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.

[jeff rizz]

I am in contact with JHU. Has anyone here been there? if you do how do you like going there? Did anyone have a tough time getting all their medical info? It seems that any time I try to get this info it is nothing but a hassle and a run around. Any information that anyone could provide would be greatly appreciated. Thanks for all the responses so far!

[elephant]

When I went to Cleveland Clinic to see Dr Langford, my local Rhuemy said she would fax stuff to her, but they didn't ( probably forgot or got lost)....but I still go in to see Her ( the Wegeners specialist). I would try to gather what you can, and go directly to the doctors office or medical records and bring it with you or fax it yourself. Sometimes I had to do that to get things done....I know it is annoying but I wanted the specialist to see everything that she needed. So after the appointment I got what she needed by doing it myself.

[Sangye]

Jeff, you have to be persistent with the Medical Records departments of each facility. Call first and ask what needs to be done. Often they'll fax you a form and ask for a photocopy of your driver's license as id. I usually attach a letter to the form explaining what I need and where to send it (JHU address). Some places charge so make sure you ask when you call. Indicate that you need all your records-- office visits, ER visits, lab work, diagnostic tests, etc.... If you've had MRIs, CT scans or x-rays, you'll need to have them send a CD of the films along with the radiologist's report.

JHU will not review your case until they receive everything. You also should not expect to bring records at your first appointment. They need time to review them so that when you come they can spend their time better.

I see Philip Seo and just love him. He's incredibly thorough. At my first appointment, he had my entire history memorized, which is no small thing. I have a very complicated case according to him. He had made notes and highlighted throughout my records, and it was clear he had read every line. Also, they have their radiologists review your films. They found things that Mayo Arizona had missed.

The receptionist for the Vasculitis Center is Kim. She's always in a bad mood and quite testy. Don't take it personally. Just be patient and compliment her a lot and show your appreciation for her difficult job and she'll be fine with you. The other staff are wonderfully kind. You won't regret going to JHU, I know that for sure.

[Rose]

Today I had a consultation with my pulmonologist as I had not had a check up for a while and as I have been feeling a bit short of breath recently I thought now was the time. In her office we discussed my current drugs which have not really changed since drug induced remission. I mentioned that I had a problem getting below 5 mgs of pred and that when i tried had some flare symptoms in the form of joint and muscular, aches and pains. Her response was that that was most likely not a flare from Wegs as I would have symptoms in my lung and kidneys but a flare from FIBROMYALGIA, another autoimmune disease which she told me then that I was suffering from and that many autoimmune diseases overlap. I said I never had fibromyalgia to which she proceeded to look at her notes from when I was first diagnosed and read to me my symptoms which of course included joint and muscular aches and pains, fatigue etc.

I had been suffering from all these symptoms for 6 months pre diagnosis but they disappeared with treatment and since drug induced remission, they are usually the fist sign of a flare. I actually could not believe what was coming out her mouth. How I envy you people with your vasculitis centers and experts

[Sangye]

Rose, contrary to what MDs think, fibromyalgia is not a disease but an imbalance due to diet. I treated many patients with FM. The key is to clean up the diet-- especially refined sugar, white flour, etc... Sugar is the real killer. If you truly have FM it will resolve completely with a change in diet over 6-8 weeks.

There are various points on the body that are tender when you have this imbalance. This is how FM is diagnosed. Google it and you'll find charts to test the points yourself. If several points are tender you really need to clean up the diet.

Having said that, your doctor is just completely uninformed about Wegs. She thinks every flare looks the same and always affects the same organs? Bah-- we know better! I'm sorry you don't have a Wegs specialist. I forget where you live and if it's an option to get a VF consultant involved.

[Rose]

Thanks Sange. I had a look ..... I am pretty sure I dont have FM. Those roving muscular aches and joint pains I had are classic symptoms of Wegs and like most wegs sufferers, a resurgence is usually the sign of flaring. I was surprised by what she said as she was the one who diagnosed me though by the time I was admitted to hospital I was pretty obvious with major lung and kidney involvement. I thought she was very clued up but today she said a few things which proved otherwise. Feeling a bit down about this, actually!

[Sangye]

Aww, I'm so sorry Rose. :sad:

[Al]

Thanks Sange. I had a look ..... I am pretty sure I dont have FM. Those roving muscular aches and joint pains I had are classic symptoms of Wegs and like most wegs sufferers, a resurgence is usually the sign of flaring. I was surprised by what she said as she was the one who diagnosed me though by the time I was admitted to hospital I was pretty obvious with major lung and kidney involvement. I thought she was very clued up but today she said a few things which proved otherwise. Feeling a bit down about this, actually!

Hate it when this happens, Rose. Please let us know how this gets settled!

Al

[annekat]

Rose, even with my limited experience with Wegs (dx April 2011), I know about the muscular and joint pains and how they can come back with pred tapering even if nothing else does. I have not yet gotten as low as 5 mg with my pred, but will not be at all surprised if the joint pains resurface between now and then and beyond. Here's another example of a doc who would know more if they read this forum!

Anne