I was first diagnosed 4 years ago at the age of 17.
Thank God im in the early stages. I've always been very reserved about discussing my illness. But I realized it will help me face reality if I discuss it.
I'm currently taking Urso 3X daily (my doc is actually taking me off it in a few months) Apriso for UC and Cholestyramine as needed for itching but can't down it. I'll throw up first.
I was wondering if anyone can share anything to help my itching and fatigue. Any vitamins or supplements or any other medications. It's very tough being a student (btw i'm studying overseas for this year then coming back to the US to study) and being very tired and itching. Especially since my roommates and friend have no clue that I have PSC. I tell them its just allergies or something!
Hi Bernie, my son is 14, and was diagnosed at 12 we are in Perth, Western Australia. He takes 1 x 250mg ursodeoxycholic acid tabs/ 2 x day and this has definitely helped his itching. I'm not sure what your dose is? My son also does not like to talk about his PSC (he also has Crohn's and Autoimmune Hepatitis), but he doesn't mind if I talk about him anon. He takes a multivitamin with antioxidants (Blackmores slow release) to counter any ill effects of his azathioprine, prednisilone and urso and he is also on 1000mg calcium /day plus 1000mg/day vitamin D to help absorb the calcium (must be taken together). This we hope will counter any bone density issues from the steroids. We found splitting his azathioprine in 2 doses stops any nausea. He was taking omega 3 but it was one tab too many for him I think. He also uses Cetaphil face products and sunscreen as they are low allergen and as he is starting puberty this has helped with any rashes that break out (not sure if you get them).These are all recommendations from his doctors. Hope it helps, Rosie
My doctor prescribed Doxepin, which is an antidepressant. It does something to the nerve endings so that you don't feel the itch. I was so surprised because I told the pharmacist that I didn't need an antidepressant and she said that it is used for severe itching like we have. I was so relieved to have something work!
Cholestyramine works well for my itching. It is very difficult to drink when mixed with water. I frequently blend it into a smoothie containing a banana, coconut milk, some sherbert, and a few strawberries. It is very tolerable this way. If I'm not hungry for a smoothie, I'll mix it with about 4oz of Parrot Young Coconut Juice. This hides the wallpaper paste taste and texture and is fairly palatable. The coconut milk or juice contains MCT's (Medium chain triglycerides) which my hepatologist says, may help us with the weight loss and fatigue problems.
The Cholestyramine also helps my high cholesterol and helps control the diarrhea, but I have to take it twice a day. I'm also on Urso with ? some stabilization.
Thanks I'll try that. I used to mix it with orange juice. All it did for me was that everytime I drink orange juice I feel like im taking the med again!
EAD3 said:
Welcome, Bernie,
Cholestyramine works well for my itching. It is very difficult to drink when mixed with water. I frequently blend it into a smoothie containing a banana, coconut milk, some sherbert, and a few strawberries. It is very tolerable this way. If I'm not hungry for a smoothie, I'll mix it with about 4oz of Parrot Young Coconut Juice. This hides the wallpaper paste taste and texture and is fairly palatable. The coconut milk or juice contains MCT's (Medium chain triglycerides) which my hepatologist says, may help us with the weight loss and fatigue problems.
The Cholestyramine also helps my high cholesterol and helps control the diarrhea, but I have to take it twice a day. I'm also on Urso with ? some stabilization.
Weird how itching doesn't affect everyone with elevated bilirubin. I work at a medical clinic and some patients with advanced liver disease and bilirubin through the roof and quite jaundiced do not experience the horrific itching. The only thing that ever worked for me so I could get through the night was a low dose tab of hydromorphone which I had leftover from an injury. It worked... and my doc had no problem with occ'l use at night or if staying at home.
I'm on ursodiol and not sure if it's doing much as a bile thinner as I had the worst flareup ever in late December (2 1/2 mths after starting Urso) was hospitalized on IV antibiotics and badly blocked stent (largest width available!) was removed. I saw the pics and stent was blocked, it was barely visible amongst the uhh.. glop. 23 days later (yesterday) stent-free and more fever/chills, R upper abd pain. ERCP and restenting this week.
If I correctly understand the pathophysiology of the itching, it has very little to do with the bilirubin level or amount of jaundice and everything to do with the bile ducts being blocked or too narrow. With the very narrow bile ducts in PSC, the bile acids then build up in the liver and back up into the blood stream and cause the itching. Other causes for liver failure do not necessarily block the bile ducts.
I hope this helps many of us understand this disease better.
Urso helps my fiancé. Lots of lotions (Seeing his skin flaky or red with the marks of scratching upsets him.) We use Tu’el products as they are pretty pure in their ingredient compounds. Keeping his skin well oiled and moisturized soothes him most of the time (Mentally more so I think.). Although when he becomes very itchy he starts a project to take his mind off of it as best as possible.
Try telling your friends/roomates about the PSC. The stress of the secret isn’t good. Accepting this condition is part of us and firmly declaring that it does not define or control us has made dealing with this condition a bit easier for us. We opening share our world of procedures/meds/side effects. Bringing light to the condition and spreading awareness. Since we’ve opened the door to sharing his secret, we found that 2 of our close friends had UC (fiancé has PSC and UC). They were also hiding their condition. There is nothing wrong with PSCers! Please know this. I love my PSCer and respect him so much more for the strength he has in dealing with his struggle. It makes me want to be a better woman. Allow someone to feel this way about you. There is nothing wrong with you. Please know you do not have to hide who you are for PSC, you are greater than it.
Alix: Sending good thoughts and prayers for your ERCP. Let us know how it rolls out. Fiancé is due next month for his bi-monthly ERCP. We’re thrilled… As are you! His build up seems to be clock works now. No bueno BUT, we’re thankful for today and will be happy for that.
Thanks Gloria. ERCP (#8) yesterday went ok, been sleeping off the sedation, not quite firing on all cylinders yet! Will be interesting to see how long this new stent will hold up. Seems I obstruct with or without stent -- not good.
EAD3 - I'm puzzled by the relationship of bilirubin, jaundice, itching, stenosis/obstruction - to pruritis. The episode I had in late Dec was the WORST horror show to date. Besides the fever/chills, nausea, vomiting, pale stools, tea-colored urine etc etc, there was intense RUQ pain, whereas previously it was low-grade pain/tenderness. There was clearly a high degree of stenosis and obstruction to the CBD as with the previous 2 nasty episodes (early Dec and last Aug) - yet - zero itching all 3 times. (Not that I'm complaining of course...) However, in the past, horrible itching was always present with each CBD obstruction. Also, as of last summer, intrahepatic duct beading/stricture reported as well. Go figger.. ?
I'm no expert, by any means, but with the severe pain, fever and chills it sounds like you may have had an episode of bacterial cholangitis, rather than common bile duct obstruction. If so, the CBD was not necessarily obstructed. Thus, you may not have had build up of liver enzymes in your blood stream, hence no itching. Check with your Dr. about that possible scenario.
Bacterial cholangitis can be very serious and, I believe it is usually treated with antibiotics. Your hepatologist should definitely be involved if you have another episode like that.
Spoke to fiancé about the post… He reminded me of how he takes an antibiotic should he have a fever/chill. The symptoms go away. When he feels pain, we’re booked for an ERCP but now after reading your post EAD3, we will be asking about the bacterial cholangitis scenario. Thanks! As always, thankful for this site.
Hi EAD3 - I did have bacterial cholangitis and was treated with IV abx in hospital. Liver enzymes were very elevated and the stenotic, scarred CBD was definitely obstructed by an extremely clogged stent. All complicated by a thick, sludgy bile that hasn't seemed to have been altered by the ursodiol. Have been this route several times, but the deteriorating condition of the CBD is causing problems more frequently, more intensely. 2 weeks after the stent removal in Dec, I already was getting familiar early signs (bright urine, pale stools) of obstruction starting up yet again. Hopefully things will settle down with this newly placed stent. Will be discussing all this with my doc next appt.
Thanks to all of you for sharing your issues with us, its good to be personal with others who are dealing with PSC. We are continually amazed by all the varied symptoms and complications. My husband and I learned about his disease about six years ago and we lean on our doctors at University of Michigan. Now we are just settling down after two bouts of bleeding varices in his esophagus and serious anemia. Just keep wondering what might be next.....
His build up seems to be clock works now. No bueno BUT, we’re thankful for today and will be happy for that.