Scleroderma & Raynaud's UK (SRUK)
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terrible Russian medicine

Hi Everyone,

At first I want to say sorry for my English and tell about my moms. She's on a foto)

She has ssd from 2000 but starts treatment 4 years ago, because doctors could not diagnose the disease. Every day she takes prednisolone prescribed by a doctor. I understand that this treatment is out of date, but we can't find right doctor in our town.

Last time her health changed for the worse. It is problem with eating GI issues. She lost weight (now 42 kg). Every day she has vomiting or diarrhea.

I'm really worry. I pray for help. May be someone tell me how i can help her?

6 Replies

Scleroderma can affect any part of the gastrointesinal tract.

She should be in the care of someone who knows about scleroderma. As with so many of these conditions there is no cure but often it is possible to limit the effect of new symptoms.

She needs to make her doctors aware of any changes that occur. Sometimes the new symptoms can be held at bay by a change in medication.


This may be a starting point?


Thank you, VanessaJoanne

We were vizit this centre 2-3 weeks ago. Doctor examinated and put one's mind to the sore on hand and proposed her join in group for tasting new medicine. Now we're waiting this pills.

But doctor doesn't say anything about problem with Gl. He said it's normal... I think that main problem of medecine in my country is indifference( thats why i want to find help and advice on foreign websites)

My dream is to go for a treatment in Europe, find a specialist who prescribe the correct treatment, say what kind of diet she should follow and what we must to do for comfortable life with this disease.


It is very important to treat acid reflux

You can use omeprazole or lanzoprazole

Untreated acid reflux is dangerous as it can lead to lung fibrosis or barrets oesophagus

Also I have the head of my bed up on bricks so as to make it slope and I never eat later than 5 pm (I go to bed at 9)

Last meal should not be too heavy either


Where in Russia does your mother live? I can try to find someone who may know more about scleroderma for you. If this would help can you send me your email address?



It will be great. Now she lives in Podolsk (it is near from Moscou). I'm sending my email and looking forward your reply.


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