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please read if suffering horribly with related enthesitis/arthritis, am desperate...

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Posted 9/16/2012 11:40 PM (GMT 0)
Hi, I haven't posted here in a long while, but I'm always here, reading... For me, my stomach problems for the past 8 years have been secondary to my enthesitis and arthritis. It is god awful and keeps getting worse. I take oxycontin for the pain, as well as Remicade, prednisone and 6mp, and still get hardly any relief. I have two questions for anyone out there suffering with this as well... One is, do you have anything that provides you relief? Two is, on some days, besides the pain, do you just feel overall like you have an awful flu? Like you can't move and you are so fatigued you can't do a thing? That's how I feel on my worst days which are getting far too often. Every rheumy I go to says the same thing, it's very tough to treat... Any help would be greatly appreciated, thanks in advance!
Snowbomb
Posted 9/17/2012 12:12 AM (GMT 0)
Snowbomb - I am with you on this. I was first diagnosed with spondyloarthropathy and enthesopathy, now changed to ankylosing spondylitis due to the spinal involvement. My guts went into mostly remission after being on Remicade and have stayed that way since. I battle the effects of the ankylosing spondylitis and enthesitis daily.

Yes, there are times I am so fatigued that walking feels like slogging through chest deep snow.

I have a rheumy that is very good at treating tendons inflamed at the insertion points. She injects steroids and I usually get months of relief. Of course, I have had to dial back some of my activities to keep from having repeated flare-ups. I also have found steroid injections under fluoroscopy to be very effective for treating SI joint inflammation. Have you tried/had any steroid injections at the problem sites?
Posted 9/17/2012 2:21 AM (GMT 0)
Ides- Wow, that's exactly how it feels, like walking through chest deep snow, that's perfect, thanks for that! I feel like one day they will also tell me it's AS because it's spreading throughout my ribs now, so it wouldn't surprise me at all. I've been told that they can't inject steroids into my insertion points because of my diabetes... I'm already on prednisone daily which is doing a number on my sugar as it is and they won't give me anymore steroids. It's terrible, as you know, fixing one problem always seems to set off another. Have you had any relief with your AS or enthesopathy with anti-TNF's? I don't think the Remicade is really helping much and I don't know if it's even worth it to try another one..
Thanks so much in advance for your time and help
Snowbomb
Posted 9/17/2012 1:59 PM (GMT 0)
snowbomb63, I have found sulfazine to be a very effective treatment of the enthesitis I had in my hands, elbows and shoulders. I take 1.5 g/day.
Posted 9/17/2012 3:18 PM (GMT 0)
Thank you kazbern, I'll look into that for sure... I appreciate it
Posted 9/19/2012 5:19 AM (GMT 0)
I find the joint pain to be the worst part of my current flare. Ugh! I try to avoid pain meds but have had to resort to them more recently. I do use a topical gel that is a NSAID which my GI doc said was okay to use since it was localized and unlikely to affect my GI tract in small amounts. I do try to minimize its use because I found NSAIDS like Advil do exacerbate my symptoms, but haven't noticed any effect from this.

It works incredibly fast. A dollop on the painful joint and about twenty minutes later the aching is substantially less. Its called Voltaren Gel (diclofenac sodium topical gel). Its by prescription only, I think it was prescribed by a rheumatologist but my GI ok'd it.
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