I am very jaundiced at the moment. I have never been this jaundiced before and wondered if anyone knows what it is like. These are my symptoms, and what I am experiencing.
I have really really really itchy skin, I have scratched off skin and am covered from head to toe in thumb size bruises. The itching is driving me insane and nothing seems to help, my doctor prescribed a cream with 1% Menthol which sooths the skin for a while. I am on medication for the itchy skin, I live in New Zealand and they have given me Colestipol hydrochloride....... well this stuff is "Disgusting" You have to mix it with a liquid, I have chosen to drink it with milk so it sticks to the milk and not my throat. It feels like gritty plastic in your mouth, and when you try to drink it with water it sticks to the back of your throat. I usually flush it down with a glass of water after. And it doesn't work very well, I am still itching. I have been trying to keep cool, because if I get to warm the itching gets worse.
Second problem I have is my skin, eyes, inside of my mouth are all a nice tint of yellow (which I do not suit) LOL.
The last thing that is driving me nuts is the metallic taste in my mouth this started to get worse a week ago. Nothing can get rid of it.
Does anyone have any suggestions to help with my symptoms?? I have been told by my specialist that it is only going to get worse. Here's hoping that future generations of PSC sufferers can get treatment that works. :)
I can't help too much on the jaundice front - I've responded well to treatment so the little jaundice I had actually went away. I can say on the itchiness I couldn't take the colestipol drinks. They were so bad I was skipping them and itching again. They actually make colestipol tablets - huge 1 g things. If you can handle swallowing large pills, I take 8 in the morning and 8 in the evening and it works really well. I'd ask your doc about those.
Thank you, I am seeing my Doctor in two days, I will ask for something else. Yes they are disgusting, like eating tiny bits of crunchy plastic. I use milk because it seems to stop it sticking to the back of your throat a bit better.
Small victories and all that. Let us know if you are able to switch to colestipol. Some people find its not as effective as the drinks, but it worked for me.
Ellie said:
The metallic taste has subsided. Yeah, one thing I don't have to worry about as much.
I was diagnosed with PSC in 2002. There have been no symptoms until recently. Now I've started to itch. My arms and then a few weeks later my legs when I'm outside in the heat. I have no jaundice or pain. Does this mean that the disease is now progressing? A month ago all bloodwork was ok.
Thanks for any insight into what the doctors forget to tell me and I forget to ask.
Ok, was given a new prescription by the doctor for the itching. Called (it has other names too) rifadin. It is red, and I popped open a capsule the contents are red. It can make your tears orange (this never happened to me) however when you have sleep in your eyes that is orange. LOL looks weird but I don't care, because within three days of taking this medication the itching stopped!!!!!! yep completely even when my blood tests were coming back really really bad, it is an antibiotic and a miracle. I would recommend it to everyone. saved me from insanity, I wasn't sleeping with the itching, and driving everyone in the house mental. Hope you all try it, don't be scared of the side affects. Ellie.
I have definitely had the itch for a few months. Recently my Dr. finally called and prescribed Doxepin. This is an antidepressant used to stop a person from feeling the itching. It has worked for me and I don't have any after affects. I haven't seen this particular medication listed on here. I was really relieved that it worked for me.
O yes... the dreaded ITCH. Like no other itch and far worse at night. First time I got it bad was awakened in wee hours, flew out of bed, felt like biting snapping blackflies - head to toe! Didn't know what to do, Benadryl and hydroxyzine (Atarax) hadn't offered much relief during the day. I remembered I had some hydromorphone from a neck disc protrusion a yr earlier and took a chance that it would have same effect on itching as it did on pain. It worked! Was like a nice fluffy wall between me an the itch. I only use it sparingly (2 mg pills) if the itching is bad as it is a narcotic pain med, my GP ok'd it, given the dire circumstances. Severe itchiness is as bad as or worse than various intense forms of pain. I'd also tried cholestyramine - aak! It's like ground up drywall, couldn't get it down and has to be taken regularly for any benefit. I heard about pill form but likel could not handle a huge tablet.