PBC (primary biliary cirrhosis)

I have both the above diseases, PBC (primary biliary cirrhosis and autoimmune hepatitis, sjogrens, multinodular goiter and
rhumatoid authoritis.  A "normal" day for me is a lot of rest, and a lot of pain.  But every so often, I have waves of muscular pain that happen only at night.  I run a temp from 100 - 102, my muscles hurt so badly that it hurts to blink my eyes, take a breathe, or move.  I have tried to explain this to my doc, to get something to ease the pain during the time period (from a few days to a few weeks) but she never sees me in this condition, and is not helpful.  Anyone have any suggestions what is happening, how to explain this to the doctor, and how to get some help in this area?  I would so appreciate it.  I am currently taking actigal for the PBC, nothing for the hepatitis, and naproxen for the joint pain (this helps take about 30 percent of the pain in my wrists and ankles away, and climara (hormone - had a hystorectomy when I was 21)  I am only 47, and 7 years ago was a very active woman, who has turned into a couch potato...who suffers from fatigue everyday.  Thanks for any help you can offer.

[buckeyegirlie]

I am going thru a very similar situation and my saving grace as my doctor stands before me un helpful and in disbelieve is a daily journal I keep.  I also have somebody go with me to help them understand my pain and fatigue.  I have found nothing to help with the fatigue or pain.  My biggest pain in the back side as I am sitting there like you in pain and tired is the dang itching.  If they could stop that I would be at least a litlle better off.  I am trying herbal teas and they helped a little  bit so far but not enough for me to have a normal day like I used to.  We have to be careful what we take for pain because most things can elevate our liver enzymes and make things worse for us in the long run.  

Tori

[merryBe]

I would think some of your muscle pain could be alleviated if you could be given something for fever reduction as well as hydration and a mild muscle relaxant.
Naproxen is not a liver friendly NSAID.

I'm so sorry to hear of your suffering.
Have you though new doctor?
Or have you considered even getting checked into emergency and/or get them to admit you, so they can observe you for a couple days. Sometimes seeing the temps and seeing you writhe will get the nurses to get the docs off their proberbial butzs.

it sounds like you are both under and incorrectly being medicated. I'm not a doc, but have been in same boat in bed and know it's not fun.......but getting taken seriously seems to be a never ending battle. Keep trying.
HAve them check your IGF-1 level. If your pituitary is not working all this autoimmune stuff will emerge. Treating just the symptoms and not the main cause will not alleviate your suffering.
Mary.

[1in10]

Hi,
  I have similar issues.  What has helped me the most is marijuana.  I have only had the opportunity to use it a little bit as it is illegal wihere I currently live and have no sources.  I did get a little bit from a friend and used it sparely when I was at my worst.  It helped with the pain (joint and muscle) dramatically.  I also felt more energetic.  I don't know if this was due to pain alleviation or the marijuana itself -- I really didn't care.  

  I will be moving to Oregon soon where I am hoping that I will be eligible for the medical marijuana program.   I should also note that marijuana may increase the risk of fatty liver;  At this point the way I feel, I can live with the risk
Rich

[Rnoble13]

Dear Friends,

Hate of learning in regards to your battles with this damn horrible disease, which most often like my severe and rare liver illness has a host of worries as if the first wasn't bad enough huh?  I am unsure about you all, and probably because I've not read all I should have, however I'm a sould who feels deeply for others and their well being, so sometimes I jump the gun if you will...  If there is ever one damn thing I can hopefully, possibly chat with you on, I'd be beyond honored dear friend(s)!

I myself was diagnosed with a disease that goes hand in hand with most of you and your PBC diagnoses...  I was diagnosed with something in the way of liver ailments, which of course if very fatal like you all know very well, without a transplant which we all hope and pray for huh!  I actually just thought of an idead for us all as seperated and unorganized to be heard for once and recieve great medical care as a pregnant woman or anyone else who are usually treated differently or better; for instance when I tell half the hospital staff what I'm in for, when most just really don't understand it and this especially goes towards the "hospitals, doctors, nurses, assistant nurses and whoever else out there?  They need to be aware of how scary, real, that we know 99.9 percent of the time when something is off, meaning whey need to do an ERCP (Scope Into The Liver and Surgery If Needed?"  If anyone has any ideas here on how we can cet this message out: of this abhorrently "no fun at all and god forbid intentional fun or act let alone!"  I have an idea for campaigning issues of a simple nature, to move to bigger and better things and perhaps a cure for PBC, or my very similar disease PSC Primary Sclerosing Cholangitis...  How about an idea for T-shirts for a simple yet powerful message with free advertisment (ha, ha, ha) , which of course all of which that is desperately needed as none of us should be suffering the way nor god forbid "dying, nobody, "nobody" needs to die from  PBC, nor PSC or any liver disease at all...  Anyone jiving with my Tshirt idea, as almost nobody is even aware, not even in the least as to what we suffer from or how serious it is...  I've had people respond to me, even mostly close and friends, as if I'm complaining over a dumb headace, cold or something minisule, what they don't know is what we go through my freind(s)!  I wish all of you the very, very best, especially with your intestinal issues, including the poor liver that we are talking of here as our main, main focus; so again take care, feel very free to write with any caimpaigning or commercials we could do together as a whole and group banding together?  I WISH ALL of YOU THE ULTIMATE BEST, in HEALTH FIRSTLY and SECONDLY IN HELPING BRAINSTORM IDEAS DEAR Friends...

Much Peace and Love,
Rich N.

[chrisoctober04]

Hello,

Hello, I am a caretaker for this lady who has a hepatis c,cirrosis (cirrhosis) and pancreatis (pancreatitis) and needs some information how to help her,she is in so much pain and vomiting lately, she has a bowel problem and I am so woried about her.I called her hep doctor and asked if it is normal for her to have all these problem and instead of giving me an answer he said call 911.She had chemo before but her hepatis c has  come back and  now she has a skin sores all over her arms.I am not familiar of this kind of disease and need to learn so I can help her.I urge her to call her doctor and go back to chemo.She said chemo made her really sick,I don't know what else to do I am her caretaker for 9 months now and I felt I need to do something to her,My question is vomiting,sweating,bowel problem and stomach ache is a hepatis c symptoms?.please help.

[donnieraye]

I believe you need to start a new thread to help get a quick response.  Just go to POST A QUESTION and begin a new thread.  I'm sure someone with knowledge will help you.

[CS0271]

I was diagnosed with PBC in 2007. I've had no symptoms. I had a GI that I really trusted, but due to insurance I had to go to a new one.  Yesterday's visit with the new doctor was like being told all over again I'm going to die in 20 years!.   I'm 38 years old for gods sake.    He wants to do all kinds of testing.. do a scope down my throat to see if he needs to band swollen veins/vessels?    What the heck is that about?  

[Bill1954]

I’m not well versed on PBC, but advanced liver disease can cause a condition known as portal hypertension; this can be responsible for the veins in your esophagus to become enlarged, and in some cases, burst. The ‘scope down the throat’ is a relatively painless procedure, and they can band any of these varicies that are found in advance, avoiding a very dangerous situation.

Most of us in here are dealing with Hep C; so aren’t very familiar with primary biliary cirrhosis.

Best to you,

Bill