Hi. I have just been diagnosed with primary biliary cirrhosis due to presence of sp100 in my blood. Very scared. Can anyone tell me there experience of it please.
Yes have had it for 14 plus years and once i started my meds the progression stoped in its tracks.
If you take your meds you will have many many years and most die of other causes of old age not the pbc.
You may need to have a biopsy but that is a very simple procedure. i see a specialist 6 monthly and do three monthly blood tests and an anual ultra sound. Biannual bone density scans.
Avoid soy products as they are too hard for the liver to process.
Dont be scared. Its not too bad. You maty feel itchy and i get a fair bit of joint tendon pain as well.
B12 and calcium will need to be monitored as they are processed in liver.
If you are over weight consider loosing weight which will help the liver.
Best of luck.
Wilma.
Thank you so much for your reply Wilma. I do have the itchy skin. This was how it was picked up... by dermatology blood tests. Cab I ask what stage your at and what medication your on and how they confirmed your diagnoses please. Clare
hi clare i have also just been diagnosed with pbc i am only 24 years old and they have told me i am in the middle stages, i will have to have a transplant in the future, if u dont mind me asking how old are you? and if the doctors have told u anything, i get all the symptoms, i have been trying to join different foundations to get abit of support as no1 i no doesnt no anything about the illness, do u find that?? x
Hi Clare. The main medication is Ursofalk 250 mg. it get prescribed according to weight. I take 6 per day.
I have been told i am stage two. There are 4 stages.
Diagnosis was by blood tests and biopsies of yhe liver.
The first was via the jugular vein due to being too over weight. Since then i have had two or three more when i had laparoscopic surgeries for banding and later a gastric bypass.
Since i have been on my meds i have progressed one stage in 14 plus years. Stacey is right as the only cure is a new liver but in saying that i live quite well other than the fact i cannot drink alcohol.
The ursofalk settled most of my itchy problems but the main thing i was diagnosed for was the pain i was in in my joints etc does still bother me a fair bit.
As i am allergic to most pain relievers and have been warned off panadol i am struggling.
Not sure if other PBC sufferes have this pain and would like to hear how other people cope with it.
Wilma.
Hi Clare, I am 49 and I have been diagnosed with pbc 7 years ago when I finally got a family Dr. For 7years prior I had been told repeatedly that I
had IBS and depression at the walk in clinics. (Canada has a Dr shortage, especially in BC where I am living.) In 2007 I was fortunate to find a Brit Dr (I am not Canadian), who listened to me and actually did blood work. He was very sorry to tell me I had Grave's disease and liver disease. My liver function #'s were between 280-590. I have been on ursodiol (bile salts) and the #'s are between 30-60. The biopsy confirmed that it was pbc. I wish I could say that I am doing well, but I have a few autoimmune diseases. I look great; I lost 2st in August but I am pretty much bedridden. I am worried about new symptoms: spider veins on my face, tremors and a
lot of upper rt quad pain. That and I am awake all night 7 days a week. I just had my methadone increased for pain but since BC switched to methadose, it wears off faster even though it is a concentrate. I have never
been in a group and I didn't plan on sharing so much but I am completely
without support. Try all the common sense things that do help and good luck with your health Clare.
PS Pro and pre- biotics do help, so does Voltaren emulgel (diclofinac topical cream) is good for the joint pain.If it is not available, the suppository
form of diclofinac works best when I have cyclical vomiting. I only use
them about once a month. Family is so important for support so educate them with you. Everyone needs support and understanding. It will be ok.
The sleep problem affects me terribly too and my husband recently purchased some CBD oil for me to use at night. I went for about 10 years with little sleep but now i am allergic to many meds find there is little else to help.
Sorry to hear you are bed ridden. Can i ask you why? Some days i just dont want to get off my bed because i know when i do i will be in more pain.
Hi Stacey
I am sorry to hear you have also just been diagnosed. ...... and so young. I am 44. They have told me have this terrible thing but yet to put me on medication. I feel I have been passed pillar to post through sheer stupidly and lack of knowledge. I originally went to the doctors with excessive fatigue a couple of years ago. Found to be low on iron and then a heart murmur and then referred to rheumatology. Then came up in a really itchy rash so referred to dermatology. Did not wait for appointment as was not sleeping and ripping my body apart do took myself of to a and e. Saw a dermatologist who did blood tests and found the PBC. Now waiting to see a hepatologist but they don't appear in any great hurry!!! Anyway I accessed my noted at my GP Surgery yesterday and found four blood tests going back two and a half years with increased levels of things highlighting liver disease and mentions of PBC on the phlebotomy notes but never followed up by hospital or GP. Suffice to say I am very angry and will be putting in a complain as my understanding is the quicker your on medication the better.
I have found a good forum and information website called healthunlocked . com. Worth looking at
Oh dear. Sounds like you are having it really rough...I am so sorry. What stage PBC are you at and are all your side effects due to PBC or graves disease? Has the Usodiol medication helped your liver function then? .....I don't understand the numbers your mentioning. Are you bed bound due to joint pain. Hoping you have a good day today and less pain. X
Hello Wilma. Sorry for the delay in my reply, I'm having problems with my charger. I am in pain from abdominal adhesions that are attached to my liver. I find that it is severely aggravated by bending, squatting and sitting. Standing and lying down reduce the pain to colicky. I also need to keep a bucket next to my bedside because for almost 10 years I have been woken up by needing to vomit. The last time that I went out to lunch with my mum, (4years ago) I had to discreetly look under the table and use one of my handy airsick bags and walk through the restaurant to the ladies room. Even though my mum tried to reassure me that no one noticed I was mortified and decided that going out was a waste of money for me. Even going to the Dr's appointment, I need to carry a sick bag. Unfortunately the vomiting doesn't stop sometimes and the cyclical vomiting can last for more than 8 hours and the complications set in, dehydration, shock, and even chest pain from the convulsing. I have had a lot of medical problems and a few things removed or destroyed by radiation treatment, like my thyroid. I am a red head and the problems are real; waking up during anesthesia, increased tolerance of pain meds and anesthesia, blood problems like anemia and clotting. When I had my tonsils out, I was in hospital for 8 days. I also had my 1st operation @ 10 for a urethal repair. ( No one asked questions about sexual abus
Sorry, my tremors cause me to hit the wrong button all the time. I will just finish up with just a few of the issues that I am struggling with; I had meningitis in 1987 and due to a CSF leak and delay in diagnosis of the leak I spent more than 3 months in hospital, I was given an accidental overdose after the repair and suffered an acute dystonic reaction, CNS complications, PTSD and postpartum depression along with becoming bipolar 16 years ago, I tested positive for cmv (cytomegalovirus)& mono after my last vacation in 1997(Mexico), immediately followed by the diagnosis of systemic lupus erythematosis. Now I have multiple organ involvement, IBS-c , interstitial cystitis (bladder lining destroyed), of course I have the skin problems of rashes and itching. I had to go by ambulance 3 times this year, and twice the er Dr recommended our famous BC Bud for the nausea and vomiting. Unfortunately the meds like domperidone and metacloprimide that I had been taking to increase gastric emptying and to reduce vomiting have a nasty side effect of involuntary muscle movement of the face. Just another reason to stay home. I did not intend to write so much but unfortunately the laundry list above is just part of my problem. I know that I have probably given TMI but I am being honest. I hope that I was able to answer your question about being bedridden. I am trying to stay away from the hospital and I am speaking with my gp next appointment about the treatment for the adhesions since my specialist finally felt them and diagnosed the problem I knew that I had. Also (besides memory problems) I am unable to be at a comfortable temperature and spend day and night dressing and undressing, boiling then shivering. Good luck with your health Wilma and thanks for the interest. Bless you. X
Hi Clare, you sound like a really caring lady and I am sorry for your diagnosis of PBC. I was stage 1 grade 2 in 2008 but the follow up biopsy was not done in 2011 or since. My new GP looked into it and my specialist told him that she did not want to touch me with a 10' pole after the incident that I woke up during a procedure, so she is keeping a close eye on my liver function numbers and I am going to have to ask for a second opinion. The numbers were very high before the ursodiol was prescribed but did a good job of bringing them close to normal but my last test showed an increase in a few of them. I was feeling worse than the last appointment so I was expecting something to show up. The sudden weight loss and the spider veins appearing around my mouth and lower cheeks and chest, along with the itching and swollen belly has me wanting to know what stage I am at now. The joint pain from the lupus is debilitating and the soft tissue pain from the fibromyalgia can be also, but the main thing is the abdominal adhesions that are sticking my liver to my abdominal wall make movement painful to the point where taking a deep breath is something that I try to avoid. I am scared of the progression but I know that I had the disease years before I was removeded. I had my gallbladder removed by my mum's Dr's referral after listening to my symptoms back in 2007. Unfortunately it was completely normal and not necessary. It has added to the adhesions. Sorry, I must end here as my eyes are going out of focus, Grave's I think. I have not done my Christmas cards because my eyes won't cooperate, and I have not gone to the shop's myself for a few years. (I write list's and I order online). I hope you have a good holiday season and good luck with your health Clare. This site is one of the best I have come across and I firmly believe that you have to do research on the health issues that you are dealing with. Bless you. X
Hi Mojoanne. I apologise for asking and opening up your past wounds. I am thoughtless sometimes. I am so sorry for your pain and sincerely hope i did not add to them. I can't imagine living as you do.
I do know we have much in common though. The intollerance to pain meds, the wakefulness during surgery and the sexusl abuse. I too have had too many abdominal and ofher surgeries and am currently facing two more.
Like i shared on fb i feel life has handed me a lemon and i am so sick of pain too.
Hope your adhesions can be released and that you will be more comfortable soon.
Thank you for taking the time to tell me your story.
Wilma.
Hi Clare ,e tha
i am 39 years old I was poorly last year I went the doctors and had lots of blood tests .they said thAt I had viral infection to the liver which was also it was inflammation people have said to me that I looked pasty in the face and I am always feeling tired . The specialist at the hospital told me that I might have something like pbc they will be keeping an eye on me each year .
I have PBC. I just turned 23 and they said it usually happens to people in their 30's and up. My doctor says my case is particularly difficult to handle since my body's liver enzyme count goes into dangerous levels over 1,000 and comes back down to normal levels and they can't explain why. Last year my enzymes were over 1,000 where I was sent to the ER 4 times in 1 week because I couldn't stop vomitting and the pain was unbareable. The ER would just send me home after nausea medicine and pain killers were injected since my tests were showing negatives on all the tests they ran.
After my follow up from my ER visits is when they said were afraid that I wasn't going to make it because how sick I got. I finally tested positive for the screening test after a really rough year that had me go temporarily blind (I also have Chronic open-angle glaucoma which is what I thought caused my blindess at the time, but wasn't), a doctor acuse me of being psychosomatic because he couldn't explain what was going on, countless ER visits with top drs in the country working on me (even a lumbar puncture was performed on me which had negative results) and an unexpected miscarriage my boyfriend and I were unaware of...no answers were being found until finally a small town doctor just miles away took 7 tubes of blood and came back saying my screening test came back positive.
The doctor had me retested in my town to confirm my results, but they aren't giving me the results of the test. The nurses turned me away from a walk-in because I didn't have an appointment set-up and the next appointment wouldn't be available for months when they know this condition is life-threatening without treatment and it's important for me to get these results to get treatment. So, I still don't have those results and it's been 4 months since my last visit. I had to become vegetarian because of this disease and my body rejects a lot of food.
hello i am 24 and was diagnosed with pbc in july, i hav been told i will need a transplant and im not responding to the urso, my lfts were raised over a 1000 aswell but managed get them down to 700, i get all the symptoms but just hav to get on with it, its hard but hav no choice, it is really rare for people our age to get this illness, i hav got to go on clinical trials as im not responding, hope u feel better soon
I'm sorry you have this too, Stacey. I guess we're the "lucky few" who get to have it at our age. I hope you feel better soon too
Hi Stacey, so sorry to hear this. I was diagnosed in 2007 at the age of 46 stage 1 with no symptoms. I had a blood test due to feeling dizzy. I had raised liver enzymes from 2003, but my GP said there was nothing to worry about and I did not get followed up. I was put on Ursogal 900mgs followed up yearly with a blood test. My liver enzymes have been stable slightly above normal. I have been going to the gym, got on with my life with no symptoms. Unfortunately, I developed some intense itching earlier this year and I was taken off the Urso and all my itching disappeared after 1 week, but my liver enzymes went up quite a bit. So was put back on the Urso and the itching returned with a vengence. I have started Questran which has helped. I tried a different brand but still itching. I have been told by the hepatologist that people can become sensitive after many years. I also spoke with the drug company and they said they have heard of this but not common. My fibroscan done 2 months ago was 5.9. Just wondering if anyone else has had this problem. I do hope that you feel better.
Hello im sorry to bother you I have pbc and im so panicing myself so much I was diagnosed 1 year ago im terrified I keep reading things on the net and on one it said your life expectancy is 7 to 15 years im 14 stone im trying hard to loose weight iv stopped drinking and I use a electric cig can you talk to me about it please im so scared thanks carol x
My sister who is 72 was just diagnosed with that last Friday. She has been put on a medicine to stop the progression of the disease.