Sorry if this is a "silly" question

[Brooke]

Is vasculitis the same thing as Wegener's Disease? Are there multiple forms of vasculitis? I know that it is an inflamation of the blood vessels.

[Sangye]

Brooke-- not a silly question! There are several types of vasculitis. Wegs is one type. The different types affect different size blood vessels and have preferences for what parts of the body they affect.

Here's (http://vasculitis.med.jhu.edu/typesof/typesof.html) info from JHU's website about the different forms.

[Brooke]

Thanks Sangye~ I was reading a post on facebook where a 10 year old boy was playing in gym class and all of a sudden got a bad headache and collapsed. After some tests, they found out he had a stroke and had vasculitis. He survived after having to take steroids and chemo drugs.
Scary!

[jola57]

Yes, that is totaly possible. Blood clots, strokes, heart attacks, seisures can happen to us any time because of the granulomas inflaming the blood vessels. Glad that he was ok.

[Brooke]

Do heart attacks and strokes happen frequently with Wegener's? I know it sounds like a lot of us have had blood clots. Stroke and heart attack I was not aware of so much.

[Sangye]

I don't think they're common. Both can happen as a direct result of Wegs. Pred predisposes one to arteriosclerosis which can cause stroke or heart attack.

Heart damage due to Wegs is silent, though. Make sure your doc orders an annual echocardiogram to keep an eye on your heart.

[Brooke]

Thanks Sangye - I did have an echocardiogram at Mayo clinic in Sept 2009. I will make sure I get one yearly.

[elephant]

Sangye I had my echo cardiogram a few months ago. For about 20 years I had on/off chest pain and no one new what was going on....test after test ( EKG, stress test, echocardiogram) and finally I know it is the WG.

[Sangye]

Elephant, what did they find wrong with your heart?

[elephant]

They didn't find anything. The only thing I have is high cholesterol...I will not take any medicine for that. I even had a CT of my arteries to see if I had calcium build up. So my educated guess is that is was the WG.

[Lightwarrior]

I was admitted 2 days a week ago because I was having more than usual trouble with breathing on exertion, my primary provider was worried about it being cardiac. I had a CT to rule out PE, an echo and a lexiscan stress test along with Cardiac markers all were normal. My heart rate was increasiing to the 150's with any exertion, which of course makes it hard to breath. I think I was a bit septic but couldn't get the admitting hospitalist to agree, even though UA in ER indicated infection and fluid boluses and IV rocephin and levaquin resulted in my feeling much better. Lungs and kidneys looked okay on CT. My cardiologist took me off of one of my ace inhibitors and added a beta blocker. I am on my fourth day of dropping from 40mg pred to 30mg and I feel more energy and less fatigue than I have for a month. I hope the trend continues.

I am extremely pissed with my rheumy, I had lots of docs in and out, my cardiologist, pulmonologist, nephrologist, the intensivists (they weren't officially on my case but couldn't resist weighing in with their opinions). Guess who was missing??? My rheumatologist, and my bone marrow took a dive again, he was notified and had his office staff call me, except guess what, they didn't call me at home they left messages on my work phone. The other docs thought he took care of it so after I got out of the hospital I went six days taking Cytoxan when i should have stopped. (Since, I stopped and am now back on at 200mg a day and labs on Thursday looked better). I went to see my rheumy on Thursday and he said he can't explain my fatigue, he doesn't think it is the Wegs , he thinks it is the weight gain from the pred (okay, I have been a large woman for the last 15 years and even at 300 lbs I have never had an energy problem, I have only put on five pounds from the first time I saw this bozo). I made him go back through my weights for each visit, then he decided that maybe it was a side effect of pred and I was I excersing enough. To make matters worse when asked him if he had heard back from Dr. Langford yet (I gave him the contact information over a month ago) he told me that there was nothing contacting Dr. Langford could do for me that he wasn't. He let me know that he was keeping up with the literature and studying Wegs and he was capable of treating. He is my only choice in Yuma, but I am planning to make an appointment at Mayo in Scottsdale to establish a relationship with a new rheumatologist who will be smart enough to use a free consult.

I have been so pissed I haven't been able to write about it until now.

[elephant]

Lightwarrior, so sorry to hear that. My local Rheumatologist called Dr Langford when she knew that she was way over her head. Dr Langford is very good and would of gotten back to him quickly. She personally called me to give me my results. My local Rheumy does not do that. I understand how pissed you are.

[JanW]

Lightwarrior -- so sorry to hear. What arrogant and unacceptable behavior from your rheumy!

[Sangye]

Lightwarrior, this is EXACTLY how my first rheumy was. I didn't know about VF docs so I didn't attempt that. But he did tell me he called "a friend" at Cleveland Clinic once or twice and he was doing the same thing they would do. HA. That man nearly killed me with his ignorance, arrogance, negligence and flat out lies. He ignored that my bone marrow was failing on ctx for SEVEN months. He was also the only rheumy in northern Arizona.

After about a year I started going to Mayo Scottsdale. Unless things have changed dramatically, it's a poor option. My doc (Mehrdad Mazlumzadeh) was very kind in some ways, but not in others. They don't treat Weggies on an ongoing basis there. They only do a full initial workup and give a treatment plan for your local doc to follow. Because my local guy was such an idiot, I begged and begged for Dr Maz to treat me. He relented, but at every single visit if i didn't do what he wanted, he'd say "I won't be able to continue treating you if you do/don't do this." I'm not talking about non-compliance. I'm talking about him asking me to do things that were clearly harming me or that I knew I didn't need. There was no back-and-forth discussion about what was best for me. I lived in constant fear of losing the only doctor who "knew" Wegs and I had to hyper-manage my own case.

At every visit, he threatened to put me back on high-dose pred, even though I didn't need to be on it. Though he knew Wegs much better than my local guy, he did not know it like the Wegs specialists. And he was the doc at Scottsdale who saw all the Weggies. It took me a long time with a real Wegs doc to relax and trust him, even though at my first JHU appointment I couldn't believe the difference.

The dermatologists had no clue how to treat a vasculitic ulcer on my leg. They were wonderfully kind, but no idea what to do. I saw 5 of them, including the head of the department. My local dermy and a wound clinic figured it out. The pulmy there couldn't understand why my O2 saturation was fine in Scottsdale at sea-level, but I couldn't be off O2 at home (7,000 ft). Duh!

Mayo AZ charged huge bills. They did every test imaginable every time and charged way more than "usual and customary" fees for everything. They were wonderful about scheduling and organizing your visits for you. They helped you maneuver with wheelchairs through the building and were wonderfully kind to patients. But it's not a Wegs center and it showed.

So. If there is any way possible for you to travel to a center I think you should. I know it's difficult and probably seems impossible enough to get to Scottsdale. But this is your life.

[Cindy M]

I had no idea that we were more prone to heart attacks and strokes. I gues at my next appointment I will be checking to getting an echo cardiogram. I did have a bone density test done last week.

[sharon]

Lightwarrior, I know how you feel, i saw one rheumy (not my normal one either), the give away to me that he didn't have a clue, was when he asked if anyone else in my family had it, i said, ooh, no, he then looked at my bloods, said i was now in remission in his opinion, he did not look at my x-rays or anything and thenproceeded to tell me i should eat more blueberry's and start training to do a triatholon, the exercise would do me good, and then tried to discharge me from hospital clinic i go to. It was the only time i got really narky with a dr - i told him he did not have the authority to discharge me and he had to give me another script for cellcept until i saw my normal rheumy (i can only get cellcept in the hospital here). that was 18mths ago, i am still not in remission and still have problems with my lungs.
When i saw my normal Dr i told him all about him, i have not seen that other Dr since, but if i had not stood up for myself, i would have been in all sorts of trouble. It makes you made when someones' ego gets a bit ahead of them. Sometimes' we need to be our own advocate & stand up for ourselves. I hope you are able to find a new rheumy quickly & without too much bother.

[Sangye]

The only bad doctor I've seen at JHU was when I was admitted last year and different rheumys (not my own) were trying to decide if it was a Wegs flare or a lung infection. The last day this cartoonishly arrogant rheumy shows up and starts asking me "What are you doing in this hospital?" I was flat out weak--could barely sit up in bed-- and coughing up lots of blood. He said I shouldn't be taking up a bed there and discharged me.

That genius almost killed me. My lungs were hemorrhaging and he sent me home-- 1.5 hours away. When my Wegs doc found out the next morning that I'd been discharged, he called to bring me back asap.

Arrogance and incompetence often go together. I've never seen another arrogant doc at JHU-- he was totally out of place.

[pberggren1]

I'd like like to kick that genius in the groin!

[elephant]

Sangye you were so sick you could not even fight physically or mentally. It's amazing you made it through, so glad you had a great Rheumy!

[Sangye]

I could fight (I have so much fight in me that as long as I'm conscious I can still fight!). There was just no way anything was going to work with hi. The rest of the rheumys were gone for the 4th of July weekend. I knew that even if he agreed it was Wegs he had no idea what to do.

[elephant]

Hate when emergencies happen on a holiday. I always joked about that with the dentist. Every time I had something going on with my teeth...he was out of town. But yours was the worst case , you really needed your doctor.