Trial of Nifedipine for Raynaud's: Results:... - LUPUS UK

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Trial of Nifedipine for Raynaud's

Lupiknits profile image
11 Replies

Results:

1. Bright red face and shins

2. Tendancy to topple over

3. Cold hands and feet ( but red nose)

Thoughts: not worth it just for a warm nose.

Winter is coming.

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Lupiknits
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11 Replies
PMRpro profile image
PMRpro

You could change your name to lupirudiknits...

Lupiknits profile image
Lupiknits in reply toPMRpro

👏

Ryanmac84 profile image
Ryanmac84

Hi I think I have raynauds aswell .Over the past two years especially in winter my fingers would turn white and numb ?My ears also burn hot red and seem to swell even indoors at times .

Are the ears affected in raynauds like this ?After showing my gp pics of my fingers he last year he told me it was raynauds but harmless .I have been told that me being suspected to havin raynauds was one of the reasons tests were ran on me which I tested high on the anti s DNA test which I'm told is an Indicator for lupus .

I was referred on to rehumaltologist after this test was repeated and the results were the same .I await appointment in afew weeks at a lupus clinic .This has all came about over the last four weeks or so and I'm abit concerned .Lately I have been feeling as if one of my fingers has been goin numb especially in the mornings even in summer .Are you like this and how is raynauds diagnosed for sure ?

Lupiknits profile image
Lupiknits

I don't think there is a definite test for Raynaud's. It seems to be confirmed by the symptoms. Mine was spotted at my first rheumy appointment when the junior doctor noticed how cold my hands were. Up until then I thought it was normal for me. My hands, feet, and nose have become worse since then. From what I've read the ears can be affected as well. I'm no doctor, but your symptoms sound like mine, and yes, I even have them in the summer.

My hospital visits vary between rheumatology and the connective disorders clinic. After all the blood tests, and at the moment, I have "something auto immune" with Secondary Raynaud's. I'm not chasing down a specific label for the auto immune problem, because the treatment is pretty much the same.

I was quite pleased to be offered a trial for nifedipine because my blood pressure is usually low, and this med is often prescribed for high blood pressure. It helps a lot of people, but I won't be able to take it.

I hope you are able to find out more about your symptoms and how they can be treated.

Ryanmac84 profile image
Ryanmac84 in reply toLupiknits

This reynauds has just came on me the last couple of years .My ears in particular would feel very hot and burn bright red .Stress seems to play a part also I think .

I have no diagnosis yet but my appointment is for the lupus clinic ?So I'm guessing they suspect I may have lupus

Ianrussell69 profile image
Ianrussell69

Rainods is the thorn in my hand I'm a carpenter and around the end of October it starts white painful cold hands I can't pick up my hammer nails ect the rumi consultant told me last month there is a new drug out for rainods but I'll have to deal with the side effects "viagra"😂😂😂

The only relief I get is from pocket warmers which helps a little

Lupiknits profile image
Lupiknits

I think Twitchytoes tried viagra for her Raynaud's. You poor thing having to carry out your work with the dead hands x

misty14 profile image
misty14

Hi lupiknits

Sorry your nifedipine trial didn't go well. There are lots of different ones you can try if it hasn't put you off!.

There is a nailfold capillary test that diagnoses Raynauds. Your Rheumy can refer you. Have a look at the Raynauds and scleroderma Association website if you haven't already. I think they've developed a diagnostic tool on there and it's packed full of helpful info. X

Lupiknits profile image
Lupiknits

Thanks Misty. I've had the nailfold test, though they had decided on Raynaud's before that. I'll take a look at other possibilities but so far I've been told they aren't suitable because of my low BP. x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Lupiknits ,

I'm sorry to hear that the trial of nifedipine hasn't worked out well for you. If you haven't seen our article about Raynaud's and lupus you may want to read it because there are some good tips for managing it. lupusuk.org.uk/coping-with-...

Lupiknits profile image
Lupiknits

Thanks Paul

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