About a year ago following some unpleasant symptoms around my feet and up my legs I was diagnosed with pernicious anaemia and was given loading doses of vitamin B12 with regular follow up injections at the surgery. Since then I have been given cholestyramine to help with the so called itch of PBC which as some of you will know has instructions not to take other medications 1 hour prior or 4-6 hours after taking the solution.
I have not been getting the benefit from my B12 injections also the tingling I had in my feet going up my legs prior to diagnosis has seemingly returned.
Whilst doing some research on the internet I found that cholestyramine is a medicine that reduces the folate in the body or can make it harder for the folate harder to be absorbed. My B12 injections have always been scheduled in the morning and I just never thought about it being a problem. I know I will need to speak to the GP about the timing of the injections but I wonder if anyone has any experience of this and how do you manage it.
I hope I have explained myself clearly and would value your responses.
best wishes
Written by
butterflyEi
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I've not gone down the medicaiton route for itching as yet and hope I never have to. (I've not been so bad itchwise for the last 4 nights and strangely enough I've slept quite well with not waking up much, hope I get an hat trick tonight and do a 5th as I never seem to manage to get beyond the 4 nights of an occasion.)
I think it is fair to say that a lot of medications can cause deficiencies and I did once read somewhere about the colestryamine. Think you are the first person on here to actually mention the folate (or folic acid) levels and maybe a connection with this medication for itching.
Interestingly you might like to take note of something I've just thought of, aren't the Vit B injections muscular as if so I can't see how it would somehow interfere with colestryamine that is taken orally? A question you might like to pose yourself and let others and I know perhaps.
Thank you for your reply. So glad to read you are having a mini holiday from the itch
Yes I had thought that an intramuscular injection would be okay but during some internet research I found a document which sited colestyramine as a problem with folate which is needed to convert the vit b12. I also looked at diet and found I eat nearly everything on the list which provides folic acid.
So still with itchy arms and shoulders but not as bad as it was and numb tingly feet I am not the happiest bunny in the world. Could be worse!!!
I have jsut looked at the UK patient info leaflet for colestryamine. The company that produce are Teva and the link to it I post here. This must have been where I orginally read your posting on folic acid as this leaflet does state in Section 2 about taking this product 'long term'.
a most useful link. My patient information leaflet (PIL) with the prescribed colestyramine says that it is manufactured in France by Farmea and the marketing authorisation holder in England is Bristol-Myers Pharmaceuticals and nowhere in the PIL can I see the information that you have found in section 2. I have read it again twice just now and cannot see any mention of folic acid.
I shall print off the information from the link you gave me so that I can compare the information properly.
I hope you had another clear night giving you a good sleep.
Hello, I presume you mean your cannot find the folate mention on your PILs?
No, wasn't for a 5th night, had a bit of an itchy one and less sleep! I am sure it is the urso that contributes to my itching because it subsided after starting urso and I'd been on it over 6mths when it originally did. I did think itching worse when I first started the urso. I say I am certain it is the urso if I have it at a high dose as I once experiemented and took the lot with breakfast, itched later morning that I normally do not do.
For 3 nights prior to last night I had cut back on one of the urso tablets (my weight is a bit less than when I originally had it prescribed at 10mgs per kg body weight in December 2010). Was prescribed 600mgs daily but I only took 450mgs morning, lunchtime and following evening meal and last night I went back to the 4 tablets per day with the final 300mgs following evening meal. Hence I tthink this might have now had some bearing on sleeping last night as I felt itchier than I had the previous few nights. I also noticed in the following 3 mornings I had taken less urso I didn't rise of a morning with that hollow feeling in my stomach with an acidic taste.
Hi. I was diagnosed with PBC last July and around October I began to get a tingling, vaguely numb sensation in my feet that slowly increased up my calves. I struggled to go to sleep, awoke a lot and couldn't go back to sleep, and then awoke early, and my fatigue became worse and worse. I went to the GP (convinced I had MS) and she sent me to a rheumatologist who eventually diagnosed fibromyalgia. I've had various aches and pains for as long as I remember but even so I don't know if fibromyalgia is the correct diagnosis or not. She started me on a very small dose of imipramine (an antidepressant that has pain relief properties for neuromuscular pain) to help with the pain and lack of sleep and this has slightly improved the tingling in my legs and feet as well.
Good luck with this - once you have a few chronic/autoimmune conditions it seems there can be quite an overlap between them, making it hard to know what condition is causing which problem.
Now I look back I am not sure whether to put the tingling numb sensation down to pernicious anaemia or PBC. I guess it will be back to the GP to get a better idea than just my guess work.
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