My Mom she is 61 yrs and she recently got diagnosed with PBC. Doctor said she having this from last 15 yrs approximately.
She had water retention issues which got subsided with the medicines prescribed by the doctor Mr. Praveen Mathews in Bangalore INDIA.
M went through all the blogs but still very worried about my mom health related to PBC.
Wanted to know her life span, as doctor told scientifically it's only months that a patient survive under this condition. He has recommended to do LFT after 20 days.
I read that many of the patients having similar conditions still living healthy on medications for years. Will my mom also prolong this condition and live safely.
What medicines would help her regain her life span? Currently she is on TABS:
1. Lasilactone 50
2. Rifagut 550
3. Becozinc
4 Udiliv 300
5. Looz Syrup.
I read many taking Ursofalk and milk thistle. How does these medicines help under such conditions of PBC.
Request to kindly help clear my thoughts as I don't want to lose my mom.
Written by
VickyVirdi
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hmm....I cannot get a quick overview of what "water retention" really is but looks like a should not be a such a serious condition that requires all those medication you mentioned above.
If she REALLY has a PBC then I'm afraid for whatever reasons your moms is taking those medications above she should start drop one by one....for the better of her Liver!
And start Ursofalk....If she is still living despite all those medicines she probably has no cirrhosis...that means she should have plenty of time
I'm sorry but I have to respectfully disagree. If a doctor has prescribed medication then it should not be stopped under any circumstances without, minimally, a discussion with a doctor. Only doctors can give that advice and only after a full medical examination has taken place.
I can understand why you're worried, but perhaps with a bit more information you and your Mom can get some reassurance, or at least understand her current position and treatment options better.
Firstly, many people with PBC can and do live a normal lifespan. I'm 61 too and I've had PBC for 15 yrs, but I'm still well. If you become a member (free) of the PBC Foundation that hosts this forum, you will have access to all the information you need about PBC, and you could ask them specific questions too.
You will find knowledgeable people (although most not medically trained) on this forum too, and lots of support. Perhaps we'll be able to help more if you explain how your Mom was diagnosed, and how her liver function is at the moment, which you would know from blood tests.
You need to have confidence that Mom's doctor understands PBC well. If you have doubts, I would seek someone who specialises in, and is connected with current practice and treatment regarding PBC, even if this means travelling.
Ursofalk is a brand name for the drug Ursodeoxycholic Acid that's given as first line of treatment. Not everyone responds to it well, but there are other options in that case.
More people on this forum will come along to provide advice and support. In the meantime, your Mom is very lucky to have such a caring daughter and I hope things go well for you both.
I agree with the others. Best to check with doctors about medication. If you google Udiliv it is a brand make of urso so looks like they've started treatment. I hope that your mum responds well and that you find the answers your looking for.
it is normal to feel some despair when one becomes aware that one has PBC, given the lack of knowledge that still exists about it, even among the medical class. I agree with most of what Skypony said, especially since you can find all the necessary PBC information on PCB Foundation website (pbcfoundation.org.uk/).
I have an academic background in biological sciences, and when I got the brick in my head with the news of having PBC, I did a bibliographical research on the subject and wrote to several researchers working on it. But despite all the scientific knowledge I digested, it was on that site that I found the comfort I needed to move on.
I am 55 years old. For 20 years I have had high liver function tests, but the doctors have never really cared much. I was diagnosed 4 years ago and started taking 1 g daily of Ursodeoxycholic acid. The analyzes now have normal values and I only take 750 mg per day. I am a very active person, although I also feel the side effects of PBC, such as moments of extreme tiredness, pruritus and dry eyes. But in spite of everything (and I have other health problems) I have been able to relativize PBC and, apart from taking the daily medication, I almost do not even remember having this.
Summing up, read the available information about PCB on that website, pass it on to your mother and try to relax both. The initial phase of discovery is complicated (by the fear and anguish associated with it) but your mother will certainly be able to live with it, with a good quality of life, if well and properly medicated.
Hello Vicky, it is lovely that you care about your mother. I am just past my 20th year of Primary Biliary Cirrohsis. I was given just 5yrs to live 20yrs ago. I was diagnosed as stage 4 Cirrohsis. (end stage).
Please do not drop any medication without checking with another Dr. I am on Ursofalk and I take a high strength fish oil that stopped all itching.
Every person is different. I believe in natural healing such as meditation and chakra clearing visualising.
Having a positive nature is vital to any healing. I believe if you keep positive and keep taking the medication and being at peace with life, your mother can help heal herself with a balance of holistic and medical help. She could live a long life.
Hi Vicky! I'm so--sorry I'm late answering your email. I have taken Milk Thistle with yellow dock and silymarin for 20 years. All I know is it works very well for me! I don't take all the meds. my Dr. prescribes as they harm my liver. If I was you I would go to a specialist but yes the Milk Thistle is wonderful and will have no reactions with any meds she takes. Has kept my liver in much better condition. I have a friend who has bone cancer and cirroshis and she has been taking milk thistle and turmeric with black pepper and baking soda (1/2 teaspoon) mixed in water for 3 years. 4 Years ago they said she only had 6 months to live! She is 73 and has more energy than I do. She also walks every day. I will be praying for you and you Mom!! God heals !!! Don't let fear overcome faith. I am 62 and went thru harvoni treatment and finished April 23rd 2017. Still working on the damage this medicine did. I am hopeful and slowly getting my energy back. God Bless you Dear! Much Love and Many prayers!!!!!!
My sincere thanks to all who took out time and helped me a lot guiding me on my mom's chronic health ailment PBC.
She is responding well to the prescribed medicines. In my next follow up visit I will check on the medicines that most of you take.
She has been advised by most of the doctors I consulted here in India to change the diet plan. Only Fruits, veggies and liquids. No outside food. No salt and spicy food. Homemade food only.
I have one query, if anyone could help me out. I heard Ayurvedic herbs and medicines along with the current prescribed medicines works well in such cases. Has anyone tried and experienced any positive developments.
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