First step: Hi all I've finally been... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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First step

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Hi all

I've finally been diagnosed as having Raynauds today after struggling to get a "routine" appointment with our GP. I guess I've always known I've got Raynauds but now its official. The doctor must also be pretty concerned as I've ben prescribed Nifedipine which I have to take three times a day. Also being sent for a fasting blood test as the doctor is concerned that it may be secondary Raynauds. So I'm being checked for glucose levels and inflammation markers.

But I don't know how this is going to change my life. Already I find when getting milk out of the fridge that I have a very rapid loss of circulation in my fingers, I wonder over time if the tablets will help or whether I'm not confined to wearing gloves all the time. It even happens in the summer.

But I go from one extreme to the other, cold "lifeless" fingers to swollen sweaty hands. I don't know what's worse.

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5 Replies

welcome to the club Phoenix !

hopefully you will respond to the Nifedipine to stabalise the episodes.

I still only put my hand in the fridge for the minimum time necessary, and I have learnt that prevention is better than cure with these symptoms - so I am always dressed with more layers than an onion and have a handwarmer or gloves as my accessories ! Living the dream !

have you seen the raynauds and scleroderma association's website rayanuds.org.uk there is some great information on there as well as an eshop for all the little goodies you can buy to make this experience a bit more pleasant !

Keep warm, take your tablets and keep us all posted on your progress with the nifedipine :) x

mrsqwerty11 profile image
mrsqwerty11

Hiya, I hv sclerederma and secondary raynauds, I hv never had a blood test were I hv to fast, although I hv several blood tests in a yr plus lung function test and heart scan, I can gladly say that the nipedine works for me, I take 30 mg slow release tabs per day, I hv also read on here that a few ppl get hotnsweatymhands after a attack, I hv not had this fortunatly. hopeing the nipedine works for you,

I think the fasting test was because the doc was concerned I may have diabetes, cuts and bruises take an age to go or heal, constant thirst etc. so I think she's trying to kill two birds with one stone so to speak.

zenabb profile image
zenabb

It sounds as if you have a good doctor. The nifedipine dialates your blood vessels to get blood to your extremities. I suggest you do things as you feel that you need it. Not all at once.

Well after having been taking the tablets for just over two weeks, I've seen little reduction in some of my symptons. Does anyone else find that they have really cold, sweaty hands (and feet) whilst taking nifedipine? Have also had really bad shakes to the extent I've had fund whilst making or carrying hot drinks.

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