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!
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.
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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.
The Following User Says Thank You to mylighthouse For This Useful Post: lovemygirl11 (03-07-2012)
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.
For the past 2 years I have been getting those same red spots on my legs. My legs will swell, and they are hot to the touch, and sensitive to the touch. I went to the ER's a family clinic. Then finally I went to a dermatologist. There he did a skin biopsy. It came back as leukocytoclastic vasculitis with mild dermatitis. When I went back he ordered some blood test, urinalysis, stool specimen, and a chest x-ray. I have read about the leukocytoclastic vasculitis and only treatment that they are is the prednisone and the other medication but it is not a currable treatment. Other then those medication there is not treatment that I have read. 50% of all cases with this kind of vasculitis is unknown for the other 50% it is because of something else, like lupus, Sjorgren's disease etc. You can do a search on the internet to get more information. I hope this helps. I think the best thing is go to a dermatologist or a rheumotologist and have them do a skin biopsy. Its expensive but nonpainful.
Like I said before - I haven't had a major episode of spots in a couple weeks or so - (knock on wood) - but I still get the muscle pain and fatigue. I am now experiencing joint pain in my hips, knees and elbows.
It seems like its always something going on - I wonder what its like to be "normal" ..
I have had vasculitis since February. I had several blood test with all negative results. Currently I am taking prednisone to suppress the symtoms. During the first couple of months I would have flare ups that would make it difficult to stand. I also had pain in my shoulder. It seemed to favor my left side. I am hopeful that it will go away on it's own; however if it does not I am not sure what to do. The prednisone is very debilitating. It is very frustrating when you have a problem like this and not know why. Good luck with this and keep a positive attitude. Like my Grandmother says, "this too shall pass"
I also have had vasculitis since Feb 06 and am getting increasingly frustrated. I still have the rash mainly on my legs, and swelling and joint pain in my left leg, mainly knee and ankle. I am find the worst of it is stomach pain and cramping, feeling sick all of the time, and also feeling tired. Some days I feel like I am almost back to normal and then for the next week I feel like I need to just sleep all day. I am still being passed around from Doctor to doctor with no one really knowing what to do, but in the mean time I feel like my life is on hold as I can't function properly.
I have started seeing a natural therapist to see if he can offer any relief, I'll update on that later. Has anyone else with this condition tried anything other than conventional medicine.
Thanks - this notice board really helps - even if it is to just release my frustration.
The following user gives a hug of support to Mel063: Amayat (05-11-2011)
I too suffer with vasculitis. I have multiple sclerosis. Started a new immunosuppresant when I developed Raynaud's syndrom, that was in Jan. 2006. Now rhuemy says I have Sjogren's syndrom. It is a mess. Need to keep my body temp low because of ms, but need to keep warm because of Raynaud's. Neuro says things just got a little tougher. One toe turned black with an ulcer, it has improved. Thanks for listening.
I also have had vasculitis since Feb 06 and am getting increasingly frustrated. I still have the rash mainly on my legs, and swelling and joint pain in my left leg, mainly knee and ankle. I am find the worst of it is stomach pain and cramping, feeling sick all of the time, and also feeling tired. .
I think you may have an auto immune problem called "Henoch Schonlein purpura" ,the classic symptoms of which are purpura(vasculitis), knee and joint pain , stomach ache and kidney involvement, all or few of these 4 symptoms may be present. my husband has this problem and I have posted on the auto immune forum
I'm truely sorry you all are going through these situations.
I toobroke out in a rash, about 3 months ago and had a biospy performed. The biopsy came back as early leuko____.. (I apologize don't have the spelling infront of me) vasculitis. My joints were inflamed and i could barely walk. I had most of the rash on my upper thighs but it comes and goes all over my body. I had swollen feet and swollen hands.
At first they thought it was caused by a tick bite and that the vasculits was secondary to the infection. After a month of antibiodics (which was not necessary) an infectious disease doctor told me it was not infectious rather rhuematological. I have now been diagnosed with Undiffentiated Connnective Tissue Disease and have been on Prednisone for a little over a month. I will be starting Plaquenil tomorrow and decreasing the Prednisone. My rhuemy advised me that its not primary vasculits b/c my ANCA tests came back ok. I will be going for a second opinion next week. My hives are still very much active. They calmed down with the Prednisone but I've been decreasing my dosage and i'm getting back to where I started with the swelling, hives and joint pains.
I don't see much on Vasculits on the web, but wonder if infact I have an auto immune disease that is primary, why wouldn't the secondary vasculitis go away??
I found that Aveno anit itch cream relieves the itchyness associated with the rash (early on it was not itchy, later on it was intolerable and had a burning sensation). The only thing is that it goes away pretty quick, so you have to constantly re-apply. I also elevated my feet and felt the swelling went down a lot. I also wore shorts/dress pajamas at home and felt that it felt better than having pants on.
I hope everyone is feeling better these days!
The Following User Says Thank You to undifferent For This Useful Post: lovemygirl11 (03-07-2012)
I have had this Vasculitis for a year now. If you are taking Prednisone in 2 or more doses a day find out the best way to taper. I was able to taper off my night dose completely. Currently I am on 2.5 mg down from the 40 mg I was on for a while. I went to Johns Hopkins Vasculitis Center in November and am glad that I did. They were very thorough and good listeners. For the first time I felt like I had doctors that had experience with Vasculits. If anyone needs a second opinion I would highly reccommend visiting them.
Hey folks, I'm glad I found this board. I thought I was the only one with these problems. I was diagnosed with vasculitis in March. I had the rash which started on the tops of my feet and spread upward to my chest then my face. It wasn't until I visited a dermatologist and had a biopsy that I found out what was going on. I got set up with a rhuematologist and after 6 weeks of 80 mg of prednisone per day, the swelling has gone away. I have finally been tapered back to 40 mg. How do you all deal with all of the side effects? My face is so swollen that I can barely see my ears, I'm bloated, I haven't slept through the night in months, I get woken up by leg cramps almost every morning, etc... Is there any cure for this? After a dozen blood tests, the rhuematologist couldn't find anything 'wrong'. Will the prednisone become a permanent part of my life? Sorry to ramble, but I had to vent.
I found out in December that I have vasculitis. It started in September with chest pain and fever. The doctors first said it was bronchitis and then a virus. By the end of October was in the hospital because I was severely swollen and couldn't walk. I had a rash all over my feet and calves that had knots in it. After a biopsy they told me it was vasculitis. I started 10 mg Prednisone in November and it took care of the swelling but I still had alot of pain so my dr. added plaquenil. This helped but I couldn't keep any food down. Turned out the vascultis had caused gastroparesis and I've now lost 35lbs. So i went off the plaquenil and had another bad flare up. After another hospital stay in April they increased my prednisone to 60mg. I have been trying to come off it since. My doctor added methotrexate and i'm now on 15mg of that. The idea was to get me off of the prednisone but I have only been able to get down to 20 before the fever, pain, and rash come back. I went to the Cleveland Clinic in May and may need to go back. The doctor at the clinic said that if the methotrexate works I could take it for a year. At that point I could start to taper off of it and hopefully be in remission. All this to say that you probably won't have to be on the prednisone forever. Actually your dr will probably try to get you off of it as soon as possible. I haven't found any cure for the side-effects of prednisone but benadryl helps a little for the insomnia and restless legs. Hope this has helped.