University of Utah Vasculitis Center

[vdub]

The U of Utah Vasculitis Center is certainly top-notch, but at this point that’s about all I know. I probably won’t know anything specific about the disease for 2 or 3 weeks.

I saw two rheumatologists on Tuesday (this is Feb 2011) and had 8 tubes of blood drawn. They are leaving no stone unturned. They mentioned that I was #23 worldwide (since 1966) with this condition (Granulomatous Hypophysitis). I had to correct them and let them know that I was #24 and Jennifer was #23. What they don’t know is what caused the GH. Up to this point, the diagnosis has been that the GH was caused by Wegener’s. Now, I am less certain, but the jury is still out.

The underlying cause for the GH is the current concern. Up to this point, it was thought the cause was Wegener’s and that has been my diagnosis for about 10 months. WG is still the top contender, but there are a half-dozen other conditions that could cause it as well – all are pretty rare.

The testing that I’m going through now is as much to eliminate what I don’t have as opposed to finding out what I do have.

Yesterday, Tues, I saw an ENT. He said there was no indication of WG in my sinuses. This is neither good nor bad news, but simply more information. It doesn’t really change anything at the moment. Rather it just tends to point things on another slightly different vector and, of course, more blood tests.

Today is a down-day with no doc appts. Tomorrow, Thur, I have 5 appts starting at 0830 and ending at 1800. The last appt (1800) is an MRI and an MRA of the brain. MRI’s usually take about an hour, so it could be a long, long day. Like I said, they are leaving no stone unturned.

I am very pleased with the U of Utah Vasculitis Center and really happy that I sought out a group of specialists. Highly recommended!

[Psyborg]

Great info VDub, I hope they are able to nail this down for you.

[vdub]

Thanks, Bob.... Yes, it would be nice to know what the root cause is. You guys will be the first to know. I would like to get off the mtx...

[Sangye]

I'm so glad you're in good hands there, vdub. Best of luck with the rest of the tests.

[drz]

vdub

You are certainly a rarity according to this info: One in 10 million.

Hypophysitis is of two types: lymphocytic and granulomatous. Granulomatous hypophysitis is rare, with an estimated incidence of one case per 10 million per year (1). It may be associated with systemic conditions, such as Takayasu's disease (1), ruptured intrasellar Rathke's cleft cyst (2, 3), and Crohn's disease (4) and with thyroiditis and lymphocytic adrenalitis (5). A few cases of Wegener's granulomatosis with granulomatous hypophysitis have also been reported (6–9). We describe a case of Wegener's granulomatosis with granulomatous hypophysitis and suggest possible indications revealed by MR imaging to allow medical management and prevent surgery.

http://www.ajnr.org/cgi/content/full/21/8/1466

[vdub]

I can't say enough good things about the U of Utah Vasculitis Center and the people here. I have really been through a lot this week -- 5 doctors in three different departments. It seems like all the different departments are fully geared up to support the VC.

We brought our RV and stayed in Layton at Hill AFB, but later we found out that both the VA (next to UofU) and the UofU have RV spaces. It looked like the UofU had about 10 or 12 spaces. Supposedly, it is free, but I didn’t confirm that. If you are a disabled vet, then I suspect you could stay at the VA, but I didn’t pursue that avenue either. We had to drive about 30 miles to get to appts, but that was no problem. We traveled at several times throughout the day and I never saw any traffic problems on I-15. Also, the hospital can get you reasonable hotel rooms near the campus. I was told about $80/night.

Regardless of where you stay, you should consider a rental car if flying to SLC, since the ENT is in a new part of the campus that is about 14 miles away and I suspect most Weggies will end up at ENT. Everything else is within walking distance once you park near the hospital. [click map]

If I was coming down here for a work-up and diagnosis, I would reserve about a week of time. They do everything they can to get you through all the necessary appointments. On one day, I had 4 appointments – starting at 0800 and going through 1830. However, all the different departments worked with us to move things up and we were home by 1500

A few tests still need to come in and a final diagnosis won’t be made for a couple weeks, but the preponderance of evidence suggests a diagnosis of WG localized to the brain and upper sinus.

My mtx was doubled and so was the frequency of my blood tests. Everything else pretty much remained the same except the comfort of knowing I have been looked at by the best-of-the-best.

PM me if you have any questions.

[drz]

Hope it turns out well for you!

Do they think the MTX is enough to do the job of controlling the Wegener's disease?

[vdub]

It seems to have done the job for the past 10 months and the amount is being almost doubled. They'll be monitoring my labs pretty closely, plus pee sticks every week to test for blood in the urine, which would indicate failing kidneys. I have a lot of confidence in them...

[Sangye]

Wow, so glad you went vdub. Now you can get better. More better.

[vdub]

You can not imagine how glad I am that I went, too.....

If anyone in western No America needs a wegs specialist, then these are the guys. Plus Salt Lake is a beutiful city to spend some time in. The mountains (not little hills) are right down to the edge of the univeristy....