View Full Version : Molly

12-07-2009, 08:52 AM
I was diagnosed 6 yrs ago,I have problems with my sinuses,ear problems,general fatigue.
I tend to have a flare up at this time of year,numerous infections,am on Cellcept to try and manage WG
Was admitted into hosp 2 weeks ago because WG had caused severe narrowing of the windpipe,had to have it dilated (Broncoscopy using a baloon) am due back in Hosp to check if it has kept dilated,if not got to have a stent inserted.
Because of this crisis it was highlighted that i should see a Rhematologist and to have a blood test to check my ANCA levels.I feel really let down with the Medical profession because they dont seem to know what they are doing,i know it is a rare condition but it is very worrying as to what the future holds,
Has anyone had a similar experience
Thanks annette

12-07-2009, 09:37 AM
Hi Annette,
Welcome to the group!

I don't have those same symptoms, but I have had doctors who are not Wegs specialists. Not only do you need a rheumatologist to oversee your care, but you need one who specializes in Wegs. Where are you located? We might be able to direct you to better docs....

You also should be seeing an ENT who specializes in Wegs. They often have different criteria and procedures for dealing with tracheal stenosis, because some procedures create more scar tissue in people with Wegs.

12-07-2009, 10:30 AM
Hi Annette, Welcome. I am on 2000mg of Cellcept along with other drugs to keep my WG stable. Like Sangye stated you really need to see a Wegeners specialist. Any type of flare usually means an increase or change in medicine. You are the only one who know's your body well. When my sinuses were causing so much pain and discomfort, I knew we had to do something else. I kept telling them, we need more meds. I was on high doses of Prednisone! When we have these flares other things are going on in our body ( damage) that we may not even know. I had a big lung nodule and they removed because they weren't sure if it was Cancer or WG. So I had no choice, but to get it removed. OF course if was Wg. So I have learned that I need to be persistant and trust what my body is telling me and articulate that to the medical doctors. Hope all works out for you. I know that the Medical University of South Carolina ( MUSC) in Charleston,SC has some great ENT's.:D

12-07-2009, 10:36 AM
Hi Annette,
Sounds like your Wegener's is far from being under control. Are you taking prednisolone as well as the cellcept? You need both to bring its activity down. In fact, it sounds as though you probably need something a little more aggressive than Cellcept which is more suitable for maintaining control once the disease is in or near remission.
I would try to find a doctor who has more knowledge in this area before even more permanent damage is done.

12-08-2009, 06:13 AM
Hi Jack
I am struggling to find a WG specialist,waiting to see a rhematologist.Are you under a specialist
Regards annette

12-08-2009, 07:14 AM
Yes, I'm lucky enough to live near a teaching hospital with a vasculitis research team so I'm quite well looked after now. My initial experience was not so good, the ENT surgeon treating me then missed all the symptoms and I ended up loosing my kidneys and nearly my life. :( Hence my concern that you should find the right person.

12-08-2009, 11:26 AM
I, too, had major damage for 2.5 yrs because I didn't have a Wegs specialist. It makes a world of difference.

12-14-2009, 12:06 PM
Annette, I have a rheumy but no weg's specialist. Without this forum I would be totaly lost and have no support whatever. Please get a weg's specialist if you can, if nothing else, they have enough patients with weg's to be sympathetic to what we have to go thru.

12-14-2009, 04:36 PM
Also, get on the internet and learn as much as you can about the disease because you need to be at least as aware of current treatments as any doctor you see. We can guide you on this forum, but you still need to be you own best advocate when you see the doctors.

Front Page | Vasculitis Foundation (http://vasculitisfoundation.com/)

This link is a good starting place, especially their section on questions to ask your doctor.

12-15-2009, 01:46 PM
Molly (also my oldest daughters name)
I had severe narrowing of the windpipe and ended up wearing a trach for 7 1/2 months. If they tell you that is what they need to do to keep you alive, don't fret it. I got used to it rather quickly and although I always wanted it gone, I would have kept it forever with no complaint because it wasn't that bad.
I hope your situation does not lead to that....I have had numerous broncoscopies AFTER the trach and so far so good. I am not sure if you are on prednisone or not, but that seems to have kept mine under control. I DO, however, hate the pred and wish to be off that!
Best of luck and keep us informed.

12-16-2009, 09:38 PM
I am due to go in hosp fri for my wind pipe to be dilated for the 2nd time was done 4wks ago for the first time,i may be having a stent put in .
I am due to see a rhematoligist in Jan 2010 for the first time hopefully he will review my condition,medication (currently on cellcept),i dont know if he specialises in WG.
Reading your experiences and replies makes me feel not as isolated so thanks