Skip to main content

Quick question about inflamation...
Is it possible for it to become systemic? When one part of the body starts getting inflamed is it possible that others react too? Can it be an autoimmune reaction?
Kind of like an alergic reaction when your whole body blows up...
Seems as if when I went back to work my hips went and then every single joint from my neck down just went balistic and finally my G.I. tract joined the party?
Been on mega doses of NSAIDs + opiates and can't seem to get a handle on the whole thing although after 30+ days of hell I can finally walk a block without sceaming.
Is it possible?
Sharon

Replies sorted oldest to newest

Excellent question.

Same thing's happening with me, but in reverse. I've been dx'd for the first time with pouchitis, and coincidentally (or not) I've been having very bad hip problems.

Because I have a track record of hip pain associated with taking Cipro, and had knee tendon swelling with my recent candida infection (related to flagyl), I am quick to blame any and all medications for the hip pain, but I wonder.....
P
I'll jump on the bandwagon and also say YES! However, I also learned through my own experience that it is common for the "cure" to cause new symptoms you need to deal with. Specifically, the NSAIDs. I tolerated them for years, in large doses, but eventually I developed abdominal pain, pouchitis, worsening cuffitis, and finally liver inflammation.

Once it was accepted that NSAIDs could not be used chronically anymore, that was when biologics were brought on board. That was around 8 years ago. I still use NSAIDs for flares, but only for about two weeks at a time. If that does not work, then I get steroid joint injections or a short course of prednisone.

Jan Smiler
Jan Dollar
Jan,
How does your body deal with the pred? I was on it at a very, very young age and didn't really react well with it...is it ok in short doses? I am scared about osteoperosis etc...is it dangerous? Here my rhumy says that it only makes things worse because the pain goes away for a while but then it hurts more when it comes back?????
Am a bit better but I highly doubt that I am going to be able to handle this kind of flare for much longer with 'real' help.
Sharon
skn69
Problems with short-term prednisone use are unusual, and certainly don't include osteoporosis. Prednisone earns its awful reputation from the long-term side effects. While it's true that it doesn't address whatever the heck is causing the inflammation, many such causes wax and wane on their own schedule. Sometimes the cause has waned before the prednisone is weaned.
Scott F
I often wondered that too. For the last few weeks all of my joints are hurting. It starts with my neck, then my thumbs, then my shoulders - feels like something is lurking in my blood stream to cause all of this. I took a Naproxen and feel soooo much better but don't want my pouch to get aggravated. Sharon, doesn't the NSAID's inflame your KP? I know it's been said that they can irritate a j-pouch but wouldn't that be the same with a Kock?
DH
I'm fine with prednisone, but I don't do long term and it is not very frequent. Maybe once a year or so, and only about two weeks total. I take 40mg for 4 days, then taper fast every 4 days. When in an acute flare, it works when other things do not. I am taking Relafen right now for an acute flare of my SI joints and hips. I'll give it two weeks before calling my rheumy and seeing about an injection or short course of prednisone. Anyone with a GI tract can have side effects from NSAIDs. You don't need a pouch for that. And of course, if you have IBD, you are at greater risk.

First dose today and I already am improved.

Jan Smiler
Jan Dollar
So I guess I will let my doctor try it on me...scary as all get-out though...was on it for years as a kid and it wreaked havoc on me plus with every 'alergic event' they have me on it for weeks...I don't sleep and start to blow up (have become a salt fiend so that may be part of it)...
Donna, for now, I am hanging on without too much upset but cut back dramatically as soon as the pain is in check...
Sharon
skn69
Sharon,
So sorry you are experiencing all of that, especially after everything you have been thru. I was on pneznizone for 3-4 months before I had my pouch and now have osteopenia but I understand short term a couple weeks is fine. I remember you have follicular lymphoma as I do so let me know if I can do anything to help there as I have a web site that is great for a integrative approach and I follow all their suggestions religiously and believe it has been very helpful.
C
Thank you so much Clouseau,
If you could give me the link then I could take a peak at it ...I have done nothing for the lymphoma since the diagnosis except for the occasioanl bloodwork...I know that I need to keep a watch on it but I am just too darned tired of doctors, hospitals and tests...need a break from all of this...And maybe some fun in this life before I die...(hopefully when I am old and healthy)! How are you doing?
Sharon
skn69
Good call, Allison! I've been on sulfasalazine for about 6-7 years now, at 3gm. per day. It is known to help with the peripheral arthritis associated with IBD. Axial arthritis, not so much. This is the arthritis of the spine, sacroiliac joints and hips. but, worth a try anyway, as long as you are not intolerant of sulfa.

Jan Smiler
Jan Dollar
Sharon,
This web site has helped me so much, it is very integrated in its approach which sounds like something you might appreciate. We talk a lot about how so many oncologists give such terrible info such as " eat any thing you want". Sudra is the major fuel for cancer. The site is www.lymphomasurvival.com.
I am doing fine and was diagnosed 1.5 yrs ago and it is not unusual for UC-crohns people to get follicular lymphoma. Please let me know if I can help in any way my thoughts and prayers are with you.
C

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×