Urso and grapefruit

[lizagood1]

Hi I was prescribed Urso yesterday, can I still eat grapefruit? Also the consultant told me now I have 1 autoimmune disease they will check for more, and I'm having a bone scan in 6 weeks, is this usual? What are they looking for? And is diet important, do you 'do's and don't s on some foods? I eat mostly chicken now as I digest this easier.,

[Hidden]

Hello lizagood1.

By coincidence I had grapefruit with breakfast this morning and I've been diagnosed with PBC 6yrs now, taken urso that length of time. I did read about statins and grapefruit and something about absorption (can't recall the exact terminology but I think the gist is that grapefruit with some medications due to chemical in the grapefruit it can have something to do with length of time medications are in the system).

I've never been advised to cease anything dietary since my path to being informed I'd PBC (I started to itch intensely early 2010, early December same year diagnosed). I did ask pre-diagnosis and post-diagnosis when I saw the consultant. He just said continue to eat how I had been (he did ask me a few questions on my first consultation beginning November 2010).

I've always had chicken as part of my diet, eat more of that than any other meat. I try to eat foods that dont' have additives if possible but a case of budgets. I eat a lot of fruit and vegetables.

Some say going gluten free is good but to be honest I don't agree. I did eat mainly gluten free a few years ago when my adult son was still at home and he had a temporary bowel issue where he was advised to cut out wheat gluten for awhile. (His problem resolved in doing so, his was put down to over-use of antibiotics in a short spell of having.) I can't say it made any difference to the itch (I only itch later at night now - start around 11p.m., vanishes by 6a.m) plus I can't say I had any dramatic changes in the repeat blood checks.

For me I started to feel less hungry at evening meal times before I started to itch at aged 45 in 2010 but even after diagnosis I still find I can eat as the saying goes, 'breakfast like a king, lunch like a queen and dinner like a princess' (or something like that!) this is how I feel every day. I can gorge away at breakfast and then still eat well at lunchtime but come evening meal I've tapered off and don't eat much. I find myself it feels better not eating after 6-7p.m.

Some PBC patients are offered DEXA scans but I haven't as yet. Unless it goes off the blood readings for the 'bone' component of them I can't say. I've not yet been offered one. I did have a Vitamin D check early days of PBC and was found to be 'on the line' but the consultant just said 'a bit low' (I asked his secretary for a reading as in number as 'a bit low' to me was vague). He wasn't concerned about it and wasn't recommending Vitamin D supplements but said if I wanted to, up to me. He mentioned utilising the sun (I was never a sun worshipper and I am in the North West of the UK so we can be a bit lacking) so that summer I did that and got a normal reading next check. Vitamin D can be a problem in PBC and it is required for bone health.

Some with PBC can develop osteoporosis and being female and over a certain age (usually it is said after the menopause - I started this several years ago and keep hoping its completed (I've not really had any symptons except my cycle went erratic but was normal when I had one)).

I had various other blood checks several years ago but nothing came back pointing to anything else and at the moment I still feel roughly the same as I did after being on the urso a year (in 2010 I had fatigue but it vanished at some point in 2011).

[Hidden in reply to Hidden]

My vit d was low but the fact it had just been winter they said would check end of summer

[SammyjoW]

Hi Lizagood1, I was diagnosed this summer and been on urso 3months now. I find I feel better when I try to keep to a low fat, low sugar diet and I know the absorption of fats and certain vitamins and minerals can be affected by PBC. I also had a bone scan as my mum has osteoporosis and the gp thought it best to check but the results came back fine. As we may not be absorbing all the vitamins and minerals that we need from our food it apparently makes us more prone to osteoporosis. I found that as soon as I started taking urso my IBS symptoms(that's what I'd gone to my doctor for in the first place) more or less disappeared. Also aparrently once you have one autoimmune condition it makes you more likely to have others. Have a look at the PBC foundation website and Liver north have a free DVD on PBC that you can send for.

Hope this helps

Sam

[Rosehip19]

I had a dexa scan to check my bone density and they discovered I had osteopenia - a forerunner of osteoporosis. I simply take calcium tablets with added vitamin D and am checked every 3 years or so. I assumed that for years I was just not absorbing the calcium in my diet.

[Wilmahair]

Not sure why but i have a distant memory of something about grapefruit not being good for us but never took much notice as i hate the flavour anyway. I could be wrong but something is ringing bells for me.

[GrittyReads]

Contact the PBC Foundation (see link at the top of the page) and talk to their trained advisors - you will see the links to phone an email contact. The PBC F host this site on 'Health Unlocked', and have mine of information on PBC, treatment, diet, exercise, etc. If you join - it's free - you get their guide on PBC, and access to even more info on their website. I'm not sure about grapefruit, but it is common for people with PBC to be at risk of other autoimmune conditions, so it's normal to be tested for these. The Medics should also check you for all other liver conditions, and other things with similar symptoms. As someone has already said, the bone scan is because PBC can interfere with the body's ability to absorb fat-soluble vitamins, like Vit D, and this slows your absorption of calcium - so you will be checked for osteo- problems, and possibly be given Vit D and Calcium, and this will be checked. Main thing is to keep positive, keep doing the things you love, follow a good diet and reasonable exercise to keep fit, but otherwise enjoy life: de-tress, have fun and coddle yourself.

Take care.

[lizagood1 in reply to GrittyReads]

Thank you Grittyreads, your advice is very welcome, I'm currently re evaluating my life, I'm always there for others will have to learn to say no occasionally and do things I enjoy more. Considering going part time work wise as as work 9-5 mon-fri and weekends are a blur, not really suffering from fatigue at the mo but now realise I have had a few bouts of it recently now know why. But your last couple of sentences have made me think even more. Thank you x

[GrittyReads in reply to lizagood1]

Glad to help - let us know how you get on.

Gritty xx

[Debbiem40]

Hi I was diagnosed nearly 14 years ago and have never been told to stop eating or drinking anything in particular. I try to follow a low fat diet for my weight, but not because of my PBC. Hope this helps.

[Ktltel]

I was told only 70 mg of "lean" protein in a day. Low sodium and sugar. Avoid foods with copper, some are: Chocolate/cocoa, nuts, wheat germ, tea, shellfish, broccoli, dry beans, to name a few. Google PBC diet. Lean chicken and turkey is good.

Hope this helps.

Take care, Stella

[lizagood1 in reply to Ktltel]

Yes it does, I eat quite a bit of broccoli and drink too much tea! I will certainly google the diet. Do you know what effect copper has?

[Ktltel in reply to lizagood1]

Google this...

PBC Menu and Meals-PBCers.org

Something about copper being stored in the liver.... Not good. Avoid foods that contain copper. Other great info. on there.

[lizagood1 in reply to Ktltel]

Hi just tried the link but it didn't work, would you have the full website address and thank you for your help

[Ktltel in reply to lizagood1]

pbcers.org/support/meals/

See if that works..I know I got it at PBCers.org

[Ktltel in reply to lizagood1]

Hope that last post worked. I tried it and it worked here. Hope you found the meals info.

Stella

[lizagood1 in reply to lizagood1]

Yes it did thank you, the meal plans are a good guide