Posted , 6 users are following.
greetings,
?I have been fighting with idiopathic urticarial vasculitis for 3 years. It started on my left shin and has now spread to my abdoman, breasts, arms and neck. My dr has me on Rayos, it works sometimes but then a flare up will occur. Has anyone else been put on this med?
0 likes, 27 replies
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rocky31676 kathleen79913
Posted
kathleen79913 rocky31676
Posted
2birds kathleen79913
Posted
Hello Kathleen,
I stummbled upon your post while Googling symptoms and more on Vasculitis. I'm intrigued with your post, as your Vasculitis started out the exact same as mine; shins, thighs, forearms, abdoman and also the sides of my breasts. My symptoms go back about 10 years now, when I was around 36 or so.
My first flare-up was on and off for about 18 months, while several professionals were trying to figure out what the heck was wrong with me! It was a very frustrating time and a lot less was known about Vasculitis then! The biopsy then showed Vasculitis, but back then, they were not able to determine the exact type ... I'm guessing idiopathic or sorts.
Since then, I've been doing extrememly good, and have only a few flare-ups which I consider very mild compared to that time. Luckily, I'm otherwise basically healthy as in regards to any organs and such.
You say 3 years for you ... Without being too personal, aside from the Vasculitis, are you otherwise doing good? Do you have many flareups?
Do you reside in the UK?
I'm in Canada, and feel a lot less research goes on over here, compared to the UK or States.
Anyhow, I'd love to hear from you ...
Many thanks!
Kelly
rocky31676 2birds
Posted
Did you have the Henoch-Schonlein purpura kind of rashes that accompany joint pains.
You had for 18 months, and i am on 15th month month now. It is way less now than it was on 6-12th month. Did it not do any permanent damage to your blood vessels ,especially on the lower body, like legs, thighs, buttocks or waist ?
You did not say you had any abdominal pains or joint pains back when you had the vasculitis.
kathleen79913 2birds
Posted
Kelly.
?I live in NY state, I don't feel that much research is going on here at all. It may be the Dr. i go to. I feel like a guinea pig for drugs. I have tried so many of them and some seem to work for a while and then it starts up again. I am see a rhumatologist what type of dr. treated You?
?Other than the flare ups i am in good health no other problems that we have found
?are you on an drugs at this time?
?Looking forward to hearing back from you
Kathleen
paul38503 kathleen79913
Posted
Hi Kathleen,
Vasculitis is very rare and it is common to be the first patient for a doctor you visit.
Some big hospitals have a Vasculitis section in their Immunolgy Department.
The Vasculitis Foundation Web site has been very helpful.
http://www.vasculitisfoundation.org/
especially their videos
Cheers,
Paul
2birds kathleen79913
Posted
Hi Kathleen,
I certainly felt like a guinea pig when I had my first flare up. Doctor's hadn't seen it before and I went through several different doctors and internal specialists, but it was actually a young ambitious dermatologist who took a great interest and a few biospys and nailed it! I later saw a rheumatologist on and off.
I took a bit of prednisone when I first had it, but no great results and cholchincine towards the end of the 18 months to help with the aches and pains. However, for me, and remember I mentioned that I thus far have no other health issues, I've stayed away from drugs. It seems that the benefits don't outweigh the risks. I flushed a few down the toilet when I realised they do more harm to my liver then anything.
I should also mention that I moved out of the province (east coast to the prairies) after my ordeal and noticed a big change in my health. The drier climate is better for me. I believe the dampness compromises the spleen ... maybe there's a connection??
I'm up in Canada's arctic now and it's very dry up here, cold but dry
I have perhaps one or two episodes a year ... and I consider them mild. I actually have one now, and both calves are pretty bad, but it seems to be getting better.
Please feel free to stay in touch
Here's to our health!
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2birds rocky31676
Posted
Hi Rocky,
I don't believe so, as I was tested for that. However, I'll say that my legs ache and have a heaviness to them when I have a flare up, but I wouldn't call it pain. Mind you, I have an extrememly high tolerance for pain
I don't have any permanent damage, however both my forearms and legs have many brown "stains" from all the purpura and petechiae ... one may think age spots, but the doctors tell me, their actual stains, over all the years.
As I mentioned, no real pains, but I'd call it a heaviness and very, very tired. Sadly, I can't think of any other descriptive word then "heaviness".
Recently I had a laser surgery on my eyes due to inflammation behind the pupil. I've asked about that being an age thing or could it be from vascular inflammation over the years ... apparently that was a good question, but I never really got a definate answer. Go figure! I go again in the summer for a follow up, so I hope to find out more.
Are you in a lot of pain? I'm hoping that this will get better with time, and hopefully you go in remission for the most part, like me and your organs are spared
Remember to give in to your body and really rest when you need it. Take good care of yourself!!
Cheers!
rocky31676 2birds
Posted
But if you never had joint pain or abdominla pain, then maybe it was not HSP.
kathleen79913 2birds
Posted
I have had no problems with my eyes, I do feel heaviness in my legs during a flare up. I recently went to the dentist because my teeth were breaking and chipping, lo and behold the vasculitis has caused problems with my gums and has caused my teeth to become fragile....next stop dentures
rocky31676 kathleen79913
Posted
kathleen79913 rocky31676
Posted
I don't notice an swelling at all, I have pretty thin legs so I think I would notice it.