Scleroderma & Raynaud's UK (SRUK)
7,048 members3,355 posts

Not been on here for a while as no progress

In spite of gp requesting an urgent follow up appointment with rheumatologist still having to wait till mid October after a wait of 6 months. GP has been unable to get results for my cardio and lung function tests which were done in April. Has been most frustrating as my symptoms have become worse. Omeprazole now increased to 40 mg + needing to take gaviscon, gp intendingnto send me to gastro cons . Have today started on Prazosin for Raynauds , will see how that goes, I reacted badly to Nifedipine so hope this will be ok. Raynauds had been getting worse even in warm weather, have been unable to wear sandals this year, I feel so silly having to wear socks and shoes in the sun! Hving been using electric blanket all summer too. Off on holiday to Canada at we so hope I will be ok on long flight, has anyone had problems with flying with scleroderma? Gp says I should be ok. I hope when I eventually see rheumatologist I will get some support and treatment.

3 Replies

I would be chasing up the heart and lung results where you had them one if GP is making no progress. I have been takung nefedipine since i was diagnosed with scleroderma in March this year. I havent had any adverse effects but my raynauds hasnt improved. I was advised by rhuematologist to wear ugg boots even when it is hot so I can sympathise with you there. It is quite ridiculous and even when I am wearing them the raynauds is still there. I can only walk for a few minutes before the pain starts only in my right foot though. Have you been diagnosed with scleroderma or anything else apert from the raynauds or are you still waiting for diagnosis?


I would phone the hospital where you had the tests done, find out who the consultant would be who you would see and phone his secretary, say you are suffering extreme stress and need to be seen. I don't go to my GP, I always phone the consultants I have seen if I need anything. I have a lung function and heart scan every year plus a CT scan, they only phone me if something is wrong, otherwise we just catch up at my next appointment. I flew last year, only problem was bloody air conditioning, keep gloves in your bag, dress warmer than you think you need to and enjoy, it will be fine. I wear Uggs and use an electric blanket, plus 2 blankets every night on the sofa, best thing to do is move to a cold country, they expect you to dress warm!!! I live in Scotland, no-one notices.


Hey there. I to am wearing winter coat, mittens in 90 degree weather. Silly? Having to explain my reason, tiring. Then those who are asking never heard of Raynauds. My ulcerated finger is so bad. I am scheduled for skin grafting and hope that this will stop the on-going pain that never stops with the cold and warm weather episodes. Good luck on your flight, and stay warm. Discontent


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