Wegeners disease in Remission.

[elephant]

That is great Gmyi, do you still see your doctor for check ups? You had no damage from the wegeners disease?

[gmyi]

I have regular monthly blood check and visit my local doc and every tree month I have check with my nephrologist and rheumy at hospital

[elaine krepis]

Hi Elephant, my name is Elaine and my husband has just been diagnosed with Wegeners.People are mentioning dying ,this is a little disturbing can you tell me what are the situations that you know of death with Wegeners. So far my husband has got it in his nasal passage, he has had his lunges checked and they are ok. He has no side effects with the medication so far. Can you just give us a little info of what we could be in for.

[elephant]

Hi Elaine, Welcome! First thing that is important is that he see's a Rhuematologist who specializes in Wegeners Disease. Having a specialist early on will save his life because they are up to date on the research ( wegeners disease) and see 100's of wegeners patients.
Usually the one's who die probably didn't get the right treatment , misdiagnosed or was too late because of all the damage that wegeners caused.
Does your husband have kidney involvement? What medicines is he on to control the Wegeners disease?
You will get alot of support here Elaine, glad to have you here.

[Sangye]

Hi Elaine, welcome to the group! I don't have anything more to add to what Elephant said-- I agree with her 100%. Just wanted to cast that vote.

[JanW]

Hi, Elaine -- the most important thinng in WG is viligance, constant maintenance of your health and losing the denial! This disease in unpredictable so you want to make sure that your rheumy is monitoring your bloods and urine (also a check for kidney involvement) frequently. Many people will WG live long and relatively healthy lives, but remember that it can attack almost anywhere at any time. One thing that is helpful in the early days is to get a baseline of all your 'systems' so, an EKG, hearing test, eye exam (by an MD, preferably one that sees autoimmune cases), bone density scan, lung CT, examination of throat and sinuses when they are involved are all in order. That way, if you develop hearing loss or congestion the doc can see where you were when newly diagnosed, and where you are now.

[Doug]

Elaine ~ I seem to have fallen into the role of "guy who puts up the Vasculitis Foundation link and recommends the correspondent study up on the disease, etc." So:


Front Page | Vasculitis Foundation

This isn't the only source of information that's reliable. Johns Hopkins, Cleveland Clinic, and Mayo Clinic all have great experience with WG treatment, as you will read in posts throughout this forum. They also post information on WG. Personally, perhaps because the organization was started by a nurse with WG, I find this site the best one for orienting yourself to the nature and issues surround vasculitis, a group of diseases of which WG is one. There are places to locate doctors who specialize3 in the rtreatment of WG. There are places where the pose questions to ask your (your husband's) doctor Take a look.

It may reduce your stress and fear to realize people largely survive, even thrive with WG. Roughly 8% do die, but I'd almost guess they have a lot more affected by the disease than your husband. I wouldn't bet on it, though, because the disease affects each patient differently. Some have severe WG (because of renal involvement) yet respond well to treatment. Others with less invasive involvement don't respond to treatment, and suffer a long time.

Because the way each patient responds to treatment, and because WG manifests itself so many different ways, you will be nagged (count me with the crowd of naggers) to make sure you have a WG specialist, preferably a rheumatologist, treating you husband. Don't feel uncomfortable asking his doctor or doctors " How many patients do you have or have you had with this disease, and how are they doing?" or "Are you comfortable consulting with a WG specialist during the treatment of my husband?" Be nice about it, but drop any doctors who give you a sense they can do the job on their own. The WG specialists who brought me back to remission consulted with other specialists.

[gmyi]

In replay to your question about damage from W.G. i have some like my doc said "some scratches"
and the damages are kidney Mal function, DVT, and pain in my legs when I walk in an inclined way
or in stairs, I have pain and scraping in my left side of the face and head in result of Herpes Zoster

[elephant]

Gmyi, keep an eye on the legs, I had a DVT long time ago in my leg and every so often it gets tight ....I had a couple scans on my legs to rule out clots.

[elaine krepis]

Hi Elephant, hope all is well. The medication that my husband is taking is Prednisone 75mg and Cyclo 2 tablets, we haven't had his kidneys checked yet.
This is so scared, we just don't know what to expect