I am new to this but feel very much alone
I was diagnoised with pbc in 2011 and with ... - PBC Foundation
I was diagnoised with pbc in 2011 and with autoimmune hepatitis last year im 35 and my hands legs and hips hurt so much
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rachngirls1
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This is how most of us feel but we have each other on here and support each when and if we can..................you are not alone XXXX
Hi Rachngirls1,
PBC is not easy to live with is it? I was diagnosed 7 years ago and I can still remember the shock I was in after the doctor told me! The itch was driving me mad and although it has improved, the fatigue is horrendous. I don't have autoimmune hepatitis, but this last year, I have too been plagued with aches and pains which affect my hands, legs - particularly behind my knees, and hips. The latter has a huge impact upon how far I can walk and I am trying yo get a Blue Badge ( see my question re this! ). Hang in there and know that you're not the only one going thru this! Has your doctor recommended any medication! I soldier on with it all and at least I have an understanding husband and hepatologist. It might be worth contacting your specialist to see if he can help. Meanwhile, take care and try to rest as much as you can. Do you have supportive family/ friends who can help out now and then? The difficulty I find is that few people understand the condition , especially if you look well most of the time like I do!
I sympathise completely. I have suffered dreadfully with joint pain. After several years of a useless rheumatologist I sought a second opinion. He classified me as having "PBC Arthritis" and put me on Hydroxychloroquine which has made a huge difference. The major difficulty is finding a rheumatologist who understands.
Hi Racingirls1 as previous people have stated I suffer pain in joints and have limited painful mobility ! I was convinced I had ms because I have such weakness in grip ECT saw a neurologist last Friday 3 consultant as my gp wasn't happy that they kept giving me a non diagnosis he was really nice talked through all my MRI scans explained why I am in so much pain down my left side bulging discs in neck and a bond spur just touching spinal cord but not constricting it I am under a pain clinic and have pain block injections in my neck and base of skull the horrendous headaches I have and lower spinal injections for fusion of lower spine which affects my lower back and hip. My advice keep going back to Drs ask them have they got a pain management clinic asked to be ref as they can review your medication as whole and make sure you are in the best medication for your pain level .sending you a big gentle hug xx
Hey, I am 46 and was diagnosed with AIh and PBC back in june. The joint and muscle pain went when I was on lots of steriods but now on two a day with azathioprine, its constant. Like you legs hips hands, also they feel hot. To top it off I work in a school and seem to be catching every bug going! This illness sucks. So dont feel that you are alone. Sometimes I feel down, sometimes pissed off and other time determined not to let this run my life - usually just before I remember to take my meds....
Hi there which condition were you diagnosed with first? I ask as my consultant informed me at my last apt a few weeks ago that he thinks I have the PBC AIH overlap going by blood tests over last while and because my bilirubin is on the rise. I am waiting to be called for biopsy to diagnose or rule out the AIH.
Hey, was told they thought I had both at the same time through blood tests, but needed to check by having the biopsy. So I was pretty prepared. At the specialist meeting with the biopsy results it was confirmed stage 1 for both. I was pretty lucky to have been caught so early I think. It seems we are in a pretty exclusive club arent we lucky!
Ha ha at least you have a good sense of humour! What were your symptoms if you dont mind me asking?
Joint pain, then they felt swollen. I thought it might have been arthritis. So had my bloods taken which flagged high ALT , then those kept rising. No arthritis, thankfully. My joints really ache esp mornings but I dont have a problem with movement.
Right now they are aching mildly. Seems an odd symtom to have but seems pretty common.
How about you, what led you to get tested?
Todays been a good day, tomorrow I may fall off the cliff and be morose.
what is alt
Hi again I had blood tests done mainly because of horrendous itch was suffering from. I also had chronic fatigue and joint pains but really would have put these down to my work i.e. working 12hr shifts in a care of the elderly ward (36 bed capacity) at the time. It was a very busy heavy ward to work on. So mainly due to the itch I went to the dr. My LFTS were up the creak and eventually after much to and fro-ing to drs and consultants approx a yr later was diagnosed with PBC that was back in 2002.
Alanine transaminase an enzyme found in larger quantities in your liver.Raised levels indicate damage to the liver, cant be an indication of many things.
My mother and I were both diagnosed with AIH/PBC overlap in December. My mom is in the end stages and its very hard to watch. I feel very alone as well and scared. I have two girls under age two and i don't want to leave them without a mother. It's nice to have found this, I am sure we all need the support
