wegner's with fibromyalgia?

[jeff rizz]

has anyone been dx with fibromyalgia after being dx with wegners? thought that I was flairing put on a pred pack of 40 mg 2 days, 30 mg 2 days, 20 mg for 2 days then 10 mg till I have my appointment up from 5 mg daily. just got a call from rheumy office blood work came back fine. she said that if i was not flairing the fatigue, aches, and restless sleep could possibly be from fibro. That if the blood work came back fine that I would be tested for it. I did some research and found that fibro. can be associated with wegner's. If anyone else has been also dx. with fibro. can you please fill me in with how they tested you,treatment you received, any additional meds that you needed to take. I am currently on Methx. 20 mg. once a week. Any help anyone can offer would be greatly appreciated! always great info on here. Thanks!

[Col 23]

Hi jeff rizz, I was diagnosed with possible fibromyalgia by symptoms about a year before dx with wegners. You know chronic fatigue, mysterious aches and pains. I still think it was Wegeners. Its been previously mentioned on this site that just because bloods come back fine doesnt mean that its not Wegener's. Can anyone else shed any light?
Col 23

[JanW]

Totally true, Col. A rheumy shouldn't be relying just on bloodwork to confirm/deny a flare. For some people this works, and others it doesn't. My doc certainly looks at the bloods, but also really looks at the way I feel. Plus, were you on pred when you had the bloodwork taken, because that would certainly affect inflammation loads.

Some docs will say fibro if they can't figure out what else is wrong by using 'objective measures' but if you are flaring you need to be treated for WG, potentially by upping the mtx, switching to a new immunosuppressant (e.g. rituximab) or adding back pred (if I'm reading correctly you've been of it and in a form of remission?).

[elephant]

I agree with everyone above, I think you had Wegeners all along.

[Sangye]

Yup, me too. My labs look lovely (ie inflammatory markers are all normal) even when my lungs are hemorrhaging. BTW, joint pain and restless sleep are the two main indicators of active Wegs for me, even in the absence of other symptoms. They are 100% accurate for me.

If you do have fibro, that's an easy fix. Get off sugar and take care of the gut yeast infection as well as the HCl and enzyme deficiency. No more fibro in 45-60 days-- ba-da-boom! MDs like to call it a disease, but it's actually a result of bad diet.

[jeff rizz]

i was diagnosed with wegner's in Sept. 08. I am still relatively new at this! Had major lung involvement, both lungs collapsed after lung biopsy to test for wegner's. was on life support for a week, and my wife was told that I might not make it. Was put on high doses of pred and cytox. To make a long story short have been trying to get it in remission ever since. It seems that every time I get tapered down to 5 mg of pred from 60 mg. daily I have a flair. This latest bout has me confused, ct scan of lungs was clear, blood work came back fine, kidney function fine( have not had kidney involvement). Did not get any actual #'s of anca or sed rates but it was the office nurse that called, and I am sure you all know getting any other information from them is like pulling teeth. At my last appointment the rheumy. saidd that if my numbers where not up that I could possibly have Fibro. on top of the wegner's and that would explain wegner type symptoms even though I was not flairing. Thanks for all the responses so far, any other info anyone else has I would really appreciate it! I usually am just a reader on the board don't post that often due to the fact that I am still trying to figure out this disease myself! don't really have much to offer when it comes to advice. Thanks again always get great info on here

[Sangye]

Hi Jeff, I hope they can figure it out. I don't remember if I've nagged you to get a Wegs specialist yet. You're so close to either JHU or CC-- please consider seeing them!

As far as posting, you don't need to offer advice. Just let us know what's going on and what questions you might have, your experiences, etc.... Sometimes the most helpful thing for others to hear is "Me too!" Take care--

[elephant]

Hi Jeff, ditto what Sangye said. We are here to listen and I myself still trying to figure this out too!

[jeff rizz]

Thanks Sangye. I don't think that you have nagged me before, but I have seen that a wegners specialist is top on your list of things new patients should go see. Up until now I have been doing pretty good and didn't think that I needed to see one. The Rheumy I have at has had wegners experience before at lehigh valley hospital in Allentown and consults with a doctor from Thomas Jefferson out of Philly. (he is apparently a leading wegners specialist?) I see that you listed JHU, but what is CC not familiar with that one. I may have to look into one of the specialists. I just don't feel right, not sure what is going on! Thanks again for all the feed back. Its great to "talk" to others that understand what is going on!

[Sangye]

CC is Cleveland Clinic.

Yes, you need a doc who sees hundreds of Weggies, whether things are going as planned or not. That sense you're having of "something going on" is important. Wegs docs can help sort it out before it turns into a major issue. Don't wait-- get the ball rolling today.