Listen to your Body

General Blog
1

Low grade fevers and cough and night for two weeks. I was thinking I had a Summer Cold. On 7/7 I visited my Pri. Dr. because I couldn't get an appt with my GI Dr. I was only able to see the NP that was really not up to speed on my medical issues. She scanned thru my file, gave me a script to get bloodwork done and said to follow up with my GI Dr. the next day. I told her that my GI Dr. does not see patients on Fri because he does procedures that day. I pleaded with her to do STAT bloodwork because I was peeing brown, very tired, and my eyes were swollen and yelllow! She said NO! I immediately left that office and went to the ER where I was admitted within two hours. My biliruim was over 8, my liver profiles were much higher than usual. They started me on 2 anitbotics that night. The next day I had an MRI and my GI doctor perfomed an ERCP because I had several stones and sludge blocking my bile ducts..That night my bloodcount dropped because I have anemia or maybe from the procedure so I needed a blood transfusion. I was in the hospital for 5 days so the antibotics would start to kick in and my billirum levels would drop and also to watch for my bloodcount plus the low grades fevers at night. I've been feeling a little bit better but still sooo tired. Since being home I'm itching like hell! I can't take it anymore. I've been itching since January and no one has a cure to stop this most miserable itch ever. I started drinking the chol packets yesterday to see if that works and I have a follow up appt with my doctor on Tuesday. I was given a prescription of Rifiapim(?) by my Liver Specialist but I'm so afraid of the side effects.I will see what my GI thinks about taking it.I know it requires monthly blood work so maybe thats what I need. I've tried every cream. Neltrexone was working but doesn't seem to get me thru the night anymore. Cold washcloths are the most soothing at this point. I have plenty of scabs from scratching and now I'm at the point that I feel like I want to rip my toes off!!!! It's just not my feet but my palms, my legs and back..I'm starting to worry if there is something else wrong with me!!

Please, please if you know your body and you know something is wrong seek medical attention right away. I waited too long!! I literally couldn't see out of my eye's that how bad the jaundice was.

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WOW, sorry to hear that, but with the exception of the itching, I'm glad you're doing better than before. You're absolutely right though, going in and seeking treatment right away and not taking no for an answer is the only way forward. Until Jan/Feb time when I was diagnosed, I did everything I could to stay away from Doctors, now I'm all for seeing them after what I've been through. When I went in because I was orange and yellow, my bili was 18 - highest he'd ever seen. Now it's 0.8. Hope you get some relief from the itching, I only get it on my hands and feet.

3

I'm glad you got help. Fire your doctor and have better days.

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it is your blood levels that are making you itch. Usually they increase something like ursodial a medication to help lower the counts go to your md immediately

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They put me on rifampin. It was the only thing that worked for me. I tried urosdial and Cholestyramine both of those drugs did nothing at all. I tried Naltrexone it worked for two weeks and then the itching came back, slowly at first. that stuff made me feel like I was trying to function while covered in a wet blanket. Then was the rifampin it worked like awesome. I could almost still feel the itch but it turned into a very tolarable tingle. As for the side effects I would rather stain a white shirt orange than scratch holes in my skin. the other side effects I know I was feeling way worse with PSC symptoms than the the dizzyness and flu like symptoms that drug could give me. relief is relief I dont care where it comes from. This is just my personal experience. Living with PSC is one big Cost–benefit analysis. Weight your options and make a move.