Pbc

[janine541]

Has anyone taken the questrian powders for the itch and how long does it take to work

[butterflyEi]

I took Questran (colestyramine) from about 2016, from what I remember it took quite a few weeks before it started to work but it really did not stop the itch completely. Naltrexone was added but that did not react well with me so I was switched to Rifampicin and then Sertraline at half dose was added. That cocktail seemed to control the worst of the itching but did not resolve it completely. Recently I have found it difficult to source Questran. The following link will take you to the notification.

sps.nhs.uk/articles/shortag...

According to the wisdom of the PBC Foundation back in 2016 Questran should be taken one sachet either side of breakfast. I was taking it in orange and mango juice but discovered Kefir which I found worked better for me. There is an article in one of the Bear Facts magazines on itching it may be spring 2015 but I am not sure.

Recently on another auto immune disease after a blood test I was found to be zinc deficient and started treatment. Almost at the same time I read an article about someone who found magnesium had helped. Although we have a magnesium water filter at home I decided to buy the spray and have been using that for about two weeks and I have to say that currently my "itch" is the best it has been in a long while.

Going back to the Questran also around the time of the vitamin addition as I had not been able to get the colestyramine I have been prescribed Cholestagel which I am finding is kinder on the tummy issues I have been experiencing.

As with everything we have to go through it seems to be trial and error. I know colestyramine works for some as soon as it is in the system but others, like myself, have to keep trying alternatives and additions. A 2% derma menthol cream may help as a topical application and ice to keep the itch cool may also help. Did any of the doctors suggest an antihistamine whilst taking the Questran during the period it takes to get into your system.

Sorry for the long post but I hope I have remembered everything and I hope it is of some help to you.

let us know how you get on.

[Annac]

Hi, I was diagnosed 13 years ago and have travelled this PBC path very quietly until just over a year ago I sort of noticed differences "a blip" I called it. Anyway it proved by blood tests that the numbers had changed significantly and so to support the Ursodeoxycholic acid I was given Ocaliva - Obetecholic acid. I had never had the itch to any degree but since starting Ocaiva it has started. I attend the Royal Free Hospital in Hampstead and they tell me this medication is not readily available through the GP as very expensive. I have been taking it for 4 months and can call them any time. With the itch - I noticed over the years that occasionally it happened throughout the winter when wrapped up to keep warm. In the warmer months with less clothes it was not there. So we must all run around in the snow in summer clothes !!!!

Apologies for indulging in my history but have you changed medication?

Questran has not work for me, but I was interested to hear from ButterflyEi that zinc could have helped. I was advised to take Zinc and Vit C soluble tablets which apparently also help with keeping colds away. Not sure if it is helping how do we tell if it would have got worse ?

So many questions with PBC and all the answers are personal and trial and error.

As for the magnesium spray - how do you use it. (I know that sounds dumb !).

[butterflyEi in reply to Annac]

Straight on to the skin. It says in the information that if your skin tingles when first using magnesium it is a sign of deficiency. Unfortunately I did not read that beforehand so did not take notice of anything.

[Annac in reply to butterflyEi]

Thank you

[Sandymh]

I was 8+ years but it's not been available since last year and questran light is worse so I'm on Colesevelam tablets instead. Questran did stop my itching although it lessened it a bit but nowhere near enough, but since being on Colesevelam without questran I'm finally itch free. BUT I had to increase my Urso from 600mg to 900mg daily and I started itching again, so I cut it back again because I wanted to be itch free while on holiday. Dreading going back to 900mg when I go back home.

[genj65 in reply to Sandymh]

Sandymh I too suffer from dreadful itch tried everything just went through 3 treatments of plasmapheresis did nothing 😏 so is colesevelam prescribed medication?

[Sandymh in reply to genj65]

Hi genj65.

Yes it's prescribed. My Gobused to prescribe but changes were made, and now my gastroenterologist prescribes it for me instead. It's also known as Cholestagel.

[genj65 in reply to Sandymh]

Sandymh thanks and I actually took the Cholestagel a couple of years ago it didnt work at all took for over a month Thank you.

[Sandymh in reply to genj65]

I didn't know if it was working for me or not, but while I've been on holiday, there has been the odd day here and there that I've missed a dose and I've been itchy the next day. Coincidence or not, I don't know. Dreading going back on 900mg Urso when I get back home though as that will start me itching again. I've been on 600mg for a long time until about 3-4 months ago when Hepatologist upped it. I decided I wasn't going to let it ruin my holiday so went back to 600mg. I'm due to have a fibroscan and hoping my results are ok. If they are I'll ask to stay on 600mg. Hope you find something to ease your itch.

[genj65 in reply to Sandymh]

Sandymh I take 1200mg of ursodiol do you think the itching comes from the urso? I'm beginning to think it's the reason since I've tried everything for my itching and nothing stops it. I take a cup of children's liquid benadryl to fall asleep at night. Thank you for your reply 🙃

[Sandymh in reply to genj65]

I'm certain it contributes to itching on a higher dose. I've not been itching much for a few months but as soon as I started on 900mg I started itching again. I'm prescribed Phenergsn to help me sleep.

[Sandymh in reply to Sandymh]

Sorry...Phenergan

[genj65 in reply to Sandymh]

Agree and thank you Sandymh have a good evening..

[Sandymh in reply to Sandymh]

Gobused? 😂 Stupid autocorrect 😒

Supposed to say GP used to prescribe.

[dtol]

Yes, I started itching horrendously after being put on obeticholic acid. I developed unbearable itching, awake all night, scratching myself sore, etc. Within 3 days on cholestyramine it had stopped. I find the generic one is easier to drink than Questran. Also, my pharmacist said the supply issue is now over.

[FranSP]

I started Questran twice a day, then 3x a day and now I’m starting 4 x a day which I was told is the maximum dose.

So far the itching is somewhat less, but still very troublesome. I’m also applying Benedryl gel and a menthol and camphor lotion. I’m still scratching but going on with my life anyway. I’m going to explore Zinc spray as suggested below.

[janine541]

I'm on 2x questron a day but the itch has not fully gone but a little more bearable

[janine541]

Well after 8 days of the questron the itch has finally baited a lot but the nausea and stomach pain is not nice