Problem sourcing colesevelam

[Swidge13]

My pharmacy hasn’t been able to source my repeat prescription for colesevelam, it’s been about a fortnight, and I’m almost out. I don’t know where pharmacies get their stock from - it’s not as simple as going to a different pharmacy, is it? Has anyone else had the same problem recently with this?

[janfarrugia]

I have Colevesalem for Bike Salts Malabsorption but it doesn’t seem to work for me. Can anyone tell me if you are supposed to eat normally i.e. eat fat etc so the Colevesalem km has something to work on? So far (and this is my 3rd time of trying it ) it seems to make my loose bowels even worse. I am only taking one a day as I dare not increase. I have switched from taking it with breakfast to taking it with my evening meal. Any advice would be appreciated. Has anyone else found it doesn’t work for them and if so what have you tried instead?

Are there any foods you eat that are helpful

But in any event I will be happy to post some to you to help you out

[Swidge13 in reply to janfarrugia]

I’m not a doctor but I’d say that colesevelam isn’t causing your diarrhoea, and suggest that you need to increase your dosage if it isn’t helping yet. It helps slow everything down, and reduce the acid too. I’d suggest you take one morning and one evening, and if there’s still no improvement within a week then gradually increase one at a time.

A dietician has been added to my gastro team and they currently have me on a low-fat regime of 40g fat per day, and advised me to watch the traffic light system on food labelling. It’s definitely not making me worse.

[Swidge13 in reply to janfarrugia]

Sorry, I replied in a rush. Re foods that help, I’d strongly recommend drinking kefir. I started late January after a very bad stomach month and I haven’t been this well in many years. I drink about 200ml a day and my favourites are Biotiful Cherry, and Strawberry.

[Blue_Hawaii in reply to janfarrugia]

I was prescribed doses of Colevelam 2 tablets 3 times a day. Now I take it twice a day. That works for me any less, I have problems

[janfarrugia]

Thank you. Maybe I haven’t given it enough time to work yet but it seems to always make me worse. I am on day 6 now. Will keep with it for a bit longer

Will definitely try the Kefir.

If you want some of my Colesevelam I will happily post some to you to tie you through until you get your prescription. Maybe it’s another Brexit related problem?

[Swidge13 in reply to janfarrugia]

Thank you but I couldn’t ask you to send some, we’d probably be breaking some forum rules. 🤣.

I’ve been taking colesevelam for perhaps 6 years now and it’s a life-changer for me, although my body accustoms itself to the dosage and then needs more. I was up to the maximum dose of 8 tablets a day, split morning and evening. But the kefir helped so much that I’ve been able to gradually reduce the colesevelam dosage without ill effect. I’d been hesitant about kefir because my body doesn’t react well to yoghurt but it seems kefir is low in lactose or even lactose free (sorry, not sure) and it doesn’t cause me any of the yoghurt-related problems (severe pain, bloating, wind, indigestion). I tried a few flavours but settled on the fruity ones. I have friends making their own, it’s meant to be very easy.

[NJ85]

I have seen a few people in a Facebook group mention problems with stock. I got mine last week from boots in Glasgow. No mention of any issues.

[starlightblue]

It might be worth phoning the manufacturer for advice. I had a similar problem when Normacol was unavailable for about three months last year. At least they were able to tell me what the problem was and when it would be resolved.

[Swidge13]

A day after my OH tried collecting my prescription from the pharmacy and was told that no stock was available, I’ve received a text message from the pharmacy to say my prescription is ready for collection. Hmm, a bit of a coincidence?! Anyhow, panic averted.

[Picauville]

I have had problems in the past with supplies of Colesevalem. In an emergency the pharmacy would ring round other branches to locate supplies. Also you can ask for your prescription and go to another pharmacy. I changed from a major high street chemist to a smaller local chain and have had no problems since, but I always put in the request well in advance!Anyway I’m very pleased your supply has been sorted, it’s an extra worry we can do without.

[Swidge13 in reply to Picauville]

I know some prescription services won’t resupply you unless you have less than 6 day's supply left, saying it only takes 2 days to fill a repeat prescription! 🤣 Not in my world!

[Picauville in reply to Swidge13]

You have my sympathy, these rules set to try us! I have had much friendlier and supportive service since I went elsewhere but I understand it's not always possible. Good luck 🙂

[Sarah_PRDA Partner]

Hi Swidge13

I've checked the NHS Specialist Pharmacy Service and there appears to be a shortage of bile acid sequestrants.

There are a couple of things you can do:

Ask your pharmacy if/when they are expecting it in stock.

If they don't have it in stock, can they advise of an alternative brand which is in stock. This will require a new prescription to be issued by your GP, the pharmacy should be able to help you with this particularly if your prescription is digital (so the GP surgery can see you haven't already filled your existing prescription)

If your pharmacy has no alternative or no date for re-stocking, ask round different local pharmacies as they may have different suppliers and similarly if there are alternatives available.

NHS Specialist Pharmacy Service: bit.ly/33WZVEw