reynauds!!!!

[babycakes]

hi there,  during this bad british winter my reynauds has been so bad this past year.  I even have to have gloves on in the house sometimes because my fingers are constantly turning blue.  Is reynauds normal with sjogrens or is it a seperate issue.  I got it after the dryness problems but about the same time my joints seemed to get more painful.  Its quite a  problem and im not sure what to do about it.  My hands are constantly freezing even in a warm house.  Is there any medication for it and should i be concerned that something else is going on??

babycakes

[JannaLee]

Hi Baby!

My Raynauds onset story is the same as yours.

From what I can tell it is a fairly common thing to have it with Sjogren's and I have learned there is a medication.

My Rheumatologist offered to put me on it but I am able to manage mine pretty well right now so I declined for the present.  I think your case is much worse than mine and it is time for you to ask about it.  I think there are some side effects/possible drug interactions that need to be considered in the decision.

Let me know how it goes for you?
Janna

[babycakes]

thanks for the reply janna

We are heading into summer now (hopefully) so maybe heading towards autumn i may speak to my rheumie about it

annie

[Katybarstool]

Hi Babycakes

I'm in the UK and have Raynauds too. I've had it about a year, but my feet became unbearable at Christmas time, so I was given Amlodipine to see if it would help. Amlodipine is actually used for angina and high blood pressure, but it has definitely helped my feet. At first I had a lot of facial flushing, but that has settled. The problem I am having now is swollen feet - they have grown a size, and my feet and lower legs seem to get fatter as the day goes on. However, I am awaiting some surgery and need to keep my blood pressure as low as I can, so I'm sticking with it for now.

My son has a similar condition and takes nifedipine. He finds that really helpful, even though he has to take it three times each day, wheras I take mine just once a day.

I hope your hands improve soon.

Kathyx 

[Patze]

Hi Babycakes,

I too have Raynaud's and was diagnosed last year (summertime), and like some of the others, my hands and feet stay cold most days and my nose is also starting to turn blue too, and I'm wondering when all of this will stop?   I've not been offered any meds (nor has he talked about any), but I'd love to try something that might keep me a normal color, and maybe a bit warmer.  I do like the color blue, but it gets old when you hands are always turning blue and hyper white because my body temp is usually around 96.2.

Do you fingers/hands hurt after they've been really cold for a while?  The pain is not to be believed.

Take care -

Patze

[babycakes]

hi all

yes patze my fingers are so painful after they have been cold for a while, and it takes a while for it to go away after i have started to warm them up. I do try to keep them warm but of course it is impossible to do this all the time, especially with a 20 month old to chase after.  Kathy, thanks for the med advice, i think i may have to speak to my doc about this because its becoming a problem, maybe he can offer something

thanks annie

[Pisces24]

About 4 years ago I mentioned to my doctor about 2 fingers on my right hand (middle ones) turning white in the winter - even at times when I wore gloves/mittens. They don't hurt or turn blue just turn very pale and a bit numb.

He told me it was Reynards. He said there is a cream available on the market that helps it. I didn't get it at the time as I wasn't and still am not affected by Reynards badly.  You might check into the cream - wish I remembered the name.

Odd as I never associated my 2 pale winter fingers with SJS?