Hi Everyone, I’ve had my itching under control for some time but it seems to be spiralling out control again. I use all the preferred soaps and creams which helped but the last couple of weeks its been pretty frustrating. Does anyone with PSC take prescribed medication from your Dr that has helped or relieved the itching?
Back in February, my dermo prescribed Mometasone, a steroid-based cream that did wonders for my itching. I used it for about two weeks and it cut down the itching drastically.
Hope it helps.
Jeff
Before I got ursodiol I use to have a lot of itchness especially the very annoying one under my handpalm and sole (I really REALLY don't miss that) and it was so bad I would wake up in the middle of the night and first find relief when I took 2 or 3 hot showers :/
Back then I got something called Questran and it worked quite well for the itchness. It didn't seem to take it all but it took the worse of it. I always use to take it with a glass of lemonade because boy did it taste like #¤&".
Anyways hope you find something there works for you.
My daughter was prescribed Colostogel for the itching and only takes it when itching gets bad. It seems to work for her, none of the creams worked.
I tried every cream and soap but i had no relief. I didn’t want to take yet another set of meds so i changed my diet instead. Cutting out sugar and all artificial sweetners really seemed to work. Reading about the paleo auto immune diet really eliminated my PSC symptoms including fatigue. I wish you all the best.
Questran is one of the brand names for cholestyramine which lowers the blood's cholesterol level, as does Cholestagel, which work as bile acid sequestrants and help reduce itching.
Blanch - I looked up Cholestagel and I see it comes in tablets - 6 a day - is that how you are taking it? I'm very interested as it sounds much more palatable than the cholestyramine!
Jeff - Can you use the mometasone (brand name Elocom in Canada) on large areas? Usually cortisone creams have to be used sparingly as they thin the skin. Sometimes the itching is EVERYWHERE and I'm pretty sure the cream can't be used close to eyes, in nostrils or a few other itchy locations that leap to mind.. How many times a day can it be used?
Chantal,
Hello. I have been taking 300 MG of Rifampin two times a day for itching since my diagnosis in 2011. I believe you will find this a life-saver in the itching department if you give it a try. It's rather expensive without insurance but well worth it for quality of life/sanity. Hope this helps.
Mark
Compounded prescription cream with ketamine, gabapentin and amitryptilyne. Also zoloft (no other SSRI / antidepressants specifically zoloft). I have been treated at Mayo Clinic and am a physician assistant myself. Questran / Colestapol is not feasible because it needs to be taken an hour before or two hours after any other medications and isn't supposed to be taken with food (due to the binding properties) and has to be taken minimum 4 times a day to be effective. Rifamin causes further liver damage and works great, but should be saved for end stage disease or for short periods of time / use. Funny enough, ursodiol can actually worsen itching. I was diagnosed at 16 with something being wrong when I was diagnosed with Ulcerative colitis and they realized it was spread to even the smaller ducts during my first ERCP at 20. The topical ketamine/gabapentin/amitryptiline has been helpful. Really though, having an ERCP by a skilled gastroenterologist is the best relief. They can open the ducts and allow the bile to flow through.
My daughter takes 3 colostogel per day when the itching is bad but she has told me she notices the itch returning after just a few days of not taking it. Her legs are really itchy today and she is back on it.
Alix said:
Questran is one of the brand names for cholestyramine which lowers the blood's cholesterol level, as does Cholestagel, which work as bile acid sequestrants and help reduce itching.
Blanch - I looked up Cholestagel and I see it comes in tablets - 6 a day - is that how you are taking it? I'm very interested as it sounds much more palatable than the cholestyramine!
Jeff - Can you use the mometasone (brand name Elocom in Canada) on large areas? Usually cortisone creams have to be used sparingly as they thin the skin. Sometimes the itching is EVERYWHERE and I'm pretty sure the cream can't be used close to eyes, in nostrils or a few other itchy locations that leap to mind.. How many times a day can it be used?
I have tried zoloft and questran and nether helped. I’ve had a few ercps done and my iching stopped immediately afterwards although it returned a few weeks later. I started vancomycin and low dose prednisone 8 months ago and the itching disappeared and has not returned. I stopped the predinsone after 3 months but im still on vanco.
Similar situation with me. Absolutely debilitating itching and Questran/Cholestyramine didn't help. Oral Vancomycin got it to go away for good.
I had tried just about everything with no relief until Rifampin. Within 24 - 36 hours after taking the first dose (300mg 1x daily) itching was 99 percent gone. A miracle drug as far as I'm concerned. Been taking it for over a year now and have not had problems with itching since. Don't give up until you find what works for you. Good Luck!
GrannyKat,
Thanks for your posting. I know some have concerns about Rifampin and I respect their concerns, but I have been taking it non stop since 2011 and it has made a world of difference in my quality of life. Every once in a while I would try and go off of it or just take 300 MG a day instead of 600 MG and then the itching would come back with a vengeance. I'm not convinced of any long term harm to my liver in taking it at this point. I too am on the transplant list and just found out this past week that I'm approved in the second region in my state at another transplant center so I'm most hopeful for a liver sooner than later, the Lord willing. Good luck to you as well!