Upping the dose of Questran/cholestyramine

[Maram3adel]

My mom was recently diagnosed with PBC and her doctor prescribed a daily sachet of Questran for her to help with the itching, but the itching doesn’t go away and it’s really bothering her, so I was wondering if it’s okay to increase the dose and take like 2 sachets a day? Does it help or the itching never really goes away?

[butterflyEi]

For me the itch has been a terrible problem. I started with Questran Light - I asked the PBC Foundation for guidance with this as I had none from the GP, their wisdom was one sachet before breakfast and one sachet after breakfast. There is an article on the Itch by Professor Neuburger in the 2015 edition of the Bear Facts magazine which can be found on the PBC Foundation web site (if not already a member it is free to join). I have found that the best medium to mix Questran with is Kefir and a mashed banana, some use orange juice, sometimes I have it with porridge but it does have to be quite wet otherwise the Questran is grainy and very unpleasant. I have found taking it with water is gross. It does take a while for the cholestyramine to get into the system but I am sorry to say I cannot remember how long it was before I had to move to the next medication but I suspect they will want your mom to be on it for at least 3 months to give it a best chance. Questran works for some but as was my case not for everyone. For me I also take Rifampicin and Sertraline but still the "itch" is ever present but at a level I can live with. I hope this is not the case for your mother. I also use a 2% menthol derma cream for temporary topical relief. It is advisable to keep the skin well lubricated, not to wash in hot water.

Is your mom's diet good? Although PBC is not a diet related disease some people find that certain foods can increase the itch, for me I find having too much sugar in the diet causes more problems, these days I have a diet rich in fresh fruit and vegetables, fish and chicken. I have oats for breakfast either in home made muesli or porridge keeping fat intake low and have cut down on salt.

Has your mom tried anti histamines? They work for some - I was prescribed two cetirizine twice a day in the early beginnings of the itch and had some relief, it is an over the counter medicine. As ever though any changes your mom makes in medication needs to be discussed with her primary carer.

hope this is of some use

best wishes

[Maram3adel in reply to butterflyEi]

First of all thank you so much for taking the time and writing this long reply, it quite appreciated.

Well, as for the Questran it causes indigestion for my mom so she takes it as far as possible from her main meals, she takes one sachet at 6 am and another at 7pm. The gross taste of mixing it with water is kinda bearable for her so it’s fine. She started the Questran on 27th of January this year, so I was expecting it to make the itching less already, but maybe it’s preventing it from getting worse. She tried many soothing lotions before discovering the whole PBC thing, and she still uses some of them till now but you know their effect is like quite temporary.

Her diet is good and her sugar intake is fine. But she doesn’t really have a good appetite anymore; since everything makes here feel bloated and the indigestion is constant.

She is already on antihistamines too for the allergic rhinitis but they didn’t do any better regarding the itching.

I’ll make sure I contact her doctor soon.

Thank you so much again

[genj65]

In my case NOTHING has stopped my itching I suffer every single day 😔😕

[Maram3adel in reply to genj65]

I am really sorry you’re going through this, I can only imagine how difficult and annoying it is.

[Hidden]

Lemon juice is all you need for the itching, just squeeze fresh lemon and drink it.

[Schnauzergirl in reply to Hidden]

Really? Seems a little simplistic...

[Hidden in reply to Schnauzergirl]

well, it works, right along with apple cider vinegar. both are good for itching, just that simple.

[Schnauzergirl]

Hi. I was on considerably more Questran. Several sachets a day. Helped a bit, but not greatly. And turned my bowels to concrete, which led to other issues. I then went on Rifampicin, and it seemed to work much better. Itching did go away... even once I stopped the Rifampicin... I am now taking Fenofibrate once a day, and no itching. Also, some of my liver readings have returned to almost normal! Needless to say, I'm very happy, as is my gastroenterologist. I would ask your mother's doctor about other options.

[Maram3adel in reply to Schnauzergirl]

Thank you Schnauzergirl for you reply. So for how long did you take the Rifampicin? I’d definitely ask her doctor for other options because the itching is giving her insomnia and awful restlessness💔

[Schnauzergirl in reply to Maram3adel]

Was on it for a couple of months. But gastro said to take it as I felt I needed to. So, went from every day to every three days.

[Schnauzergirl]

Oh, and, my sympathy to your mum. I nearly went nuts with it, and got quite depressed. Makes it hard to focus, function normally, sleep.... awful.