Colesevlam for Bile Acid Malabsorption

Santosha12
Santosha12 Online Community Member Posts: 2,134 Championing
edited August 10 in Talk about your impairment

This is a bit of a long shot but....has anybody been prescribed Colesevlam for BAM but 'off licence' after a negative SeHcat scan, and if so, how have you got on with it? Or even prescribed it on-licence ? has it worked or any side effects?

My SeHcat scan was negative in 2024 but my consultant gastroenterologist thought in case my result was a False Negative, I could be prescribed it to see if it works.

I started it last week after several weeks delay by my GP prescribing it but have had splitting headaches daily since so am reluctant to increase the dose as I'm supposed to, from 1 tablet to 6 x 625mg tablets a day.

I'll email my consultant tomorrow for advice but seen online that blood tests for Triglycerides are supposed to be done first (and regularly) which haven't been done, and it seems to be contraindicated if prescribed Estradiol which I am, via HRT patches.

I think it's likely to be a bit of a rarity as it's also an expensive drug but thought it's worth asking. Thank you!

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Comments

  • Holly_Scope
    Holly_Scope Posts: 3,409 Scope Online Community Coordinator

    Hi @Santosha12 gosh, I wouldn't know where to start with this. Bless you, how are you getting on with it now? Hopefully the headaches have stopped now 🤞.

  • Santosha12
    Santosha12 Online Community Member Posts: 2,134 Championing
    https://forum.scope.org.uk/discussion/comment/1057213#Comment_1057213

    Hi @Holly-Scope, thanks very much for your reply. My headaches did stop but only when I stopped taking the Colesevlam! I only took it for 7 days, one a day.

    Events have kind of overtaken that now as had a new, confirmed diagnosis of exocrine pancreatic insufficiency since, which explains a lot and I'm on PERT now (enzyme replacement therapy) now which comes with its own problems. Not least a European-wide shortage but I've got enough for the next 2 weeks or so.

    It's a full time job being unwell 🫠 cannot say how many hours on phone to GP/hospital/pharmacy's but at least I've got them for now and can eat.

    The jury's out as to whether I've got the BAM as well but I'll have an appointment with my gastro consultant, hopefully in September so that might shed more light on it !

    Thanks again for your reply, its appreciated 😊.

  • Holly_Scope
    Holly_Scope Posts: 3,409 Scope Online Community Coordinator

    It's a good job you stopped taking them then! I had to google that diagnosis and medication and it sounds like a lot of work. Does it effect your moods and make you tired?

    Oh I can imagine! That does sound like a nightmare constantly having to chase medication but i guess if it's in high demand it must be good. I'm pleased your sorted for the next few weeks at least and hopefully you'll get some more answers in September 😊

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