Fasting and PBC

[ZEMR]

Hi everyone, I’m new to this forum, and I love all the helpful information I read here. I wish you all well.

I have a lot of questions, but I’ll start with just one of them for now :).

Is it bad to fast when you have PBC? Does the liver need constant hydration and many meals a day? Or is it Okay to go for many hours without food and water? I take URSO 3 times a day, so now I’m taking it early morning, then at dinner time, then before bed, but I go without it for 16 hours. Would that be fine? I have looked this up but didn’t find definitive answers. I see my GI in 3 days and will ask him, but I don’t want to tire my liver in the mean time. So I thought I’d ask in case anyone here knows the answer. Thank you so much in advance.

I wish you all the best health.

[mattiasw]

I have to take URSO regularily over the day, since otherwise the itch starts in my hands etc. So, I take 2 in the morning, 1 at lunch, 1 at 1700, and the last ones before going to bed.

[ZEMR in reply to mattiasw]

Thank you mattiasw :), I see! I have noticed that it’s very different for everyone. I take it 3 times a day, but sometimes I would forget so I take 2 when I remember that I skipped a dose. I’m going on vacation soon so I’m thinking of a susytem that will help me remember. Maybe an alarm on my phone!!

The lunch time dose is what I worry about, that’s why I asked, but hopefully my GI will have some answers for me on Monday.

[Sandymh in reply to ZEMR]

Hi ZEMR.

An alarm on your phone is a great idea. I still do it and I've been on medications for PBC since 2010. If on several medications like myself, its important to make sure your meducations do not interact with each other. For this reason it means I am taking my medications seven times a day. I use the Interaction Checker on Drugs.com. Apart from continuous itching, I am well.

[ZEMR in reply to Sandymh]

It looks like that what I have to do. That’s the easiest way to remember. Thank you Sandymh :).

[ninjagirlwebb]

The instructions for urso is to take it with food. I take it in the morning after breakfast & after dinner.

[ZEMR in reply to ninjagirlwebb]

Thank you ninjagirlwebb, I do the same too. URSO drove me nuts at first so the doctor reduced it to the lowest dose then increased it a little every week until I got used it and was able to tolerate the 1500 mg dosage distributed over 3 times a day. Now I’m tolerating it much better luckily.

[butterflyEi]

Hello ZEMR

Welcome! If you have a look at the patient information leaflet (PIL) it may give guidelines on how best to take your tablets it will also have a guide on weight to doage ratio. We all seem to be different in the way we take the URSO and you will probably find what is best for you by trial and error. For myself after over 15 years I take my dose all at once through dinner. For me this helps my tummy and nausea.

As to fasting I am no believer in fasting or detox however in a different thread on another forum someone posted about fasting to reset the immune system. I am following that particular idea with interest but not much hope. I believe the liver and kidneys need water to function.

I am sure your GI will have good advice on these questions perhaps you may like to share after your consultation.

Best wishes

[ZEMR in reply to butterflyEi]

Hi ButterflyEi, thank you for your response. My question about fasting is related to religious fasting, not the detox one. So I am thinking that going without water for 16 hours or more is not a good thing for my liver. But thought I’d double check here. I am not required to fast if my health doesn’t allow it, but I wanted to be sure before I make the decision not to fast. Someone here that went to a PBC conference wrote that fasting is a no no, but I couldn’t find more details as to what kind of fasting, and when I click on the co ference link, it leads me to a broken one.

I will definitely come back here to tell you what my doctor says about fasting.

As for the immune system reset fasting and other strategies, I am following that with much interest too. I think we should keep hope, otherwise we won’t be able to go on. Even when itching strikes, I talk to my brain, “I am not itching... I am not itching... :)” and I go get busy with something. Most of time it helps decrease the edge of it, and sometimes it goes away completely.

Thanks again.

P.S: I’m experimenting with few essential oils to decrease itching, I will write something about it if I ever come to a definite conclusion on which one works for me if any.

[iagra]

If I learned anything in this life, it is moderation is the key to everything. Even good things, like working out, when too much of it, can really hurt you. Fasting is opposite to moderation. It's drastic. I am not a doctor, but, common sense tells me, starving yourself can't be good for you, especially if you have health problems, such as PBC. Resetting your immune system with fasting? Any credible proof with sufficient statistical data to that? The key word in this sentence - credible, from multiple credible sources, not just one source. Talk to your doctor before considering something like this.

[ZEMR in reply to iagra]

Thank you Iagra, fasting for me is for religious reasons, but it’s not mandatory if one’s health does not sustain or allow it. It’s only for healthy mature adults. So I know I can skip if it geopardizes my health. I just wanted to have second opinions that can possibly echo mine. I ended up fasting for just one day, then skipped on day 2, as I was really worried that I may be putting my liver in harm’s way. I see my doctor Monday so I’ll definitely have an answer by then. In the meantime, no fasting for me.

Resetting the immune system, I believe, should be through detoxifying our diets, which in turn will detox our bodies, without the need to fast or only drink juices. Like you said, without proof and solid evidence, it’s a risk to try.

After being diagnosed with PBC, I started looking at life and how we should live it differently. Less is always more, natural is the way to go, and hope for a better tomorrow is a must to be able to keep going.

Thanks again, I appreciate your insightful input.

[imansmum]

Hello, This link might be useful to you,

hamad.qa/EN/your%20health/R...

I presume you are fasting for the Holy month of Ramadhan. I was diagnosed with PBC twelve years ago and take URSO twice a day (max dose). Fasting has always been a benefit to my illness and my consultant doesn't discourage it. Please check with your consultant first though as every patient is of course unique.

[ZEMR in reply to imansmum]

Hi Imansmum, thank you for your reply. I appreciate you sending me the link. Yes my fasting is for Ramadan. I have been researching for so long about if it’s okay to fast while suffering PBC, but have found little info. I actually found the same link you sent me, a while back along with other links but they all talk about other liver conditions, and not PBC. I read that fasting is beneficial to fatty liver disease but not so good for cirrhosis, but we actually have something different than those 2. Our condition may lead to cirrhosis, but not necessarily. It’s the constant inflammation and bile accumulation that may need water and meds to help flush them and alliviate symptoms. I am required to take my Urso 3 times a day, so not being able to take it at lunch time and going without water for 16 hours is what worries me. Unfortunately we have no consultant in the USA, and I’m not sure what a consultant is. I read about this for the first time here. So I’m thinking to ask my doctor if we have any equivalent to that. I see him on Monday so I’ll defintely ask about fasting because I want to make sure whether I fast or not, that I’m doing the right thing. I was supposed to see him a week ago but he canceled as he had to travel, so I’m kind of stuck not knowing what to do.

Any way, thank you so much again, and I hope your condition is under control. You said you have it for 12 years, so how is for you? Manageable? I hope so :).

Mine is manageable so far but I’m tweaking and changing my life style gradually to be able to live with the symptoms more comfortably.

[ninjagirlwebb in reply to ZEMR]

A “consultant” is the term for “specialist” in non US, Great Britian commonwealth countries. The US equivalent would be a hepatologist.

[ZEMR in reply to ninjagirlwebb]

Oh ok 👍🏻. Thnx a lot for explaining. It makes sense.

[Jlruggie]

Jlruggie here. I started itching. I have red marks on my forearms belly back and shins. My general practitioner is treating me for scabies. Permethrin and coconut oil cream. It’s been 2 weeks. The cream sort of stopped the itching. But now it’s gone and itching is back. I’ve been taking 2 urso in morning and one at night per GI script due to my weight. 110 for about a year. Contacting GI and returning to general practitioner this morning. I did find that blended oatmeal dust and peppermint oil in a bath stopped itching. Also straight peppermint oil stopped itching. Jlruggie

[Mrsfancypants]

I have my urso in one go in the morning