View Full Version : Vasculitis

05-30-2008, 12:13 AM
Has anyone else here been diagnosed with Vasculitis related to their lupus?? This is why I have not been here for a while. I got the vasculitis diagnosis. It requires a 40 to 60 mg treatment of steroid along with either cytoxon or methotrexate for about three months. This was dx by a repeat EMG..and a muscle nerve biopsy. This is also how I finally got the lupus diagnosis made official. Supposedly Vasculitis is very rare..and there are many times. Supposedly I have to do this medication regimen or vasculitis would be fatal. I am wondering if anyone has experience with this secondary disease...

love to ya all..

05-30-2008, 11:58 AM
Yes, I have been through all that, too, and was diagnosed with Vasculitis 3 years ago. I have remained on the prednisone and methotrexate since then, too. Sometimes at higher doses, sometimes down to 20 or 25 mg per day (pred). I have terrible circulation in my hands, legs, intestines, etc. I get chest pain walking up stairs and my legs ache just walking a couple of blocks. That sound like what you have been going through?
Thing of it is, we cannot give up on physical activity entirely. We are very, very limited and have to be careful (the doctors tell me I am an extreme risk of heart attack), but we still need to keep the flow going as best as we can. Even if all I do is 5 minutes of lite exercise (toe touches or something like that), I get the body moving. The people here got me going, actually. I have progressed from the wheelchair to walking some since I started the little exercise regime. And I actually got out in the yard (in the shade) and scooted around on my bottom to work in my flower beds over the weekend. That was the first time in 3 years!
I know how scary the diagnosis is, and the limitations are extremely frustrating. If you need to talk, please PM me, and I will be happy to listen. But the people here are great to listen, too.
Good luck to you.


05-31-2008, 11:06 AM
Christine, I'm sorry you've been dealing with such a hard diagnosis. I know Vasculitis is very serious, and you have to follow the protocol so carefully. Sounds like you have some very good experience to draw on, with Suzique's advice. I hope all goes as well as it possible can for you, Christine. Keep us posted on your progress. {{{warm and gentle hugs to you}}}


06-06-2008, 01:41 AM
Which form of vasculitis do you have? How are you doing now that you are on the meds?

I am in the process of getting officially diagnosed. I was recently told that I have Churg-Strauss Syndrome, a type of Vasculitis. My Anti-DsDNA came back positive (which is usually specific for SLE) but my GP doesn't think that is significant. I wonder if it is positive due to the CSS?

The first available appt with the Rheumy isn't for two months so I'm kind of in limbo. I keep hearing that vasculitis is very serious. I've had my symptoms for two years... I hate to wait another two months to see a doc about it!

What is the relationship between lupus and vasculitis??

06-06-2008, 10:41 AM
Hi Goldee:
Lupus is a disease that causes inflammation in our tissues, organs, joints, etc. Vasculitis is an inflammation of the blood vessels. Inflammation is a condition in which tissue is damaged by blood cells entering the tissues. In inflammatory diseases (such as Lupus), these cells are mostly white blood cells. White blood cells circulate and serve as our major defense against infection. Ordinarily, white blood cells destroy bacteria and viruses. However, they can also damage normal tissue if they invade it.
Several things can happen to an inflamed blood vessel:
* If it is a small vessel, it may break and produce tiny areas of bleeding in the tissue. These areas will appear as small red or purple dots on the skin.
* If a larger vessel is inflamed, it may swell and produce a nodule which may be felt if the blood vessel is close to the skin surface.
* The inside of the vessel tube may become narrowed so that blood flow is reduced.
* The inside of the vessel tube may become totally closed, usually by a blood clot which forms at the site of inflammation.
* If blood flow is reduced or stopped, the tissues which receive blood from that vessel begin to die. For example, a person with vasculitis of a medium-sized artery in the hand may develop a cold finger which hurts whenever it is used.
* Occasionally this can progress to gangrene.

Another thing about Lupus is that it produces antibodies. Antigens cause the body to make proteins called antibodies which bind to the antigen for the purpose of getting rid of it. Antigen and antibody bound together are called immune complexes. Two primary ways in which immune complexes destroy antigens are: 1)by attracting white blood cells to digest the antigen 2) by activating other body substances to help destroy the antigens.
Unfortunately, some immune complexes (like those in Lupus) do not serve their purpose of destroying antigens. Instead, they remain too long in the body and circulate in the blood and deposit in tissues. They commonly accumulate in blood vessel walls, where they cause inflammation. It is likely that some white blood cells (cytotoxic cells) which kill infectious agents can also accidentally damage blood vessels and cause vasculitis. In these cases, the antigens causing the immune complexes are often not known. In some cases, the complexes contain DNA and anti-DNA antigens, or Ro (also called SS-A) and anti-Ro antigens. A recently discovered antibody, ANCA (anti-neutrophil cytoplasm antibody), can cause vasculitis in some individuals.
Did I answer your question? Let me know if you need more information!

Peace and Blessings

06-17-2008, 03:46 PM
Thank you for the thorough response Saysusie. I'm so impressed with your knowledge. You are incredible. We're lucky to have you on this board!

06-19-2008, 09:22 AM
You are most welcome and I think that this board is what it is because of all of you! I mean, it is all of you who have been so kind, gracious, understanding and welcoming and that is why this board is like family to so many. So, Thank You!

Peace and Blessings