Is a rash part of Vasculitis?

[Becky]

I thought I would update from my last post on Dec 4th. I had just gotten the results of the TPMP test.
I started Imuran on December 15th. I stopped Imuran on December 18th.
I had gotten a rash in August that progressively got worst until October at which time I was sent to a dermatologist. She did a biopsy and said it was either an allergic reaction or eczema. She also said it has nothing to do with Vasculitis. I was give a prescription of Hydroxyzine for it and also Betaderm cream 1%. This helped but the rash did not totally go away.
So this rash was still slightly present when I started Imuran. Within 2 days on Imuran I had a rash from head to toe. I called Doctors office and spoke with her assistant and was told to stop the Imuran immediately and take Benadryl about every 6 - 8 hours until the rash goes away. I did this at first and slept quite a bit. The rash subsided some and I stopped taking the Benadryl except at night. I did not want to sleep the Holiday Season away. But I still have somewhat of a rash and am so itchy sometimes that it almost drives me crazy. I also have such dry scalp that when I scratch it seems like a snow storm (heaven knows we have enough snow here I don't need to contribute to it-haha).
Is a rash part of Vasculitis? I have asked my Doctor this several times and she keeps saying NO! But I have seen mentioned on this forum things about rashes. If a rash is linked to Vasculitis how does it present itself? What does it look like? How is it treated? I need some relief from this.
Also, the Doctor has now suggest she wants me to take Cellcept but not until the rash is gone away and the Imuran is out of my system. I only took Imuran for 2 days @ 50 mg per day. She said it will take about 2 months for it to leave my system. Do you think it would take that long?

[Dirty Don]

Obviously you're flaring, and the Immuran isn't doing the job...ask about using Rituxan at this point. There may be traces of Immuran in your blood for months, but as for it being affective after a week or so, I seriously doubt it. I would ask for another opinion - maybe someone on here has had that experience with Immuran. Best to you.

[mrtmeo]

It sure sounds like an allergic reaction if it is itchy.
The rash my mom gets, from vasculitis, is not itchy nor raised looks like this

[annekat]

I just get a few red dots now and then on my forearms, which I know are WG related, because they happen when I'm tapering pred, flaring, or under a lot of stress. The rash of Blake's mom pictured above looks like what I've seen on various sites about vasculitis. The small red dots of hers look just like my red dots, only I usually just have maybe 3 or 4 of them at the most. They don't itch. There could be other kinds of vasculitis rashes, which might look different, but the itching doesn't sound typical. I'd agree that it sounds more like an allergic reaction. Although Don could be right that is is connected to a flare. It sounds like the Imuran was a problem but that your doc doesn't have full understanding of it, and that if you are flaring, you should be on an immunosuppressant. Waiting 2 months sounds excessive. I've been on two immunosuppressants at once while transitioning between them and don't see the big deal. But then I know nothing about Imuran. If it is possible to get a second opinion, or to find a more experienced doc, that might be a good idea.

[mrtmeo]

I just get a few red dots now and then on my forearms, which I know are WG related, because they happen when I'm tapering pred, flaring, or under a lot of stress. The rash of Blake's mom pictured above looks like what I've seen on various sites about vasculitis. The small red dots of hers look just like my red dots, only I usually just have maybe 3 or 4 of them at the most. They don't itch. There could be other kinds of vasculitis rashes, which might look different, but the itching doesn't sound typical. I'd agree that it sounds more like an allergic reaction. Although Don could be right that is is connected to a flare. It sounds like the Imuran was a problem but that your doc doesn't have full understanding of it, and that if you are flaring, you should be on an immunosuppressant. Waiting 2 months sounds excessive. I've been on two immunosuppressants at once while transitioning between them and don't see the big deal. But then I know nothing about Imuran. If it is possible to get a second opinion, or to find a more experienced doc, that might be a good idea.

That picture of vasculitis rash is from the net and not my mom.
My mom only gets a couple small spots once in a great while.

[annekat]

That picture of vasculitis rash is from the net and not my mom.
My mom only gets a couple small spots once in a great while.

Oh! Well, I'm glad your mom doesn't get an extreme rash like that. It sounds like what she gets is more like mine, a couple spots once in awhile.

[mrtmeo]

Oh! Well, I'm glad your mom doesn't get an extreme rash like that. It sounds like what she gets is more like mine, a couple spots once in awhile.

That's what is so scary about the net when looking up diseases.
The pictures they show are so severe.

[annekat]

That's what is so scary about the net when looking up diseases.
The pictures they show are so severe.

I guess it's good to know how it can get in some cases. That way, we realize we are not as bad off, and have compassion for those who do get it that bad. But I agree, not only the pictures, but some of statements made about survival statistics and such, are a little over the top, and would be pretty scary to a new person. That's what's good about the forum; it puts things in perspective a little better.

[mrtmeo]

I guess it's good to know how it can get in some cases. That way, we realize we are not as bad off, and have compassion for those who do get it that bad. But I agree, not only the pictures, but some of statements made about survival statistics and such, are a little over the top, and would be pretty scary to a new person. That's what's good about the forum; it puts things in perspective a little better.

Absolutely!
There is no info better than others experiences.
I have seen so much greater accuracy with other's experiences and far less accuracy from clinical trials.

[Becky]

Don - I agree that I need a second opinion or a Doctor who is more knowledgeable about Vasculitis. I actually insisted on this the last time I spoke with my Doctor and she has referred to a rheumatologist who specializes in Vasculitis. I am waiting for an appointment. As far as Rituxan - from what I understand it is difficult to be prescribed that and very expensive in Canada. And, she said she does not want to give me the "BIG Medications" incase I get really sick and need them and then they may not work. Something to look forward to I guess!
mttmeo - my rash does not look like that. It is a really fine slightly raised rash that is very very itchy!
Anne - as I said I am waiting for an appointment with a rheumatologist who has experience with Vasculitis. I have also asked my Doctor to consult with one of the Doctors on the Vasculitis Organization's website but was refused.

it is very frustrating and stressful going through this without the support of my Doctors. I am thankful I found this forum!