Advice

[Victoriaitsnosecret]

Hi everybody- I haven't been here in a long time. Besides my own stuff I also have a child that's going through some tough times. I was diagnosed a little over a year ago. I went to the ER for a pain in my left arm and thought it was maybe cardiac related. As part of routine procedure they did a chest x-Ray and came back and told me I had TB because I had some large cavities in my lung and one was a pretty good a size. I was quarantined immediately. I told them there was no way I had TB. I work with homeless families so we get tested every year and I had just had a negative TB test a month or 2 ago. Nothing was coming up in the blood work. There was talk of parasites, viruses, etcetera. Long story short it took about 3 months and three biopsies later to get a diagnosis. Wegeners but still the ANCA test was negative. I started treatment. Prednisone and methotrexate. Besides fatigue I felt fine. The Doctors said I should have been really sick given the holes in my lungs. Fast forward no change in the holes. No new symptoms, just fatigue which is making it really hard for me to go to work. Blood work is fine. Fast forward a little more and I'm off prednisone for a few months now. I'm having stiffness in my hands and knees and pain along the side of my legs. My finger tips are tingly and numb. I tell my doctor he says I have Carpal Tunnel in both my hands and he gives me braces to wear at night. He sends me to have blood work and I have a Vitamin D deficiency. Lhasa anyone had this happen or experience the same symptoms? I stopped working last June, the fatigue was too bad. Anyway. I just wanted to hear some of your experiences. Thanks- victoria


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[Dirty Don]

Welcome back Victoria, really sounds like you're having a flare with the soreness, and numbness. The continued fatigue may be a sign of the mtx not working well enough. My mtx has never allowed a full relapse, but pred reduction for me brought on similar symptoms last Sept. I'm now almost off again...we'll see...and just a bit of fatigue from time to time...that may well be a part of WG we can't/don't get past. Best to you.

[Rose]

You can be flaring with normal blood work. It has happened to me and to others. I think if you have been diagnosed with WG, you are off drugs and in 'remission" and you experience symptoms, especially when you are having them in different parts of the body, they should think WG flare before anything else and treat you accordingly. I have found that doctors go too much by blood work and not enough by "listening to their patients" Is Carpal tunnel causing the pain in your legs and making you severely fatigued?

I had no lung symptoms either and also no kidney symptoms when admitted to hospital. It was severe swollen joints and migrating muscle pain which left me almost disabled, daily spikes in temperature, racing pulse and sinus problems and feeling so terribly ill that got me admitted. A routine X-ray surprised everyone and I was told that it was possibly TB or cancer. I did have a fine needle lung biopsy which ruled out cancer and TB but could not say what it was and so I was booked to have an open lung biopsy but then blood and protein were picked up in my urine and U and E results were coming back. My doctor, a Pulmonologist had a good idea by this time what she was dealing with but only gave a diagnosis and began treatment once WG was confirmed with a kidney biopsy.

Rose

[mishb]

Victoria, I agree with Don and Rose :sad:

It is more likely a WG flare than carpel tunnel - you may need some pred again

[renidrag]

Sounds like a flare to me. Is there anything in your work or lifestyle that would support Carpel Tunnel? Hope you get to Doc soon, I forget was it Mass General or Boston Medical? Hope your child is doing better also.
Dale

[Alysia]

Hi and welcome back.
the pains can be a flare. the numbness can be neuropathy because of WG.
I echo Michelle about going back to pred :sad:
I hope your child is feeling better and I hope you will soon :hug1:

[Victoriaitsnosecret]

Thank you- I'm still taking methotrexate so I don't think that's considered remission. If these are new symptoms maybe they mean the methotrexate on its own isn't doing the trick? I have an appointment April 8 with my Pulmonary doc and will have a scan of my lungs. The day after I'm scheduled to see the rheumatologist. I also have the sinus stuff going on and the saddle nose. It's not that bad yet and hopefully won't get worse. The carpal tunnel could be from work but I haven't been working since last June and these symptoms are fairly new. As I'm typing now my finger tips are starting to tingle. My thumbs are stiff. I feel like I just have all this random pain. I've been thinking about getting a second opinion. Has anyone experienced bloating? There are some days I feel like I've gained 15 lbs and then it's gone the next day or so. Anyway. Thanks for sharing. Victoria


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[annekat]

People can be in what's called a medicated remission but not showing symptoms. They would need the meds to continue having no symptoms. No one has ever said I'm in any kind of remission, but I've been pretty stable and feeling well for periods of time. I did have a moderate flare after being on MTX for a few months, and the dose had to be upped, along with the pred. I've tapered down a lot on the pred since then but stayed at the same dose of MTX, which is 15mg. a week. I'd been started at 10mg./week after stopping CTX. Apparently, that was just too low a dose, and that's why I flared. So whatever dose of MTX you are on, it is possible that you need a little more, and to go back on pred, with the symptoms you are having. A second opinion wouldn't hurt; I've heard there are some good WG docs in the Boston area and I hope you are being treated by one of them.

[renidrag]

I understand the bloating. When I was working and before diagnosis, I would be driving home and my belly felt like it was expanding and I needed to stretch my back as straight as possible and sit up as straight as I could. When I got home and stood up, it went away. It gave me the "full" feeling and happened almost everyday. Don't remember when the feeling went away, probably when the prednisone kicked in and actually did give me a big belly.
Dale