Hi all,
Was wondering if anyone else on here has developed neuropathy in the arms and legs due to there Crest... Also My Liver gamma GT level is 556 ... a normal reading should be between 10-48...Its not alcohol induced (I don't drink). Just wondered if anyone had these problems ?
Thanks Cathie x
Might you have Sjögren’s as well as CREST perhaps? I have a small neuropathy everywhere including arms and legs as part of my Sjögren’s. I know that liver problems are also commonly related to Sjögren’s and my liver is highly sensitive. What do your doctors say?
Hi Twitchy,
the ANA tests prove positive for crest, I don't know anything about Sjorgens I will look it up... I saw a Nuerophysiologist who actually asked me if I fell over or lost my balance ( which I don't but I do sometimes feel a bit wobbly )... Thanks for your reply its given me something to look into.
Love Cathie x
My ANA is nucleolar which usually points to Scleroderma but I don’t have ENA for anything including Sjögren’s. But I have a very positive lip biopsy for Sjögren’s. I do get telengecstasia and my face and hands are tightening and numb but they say this is due to the small fibre neuropathy and CTD. I have Raynaud’s as well.
The most scary symptom for me is worsening tremors which have been affecting my balance for a few years now - orthostatic tremor I believe. Hey ho! X
Hi there, I am not aware of peripheral neuropathy being associated with scleroderma, but despite a global pattern of symptoms there can be specific variations for some people, so that might be something that has occurred for you. Hopefully you have a Consultant who will treat you as an individual and investigate and treat what is in front of him rather than fobbing you off because it doesn't fit the normal picture of scleroderma.
Regarding your GGT levels. Sometimes when you are having a disease flare and your immune system is very active then the liver becomes inflamed and you have higher levels of the liver enzymes than would be expected. It may settle if your disease is under better control. Some people get autoimmune hepatitis (inflammation of the liver) as part of their disease picture. Again when the disease is treated it should settle. The other reason for a high GGT is medications. Have they got you on anything for your scleroderma? If you are on methotrexate, or mycophenolate or any of the immunosuppressants then you have to have regular blood monitoring because of the potential impact on your liver. If the liver enzyme levels are high you may need to reduce the dose or come off the drug altogether. Do you know if any of your other liver tests are abnormal? Your Alk Phos? or Alt for example?
Sometimes people are specifically referred to a gastroenterologist who specialises in dealing with liver problems.
I hope that helps
Lucy xxx
Thank you Lucy..... I'll ask the questions about other liver readings, I have seen an Gasto consultants and basically what I have is ireversable they can only try and halt the progression...I'm seeing my rheumy on Tuesday the 4th, i'm dreading that to be honest, every time I go its bad news ... !
Appreciate your reply.
Take care x
Cathie x
Hi Catkar
Over two years ago my liver readings went through the roof and i was poorly for a good few months after. After an MRI and many vats of blood they food that i had scarring on my liver, a cyst on my pancreas and a polyp on my gallbladder. From my bloods they found i have CREST.i was referred to a rhume who, diagnosed me with CREST,Srojens and Raynards. I have found it very hard as i was a very healthy and active to not being able to do much some days. Now over two years later, many appointments, i am able to deal with all the strange things happening to my body. I changed my diet to gluten and lactose free. Listen to my body and don't over do things, keep stress at bay. I have just recently been given some good news that the scarring on my liver is shrinking. No more MRI s.
Hi Angi123,
Thank you so much, it gives me hope that my liver may recover at least a little in time...I have only just started (This weekend) on a gluton free diet, (I love a bit of toast and a Panini...lol ) But i'm determined to stick at it and see if things improve . Not sure how long it will take to see some results ?... I live in Hertfordshire and am not really finding my Rheumatologist to be very empathetic or helpful... I am therefore trying to arm myself with as much information as possible to be able to help myself more ..
Thanks for your help
Cathie x
I like you did a lot of research as my rhume wasn,t telling me what i needed answers to. I am also a member on inspire. They give you lots of information and tips. You can get (Warburtons) Newburn bread which is the best i have tried. You can still have panninis too. I found Asda have a good selection of gluten, wheat and milk free stuff. The lacto hard cheese is yummy. Seabrooks and pommy bear crisp are gluten free also. I buy alot of frozen smoothie mixes from Aldi and mix with lacto free yoghurt which you can also freeze for yummy ice-cream. You can also have Besto best gravys. Good luck x
What is 'Inspire'
x
It's an American site that offers information, help and support. People from all over the world write in. When you join, type in Scleroderma when searching for forums to join. You will meet with lots of others that have what we have and many others with lots of other types of Scleroderma.
Radiotherapy to pelvic region with crest. 
Denosumab and diffuse SSc 
SSc ILD & PAH
Telangiectasia and crest
