I just discovered this site today. I have PBC. I have many of the symptoms listed by others including itchy ears which I had no idea were part of the disease. I also have a skin disease which comes and goes. It is lichen planus and is very itchy so combined with the PBC itch it is very bad. I was thinking of going on a short time prednisone "cure" for the lichen planus Has anyone ever used prednisone while taking urso?
Itch Relief: I just discovered this site... - PBC Foundation
Itch Relief
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I have been on & off of prednisone for the last 27 years I have lupus, sjogrens, PBC and AIH. I call it a wonder drug when you are in pain & need something for inflammation it relieves the pain however the damage it does to your body is horrible. I currently have a compression fracture to my L7 disc due to my osteoporosis and my use of prednisone weaking my bones. I'm currently taking 20 mg of prednisone I was diagnosed 1/28/18 with PBC. I feel prednisone has done as much damage to my body as much as it had helped. Trying my hardest to get off the prednisone. I have been on urso since 1/29/18.
If you are thinking prednisone will help with the itch, it did nothing for my itch my doctor started me on cholestyramine. I'm finding good results with it. You should ask your Dr. About cholestyramine. I was on 60mg of prednisone in February & March 40mg just lowered it to 20mg.
I tried cholestyramine twice - it did not help. I am reluctant to use . Prednisone again but. It is the drug that has helped me in the past.
It took a about 6 weeks, I take 2 packets a day. I still itch, just not out of my mind crazy itch. Prednisone works wonders for me also. I just hate what it does to my body. This compressed fracture is so painful. My skin is paper thin. If it didn't have such bad side effects I would triple dose it. When I'm having a lupus flare up it is the only thing that can get my pain in control.
Thank you so much for posting about lichen planus! I have a rash on my leg that is insanely itchy, and the more i scratch the itchier it becomes. My doctor wants to take a biopsy of it as she had no idea what it was or why it keeps coming back. She prescribed a steroid which initially helps but it always seems to come back. I will ask her about LP and see what she says. Thanks again!!!!
Your welcome. How much prednisone did you take? In the past, it was the only thing that worked for me,. I find that if I keep busy e.g. I read3 or 4 books every week, I do the NYT crossword every day and I research "stuff" on my computer. All of these activities take my mind off the itch. Good luck.
I have taken prednisone from time to time in small doses or just a shot. I have had no side effects that I am aware of and it jump starts the process to stop the itching. The other thing that I find helpful is to take a benedryl at night when I have bad episodes. I find if I can even get a night of relief it helps me stop scratching. At some point it turns to dermatitis if you scratch too much and you just have to break the cycle
Hello and welcome. Sounds like you have lots going on. My prayers are with you to find a way to ease the symptoms. have you ever done research on itchy ears and parasites? Interesting correlation. I have never heard of PBC and itchy ears, but hey, what do I know..anything is possible. But I do know that a majority of itching(ears, nose, skin), can be related to parasites. There is a naturpathic doctor, Dr. Clark, who is big on ridding the body of parasites. There is a liquid named Black Walnut WoodWorm??? that is very effective. Best to you on your journey
I'm "bumping" this thread back up as I understand You are looking for more feedback on this. I haven't used Prednisone but maybe others will add their feedback.