I have just recently been diagnosed with psc after having an MRCP that showed multiple strictures of the intra and extra hepatic ducts. My liver enzymes were only slightly elevated in my bloodwork. I have been extremely tired , loss of appetite, nausea, and rash with pain under my rib cage which I’ve had for a long time. Anyone else experience such symptoms in the early stages of this disease? Everything I have read about psc suggests that the pain does not happen until the later stages of the disease. Also I can’t find anything about anyone getting a rash. I am still waiting to see a specialist but it just seems like my symptoms don’t make sense. Thanks!
great post Annick!
Welcome to the group. Sorry you had to find us but this is a great group.
Everything you are experiencing is normal. It's always good to know we are NORMAL. My worst symptoms were in the BEGINNING of my problems. I've actually settled down since. I wouldn't say you are END STAGE at all. My worst times were when I was in the inflammatory process and my immune system was causing the damage. I've actually been successful at reversing some of my damage. Hang in there! It can be done. Once you get over the SHOCK of the diagnosis, you will settle down. PSC IS NOT a death sentence.
Thank you for the reply Mona. You are right it IS good to feel like what I am going through is normal. I am still trying to get used to the idea of having this. I’m glad to hear you have been able to reverse some of the damage that is amazing! How did you do this? Thanks again, so glad to be a part of the group.
Hi my name is SKIP, i was diagnosed in 2001 with psc,i suffered pretty much the same symptoms as yourself the only Difference was i didnt have a rash of any kind although i use to suffer alot of itching and would scratch that much i use to cut myself i was wondering if you might be itching? ive suffered quite alot of things since 2004 so i am here should you feel you need to ask anything.x
Hi skip, thanks for your reply. I don’t have any itching, nothing out of the ordinary anyway I don’t think. Still getting the rash and now very very bloated. I am not a large woman and look like I am pregnant most of the time! Did you ever experience this? I’m also now getting some tremors , getting worried and still waiting to see a specialist! This disease is like a roller coaster I never know how my day is going to go. I guess we just have to make the best of it. Thanks again for your reply, it’s good to know I am not the only one who is experiencing this
I don't really know how long it lasts. Forever is possible I suppose. A lot of us followed Glucerin from Italy. What a story. The journey TO transplant, the journey of transplant and now the question of a second transplant:
Bounce around inside there when you have time. Fabulous writer.
I definitely feel pretty attached to my liver [WELL SAID YOURSELF].
Hi Mona and Mija...just a qucky have a look at a blog my wife and i did called Paul Spencer waiting a liver transplant hope you find it helpful.. skip....xxx
I found that blog here:
Thank you Paul. When I get the time, I am going to take a look. I'm dealing with a twisted intestine right now. LOL and OUCH.
Hi again everybody its Skip again.... just to try to reasure anybody who will obviously worry about transplant, i got to the point with psc where if im honest life was not really working at all for m. I couldnt remember anything anybody told me my wife would constantly repeat herself to me, i couldnt drive as i had gone few red lights without realising it..The chances are you will never get to this point but i can honestly say transplant has been the best thing to happen to me. i actually feel fantastic but really im just feeling normal again i dont worry about what might happen anymore as i know i would not be writing this today with my donors kindness. i feel confident i can live a normal life and have stopped worrying about how long that may be, the thing is we can all day anytime of something totally unrelated. My friend Ben who i met in hospital underwent a transplant approx weeks ago he is 28yrs old and is already home and doing well. He has a blog called Bens psc Story which has more detail than mine. what im trying to say i was terrified of transplant but just feeling normal again after so many years was worth it and everyday i live now is one day longer than i would have had with my old liver thats for sure. And will also be forever grateful to my donor and his family, he was a young man 27yrs old who was taken way to early......this puts things into perspective for me. Good luck to you all try to stay positive.xxxx
Very cool. You are truly blessed my friend. Keep the faith, walk the walk they tell you to and HAPPY RE-BIRTHDAY.
When exactly was the transplant [I haven't surfed your blog yet]? And my BIG QUESTION...WHAT ARE THE DRUGS COSTING YOU A MONTH?
Hang in There!! Kisses and Hugs to you Both:
Hi again Mona, firstly thankyou for your kind message and i hope you are feeling as well as can be be expected. As for your question re the drugs I am pay for a yearly certificate that costs approx 120 pounds per year which is unbelivable value as i know my immune supps cost a fortune. My own GP will not prescribe them for me as they are classed as red drugs that means because of the cost the GP does not have to prescribe them as this comes out of his budget. The hospital where i had my transplant send them by courier every month its incredible the money they spend on looking after you. I was told ny one of the docs at the hospital my transplant cost best part of 100,000 pounds which is mind blowing. I feel blessed to be given this 2nd chance and awful for people who are still suffering that awful disease including you. I pray that you stay well and will one day be free of psc. Im here for you whenever you need to talk. LOVE to you Mona......Skip.x
You are so wonderful to worry about us.
I am very glad you are doing well. YEA, I suspected the drugs to depress your immune systems are outrageously expensive. Our government certainly won't help us pay for them. I'm in California, USA.
You truly are blessed to have been given this 2nd chance. I can hear in your writing that you are not taking this for granted. Living life to the fullest. GREAT NEWS my friend. Indeed: your friend mona
Love you you as well.