new to group: Hi I am new to this forum. I... - PBC Foundation

PBC Foundation

9,374 members7,943 posts

new to group

Cymru2009 profile image
4 Replies

Hi

I am new to this forum. I was diagnosed about two year ago after blood tests for liver function after slightly enlarged fatty liver the marker for PBC. Now see a consultant and been on Ursodeoxycholic acid for all that time. Gave up drinking three years ago. Last tests and ultrascan found iver returned to completely normal and bloods good although the PBC is of course still there. Consultant said he didn't think I would be affected for 30 years. As I'm approaching 60 I rather hope something else gets me before then! Fingers crossed he is correct. I have been getting some joint pains, particularly in small knuckles, and off to see a rheumatoid arthritis specialist as GP says it could be related to being susceptible to autoimmune conditions - anyone else relate to this? I don't suppose light-headedness has anything to do with this condition? I had a bowel cancer screening a few weeks ago and all clear but GP said I was borderline diabetic. Could it be this? Also dark urine but maybe that is just dehydration. I have started an allotment and spend hours and hours there digging every day. Maybe all the aches, pains, lightheadedness and dark urine is to do with over doing it there?

Written by
Cymru2009 profile image
Cymru2009
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Ktltel profile image
Ktltel

Cymru2009,

They say one auto immune disease begets another. That does seem true in my case. I was Dx with PBC last year in October. Started on URSO. But was taken off at the end of November cause I wasn't tolerating it well. Then in February of this year I started having joint pains. Subtle at first, my ankles, knees, wrists, and neck hurt and my joints swelled. In a month I was so stiff and hurt a lot. I saw a rheumatoligist in March. First he put me on prednisone for a three weeks. That helped. When I came off of it the swelling and pain returned. I was also started back on URSO in March and this time I tolerated it.

I had labs done and my rheumatologist dx me with Seronegative RA. On April 16th I started the RA drug Sulfasalazine. I've been on full dose of it for 2 1/2 weeks or so. (They raise the dose slowly.) It's helped some but my wrists and nerves in my mid back are still causing me pain. Inflammation still there. I've been put on Gabapebtin now too, for nerve pain in my back. Ugh!!

I don't see the rheumatoligist until July 17th. I hear it can take 3 months for this Sulfasalazine to take full effect. Maybe more. I can function but, I hurt. I guess most with RA do even on meds. I don't know. Methotrexate (another RA drug) is supposedly out for me to take because of my PBC.

Others on URSO have had joint pain "without" being DX with RA like me. I had to get it checked out. I was just so stiff and in pain. Maybe, if you don't have swelling it is just the URSO causing your joint issues. But if it gets worse, see a doctor about it to be sure.

Stella ❤

CeeCee101 profile image
CeeCee101 in reply to Ktltel

Stella this post is old, are you still active here? Just Dx with overlap RA to PBC.

butterflyEi profile image
butterflyEi

Hi Cymru2009

Yes I also suffer with pains in the small knuckles but as yet have not gone to the doctor as my hands are only really bad when I have been doing a lot but would be interested to hear how you get on.

My hobby is sewing so not as arduous as gardening but when I have been cleaning, moving beds and turning mattresses then my hands are very painful. I participated in a webinar held by the PBC Foundation and during one of the sessions Robert from the Foundation said we should drink lots of water I cannot now remember how much but 3 litres a day sticks in my mind. I sometimes have light headedness but I associate this more with my pernicious anaemia than the PBC. As to border line diabetes I wonder if this is the diet related one whether a quick look at

diabetes.org.uk/Guide-to-di...

Your "handle" indicates that you may be Welsh and if you are then we are having some great weather in the UK at the moment so I hope you are enjoying some sunshine with your hobby.

best wishes

GrittyReads profile image
GrittyReads

How often do you have blood tests? If I have anything out of the ordinary, my GPs do repeat LFTs, just to be sure - otherwise it's just once a year (and I don't even have PBC, yet - may never get it - just have M2-AMAs). I didn't know fatty liver was a particular marker for PBC, I thought it was more associated with other liver issues. However, the muscle and joint pains you talk about are recognised as one of the most common symptoms of PBC, now, together with itching and fatigue. But these are only symptoms (diagnoses should not be based on symptoms alone), and can be common for other liver and/or autoimmune conditions.

I'm assuming you were diagnosed as PBC because of the presence of AMAs, and also abnormal liver function tests (the 2 most common diagnostic factors for PBC) unless you had a biopsy. However, at the time, your GP/consultant should also have checked you for all other possible liver conditions, as well as all autoimmune conditions - especially the ones linked to the other sub-types of AMA. If these tests were not done, I'd ask for checks for all possible issues linked to your symptoms. Don't be afraid of making a fuss.

Hope this helps, but why not also talk to the PBC Foundation advisors - link to their website at top of the page.

You may also like...

New to the group but not PBC.

another year trying various liver cleanse and diet but my itching became severe. I found a liver...

New to the group and saying \"Hello!\" :-)

joined the group a few days ago and thought I would introduce myself. I am 40 years old and have 3...

Isle of Wight - new group

I look forward to our next meeting later this year. Eileen

New member advice needed

I am 46 yrs old, diagnosed with PBC exactly a year ago after liver biopsy and blood tests. Started...

New here! Question about Diagnosis

that my liver enzymes were high. I was referred to a GI, who also specializes in liver conditions....