Cholestyramine (Questran) for Bile Acid Malabsorption

[MrsD-unit]

I am having difficulty obtaining Questran or Questran Light to treat sever bile acid malabsorption. My pharmacy says it’s currently out of stock (which it often is) but now they are saying it’s not likely to be available until April 2020. This will make life very difficult & I was wondering if this is a national problem? Any suggestions? I’ve messaged my consultant but do not have a response yet. Thanks in anticipation.

[jbrking]

cholestyramine (Questran)

colestipol (Colestid)

colesevelam (Welchol)

Those are the 3 main treatments. I take questran and luckily my pharmacy managed to get me a few boxes last time. There has been a shortage all year for all because of a manufacturing issue with the main active ingredient. So I limit myself to one a day and lots of anti diarrhoea tablets (loperamide). So many are struggling with this. Ask your pharmacy if they can get any of the above, even own brand doesn’t need to be the ones named in the brackets. If you’re on Facebook there is a great group for this condition where people like us can talk, share advice and experience and moan/sympathise with each other.

[MrsD-unit in reply to jbrking]

Thank you very much for your reply. I’ve been struggling all year due to the shortage but it seems to have escalated! Like you I think I’ll start to ration & use additional loperamide & I’ll see if the doctor can prescribe either of the alternatives. When I explored this previously with my consultant he said it was only Questran licensed for BAM in the UK. Thank you for the tip about the Facebook group, I have just had a search & requested to join.

[Hidden]

It does appear to be a national problem. I managed to get 20 sachets from a local pharmacy as that’s all they had on the shelf. Got another prescription from my gp the other day & spent 2 hours on the phone ringing around all the pharmacies in the phone book!! Found another pharmacy about half an hours drive away that had 46 sachets. I’ve limited myself to half a sachet twice a day for fear of not being able to get hold of any further supplies. I also belong to the Facebook group for BAM that jbrking suggests. It’s great to know ones not on their own with this problem!!

[Losmith in reply to Hidden]

Can you tell me which Facebook group this is so that I can join? Many thanks

[Hidden in reply to Losmith]

Just look up Bile Acid Malabsorption & it will come up in the search on Facebook.

[Whitesugar]

My pharmacist got me a different brand. Another company is making it. I'll have a look when I get home from work and let you know

[MrsD-unit in reply to Whitesugar]

Thank you. That would be great!

[Barnclown]

This link is to the official national pharmaceutical service (NPS) website’s pfd detailed info sheet re this shortage:

sps.nhs.uk/wp-content/uploa...

And this link is to the NPS website’s shorter summary info re this shortage:

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

I shared these links from NPS with the pharmacy i use when any of the many prescrip meds my chronically ill husband & i are on long term are ‘unavailable’...eg when my local GP surgery dispensary can’t get one of our meds due to wholesaler supply probs, this other pharmacy always does its best to help us....so i gave them these links (they weren’t aware of this NPS website): they were actually DELIGHTED to discover this source of info, which their wholesaler confirmed is correct. so far they’ve managed to fulfil his questran scripts twice with questran light since this supply prob started many months ago. My husband relies on questran to manage BAM due to his early onset crohns multipe bowel resection surgeries

I discovered this NPS website thanks to a member of this wonderful forum (THANK YOU AGAIN 💐)

❤️🍀❤️🍀 Coco

[MrsD-unit in reply to Barnclown]

Thank you! I’ll take a look at the links 😊

[Barnclown in reply to MrsD-unit]

🤗 Hope you get sorted out 🤞

[Denisemurphy]

Hope you get sorted. Might be worth asking your doctor to re print the prescription and take to a different chemist. I take colesevelam (tablets) and they were out of stock, but managed to get questran and colestipol by taking the prescription to an independent chemist (as they use different suppliers). Colesevelam is back in stock now, if the dr will change you to that (I think it’s works better for me than the sachets) Good luck, I can’t function without it, fingers crossed.

[Misdiagnosed_82]

Unfortunately it is a national problem. I'm surprised you managed to get it till now. I 'm struggled to get any at all for about 18 months. I have been on a waiting list to see a specialist for almost a year and till don't have a date. I've been given an alternative prescription but it doesn't work. I am back to having bad cramps every day and have to limit my activities. I can't risk going out for the day and if I go out for a few hours I can't risk eating or drinking anything till I get home.

[sweetsusie]

Have your doctor prescribe you either: Welchol or Colestipol...both of these are WONDER drugs for chronic diarrhea. I take Colestipol...4 tablets a day...2 in the morning and 2 in the evening...you can take up to 6 a day with no problem. I have my life back.

[Whitesugar]

So, I have a box of generic Colestyramine Light 4g powder for oral suspension produced in Spain and distributed by Mylan from Potters Bar. I don't know which wholesaler my Pharmacist uses, but I could find out next week if you want.

[Lynn1956]

It seems the same all over I can’t get any either ! My dr says end of October possibly