Jump to content
Sclero Forums

Checking Back In ...

Recommended Posts

Hi! Thought I would check back in with you guys - hope everyone is doing well.


I have a "double-edged sword" diagnosis for now.


My Rhuematologist thought I had a good chance of having Wegener's Disease. I went to an ENT who is also an expert in WG. He said that while I had a lot of symptoms consistent with WG, he didn't believe I had it - even though he could not guarantee that I don't. He said that biopsies are very risky - and my bloodwork (except for above-normal c-reactive protein) and chest CT were negative which tended to steer him away from wanting to do a biopsy (specifically, for my sinuses). My sinus CT showed abnormalities consistent with WG, but, my structure wasn't being eaten away which is a tell-tale of WG. For instance, while I have a significantly deviated septum ... people with WG have perforations or deterioration.


So, they believe that I have a Small-Vessel Vasculitis of some kind. It seems to be limited to my skin and joints at this point. They are not able to tell me if it will progess into something worse, stay the same, or disappear. Kinda doubt it will disappear since I've been symptomatic for a year now.


For now, my rheumatologist has put me on Trental to see if that will help the rash and joint/swelling issues. I was on Colchicine, but that didn't seem to help enough.


So, that's where I am!

Share this post

Link to post
Share on other sites



Thanks for giving us the update. Sorry it isn't more specific and that WG can't be totally ruled out. But, all in all, it does sound like you have some very knowledgeable doctors who know what they are doing and what to keep an eye on. I hope that the new medication gives you some relief. Please do keep us posted on how you are doing.


Warm wishes,


Share this post

Link to post
Share on other sites

Thank you Pamela and Heidi. I'm satisfied with what the doctors have done - and I know that I'm in good hands with my rheumatologist ... I'll probably be seeing him once a month for a while.

Share this post

Link to post
Share on other sites


It's so good that you have confidence in your doctors. It certainly provides the reassurance that they are working on your behalf. I hope when you go back in a month that the rheumatologist has more helpful information. Please keep us informed.

Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now