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Joined: Nov 2009
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hong Offline OP
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Actually I had been diagnosed with AS/psoriatic arthritis (not sure yet) for 2 yr and so far my MRI show there is inflammation in both of my SI joint but without erosion or bone fusion is found yet. However my ESR value still keep at ard 30-35 after NSAID for half yr. My doctor suggest me to try to use TNF to make the condition more stable....can anyone give me suggestion that should I try use TNF....and if I try to use it can I use TNF and NSAID alternatively to prevent the long term side effect and the high cost of TNF? Thx a lot for your opinion,

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I have seen someone here mention being on anti-TNF for the short term while working on diet and recovering from leaky gut problems (seems that even those of us without obvious digestive problems still have them, and that is believed to be a contributing factor to AS).
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=382607#Post382607

People who are very hard-core about diet treatment generally see results within a couple years (sometimes MUCH less), so if you went that route it should allow you to taper off the TNF within a year or two. On the other hand, extensive NSAID use is not compatible with the diet strategy because it causes further damage to the gut.

Personally, I've already tried NSAID and proven for myself that even over-the-counter versions do damage your digestive system (despite optimistic claims to the contrary from my rheumetologist). I've cut back on NSAID usage to rare occasions (less than once a week) and pain levels are low -- this is after about 6 months of working on diet.

Those who only use anti-TNF and don't pursue other solutions do end up on them long-term; some continue to do well on them for many years, and others keep switching to new types of biologics because the old types stop working for them.

And then there are those who get terrible short-term reactions and can't do anti-TNF at all: for instance, my primary-care doctor knew one person who got a bad reaction to enbrel then foolishly let someone talk them into trying again... fatal consequences.

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Hi Hong,

In my experience I guess it depends on what you mean by short term.

I've found that if I stop taking Enbrel, within 3 days I'm having trouble sleeping due to the pain.

When I stopped by accident for one month, it then took two weeks of taking Enbrel to get back to a decent level of pain.

So going off and on it may give you some problems.

All the best,

James


I ache, therefore I am

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hong Offline OP
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Thx for all your suggestions. Actually I am taking NSAID now for about half year and the pain I experienced now is only mild ...however my ESR is still at level around 30-35 now which is over 50 before I take NSAID. So I am wonder I should switch to TNF to further improve my ESR level. My doctor suggest me to try TNF but I am still wondering, whether I should try it or just keep taking NSAID as now. Do anyone have any suggestion on that? Thx a lot^^

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Hi Hong, welcome to our group! smile
I'm not sure if TNF inhibitors are meant to be used on and off. As soon as you stop taking the drug, your symptoms will usually begin to gradually creep back in. However, there are reports of some very lucky people stopping TNF drugs and being able to go several months before the pain comes back. That's quite unusual though. And everyone responds to TNF drugs differently - it's very individual, and it's difficult to predict how you will respond (although thankfully, there is research going on on that area).

I'm just curious - what are your symptoms right now? You seem to base your need to try TNF drugs on your ESR, rather than your physical symptoms. Usually most people turn to these medications because their symptoms and pain are severe enough that they impact their day-to-day living quite a bit. ESR values are still an important indicator of inflammation, but I'm just curious to how you're feeling right now.

You might also check out other medications and alternatives before going with TNF drugs. Check out Low Dose Naltrexone (LDN) or the No Starch Diet (NSD). Many people have had great success with these.

I hope you find something that helps!
Take care.

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hong Offline OP
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Thx for your opinion. Actually my symptom is mild so far and mainly mild discomfort on my buttock.That's why I am still hestitate with the TNF. Do you think ESR

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hong Offline OP
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Thx for your opinion Megan. Actually my symptom is mild so far and mainly mild discomfort on my buttock.That's why I am still hestitate with the TNF. Do you think ESR is really important and directly related to the disease activity? I am not sure ESR 30-35 is really a high value or just mildly high?


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