Hi I have pbc I am on250m ursogal 3 times aday

I was just wondering if any one else also has scleoderma, as I am awaiting a consultant appointment as my pbc consultant things due to my pbc I may have scleoderma. I am finding it really hard to accept as I feel so tired .itchy my feet keep swelling and blistering my hands keep swelling .I can not stand for long periods or walk very far due to the pains in my legs, I work10 hour shifts in a stressful job .(which is not helping) on my days off I don't leave the house as im to tired,my dr just keeps saying you need 2 weeks sick !!! I don't mean to moan but I really do feel better reading all the posts as I don't feel alone,as every one says oh don't you look good ,as no one understands pbc .

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  • I have several autoimmune issues, including PBC and Scerloderma. Scleroderma was dx about 18 years ago and PBC 2 years ago. I do think the PBC has been present a lot longer and missed. Looking at old records from former doctors my LFTs were high and I had complained of right side pain for years and years. Did they tell you which type of Scleroderma you have? There is a distinct difference between the two adult forms; Diffuse or limited.

  • Hi thank you for your reply, it has not been confirmed yet as im waiting to see a consultant as something has shown up in my blood and because im showing signs of scleroderma , itching tiredness , swelling ,joint pains. My consultant said with p.b.c you can have other autoimmune issues, so I really do not know anything about scleroderma , do you suffer with any similar issues I have mentioned, ?.

    Thanks again for your reply.

  • Yes, I do. PBC and Scleroderma can cause extreme fatigue and joint pains. The itching is likely to be from the PBC. I do feel a little bit better now than I did two years ago, changed some meds and eating more fresh and organic foods. Sjogrens also usually goes with PBC, it causes dry eyes, nasal passages and mouth. It's important to take extra care of your teeth. Are you in the UK, I am in USA. There is a great FB support group for PBC you can join - the patients know more than the doctors and I've learned every patient is different and not all patients do well on the only drug allowed for PBC that is said to slow the progression, there are other drug s to help with the dreaded itch. Scleroderma has no cure now but University of Michigan is close to finding something to cure it as I understand. It's important to have lung and heart tests regularly if you do have that . So much for you to learn.

  • HI yes indeed so much to learn, and to take in but thank you I have found your comments very helpful .i am in the uk. I do suffer a lot with not being able to swallow and I feel like I loose my breath and find it hard to breath at times, its the itching and fatigue .joint pains which I find so hard. their are times I just cannot stand any longer on my legs as the pain and swelling is so bad . {after a 10 hour shift at work im exuastedI just hope it all settles down soon , I had blood tests results in june which was much improved. I have just had recent blood tests results which are not good again so im very up and down .

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