Cholestyramine Washout and side effects: Hi there, was... - NRAS

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Cholestyramine Washout and side effects

Beelady profile image
5 Replies

Hi there, was started on Cholestyramine to wash out Leflunomide as my white cells very low. As soon as I started the cholestyramine I felt unable to eat, started getting stomach pains straight away, nausea and for past two days have also had ongoing and very bad diarrhoea. Ive been so bad that i didnt take last nights dose and wondered if anyone else had this and what advice they were given as cant contact Rheumy nurse until tomorrow?

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Beelady profile image
Beelady
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helixhelix profile image
helixhelix

Phone 111 perhaps? I hope you are at least drinking loads of water...

Beelady profile image
Beelady in reply tohelixhelix

Trying. Yes been on phone to them this morning. Waiting for gp call back. I dont want to lower the dose if its ineffective at lower dose but still making me ill. All complicated by me being away from home in camper van but was so bad yesterdsy had to book into travelodge to be near private toilet 🙄 I may leave off it until i get home tomorrow when i can at least be near own bed and bathroom and talk to Rheum team.

AgedCrone profile image
AgedCrone

For what it's worth when I had to stop Leflunomide & I asked about the washout my Rheumy said the side effects can be horrid......so he gave me a Depo i jection to tide me over until I started on a Biologic.

You are right to get in touch with your Rheumy nurse tomorrow & ask her advice.

I found on Leflunomide I had no appetite & lost a huge amount of weight in the three months I took it....it's strange that it helps some people for years, & for others it's a nightmare!.

If you can't reach your Rheumy nurse try calling 111.......probably a better bet than your GP as most GP's will have no idea...& there are a variety of clinicians to ask on 111.......you could even give them a call today.

Hope things settle down now you've halted the washout.

Beelady profile image
Beelady in reply toAgedCrone

Thanks. Yes contacted 111. Awaiting call back. Yes i know my symptoms are the reported possible side effects just wasnt expecting so severe! Will prob wait till I get home tomorrow to re start at least mear own bed/bathroom as im away for weekend🤦🏻‍♀️ and had to abandon camper for hotel. Someones these RA meds etc feel as bad as the RA!

AgedCrone profile image
AgedCrone in reply toBeelady

That is what my Rheumy said..I think as I had lost so much weight & was down to about 50kgs he took sympathy on me!

Hope you can enjoy the rest of your weekend.

Tbh, I would ask if you can just wait it out....I suffered no side effects from not having the wash out...but talk to your medics who know your clinical need ...but no point spending the next week in the loo if you can avoid it!

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