GI symptoms?

[Juliesjewels]

Thank you ingemlb & others. This thread has explained & made me realize others suffer with various unexplained symptoms for a very long time before diagnosis. All of my problems were GI related & started in 2011. Stomach ulcers, terrible abdominal pain, reflux, & gastroparesis caused by inflammation. But no one knew why all these problems started. Drs only treated my symptoms. About a year ago my sinus problems & pain & fatigue started and/or worsened to the point that my nasal septum basically necrosed. It was gone. Just a hole where the septum should've been & I still had crusting & breathing problems. That ENT suspected WG & biopsied nose but biopsy showed non-specific inflammation & I was ANCA negative so ENT operated to rebuild septum. A four hour surgery was successful but now 4 months post surgery the tissue has died again & I've got another hole. The joint pain is horrible. My rheumatologist will let me stay on 20-25 mg prednisone a day but won't prescribe anything else to treat vasculitis until I can get a positive wegeners biopsy. I don't know what to do. We live in tx & my husband wants to take me to mayo or Cleveland clinic or somewhere that will diagnose the WG & start to slow down this disease. Any advice for me from anyone? Thank you for listening.



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[ingemlb]

Juliesjewel I would head to the Cleveland clinic ASAP and get that diagnosed. I was put onto 40 mg of Pred to get this under control before starting on the Methotrexate. It sounds like there is enough evidence of WG and you have the same issue as me "non-specific Inflammation" only I was "lucky???" to have a high Anca score. I saw a very good youtube made by the Cleveland Clinic which makes me feel they have a LOT of Wegener's experience. here is the link:

https://www.youtube.com/watch?v=KS025XnKxbU

Suggest you watch this. It takes about 15 minutes.

I believe the Mayo Clinic is also good. I am in Australia so I don't have personal experience with either clinic but speaking just from what i have heard.

Hope you get some relief soon.

[LisaT]

I agree with Ingemlb. Refusing to treat your disease without positive biopsy or ANCA sounds negligent to me. If travel is a hardship maybe a second opinion where you are? The disease presents differently in everyone and chooses its own pace, but you've already suffered too much damage. It needs to be stopped in its tracks, on YOUR timeline (ASAP), not that Dr's. I wonder whether he or she is thinking they need the biopsy result to justify the expense of the meds? Sometimes it seems to boil down to economics as if a price can be put on your life or your quality of life. Don't be afraid to fight for better treatment. You deserve it and need it. Good hubby for wanting to take you wherever it's available.

[MikeG-2012]

I agree with Ingemlb. Refusing to treat your disease without positive biopsy or ANCA sounds negligent to me.

But unfortunately, that seems to be the NORMAL ROUTINE with this disease. I believe it is up to us, the ones who have it, to educate as many people we can to help others get a diagnosis and treatment! Hopefully SOONER than before the damage is done by the disease!

[annekat]

I'd still like to know what a granuloma looks like!

[drz]

I think an expert in Wegs can diagnose and start treatment of Wegs without a positive biopsy. Others with less experience and knowledge of Wegs may not be comfortable doing so.

[jvilner]

Agree with drz. My rheumi held off 2 months waiting for a biopsy that was inconclusive. But afterwards didn't wait and gave me the meds to slow progression.

[marylz]

I am proof that doctors will start treatment without a biopsy. In my case the biopsy would have done more harm than good had they done it. As it was the doctors ruled out everything else and felt confident in diagnosing me. On to CTX and then RTX... seem to be getting better. I have the greatest confidence in my team of doctors!

[Juliesjewels]

As an update on me because you all are so caring & took the time to write. I asked my ENT for a second biopsy going to a well re known lab in Houston. Those results are a week away. Next rheumy is keeping me 25-30 mg prednisone until biopsy results then a treatment. I will post results on a week. Thank you all for caring.


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[Debbie C]

That was the dr. I see on that you-tube clip, I wonder why he didn't ask me to be in his video. I'll have to ask him when I go up in Sept. !!! But as far as the anca test goes mine kept coming back neg. for the longest time even after I had a lung biopsy that proved I had it. That's why he doesn't include that in my monthly bloodwork.
Julie are you getting bloodwork done ? the sed rate should show some inflamation.
Anne, a granuloma is a nodule like a mass that will show up. I keep having them come and go but my kidney dr. said anyone can have nodules and it can be nothing that's why they need biopsied.
Good luck with the results Jewels,let us know.