Resolved Itching?

[marty102]

Has anyone that had pretty bad itching take medication that completely resolved your itching? If so, what was it?

[butterflyEi]

Hi marty102

I started itching in 2014 and after a few false starts I was referred to a hepatologist at the beginning of this year. I had to ask for this referral here in the UK. Currently I take 2 sachets of colestyramine a day. One before breakfast and the other by 10 a.m. it is also known as Questran or Questran light which is the one I take. For some once it is in their system it is enough unfortunately it did not clear the itch for me so I also take rifampicin at 300mg twice a day. I was started on150mgs twice a day but it was not enough. I now have mostly good days but if the itch does break through I use the 2 per cent menthol cream as recommended by the specialist or I ice my arms which is the usual site of my itch.

Hope this is helpful

[marty102 in reply to butterflyEi]

butterflyEi

Thanks for the reply. I currently take 4 sachets and still have itch.. My doctor said he'd give me rifampicin but I'm nervous. The side effects seem so extreme plus I read it can increase liver enzymes. Do you have any problems?

Michelle

[butterflyEi in reply to marty102]

Hi Michelle marty102

I have only been on the Rifampicin at 300mgs for 7 weeks and will not have any blood tests until I have been on it for 3 months. The blood test from the 150mgs twice a day were advised as fine, this was over the telephone from the secretary and was unable to have words with the specialist. I get the occasional headache overnight which is unusual for me and I think that may be a symptom from Rifampicin. It is about 5 or 6 weeks that I have been comfortable in my own skin again and I guess for me the side effects outweigh the misery of the itch. I was getting to a stage where the itch consumed my life day and night, more so at night, it was only my lovely kind husband that gave me the desire to keep going and not leave him on his own. I am in my 60s and he in his 70s. As I type this it sounds a bit of a melodrama but I was very low!

On an inquisitive note why do you take 4 sachets, the recommended dose is one sachet before and one sachet after breakfast while there is the most bile in the bowel. (A good article by Professor Neuburger in the Bear Facts magazine - I think spring 2015 can be found on the PBC Foundation web site in the members section. It is all about the so called itch of PBC and the medication recommended as at the time of going to press. I believe some people have asked about fibrates but I do not know anything much about it. Perhaps someone else will post about it.

Are you under a hepatologist?

[marty102 in reply to butterflyEi]

butterflyEi

My itch is so bad today I'm willing to try just about anything 😢 I'm seeing a gastroenterologist for my PVC. I like my doctor, but his nurse is so incapable. She argues with me over anything I call about. She gives the doctor incorrect information/messages and won't call me back for days. I'm thinking of changing just because of her. I called once about Rifampicin and she got the message all messed up and told me to get benedryl for the itch. WTH? I'm not sure she even talked to the doctor. My doctor is the one who prescribed 4 packets...I had originally started with 2. When the itch didn't get better he said to do 4 and if it still didn't help we would move on to Rifampicin. That's where I am now...if the damn nurse can get it right.

Michelle

[butterflyEi]

Hi Michelle marty102

Here in the UK our GP is the first port of call and then we are referred (hopefully) to specialists. It would seem that to avoid this "nurse" it may be better to have an appointment with the gastroenterologist. You may like to take a look around the PBC Foundation web site, there is some useful information on there that might arm you for a talk with the gastro specialist. I do not know enough to understand why a gastro specialist would double up on the Questran. Perhaps an email to the PBC Foundation asking for their wisdom on this matter may help you. I do hope you find some answers.

best wishes

[Biddyb]

Somewhere I read that the itching is caused by too much Uric acid in the body try and find foods or remedies that cut down the acid and see how that works, I started itching at the beginning of this year but only noticed it in the evening. Started taking Apple Cider Vinegar and Honey teaspoon of each mixed together daily and my itching has almost gone, Google other products that help cut down the acid. Hope it helps