Questron question, if I may?

[Godfrey1]

Hi everyone,

I was diagnosed with PBC 3 years ago and started on Urso. Only have a partial response to that but it's better than nothing and I'm hopeful for the new alternative.

Long before I knew I had PBC my main complaint was painful joints, especially my feet. I was diagnosed with arthritis and told it would propbably settle down. It did just that last autumn but was swiftly replaced with the dreaded itch. I'm covered in wounds from scratching so when I had an appointment I asked for advice. I was given Questron and have been taking it for a week. My itch is now off the scale and I'm wondering if I should persevere or do some of us find the itch actually gets worse with Questron

I know Urso takes time to start working and am wondering if Questron is the same.

If anyone has experienced this I would be very grateful to hear from you.

Thanks in advance

Lorraine x

[Hidden]

Hello Godfrey1.

Sorry to read you developed the PBC itch. I have been itching now since this time 2010 so 7 years now. I know the urso that I started December 2010 (took 9 months to get a diagnosis but the wheels of the NHS turn slow!) I continued to itch but I'd say after 18mths on urso it started to subside a bit and change pattern. I tend to itch later at night (around 11p.m) and it then vanishes by 6a.m. Causes broken sleep.

Yes I know how your skin looks with scratching but for me over time my skin, especially on my legs has got tougher and I don't tend to cause wounds anymore.

I've never asked for Questran (or colestryamine as it is also known in the UK by generic name) but I did read long time ago that it is hit and miss as to if it will eradicate the itch. Given this information I have continued to avoid. If I do get desperate though I will have to ask for something and this seems the first line of defence against itching.

I don't know if Questran causes one to itch more (have you looked at the Patient Info Leaflet at all? If you've not got one, check online, be able to find one on there for what you have got). Apparently from what I can recall reading on here a few years ago someone posted stating that it took some time for the Questran to actaully start working and think it was a few months as opposed to a few days.

I found I itched more when I started on the urso and was going to quit taking it but it then started to retract and then as stated, over time changed pattern.

I believe you have to take Questran at a completely different time to the urso. Do you take the urso all in one go? If so, it might feel better taking it at intervals in the day. I once took the urso all at once with breakfast and boy did I start to itch a couple hours later when I don't normally do. (You can apparently take the urso when it suits you as long as take it all but from my experimenting over the years, I find ti works best for me taking it in 3 doses during the day.)

Hope someone else comes onto the site and can fill you in more on the Questran and give you a better guide than I can offer.

[Godfrey1 in reply to Hidden]

Thank you Peridot. Itching is apparently a side effect of Questron, not sure how that one works!!

I take it in the morning and other meds in the evening so there shouldn't be a conflict there.

Ive been taking Urso for 3 years without any issues. I will persevere with it for now in case it has a slow processing time. Thank you for taking the time to answer, much appreciated.

Lorraine

[exy21]

Takes a while to work. I take 2 daily.

[Godfrey1 in reply to exy21]

Thank you exy, it's a comfort to know others didn't find it worked quickly but stuck with it for eventual response. X

[butterflyEi]

Hi Godfrey1

I am an "itcher" started in 2014 diagnosed in 2006. It is my experience that cholestyramine (Questran or Questran Light) takes a couple of months to get into the system so if you have only just started it do try to persevere. I take it in orange juice which makes it more palatable I also sometimes stir it into milk and add to my morning porridge.

As a topical temporary relief use a 2% menthol cream. I was originally given 0.5% which was useless, I now use Arjun which I sourced through the local pharmacy but I suspect you can get it on amazon. I also use ice blocks directly onto the skin. I try to avoid scratching by using an old flannel thereby not breaking the skin - easier said than done though!

Unfortunately the Questran Light did not rid me of the itch so 6 months further down the line I was placed on Naltrexone which I reacted badly to and am now on Rifampicin which is helping enormously but has not rid me of the itch completely. My next specialist appointment is 10 April.

Cool baths and no scented products is supposed to help but I never used scented products so I cannot really speak to this thought.

Hope this is of some help.

best wishes

just a quick add, if you are a member of the PBC Foundation (free to join) in the members section you can find back copies of the Bear Facts magazine. In the Spring 2015 edition there is an article on itching and the various alternatives available for treating the so called "itch"

[Godfrey1]

Thank you so much Butterfly. I will carry on with Questron and will certainly look into Arjuna right away. My PBC nurse advised dermacool but as you say, it has no effect at all. Affected areas even with broken skin, I can't feel the menthol at all.

Think I must be a bit weird as I don't mind the taste of neat questron, takes all sorts I suppose😀

Thank you for replying and your advice, much appreciated.

Lorraine x