Raynaud's Syndrome: Anyone want to talk about Raynaud’s?

@lauraj155
I wish you lots of luck!
My doctors are also looking for a more specific answer.
Ronnie (GRANDMAr)

@grandmar, yes my feet turn bluish purple especially when they are hanging down, whole foot including toes! No answers yet but finally getting referral to neurologist. Laura

@lauraj155
Thank you.
Ronnie

Many of you have interacted with @grandmar in this thread and throughout Connect. She is constantly there to offer support to you and share her life experiences.

In this week's Member Spotlight, learn more about what makes @grandmar tick, as well as her motto's for life.

Devoted grandma contends with chronic pain: Meet @grandmar: https://connect.mayoclinic.org/page/about-connect/newsfeed-post/devoted-grandma-contends-with-chronic-pain-meet-grandmar/

I have had raynauds since 25. I am 80. Have developed several other autoimmune diseases. There was no medicine in my day. I just kept warm and defrosted hands and feet when coming in from the cold. I am now on blood thinners for a PE and DVT and am much warmer. I also live in Florida. My grandson has inherited raynauds. He moved from Jersey to SC. Sorry I’m not much help. But I made it to 80. 😊

Doctors had diagnosed me wth Raynaud's for a long time. When I was scheduled for surgery on my shoulder the pre-surgery bloodwork showed a very low platelet count. My surgery was cancelled, and I was referred to a hematologist. I had a bone marrow biopsy and was told I had ITP, MGUS and Cold Agglutinin Disease or CAD. When I'm cold CAD causes antibodies to attack red blood cells and was the reason for my blue fingers when cold. I was told it is very rare and there is no cure.

Hello @hi21. Sounds like the trip to the oncologist was well worth it. Are you being treated for these autoimmune diseases now? What is the treatment? Did you ever have the shoulder surgery?

I've been on Nplate for over a year. Got weekly injections until last month. Had appointment with my hematologist in early March and she suggested I try every two weeks since my counts had risen to the 120's and even 140 right before I saw her. Previous treatments of IVIG, Prednisone and Promacta got me into 40's and 50's.

I have severe Raynauds…on four different meds but sidenafil changed my life. I highly recommend everyone to try this med.

@rachael1357 that’s great that you’ve gotten such a positive response to sidenafil! How long have you been on it and what effects have you had that ‘changed your life’?