You can tell I am new at this PBC....does a... - PBC Foundation
You can tell I am new at this PBC....does anyone take milk thistle seed ? If so does it help ? Lemon water ? Will diet help at all ?
I use to take Milk Thistle but have stopped. My GI dr. said it wouldn't hurt me. I have heard of Drs. putting patients on it before surgery. Never heard anything about lemon water. Just one wedge of lemon will give me heart burn.
I take milk thistle you take it because it is good for you with pdc .I have had this condition for 10 years
everyone who has this has different symptoms.
Thanks for your reply. Glad to hear it is good for PBC.
I started experimenting with milk thistle myself April last year after having 2 LFT results in 6 months (Oct 2011 and Jan 2012) that each showed a slight climb. I took milk thistle for the month prior to having repeat bloods done May 2012 and I got significantly good results.
I then ceased taking milk thistle thinking like during 2011 it was just a coincidence as I'd had 2 slight ups and then a decline with the LFTs at same time.
Oct 2012 LFTs did show a slight climb again so from early Dec I started taking milk thistle. I had another good result Jan 2013 and also my May this yr's were pretty good too so I think there has to be something in it.
Unfortunately, due to all the new laws regarding herbal products, I have found that the original ones I took are no longer available and they are only available in a less mg strength. I now take one milk thistle every other day partly now due to the cost as I obviously have to pay for those along with the urso (of which I was recently informed I can only have 28 days of tablets as opposed to my prior 90 days that I had been on since Dec 2010. I think I came 'to light' with the urso due to taking the now recalled 300mg tablets (600mgs per day am on) and having to be swapped to 150mgs., the GP who wrote questioned the 90 days another 2 GPs had in the past let me have due to the fact I pay a prescription charge and also it's the only meds I take).
I have a Reader's Digest book on natural healthcare and milk thistle is featured. Apparently it is used in emergency rooms for anyone who has ingested a poisonous mushroom as it aids the liver in not becoming severely damaged due to the poison. As far as it is known there are no known side-effects from milk thistle.
Now lemon and hot water, I don't think there is any problem as it is said that lemon in hot water first thing of a morning is a good system cleanser. If you can drink it (I have many a time) then I can't see that doing any harm at all. I wouldn't take lemon and hot water on a completely empty stomach myself tho' as I do think that lemons are quite acidic. If you have a citrus juicer it is good to juice half a lemon with oranges, take that way with breakfast. Oranges contain Vit D so you can add a bit of benefit there at the same time.
My diet changed slightly prior to being diagnosed with PBC. Took out certain things - MSG, any artificial sweeteners or strange food colourings - whilst having repeat LFTs at intervals. Think that is a good thing myself. I tend to adopt more the fresh and more unprocessed your food the better. I don't tend to eat anything after the evening meal, I think it gives the system that break as it will still be processing the daily consumptions. I do treat myself at times tho' (ie ice-cream once whilst on holiday) but that is what it is.
Very pleased with your reply...thanks. "Food for thought" as they say. GERD has not reared it's ugly head as yet...thus I still do the lemon and water and citrus fruits. Will see at next dental appt if the tooth enamel is being affected at all. Pharmacist friend told me to go to Whole Foods store to purchase my milk thistle seed. I bought GAIA brand...3 capsules = 450 mg. I take as recommended on label....after evening meal. On Ursoliol 300 mg 3 times a day. I had original rx for Actigall...but not available. Has the Urso 300 mg been recalled ? Also take Levothyroxine in AM for my thyroid ( diagnosed with Graves Disease ). Toss in a couple fiber caps and calcium with vit D ( located in Mass....less sun exposure in the winter months ). Used to take Hydrochlorothiazide for BP...but have dcd that for now. BP seems OK. MD friend told me he saw no harm in taking milk thistle seed. I do mix my turmeric with honey....easier to get down. I am paying more attention to my diet, but GI MD told me no diet will help as it is autoimmune...body attacking itself. I also read on my hormone label that it may effect liver. ( I am age 68 in Dec ). Then there is exercise....I MUST be better about that part ! I am hoping the extra things we can find to do WILL help us along this journey.
I asked my consultant at the hospital about taking milk thistle. He said there was no proof that it is beneficial for PBC. However some people think it is good for them and feel there is an improvement so it is an individual decision.
oops...going....not gong !! Brain fog !!!
Hello I am taking for almost a year and seemed to help with my itchiness and tiredness when I stopped the tiredness was dreadful , it is expensive so if you can afford why not trying take care
Hiya,
There's no harm in the lemon/water as it flushes out the toxins out of the body. I think following a healthy diet would be beneficial to us all whether we have Pbc or not.
Good luck x
Hi Chippy45
I asked to be referred to a dietician when my blood test results showed that my cholesterol was climbing. I have been on the diet now for about 6 months, not only has my cholesterol level dramatically reduced, I have found that it has helped with my fatigue (due to PBC) and bouts of nausea. The diet is low fat and to eat little and often. May be worth thinking about, however we all respond in different ways.
Hi Chippy45, I have had PBC for 18yrs. I was diagnosed at stage 3, I started with Actigall and then was switched to Urso. I was told I would probably need a transplant in 10-20 years, perhaps sooner. About 16yrs ago I started taking milk thistle, a friend told me her dad had Hepatitis C and it actually helped him get better! I had never heard of it so I did some research, it has been known for years that it helps rejuvenate the liver. It is especially recommended for alcoholics to try and help their liver. My doctor was always ok with it, so for about the next 15yrs I had been pretty much ok, blood levels up and down, nothing to dramatic, tired, itchy but good. The past couple years I entered stage 4 which is the end stage, I had a few things happen all at once, kinda woke me up, but I still take the milk thistle along with my other meds and have blood draws every 3months. I have alot more side effects, but nothing I can't live with. So with the grace of God and milk thistle, I believe I am very fortunate. Lemon water does help clear out toxins, they say everyone should have a glass or cup(hot) each morning. And no matter what, I am sure 90% of the world would be better off with a healthier diet:)...........thoughts and prayers, cyndy
That's what I like to hear....a good luck story !! hugs...and thanks for reply.
I too have had autoimmune issues my whole life virtually. Systemic Scleroderma, Sjogren's Syndrome, PBC and Rheumatic Heart Disease for good measure!
A few years ago I was moderately itchy all the time and put it down to Sclero mostly so changed my eating habits to avoid any artificial preservatives or flavours of any sort also had to change to decaf. coffee to help my heart and I have to say that my itchiness is much less. I don't really have any symptoms from PBC that I can notice even though I have some cirrhosis and portal hypertension, except for overwhelming fatigue. Fatigue is a big issue in Scero and Sjogren's as well as PBC so I just have to accept it and do what I can not to get too exhausted. I am a couple of years older than you Chippy and will be 70 in Feb. so can't really complain about anything.
My Gastroenterologist hasn't asked specifics of which supplements I am taking and has only said 'keep on doing what you are doing and you can stay off of Urso / Prednizone until your blood counts rise. I was dx'd several months ago (PBC/AIH overlap) based on high AMA, elevated LFTs, high IGM, IGG and a liver biopsy. I switched to a gluten free diet, drink tons of water, limit sugar and salt, take daily milk thistle, tumeric (for joint pain) Vit D (severly deficient) a multivitamon, calcium, biotin, magnesium, and to date, my LFTS have dropped into a normal range and have held steady. Each of us is quite different so you may need to try what works best for you.
