Hello again all. It’s weird to think that this thread is over 2 years old now. I wanted to make a follow up post to my original problem. In this 2 years time I have switched UC medication 2x going from Entyvio, to xeljanz, and now Stelara. The Stelara has worked very well for me and I am glad to have it. Now on to my PSC. Thankfully in the past 2 years my PSC hasn’t changed much. My liver enzymes are still elevated but recent MRIs haven’t shown much change. In about the winter of '18/ early '19 I started going to the gym and working out very regularly and very hard. Surprisingly after going for a couple of weeks the itching just seemed to disappear. During the time from early '19 up until around April/May of this year I was going to the gym around 4 days a week with no issues of my itching and rash. Fast forward to current day, and due to COVID I haven’t been able to get to the gym since it has been closed. Now my itching and rash have started to pop back up. The itching and rash are just as bad and debilitating as I remember them to be. It is going to be a long and hard process to get back into the gym and hopefully it can happen ASAP. Anyway, to sum things up I found that going to the gym and exercising frequently entirely got rid of my itching and rash. Although it seems odd, this worked for me.
Matryoshka,
Thanks for posting again; sorry you have some symptoms popping back up.
With the various symptoms we have and our methods of dealing with them, I think it is a good idea that whatever works for us-meds, lifestyle, diet… keep doing it.
When my itching was at its worst, my dermatologist prescribed Momesota, a steroid-based cream. After two days, it took away most of my itching.
Hopefully you will find your way back to a gym to get back into your routine.
I hope your liver keeps behaving.
Jeff
Thank you Jeff, I apologise for not getting back soon. I read all the posts, and I should reach out more for my sons sake, untill he reaches out himself …I hope one day he does. You all have alot of helpful info and advice. My son has had a rough summer. His liver enzymes shot up,he has small duct PSC, his UC was uncontrollable,and he was hospitalized twice for a few days. He received IV steroids for his UC flair. He has pan-colitis. He has started Remicade and is holding on 10mg of steroids till after his 3Rd dose in January. He just hates steroids, but he lost 40 pounds, we tried everything to control his flair. His liver enzymes have since normalized, and his blood work is good. So we have had a good Christmas after a very rough year, like so many of you all. Have a blessed New Year!!
Matryoshka,
My son has the same issues as you with the skin. He too finds that he has to work out quite regularly to keep it at Bay. It has been hard with the pandemic I’m sure. We live in a very rural area and can go outside alot to hiking and stay active. He hasn’t had to deal with his skin issues for quite some time thankfully. He did see an autonomic neurologist who found that my son has an autonomic problem with his sweat glands which causes a delay in sweating, that the doctor said causes the pain, he didn’t say that there was anything he could do to fix it, we found out, other then steroids, which isn’t a good long term solution I think. I will keep you updated if we find out anything more. Have a safe and happy day
Tmo8, dealing with either UC or PSC by itself is hard enough, but both at the same time has to be tough.I remember about the first time I had a Remicade infusion was the first 2 seconds of feeling that liquid Benedryl and thinking, “Wow. That drug feels great!” and waking up several hours later. I hope your son can get in a good nap when he has those.
JeffDC1,
Thank you for your reply. He has gained 10 pounds already since starting the steroids and Biologic …It seems to be doing the trick. It’s nice to hear a positive report from someone whom has taken Remicade. I hope it can keep his UC under control. Thanks again for sharing your story with me. Have a wonderful new year.