Supplements

[7443jec]

Do any of you take probiotics? Also, I’ve seen in Holland & Barrett quite a few supplements that are supposed to be helpful for liver function. Would it be safe to take any of these? Thanks. 👍🏼

[Ballymahon2]

I check with my consultant before i take any supplements

[Sona_akb]

I only take vitD supplements

[Hidden]

7443jec - To your first question, yes, I take probiotics. To the second, I wouldn't take 'liver' supplements because I take urso. If I thought I needed something else for my liver I'd ask the one who prescribes urso. He does so after reading my blood tests, fibroscans, etc. People who take otc supplements while on prescribed meds and without that prescriber's agreement, run the risk of harm. Other supplements, not claiming to be liver friends, contain substances you don't want. For example, some contain copper. The liver stores copper. People have reported on this site that MRE of their liver, said to be the most accurate test available, was inconclusive because of the amount of copper in the liver. I would avoid taking supplements without asking your consultant, or the PBC Foundation who will give you advice straight from the leading liver specialists. PBC Foundation is best place for advice, and if you are feeling that maybe something could be done for you that isn't happening at the moment, they are definitely the peeps to ask.

[7443jec in reply to Hidden]

Thanks , I’ll wait until I see the consultant again. Xx

[Hidden in reply to 7443jec]

7443jec- Would you be able to ask your consultant what does he recommend to test for, or supplement if needed, deficiencies in your body caused by absorption difficulties? Also, you could ask him what is his opinion on probiotics supplement?

[Jlruggie in reply to Hidden]

How do you contact the pbc foundation? I had a terrible skin condition that lasted for 6 months. It started out itchy then painful little red pus spots on my fore arms shoulders chest and shins, tops of my feet, everywhere the sun hits skin on the front but also my torso. GP doc treated me for scabies with pyrethrum cream. It helped but it didn’t go away. Dermatologist took a skin biopsy and couldn’t figure out what it was. Finally said non contact dermatitis and prescribed antibiotic steroid cream. Also said to stop all meds and supplements except ursodoil, fiber pills and probiotic, including fenofibrate which I had started at the beginning of this year. My pbc specialist has prescribed a second round of fenofibrate to lower my enzymes. The first round caused flu symptoms. Finally after 6 months skin pus painful red mark rash is slowly going away. My Hepatologist pbc specialist said nothing but she’s sorry it’s happening. I have to make time to find a better pbc specialist. Can pbc foundation help me find a better pbc specialist? (I used aveeno colidal oatmeal baths and cream which helped. When the itching was really bad I took a bath in peppermint essential oil which helped. Also used Epsom salts in baths and blended oatmeal. I put witch hazel on and hydrogen peroxide at one point. It all helped. I just want my specialist to tell me whether it was due to pbc or not. I think the rash could have either been triggered by stress or the fenofibrate. I haven’t taken the fenofibrate again yet. I guess I’m afraid to make an apt with my liver specialist because I’m afraid of being frustrated by her answers.

[gwillistexas]

I attended a support group several months ago. Literature was passed out that was written by a liver transplant specialist in Ft Worth, TX. His advice was to avoid supplements because we never know if they’re clean. He said a good multivitamin was bedt. I researched the best multivitamins. Centrum and One A Day had been strictly tested and were found to be the best. My hepatologist knows I take One A Day for women with no iron. He has no problem with it. 😊

[Noomum]

I was diagnosed with PBC 4 months ago. Whislt going through advice to help me manage the condition, amongst the usual stuff like alcohol and foods, my consultant told me to avoid over the counter supplements.

[butterflyEi]

Hi 7443jec

Yes I take a probiotic, ProVen Probiotics Adult Probiotic 25 Billion. The reason I supplement with a probiotic is because I am prescribed Rifampicin which is an anti biotic which helps mask the so called itch of PBC. My liver specialist knows that I take it. I also eat kefir and yoghurt which is a more natural way to take in probiotics. I source products from Bodykind who supply me with a vitamin D plus K spray and a multi vitamin without added iron. Apparently the iron can be difficult for some of us to process through the liver. The following link will take you to their website should you wish to investigate/research for yourself further.

bodykind.com/product/428-ma...

Each of us present differently and may have additional problems so it is best to ask your specialist about adding any supplements especially if you have a healthy varied diet full of goodness.

[7443jec in reply to butterflyEi]

Many thanks. I’m having a fibroscan in two weeks, then more blood tests. It’s a lot to take in at first, mine was diagnosed during treatment and surgery for breast cancer. So I’m struggling a bit at the moment. Xxx

[butterflyEi in reply to 7443jec]

My goodness, so much all at once, it is a lot to take on board.

Whilst you are undergoing so much treatment I would think it would be best to ask the specialists about any vitamin supplementation as it may mess up medication or even may not be good for you. I am guessing you have not felt much like eating so I wonder if anyone from the Breast Cancer side has suggested any particular diet to help you? We have a Breast Cancer Haven about 20 minutes from us, I wonder if you have one nearby that you can source additional help if you need it. As for the PBC we are all here for you, come back and ask any questions there are a lot of knowledgeable people with a wealth of PBC experiences. Certainly, if you would like to, come back and let us know how you get on with your fibroscan.

best wishes

[cazer]

Do check with liver consults first...

[iagra]

Urso is the liver supplement. I also take calcium and vit. D for bones, multivitamins and vit. C.

Good luck!

[Michi1]

I use a supplement shake daily which has prebiotics, probiotics, plant protein and a wide variety of food derived vitamins and minerals. I also take, selenium and vitamin C morning and night, and my Urso. I ran the supplements by both my hepatologist and my primary care doctor and both approved of them. The reason I take the selenium and vitamin C is it was recommended by an Australian doctor who claims it could repair liver damage caused by PBC. I do not know if that is true but it can't hurt to try it, as both supplements are good for us for lots of reasons. Recently I started supplementing collagen as well. I'm seeing how that works after 30 days to help with my skin elasticity, etc. We'll see how it goes!

[mrspeffer]

GOOD MORNING...Good subject for all of us to share our personal experiences. As far as probiotics, yes, I recently changed from Renew life to Dr. Mercola's Women's formula. I notice a difference within just a few days. I cannot take URSO or any other drugs for our disorder, so i do supplement with a variety of products. I only purchase those with no or minimal fillers, check all the ingredients, then source for the best price. I do use liver support as well as many separate vitamins and minerals. As much as i would like to take a multi vitamins, the ratios are terrible and most, especially Centrum is full of fillers, etc. There are many companies out there, so it is important to put on your thinking cap before purchasing. I too have asked my hepatologist about supplements. He is in favor of what i am using and very aware of the issues with the companies that use fillers and gluten in their manufacturing process. I am always willing to share what I use with other members here. If you want details, contact me through chat. Be well

[Jlruggie in reply to mrspeffer]

Did you find out if Dr mercolas supplements have fillers, gluten iron and copper? I’ve taken ursodoil for the past 20 years which initially brought down my liver enzymes to almost normal. I took a round of fenofibrate 4 years ago but had flu symptoms so I stopped. Hepatologist ordered another round of fenofibrate at the beginning of this year but I got a 6 month itchy skin rash so I stopped it on my own. I also had kidney stones. My dermatologist said to stop taking the fenofibrate. I’d like to start taking my supplements again so to feel better. Calcium, vitamin d, 400 out vitamin e, 500 vit c. I took Dr mercola supplements before but they were expensive.

[mrspeffer in reply to Jlruggie]

Yes, unless you buy it on sale and the 3 monthly. Supply, dr. Mercola came pricey. I know his stuff is rather pure, and depending in product, may contain minimal fillers. Standard process is clean too. A less expensive brand choice may be integrated therapies or Life Extention. Both better than the standard stuff out there. Bottom line.. in supplements, we get what we pay for. I like Rainbow light for Calcium. It's a good based product. Be well

[Skypony]

Hi 7443jec, I take probiotics for couple of weeks after antibiotics only, to help restore gut fauna - don't know if it helps. Research that I've read on the topic of supplements and PBC unfortunately indicates that nothing has been proven to make a positive difference. Best wishes