Raynauds

[birdballet]

I have had CREST for 30 years and Raynauds from the beginning.Lately,my fingers and toes are colder and my big toenails are all deformed.

I wear socks with sandals even in the desert.

[Patatie50]

I have had Raynaud's for over 20 years. My big toenails have gotten loose and one fell off completely, but don't know why. I am on Procardia XL which works very well for me. I started out at 60 mg but was dropped back to 30 mg about 15 years ago. Take it every day. I put foot warmers and hand warmers in my socks/gloves during winter. (I live in Maine,where winters are really cold). There are times when I get so hot that I almost can't stand it, followed by getting really cold again. This is a new development that began about one year ago. Who manages your Raynaud's? Primary care dr, Rheumatologist, Internist? Rheumatologist has been a good choice for me. What is the CREST?

[Karina in reply to Patatie50]

I understand about the big toenails I too am embarrassed and I also wear socks all the time. I also have Scleroderma and raynauds for over 20 years. I wonder what we can do. I also have some deformity on my fingernails. Hmm for the feet I should check out a podiatrist I'll let you know what happens

Karen

[birdballet in reply to Patatie50]

CREST is supposed to be a lighter form of Scleroderma than systemic and moves more slowly.It is pretty darn systemic right now with lung involvement,so I am not sure.

[spoony007 in reply to Patatie50]

Hi there new here can you give any advise I've just recently been diagnosed.

[spoony007]

Hi there I'm new to this site. Firstly hope your well. I am needing advice as I have just been diagnosed .

[LilaJoe in reply to spoony007]

Hi,

Me too

Did you have the scl70 blood result meaning diffuse( not crest which is the limited type)

Main problems have been around dryness, sjogrens, but now the skin dryness and thickness, coldness from Raynaud's and gastro effects are getting more dominant

The John Hopkins website gives alot of detail, also the Cleveland clinic.

This site is also very supportive too, thank goodness!