Derek, my dermo once prescribe Mometasone. It is a steriod cream that is a bit strange to use-you have to cover the area it’s used on with saran wrap/tape. But after two days, I really noticed a difference on my legs. Took it down from driving me nuts to something livable.
If your dermo recommends it, go for it.
Thanks for the advice! I’ll speak to my dermatologist and see what they have to say.
I am 78 years old with PSC cirrhosis and Crohn’s Disease. No transplant. Not eligible. I tried to donate blood in 1963! and was rejected because my GGTP was abnormal. Later, I had to have my Gastro (starting to develop symptoms of Crohn’s) write a letter to my employer’s insurance section to assure them I was not an active alcoholic because they denied me insurance. No one knew what this was. Did have pruritis and suffered w/it for years. Visited specialty dermatologists w/o relief. Developed osteoporosis. In January 2015 I jaundiced. Imaging was done and the dots connected after all these years. I drank socially or less before this. A cocktail a few times a year. Nothing since 2015. Not eligible for a transplant. I follow a restricted sodium and high protein diet - a challenge. Currently I am on Humira plus other meds for the Crohn’s, Urso, Xifaxan for liver plus other meds. Have recently developed systemic peripheral polyneuropathy most likely secondary to my autoimmune disorder. My wife’s goal is for me to be the longest living and oldest PSCer that my hepatologist has in practice. She is my cheerleader and it helps. I did have ascites but not now. My lab values are off but not catastrophically. I have no pain but am profoundly fatigued.
Nice to hear from you again @OldCodger! don’t stay away so long! We want to make sure your goal to be the longest living and oldest PSCer that your hepatologist has in practice is met and exceeded. How will we know if you disappear a year at a time LOL
TJ
Welcome back. Glad you are at a good place-I hope you stay there, or even better, get better. One thing I found about fatigue is that naps are wonderful.
Hi everyone, well I can’t believe it’s been 5 years since I asked this question. An update! I unfortunately had to have a Liver transplant this past October. My daughter fortunately was a perfect match and graciously donated. I’ve done well since the transplant. My liver numbers still fluctuate and is being stubborn but all is good. I was transplant at Toronto General Hospital and the team I had was fantastic. My liver deteriorated in lease than 6 months. If I wasn’t transplanted when I did, my doctors said I wouldn’t have lived to see Christmas. Im grateful for the liver transplant team of doctors and nurses and mostly my daughter for saving my life. PSC is an awful disease and I hope one day a cure is found. I pray for those living with this disease.
Congratulations Smittysgirl on your successful living donor transplant. What a wonderful gift your dear daughter gave you. I’m glad you are doing well and things should continue to get better day by day. We are glad to get an update from you and encourage you to continue to be active in the forum to contribute to those of our members who are going through the same thing you did. It’s wonderful to give back to others for us who have been given this precious gift of life. Take care and I wish the very best to you and your family.
Mark
Transplant 2015
Nice, Smittysgirl. I hope you are well on the way to enjoying a new lease on life.
Looks like you are coming up on your six months. That is a great milestone to reach.
I love to see successful outcomes/stories.
Jeff