 |
I'm really excited to hear you say that,Lorcan and Redmazzy.
I'm meant to be on bi-weekly injections but have pushed it back to every three weeks. The only reason I haven't pushed them apart further is because I remember the pain all too well and am deathly scared of it returning. My meds are free at the moment but my goal is to move to the tropics where I'd have to pay full price. I've taken all sorts of antibiotic combos(natural and not), tons of pro/pre biotics and nutrition nazi'd myself for years on end. I wonder how far I can push back the intervals and am encouraged and inspired by your posts.
Redmazzy? Can I ask what your symptoms are when you say "IBD that's not that severe." I have had issues in that department as well but the docs haven't been able to figure anything out. Feel free to PM me if you don't want to talk about it in open forums.
Good luck.
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Joined: Nov 2008
Posts: 28
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Thanks guys - really appreciate your comments. So, Redmazzy, I held off injecting until today. Thats about 3 months since my last injection. Like you, it was my neck - severe pain and loss of mobility - feeling like a robot. So, lets see what happens. Hopefully the pain will stop tomorrow or the next day and I will try to hold off injecting for another couple of months. Why take more of this stuff than is necessary.
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Thanks guys - really appreciate your comments. So, Redmazzy, I held off injecting until today. Thats about 3 months since my last injection. Like you, it was my neck - severe pain and loss of mobility - feeling like a robot. So, lets see what happens. Hopefully the pain will stop tomorrow or the next day and I will try to hold off injecting for another couple of months. Why take more of this stuff than is necessary. Just a word of caution. I've read many times from many sources that the further between injections, the more likely that the body will produce antibodies to the biologic rendering it ineffective over time. Thus even when I feel pretty good, I take my humira by day 14; if I'm not feeling so well, I take it at day 10. I recently had a GI bug and so held off til day 23, but that was the longest I've gone without it. Do as you and your doctor think best, but just this word of caution. I'd hate for this to happen to you (become resistant to the biologic) without having heard of this.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Nov 2008
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thanks Sue Really? I never heard of this. That scares me. I will go back to once per fortnight so. I would hate to become resistant Thanks again Lorcan
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Joined: Apr 2015
Posts: 29
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I wouldn't mess with the AS monster. Permanent loss of mobility can happen quite quickly during a flare.
Also, people have been known to fuse without pain. Though it's not conclusively proven, there's every reason to believe biologics stop radiographic progression.
Those seem like good reasons to take biologics on schedule, in addition to the most important reason already mentioned.
It's easy to think you've got this monster under control and it can leave you sorry forever.
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