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Joined: Jul 2015
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Hi all,

I'm new to this forum so let me begin by expressing my gratitude to all the people who made this forum possible and to those who take the time to answer questions and support each other. Thanks all!

I've been suffering from AS for the past 20 years. But it took a long time for the diagnosis to be made and by the time I was put on Remicade ( 8 years ago ), most of the damage was already done. By now, my spine is fused and I've limited range of motion in my neck. My left hip also has limited range of motion and can sometimes be painful, esp. if I've been standing or walking for a while. But other than this pain in the hip ( which NSAID's help in controlling) I don't have much pain or discomfort. The pain levels in the hip are only slightly reduced after the Remicade infusion every eight weeks. Other than the Remicade, I do not take any other medications or follow any special diets.

Hence, I was wondering if the AS is mild or gone into remission and if it still makes sense for me to continue with Remicade or can I discontinue it and manage with just NSAID's. The reason I am asking is because I'm concerned about the long term side effects of Remicade and feel like I'm basically nuking my immune system unnecessarily. I understand that NSAID's are not without risks but I think I can manage them better by using them occasionally. So, do I have other options or, as my doctor said, pretty much stuck with Remicade for life?

Thank you for any thoughts you may have on this.

F
Frederick
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Originally Posted By AsX



Hence, I was wondering if the AS is mild or gone into remission and if it still makes sense for me to continue with Remicade or can I discontinue it and manage with just NSAID's.




The general rule I think is to always manage on as little medication as possible. I still take NSAIDs. even though I am on Anti-TNF (Enbrel) but that is only because I need to. Whenever I get a good few days I try to manage on fewer NSAIDs. Eventually the A.S. flares up again so I then go back to the original dosage. I find it easier to reduce the NSAIDs. than the Enbrel as with Enbrel it seems to take longer to take affect.

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AsX,

I can totally relate to your experience and your perspective on meds.

Keep in mind, I am not a dietician or a doctor. Diet talk can be as polarizing as religion or politics so I try to tread lightly here.

Modifying diet is an effective way to reduce inflammation, IMO. I would encourage you though to read up on food and autoimmune disorders. There will of course be conflicting ideas as to which diets are the way to go. At the very least for the best starting point it's been my experience to steer clear of refined sugars, processed foods, wheat, dairy, and alcohol.

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I'll make an analogy..when people with HIV did the triple cocktail, their HIV count went so low, it could not be detected...but as soon as they went off the drugs, HIV came roaring back.

I know for myself, that Humira has not "cured" my symptoms; it has only repressed them. While I'm on Humira, I'm pretty good...to the point that I can often be fooled that I"m "fixed", but then before I get to my next shot, I realize that Humira has only been reducing the body's inflammatory response and as soon as I stop Humira, I'm back where I was before...not somewhere I want to be.

Sounds like Remicade is working so well for you, that you don't get to that "I need my biologic!" spot like I do, sounds like they have it spaced out so that its always helping.

I agree with your doctor...with that said, you could use less of it, less often.

They told me when I started Humira that first they'd make me feel better, than a bit worse, until we saw how often I could take it. I think the idea was that I wouldn't need it every 2 weeks, and could get by even longer. As it turns out, my body needs it almost weekly, so instead of stretching it out, we shortened it to every ~10 days. I'm approved for 7 and sometimes I need it after 7 days, sometimes I can stretch it out to 14 days...but usually its between days 10-12....occasionally when sick, infected, having a minor surgery, had to stay away from it longer and boy could I tell I still needed it!

When a medication (even a biologic) does what its supposed to do, it can falsely make us think the problem is solved...its not, only managed.



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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@Frederick

I agree, trying to avoid heavy use of NSAID's.

@jackson

Thanks for the diet tip! Having healthy & natural food definitely helps!

@Sue22

Very true! I understand how easily one can be lulled into a sense of complacency when everything is working...will keep that in mind.

Thanks all for taking the time to reply! Truly appreciate it! Please forgive the delayed response. Take care.


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