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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paul38503 kathleen79913
Posted
Rayos is Prednisone.
I have urticarial vasculitis and I take prednisone... 75mg per day.
However I will move on to Retuximab soon and if that doesn't work I will try other autoimmune type drugs.
Hopefully you know the solutions for UV are to be found in immuneology and that this is a very are problem.
Cheers,
Paul
kathleen79913 paul38503
Posted
I was on an immunosuppresent that made me violently ill. Right now I am taking an anti malaria drug that has shown some promise with the inflamation. However it takes 3-4 months to get to theraputic levels. The raos is only 5mg per day time released it is suppose to help with weight gain and other side effects.
paul38503 kathleen79913
Posted
Thank you for your reply.
Yes this is the problem for Vasculitis sufferes in that different drugs
work differently.
I assume the anti malarial drug you are now using is Plaquinel.
I had a violent allergic type reaction to Plaquinel and stopped taking it.
5 mg a day of Rayos and using Plaquinel indicate that your vasculitis is cureable by much lower dosages of prednisone compared to 75 mg a day and Plaquenil is also a lower down the ladder of strength for treatment of vasculitis than the much stronger immunolgy drugs.
So you are in a much better situation than chronic sufferers of vasculitis.
Cheers,
Paul.
rocky31676 paul38503
Posted
I am surprised you had a raction to Plaquenil.
What dose are/were you taking of plaquenil ?
Rocky
paul38503 rocky31676
Posted
kathleen79913 paul38503
Posted
I do 5mgs of rayos if there is no flare up If i have flare up it goes to 25mg. the problem is the flare ups are coming more frequently and are more severe. What type of Dr. did you see? I was wondering if a vascular dr. might be better
Kathleen
paul38503 kathleen79913
Posted
Hi Kathleen,
I have visited 1 very good dermatologist who is a professor at Bangkok's Culalongkhon University. He has a masters degree from Harvard.
He has been the best Doctor I have visted so far.
I am currently at home in Australia.
The GPs here know absolutely nothing about Vasculitis
Gps here have referred me to 3 dermatoligist over the past 12 years who have been compltely hopeless and were only interested in taking my money.
I have just recently been referred to the Vasculitis section at the Department of Immunolgy, Concord Hospital, Sydney.
Initial communications have been very encouraging and indicate this is the best local avenue so far and similar to the Vasculitis Foundation in the USA.
http://www.vasculitisfoundation.org/
Cheers,
Paul
rocky31676 paul38503
Posted
rocky31676 kathleen79913
Posted
Flare ups tend to become worse with prednisone; this is what i am gathering from these forums and therefore i am keeping away from rayos.
wendy62425 kathleen79913
Posted
i have suffered from chronic Urticaria.....severe. Finally found a doctor that was able to help me. She slowly put me on Cyclosporine slowly up to 150 mg took weeks.... she added SLOWLY Prednisone ......when I became hive free. I stayed on that dosage then doctor slowly went down on my Prednisone going down 1 mg at a time each week or couple weeks. I have been hive free over a year and I take 3 mg a day for a couple months......oh I slowly went off the cyclosporine and have been off that for several months...before going off Prednisone. The combination of cyclosporine and prednisone worked for me......the KEY though was ever so slowly going off the meds . I went completely off the cyclosporine first then staying on low dose Prednisone. This was such a blessing to me to have quality of life back.
hope this helps
wendy
kathleen79913 wendy62425
Posted
Wendy
?I believe that the cyclosporine was the drug that I had a severe reaction to. Within 30 minutes of ingesting it I was vomitting so violently that I passed out. needless to say I was off it very quickly
wendy62425 kathleen79913
Posted
Oh Kathleen I'm so Sorry to hear that you had a bad reaction. I believe I started at 25 mg. Take a good probiotic. I also take LGlutamine. Eat healthy. You want to build up your immune system. Try not to stress.....I know easier said that done. Do you have Urticaria?
paul38503 wendy62425
Posted
I have read your encouraging reply and will try the gradual reduction in dosage as you have suggested.
What was your daily dosage of Prednisone ?
Cheers,
Paul
kathleen79913 wendy62425
Posted
yes, left leg, abdoman, side of my left breast and elbows
I itch pretty badly. I have torn m skin up while sleeping
rocky31676 kathleen79913
Posted