Diagnosed with Primary Biliary Cirrhosis 5 yrs ago. Itching constantly

Posted by Tiffany @tiffanyandrews, Jan 11, 2015

I was diagnosed with Primary Biliary Cirrhosis 5 yrs ago i have been going downhill lately I itch constantly and can’t get enough sleep im just so tired. Well my doctor told i wouldn’t be able to get a transplant from a living donor which will make my time on the transplant listwhen that time comes even longer does anyone know if this is true or should I start getting my family tested for compatability

@sandykb

Tiffany I know the itch can be deep so topical might not help. I have an amazing dr who thinks outside box & put me on Atacand which softens blood vessels making lungs (w/fibrosis so stiffening + is THIS essential issue? w/PBC?) more efficient to move. Ask if could help? Remember Viagra was orig for Pulmonary Hypertension so they hv multiple uses sometimes. Much hope & blessings sent yr way!!!

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I wish I could help I am going to need a liver but it’s a waste for me I
also have chronic pancreatitis eventually will be malignant, God BLESS you
Good Luck and go to liver foundation sight on FB what EVER. You will learn
a thing or 2 lol Deena

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had 9ins. of bowl removed almost year ago.devitalitis.went to hospital today.having lots of pain from big hemmroid .sick feverish sick eating liquids and now have dirrera with this .left with having to have a follow up .Told I have a collaped bowl from cat scan tried to find info on that and cant Im in so much pain any help appreted.thanks

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Not sure exactly if itching is cause from liver situation. When were you diagnosed. Have you been prescribed all medications inpatient treatment or at the Emergency room? Are you connected to an Inetwork MD? When was your last check UPS? Lab work, any flu shots that your MD may need to have made aware?

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@rarawlinson

had 9ins. of bowl removed almost year ago.devitalitis.went to hospital today.having lots of pain from big hemmroid .sick feverish sick eating liquids and now have dirrera with this .left with having to have a follow up .Told I have a collaped bowl from cat scan tried to find info on that and cant Im in so much pain any help appreted.thanks

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To: Rarawlinson.Now that you were advised of such a way to alleviate symptoms, you have a poss collapsed lung when you received your CAT scans? I’m sure you were able to view these pictures, right?

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@sandykb

Tiffany I know the itch can be deep so topical might not help. I have an amazing dr who thinks outside box & put me on Atacand which softens blood vessels making lungs (w/fibrosis so stiffening + is THIS essential issue? w/PBC?) more efficient to move. Ask if could help? Remember Viagra was orig for Pulmonary Hypertension so they hv multiple uses sometimes. Much hope & blessings sent yr way!!!

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TO sandyhurricanegirl, I almost feel as if sleep aids are natural that’s better all the way around , correct?

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@sandykb

Tiffany I know the itch can be deep so topical might not help. I have an amazing dr who thinks outside box & put me on Atacand which softens blood vessels making lungs (w/fibrosis so stiffening + is THIS essential issue? w/PBC?) more efficient to move. Ask if could help? Remember Viagra was orig for Pulmonary Hypertension so they hv multiple uses sometimes. Much hope & blessings sent yr way!!!

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BTW what’s TORRani, Tiffany?

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@marieantoinette

Not sure exactly if itching is cause from liver situation. When were you diagnosed. Have you been prescribed all medications inpatient treatment or at the Emergency room? Are you connected to an Inetwork MD? When was your last check UPS? Lab work, any flu shots that your MD may need to have made aware?

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Itching is indeed caused by the liver,it like someone on pain meds that
itch there nose, the liver is having a difficult time breaking down the
meds,Deena

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@rosemarya

Tiffany, I am happy that you will have a liver appointment later this month. I feel that a GI or a liver specialist will be able to answer your questions. Sometimes liver diseases can be difficult to diagnose accurately by someone without the highly specific training. I know this happened to me (primary care-GI-GI/liver specialty-liver transplant dept). I did learn that even if 2 people have the same disease, they can exhibit different symptoms, and each needs individualized treatment. It can be confusing and frustrating at times. Take a list of your questions and take someone with you to your appointment. You may need further testing to figure what is going on.
I suggest that you look up topics like liver diseases/liver transplant at respected resources like Mayo, Transplant living, WebMD, etc to learn what you can expect. For almost 10 years, I had well-meaning friends and relatives trying to ‘cure’ me. I chose to listen to my doctors instead, and I followed their instructions exactly. I am 66 and I received my transplant in 2009. I am in better health and more active than many people half my age!
I’m hoping for the best for you.
Rosemary

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Holistic and diet and the Lord for me. I stopped taking almost all meds and will stop all of them within two years. Good Luck. Tom

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@rosemarya

Tiffany, I am happy that you will have a liver appointment later this month. I feel that a GI or a liver specialist will be able to answer your questions. Sometimes liver diseases can be difficult to diagnose accurately by someone without the highly specific training. I know this happened to me (primary care-GI-GI/liver specialty-liver transplant dept). I did learn that even if 2 people have the same disease, they can exhibit different symptoms, and each needs individualized treatment. It can be confusing and frustrating at times. Take a list of your questions and take someone with you to your appointment. You may need further testing to figure what is going on.
I suggest that you look up topics like liver diseases/liver transplant at respected resources like Mayo, Transplant living, WebMD, etc to learn what you can expect. For almost 10 years, I had well-meaning friends and relatives trying to ‘cure’ me. I chose to listen to my doctors instead, and I followed their instructions exactly. I am 66 and I received my transplant in 2009. I am in better health and more active than many people half my age!
I’m hoping for the best for you.
Rosemary

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Tom, I am with you,No more testing for me .Took Drs 6 years to realize I
had a stone in my pancreas and did permanent damage to bile ducts and
pancreas, also my liver enzymes are out of control. God Bless you I have
studied eastern and western medicine,I am a firm believer of holistic
approach Also includes yoga or tai chi,meditation and diet . What is your
diagnosis? Maybe we could help one another,Just moved need to find a new
holistic store ,when I was taken all the holistic meds I did in fact have
energy and felt much better keep in touch I can give you my email have
holistic books with diet and supplements be glad to help might go back to
the clinic @ med school I attended Deena

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@rosemarya

Tiffany, I am happy that you will have a liver appointment later this month. I feel that a GI or a liver specialist will be able to answer your questions. Sometimes liver diseases can be difficult to diagnose accurately by someone without the highly specific training. I know this happened to me (primary care-GI-GI/liver specialty-liver transplant dept). I did learn that even if 2 people have the same disease, they can exhibit different symptoms, and each needs individualized treatment. It can be confusing and frustrating at times. Take a list of your questions and take someone with you to your appointment. You may need further testing to figure what is going on.
I suggest that you look up topics like liver diseases/liver transplant at respected resources like Mayo, Transplant living, WebMD, etc to learn what you can expect. For almost 10 years, I had well-meaning friends and relatives trying to ‘cure’ me. I chose to listen to my doctors instead, and I followed their instructions exactly. I am 66 and I received my transplant in 2009. I am in better health and more active than many people half my age!
I’m hoping for the best for you.
Rosemary

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I can go to bed with a smile so hapoy you had a transplant Do you feel well after the transplant how about today ? No more fatique I will read it tomorrow bless you and your new life !!! Dee

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Is anyone familiar with Severe Panreatic Atrophy? I can not seem to get answers from Doctor.

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Hello @shirleys,

Welcome to Connect;we’re glad you’ve joined us.

According to Mayo Clinic, “Pancreatic atrophy is the irreversible degeneration of the pancreas that is often associated with chronic pancreatitis. This condition involves the inflammation of the pancreas.” Here are some more details about this condition and the ongoing research at Mayo Clinic:
http://mayocl.in/2t2w7WT
You may also wish to view this conversation, where a few members have posted about chronic pancreatitis:
Diagnosed with diabetes after acute pancreatic attack; now chronic http://mayocl.in/2t2rXOK

I’m tagging fellow members @bethmcch @twinskl @freemary @gman007 @pikappwife and @rosemarya, all of whom have discussed acute or chronic pancreatitis, and I sincerely hope they will share their experiences.

@shirleys, we look forward to getting to know you; what symptoms are you experiencing?

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Tiffany, I am not quite sure why I was tagged here as I do not have any liver issues and can not speak to those. The only part of your story that I can speak to is chronic disease. I know it has to be beyond frustrating to not see the docs you think would be of most help. I will send prayers and as many positive thoughts your way as possible and hope you can find the the right direction for healing. Gary

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Thank you so much for your quick response, @gman007. I think you were tagged as you mentioned being diagnosed with “Acute and then chronic pancreatitis,” in this Digestive Health group discussion: http://mayocl.in/2syJ4WJ

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@kanaazpereira

Hello @shirleys,

Welcome to Connect;we’re glad you’ve joined us.

According to Mayo Clinic, “Pancreatic atrophy is the irreversible degeneration of the pancreas that is often associated with chronic pancreatitis. This condition involves the inflammation of the pancreas.” Here are some more details about this condition and the ongoing research at Mayo Clinic:
http://mayocl.in/2t2w7WT
You may also wish to view this conversation, where a few members have posted about chronic pancreatitis:
Diagnosed with diabetes after acute pancreatic attack; now chronic http://mayocl.in/2t2rXOK

I’m tagging fellow members @bethmcch @twinskl @freemary @gman007 @pikappwife and @rosemarya, all of whom have discussed acute or chronic pancreatitis, and I sincerely hope they will share their experiences.

@shirleys, we look forward to getting to know you; what symptoms are you experiencing?

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Thank you!

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