AMA positive

[Lollypop89]

hi I’m after some advise please 🙏🏼 guys my previous post mentioned a have a few very high LFT

My own GP has done another test and noticed the liver specialist blood results mentioning I am AMA positive ..

I’ve been prescribed Ursodeoxycholic 500mg twice a day via liver specialist.

I have yet to talk to the liver specialist, but I suppose after doing research this could mean I have PBC .. which when you google this looks a little scary ..

Does anyone else have this ? Do you think it could also relate to rheumatoid arthritis ?

has anyone had sign affect issues taking this medication?

thanks so much guys, feel like my anxiety is really going to town with all this ..

Do you think I should follow a special diet

Oh I have managed to stop drinking for 6 months and lost a little weight to try help with liver issues

[AyrshireK]

Do you already have a rheumatoid arthritis diagnosis? Having one auto immune condition probably does increase your risk of having more than one i.e. your immune system being over active might mean it goes on to affect numerous body systems.

Whilst a positive AMA result might indicate Primary Biliary Cholangitis it could also be raised in R.A. or in other auto immune conditions like Auto Immune Hepatitis, Lupus.

The liver specialist is obviously considering PBC given the prescription of Urso which is commonly used to treat that condition.

The BLT has more reliable information on PBC which might be more positive than information which you might find via Dr Google.

britishlivertrust.org.uk/in...

If you get a confirmed diagnosis then there are lots of members here with PBC and even with both AIH and PBC (they call this AIH/PBC crossover). The PBC Foundation has good information and they have a website and even their own forum here on Healthunlocked.

pbcfoundation.org.uk/

healthunlocked.com/pbc-foun...

Katie

[Lollypop89 in reply to AyrshireK]

Katie thanks so much for the reply

No rheumatoid arthritis diagnosis atm. I do have hypothyroidism, mum has RA and I have been having issues with hip & neck pain and also finger and toe joints really stiff and a bit sore in mornings when I wake.

Been referred to physio so maybe they can look into all these issues I have been having.

Thanks again for your help & info will definitely look at PBC foundation x

[Cat1218]

Hi, I have PBC and within a couple of months also got diagnosed with celiac disease, osteoporosis and fibromyalgia. This was in 20I6 . I also have had hypothyroidism for 32 years. I also had positive AMA and elevated ALP. A positive ANA is more indictative of Lupus. I take 1000mg of URSO daily for the PBC. I have not had many side effects apart from the occasional stomach upset. Last April my bilirubin started to rise and has been doing so since. In September 2022 I was told that I had Cirrhosis by my Consultant Heptatologist. I am now being put forward for transplant assessment and meeting a Consultant from Leeds very soon. PBC is a rare and complex disease and most people can live normal full lives with it, so do not panic and make sure to ask as many questions as possible. You will also find that GPs and other general health professionals know very little about PBC, presuming that it is alcohol related when it is not. I have never been a heavy drinker and the best advice I can give you is to not drink, eat well and exercise. You may find that it will never affect your life and you can live normally. Keep well and also join the PBC foundation. Ironically I used to work on a Gastro ward looking after people with liver disease and also worked in A&E .

[Lollypop89 in reply to Cat1218]

thank you so much Cat1218 for your advise and info.. I’m sorry to hear you have been having a bad time with all of these things x I wish you will with the liver transplant keep in touch xx

[Dyffrynaur]

Hi lollipop 89.

I was diagnosed with PBC after a positive AMA blood test three years ago. My rheumatologist ordered my blood test after me complaining of itchiness and asking if it was due to systemic sclerosis or rheumatoid arthritis. It seemed scary at the time and felt like a death sentence but I’m much more relaxed about it now. I take the same dose of Urso as you and it seems to be working as my fibroscans have dropped from 8.2 to 5.7. I have lost weight but can’t excercise because of severe arthritis. I would recommend joining the PBC foundation online as you can get lots of information and there are even groups meeting depending on where you live. Try to excercise and eat a healthy low fat diet and you will feel better for losing some weight. Ask about getting a fibroscan to see at what level your liver is affected.

Good luck

[Lollypop89 in reply to Dyffrynaur]

thanks Duffrynaur your comments have made me feel a little less scared x

I did have an ultrasound end of last year, which they diagnosed a fatty liver, no mention of any other issues with my liver 🙏🏼

When I eventually get to talk/see liver specialist I will ask for all the tests you have mentioned.

Have you found it hard to find these tablets .. some of the chemists I tried couldn’t even order it .. managed to get these after driving round a few thank goodness.

[Dyffrynaur in reply to Lollypop89]

Hi there

No I’ve have always been able to get them easily. The tablets I find hard to get are Mycophenolate. Between having to order them from the hospital and the pharmacy not always having them it’s hard work. I find it’s a good idea to make a list of things to ask the consultant when I have an appointment as I otherwise I come out having forgotten to ask about something that has been worrying me. Hope this website and contact with others help to reassure you

Best Wishes

Dyffryn Aur

[Ochredreams]

Hi Lollypop89,I hope you are doing ok with all this information swirling round your head. It can be a hard thing to go through 🥺

I tested positive for AMA last year and was sent to the liver clinic who have given me various blood tests including an ultrasound and an MRI scan.

I have been getting normal ALT results so the drs think I have PBC but I still need blood tests to confirm if I have cirrhosis.

I feel like a walking blood bank for the drs at the mo but I know they are testing me for various things to rule out anything else.

It can be scary getting a diagnosis of a new condition but I console myself with thinking that if they catch something early then it can be treated and you will have support within the group.

Well done also on loosing weight, Im counting calories at the mo and it's working wonders for my weight loss and I know how hard it can be. 🌟

Keep up the great work and keep posting here so we know how you get on. ❤️

[Lollypop89 in reply to Ochredreams]

hi Ochredreams sorry to hear you have also been going through this x but thanks for your post and I hope you also get the answers you need.

My globulin, Alp/alt & GGT are all raised, drs thought it was because I was drinking too much .. 3 times a week just over a bottle of wine .. not drank since Xmas .. lost some weight which has reduced my cholesterol levels to normal.. a positive 😊

Did your ultrasound and MRI test come back with any results at all ?

Good luck on your journey & keep in touch xx

[Ochredreams]

Sorry for late comment - been a busy few weeks here!Well done on your weight loss, this is not an easy task and you have done so well to get your health on track! 🏆

I've not had the results yet but I've recently just done some blood tests for fibrosis so I think once they are back I'll get a call for the results.

I've been thinking if it was urgent they would have called me already so I'm trying not to worry!

I too am loosing weight and learning more about a healthy approach to food. I used to have one glass of low alcohol wine a week but id rather use the calories on something more tasty so I've not missed it one bit.

I think the stigma is still there regarding liver disease and people still assume it's alcohol related but I know mine for sure isn't.

I'm seeing this as a positive journey, I'm learning more about myself and loving eating new foods.

Stay well my friend and I'll be sure to update when I get more news. ❤️

[Lollypop89 in reply to Ochredreams]

thanks for coming back, and yes I agree no news is good news xtra it’s good to eat healthier and enjoy different foods x

I am trying to eat more healthier hopefully once we both have seen/spoken to doctors we will have more of an understanding of what we can do to help us more x

Take care xx

Sending loads of positive energy to you 😊