Vasculitis

[ROXY51lou]

I am a 24 year old female diagnosed with Sjogren's Syndrome around 3 years ago. Starting in January of 2005 I was diagnosed with Vasculitis. I have not been diagnosed with the specific type of Vasculitis, but my symptoms mostly include: red/purple spots on legs, feet. Welt-like spots on upper thighs. My legs are extremely stiff and painful to the touch. My feet swell soo much I can barely fit in any shoes.

I was put on a course of Prednisone, then Methotrexate. The Methotrexate caused my white blood cell count to go too low and had to be taken off of the Methotrexate. Since being off of the Methotrexate (MTX) I am now having another vasculitis "attack". My rheumatologist put me on a 3 day course of 1g Solumedrol. That seemed to make me feel worse.

If anyone can offer any advice, share your stories, etc. that would be wonderful. I am having a hard time finding any support groups, medical information, anything!

Thanks!

[renata77]

Hi,

I'm sorry to hear of your difficulties. As you found, it is difficult to get much info on vasculitis online. Since vasculitis is often associated or grouped with autoimmune diseases, that is a good place to start. Especially search for lupus, because that is one of the most frequent autoimmune diseases with which vasculitis is often associated. This does not mean you have lupus, of course. Vasculitis can be a primary disease or it can be asssociated with other autoimmune diseases. You can start at the Autoimmune Disease Online site, which gives links to many other similar sites.

I hope you can find some info which will benefit you, and I hope you feel better soon. Like other AI diseases, it can wax and wane, so you may find that you will have a remission of symptoms and be feeling good most of the time. I hope so.

[mylighthouse]

Hello,

My husband was diagnosed with Henoch Schonlein Purpura (I posted it on this board--if you want to read it) back in February. After a few weeks of the initial breakout of the purpuric rash, some of the small spots enlarged to baseball size areas on his shins, calves and ankles. As they enlarged, they turned a deep red/purple and formed blisters, which eventually broke open and oozed. The painfulness in the legs lasted for a few weeks. He saw the dermatologist who confirmed through biopsy that it was vasculitis. She said it was the worst case she had ever seen.

I will tell you that we have exasperated the internet, hours spent looking for relief/help. The most help we found was through this board, personal experiences.

Let me tell you what brought some relief to my husband:
1) He alternated tylenol and ibuprofin for the pain relief--they wouldn't give him anything else, which I still don't understand--he was hurting so bad.

2) We used a aluminum sulfate solution recommended by the dermatologist called Domeboro (over the counter). It is in powder form, you add it to water. I would put the water in a bowl and add a couple off packets to it, mix it, soak a washcloths in it, and then lay the cloths on his elevated legs--directly on top of the horrible blisters. I did this 2 times in the evening. He thinks it helped relieve the stinging some.

3) Elevate your feet as much as possible, even while asleep. My husband would put pillows under his feet at night, it helps with the pain some.

4) Wear flip flops during the day if you can. My husband couldn't even fit his feet into socks or shoes. The swelling in the feet lasted 3 weeks and he walked around like a little old man (he's 32). We definitely noticed the swelling went down a little with combination of elevation and flip flops.

I can't imagine the pain you're going through--I tried to imagine it for my husband. I hope something I suggested will help you too. Just try to get rest, limit your activity/walking too.

Hang in there, take care and remember to take one day at a time.

[ROXY51lou]

Is your husband in remission?

My Dr adjusted my medication - Prednison and Methotrexate - which seemed to help w/ my outbreaks of the vasculitis. However, even tho there are no spots I still get horrible muscle/tissue pain.

I continue to elevate my feet - and try to rest as much as possible..

I am extremely fatigued tho - Does your husband feel the same way? I feel like I could sleep for 12 hours a day and still be sooooooo tired..

[mylighthouse]

Hi again,

He still has a purpuric rash that breaks out every week--hundreds of little welts all over his body. He'll always have a few on his legs (where the vasculitis was) that get enlarged to about the size of a nickel. Just when we think they might continue to grow even larger (like the ones he had before that turned into vasculitis), they subside. Therefore, we think the run with vasculitis had ended.

When my husband went through those several awful weeks with severe vasculitis, he did have severe exhaustion and fatigue, just like you. He couldn't get enough sleep either, but he still continue to go to work everyday, because he had no alternative. He would tell me that he just didn't feel good in general. As the vasculitis has subsided, the fatigue has gradually gone away.

I'm hoping that your vasculitis will go away soon. It's good that you are trying to rest. Maybe the Prednison and Methotrexate will help you. My husband had a cortizone shot in his rear which was supposed to help with the vasculitis, but he didn't notice a difference.

Take care.