My diagnosis for Scleroderma was 16 years ago and bloods taken at that time showed unusually high readings in my liver leading to a biopsy which showed nothing untoward. However a couple of years ago these ‘readings’ went through the roof and I was prescribed Ursodeoxycholic which amazingly brought my liver readings down to a less worrying level. The fatty liver issues is none alcoholic related (thank goodness as I do like a glass of red). Anyhow to cut to the chase I recently had a DEXA scan which showed traces of water in my stomach . I have an appointment to see the Liver Specialist this coming week and thought I would post this in case anyone with similar experience may be able to give guidance towards specific questions to ask. Thank you so much for reading this post. ( PS. Last time I posted I inadvertently sent it twice but despite marathon effort I was unable to delete so apologies in advance should my IT skills let me down again).
Liver connection.: My diagnosis for... - Scleroderma & Ray...
Liver connection.
I have been on Nifedipine for a long time now and I tolerate it well and have upped to 4 tablets a day. If I forget to take it my Reynaulds is very painful. My liver enzyme results in blood tests have recently been high. I have fatty liver and was due to have a liver scan today but it got cancelled. Scleroderma has now affected my lungs and I have liver disease and have to start on Mycophenolate to lower my immune system to prevent further inflammation of the lungs. My DEXA scans showed osteopenia, possibly from taking steroid medication (which I am trying to come off) since I was diagnosed with scleroderma 10 years ago.
Hello, thank you AJOC4. It was an interesting posting you made and I now have some questions for the appointments I have at Hepatology and Osteoporosis. Again thanks. CC
Creepily familiar story you have compared to mine. Do you ever have unusual spikes in blood pressure?
The Nifedipine for Reynaulds lowers my blood pressure. I do get spikes in heart rate though. I also have difficulty swallowing, inflamed oesophagus and a lot of reflux, all made worse by extreme stress at work leading to depression and going on sick leave. The anxiety and stomach churning made me even bring up water and I have lost 3 stone in 3 years. I had to leave my job because I can’t go back to the stress.
enzymes are up, do you feel okay? I would inquire about the high levels just being a symptom or rather a defense of the body processing proteins in a different way. I have a very similar story as yours. Maybe with a scleroderma diagnosis we’re supposed to have high live function. Just an idea. Spirits up!
Interestingly I had protein in my urine last appointment.
I also have non alcohol related fatty liver, I haven't drunk for 8 years due to intolerance anyway. I've been a vegan for 40 years so was shocked to have fatty liver. I do have familiar hypocholesterolemia too but told that isn't connected to fatty liver. Is it actually a SS thing then?
Hullo thank you for replying. I will ask my liver specialist on Wednesday and see if I can get an answer. regards CC
I believe so.
for nearly 2 years my liver readings have been high to the point I was not allowedany meds that filter through my liver I have systemic sine sclerosis and raynaulds it affects my digestive system bowel and swallow. They recently started me on Rituximab and iloplast and interestingly my liver after having two fibro scans has come down, I don't have a fatty liver and I don't drink at all apart from water and decaff coffee. I suspect that it could have been due to me having an infected Gaul bladder no stones just thickening and sludge which interestingly I had to pay privately to have removed in 2023 this was because Noone seemed to think it was needed although liver enzymes were so high? When having removed it was stuck to my liver and bowel the surgeon said it was very badly infected. Which explained my rapid weight loss and constant flares on my tummy I also had sepsis which the surgeon said had come from the infection, I believe the damage to my liver came from this and is now slowly repairing itself? Although I am still not allowed drugs like methotrexate which is fine by me as to the NHS they dont seem to be definitive about why my liver function was so poor I'm not sure this will help you but it's my story anyway good luck in finding answers ❤️
Hi Jaq1971. Your post was really interesting. I’m sorry you have had such a rough time and it all sounds very scary. There are so many aspects to Scleroderma and through the posts I read I am learning all the time. I also realise compared to many others with this weird auto immune disorder I have so far been fortunate . I see the Liver Specialist on Wednesday and fingers crossed my treatment will involve just taking yet another tablet. Kind regards CC
Newly diagnosed
gut/brain connection and Rifaximin
Mouth ulcers and raynauds connection?
