Can someone help me with information as to why my itching has increased 100 fold since my diagnosis in 2012? I always experienced mild itching that presented no problem,but this past week it has increased 100 fold. My back in one spot is so sore to touch as a result of scratching… The itching presents itself as small round red dots then followed by itching. Mostly on my upper torso. Does this itching episode mean my condition is worsening? Will this itchy pass or is it permanent? I noticed somewhere that the antidepressant Zoloft helps. I am taking 5o mgs a day. It doesn’t help. I am taking benydrl right now and get a little relief from that. My great concern at this point is this a indicator of advancement in my PSC? Thank you in advance for any information you can send…
It may be disease progression or it may be something else. In my case, itching would get nutty whenever I was having a cholangitis episode and would get better after a course of antibiotics. Also in my case, red bumps were a reaction from the itching rather than vice versa. Some other drug options for itching to discuss with your doctor include cholestyramine and rifampin.
Thank you jtb… The little red spots present before they itch. My back is very sore. Tell me if you can. Does everyone present the same with a cholangitis attack, or there several scenarios? My itching on my back is very painful right now…
I have the red bumps and the itch. It's been bad for 6 months straight now. My doctor says it's liver toxins even though my bilirubin is only 1.7. I take 10 mg of zyrtec, 450 mg of rifampin, 20 mg of hydroxyzine, and 50 mg of Zoloft daily. I still itch. Some days worse than others. I've scratched so much, wearing clothes felt like raking sandpaper over my entire body. The doctor said the only real relief I will get is when I get transplanted. Unfortunately, I haven't even gotten listed yet because my meld is only 10. The thing the has helped me the most is chopping my fingernails off. Scratching isn't nearly as satisfying anymore but my skin doesn't hurt so much. Praying you find relief!
I am sorry to hear that your itching has increased.
You didn't say if you were taking Cholestyramine. My LFT's are excellent--no indication of liver problems; yet, according to my doctors one can still have itching from PSC. Mine started about 16 months ago. I take Cholestyramine twice a day, Allegra once a day and Hydroxyzine (for itching) before I go to bed. So far this is controlling my itching. I have an area on my back that causes me pins and needles sensations and pain. My doctor calls this hypersensitivity and says it is from the liver disease.
I don't have any experience with red dots. You might want to have that looked at by a dermatologist.
I hope you find some relief.
I'm sorry to hear about your itching Sissy. I can't add much more to what has already been said but I too would advise you seek further help from your doctor.
Also, see below a link to another discussion post on the same issue which you may find helpful:
http://forum.livingwithpsc.org/forum/topics/itchy?id=6288168%3ATopic%3A20489&page=1#comments
I pray that you find relief soon. Take care x
Cholangitis attacks are pretty varied among different people. For me, I'd have a night of nausea and vomiting that would be followed by my liver function tests and all my PSC symptoms, including itching, spiking way up. The itching would be completely debilitating.
For any big change like this, it wouldn't hurt to give the doctor a call and explain what's going on. He may want to order a blood test to see if the numbers have changed significantly. It is also a chance to ask about the drug options for alleviating the symptom.
I had my transplant 7 years ago, but I remember the itching very well! I also had the red dots, and still do. Usually when my itching would get so severe I couldn't stand it, my doctor would order an ERCP and put stents in my bile ducts to help open them up where the bile could get through. I also noticed that if I ate very fatty foods it would bring on an itching attack. Ice cream was the very worst. So my doctor put me on a low fat diet. I was only allowed 30 grams of fat a day and it helped a lot, along with Benadryl. It's a hard diet to stick to but the relief was really worth it. And now, thankfully, I'm itch free! After my transplant that's the first thing my family noticed: I wasn't constantly scratching.
Sissy,
Sorry to hear you are having increased itching. I have tried many drugs including Zoloft but the one thing that has worked now for over 4 years is Rifampin. I take 300 MG two times a day. Now when you read up on the drug don't let it scare you. It was originally developed for the treatment of Tuberculosis but they found that it has been a great help to patients with PSC related itching. Are you on Ursodiol? If not I would encourage you to ask your doctor about putting you on it. I am taking 1200 MG a day. It will help to thin the bile which in turn will also help with the itching. I would bring the red spots to the attention of your hepatologist. I know after I get an ERCP my itching goes away for a good while which is always nice. I feel like for some time that I no longer have PSC. I wish you well.
I've never had the red dots. Just itchItchITCH. Hasn't been a problem since last summer, but I have since been prescribed naltrexone to try on an as-needed basis when the itch recurs. This drug's main usage is for management of drug and alcohol dependence (!) but apparently there have been very positive results with biliary-related pruritis. It's also VERY expensive. I would be interested to hear if anyone has tried naltrexone and if it provided any relief. I have the Rx on hand for my next itch attack which I hope will not be any time soon..........if ever.
I have a suspicion you are dealing with a blockage that may not be letting enough out of your system. I would have severe itching, usually bottom of my feet and my palms-usually my #s were up and when I would have an ERCP and they put in stints to drain out the mess, I'd feel better rather quickly. As another mentioned: Are you on ursodiol, I take 600 mg per day and it has controlled things better than any other med I have been on. I have had UC-since 1985 and then developed PSC in 1995. I hope they find the right mix to help you feel better and get rid of the itch-it's not fun. Happy Thanksgiving
Sunshine said:
I had my transplant 7 years ago, but I remember the itching very well! I also had the red dots, and still do. Usually when my itching would get so severe I couldn't stand it, my doctor would order an ERCP and put stents in my bile ducts to help open them up where the bile could get through. I also noticed that if I ate very fatty foods it would bring on an itching attack. Ice cream was the very worst. So my doctor put me on a low fat diet. I was only allowed 30 grams of fat a day and it helped a lot, along with Benadryl. It's a hard diet to stick to but the relief was really worth it. And now, thankfully, I'm itch free! After my transplant that's the first thing my family noticed: I wasn't constantly scratching.
I had a transplant 7 years ago too. Glad you are doing well.
I agree with the value of Cholestyramine for itching, but it does taste like old wall paper paste. Phosphorous level for me is involved in the itching. I take a Tums after each meal which binds the phosphorous and limits the itching.
Regarding the red bumps, make sure it is not Scabies. I got it at the hospital and the itching and rash nearly drove me crazy. If the bumps are in or close to your navel, be tested for Scabies.
Wishing you an itch free holiday season!
EAD3
Cholestyramine can definately help. Are you taking Ursodiol? For some of us it makes the itching unbearable - I had to stop taking it.
Another thing that affects my itching is what I eat - hi fat foods makes it much worse for me.
Hope this helps...