April 22, 2016 at 2:30 pm #7849
Hello – Noticed that most of these posts are getting older…anyone still here?
New to Raynauds – I tested positive for ANA and was told I have Raynauds; but I don’t have the color changes. I’m freezing all the time (hands and feet) and was suffering from chilblains this winter (which is what triggered me to go see the Dr). I was put on the generic for the Malaria medicine Plaquenil. It healed the chilblains right away; but I’m still having horrible tingling/numbness in my feet.
Do I go back to a rhuematolgist for that? or just go straight to specialist for nerves or circulation?
Ps…this sucks. and I’m over it already and it only been 5 months 🙁April 24, 2016 at 7:57 am #7850SarahModerator
Thanks for posting about your experience with Raynaud’s. Were you diagnosed with an autoimmune disease such as lupus, scleroderma, or rheumatoid arthritis? Plaquenil is used to treat these diseases. My advise is to go back to the Rheumatologist and let the doctor know that there are still symptoms that are not going away.April 24, 2016 at 4:40 pm #7852SusanneParticipant
Hi Sunshine (love the name!) – if you’re on Facebook, there is a support group where a lot of information is shared, and you won’t feel so alone – everyone understands what we’re going thru. Even if you’re not a Facebook user, you can create a Facebook account just to join in this support group. Search for Raynaud’s Phenomenon / Disease / Syndrome and request to join it. I’m a newbie too, and I have my first rheumatologist appointment this week. Good luck to you! 🙂April 24, 2016 at 5:13 pm #7853
No – no other diagnosis. My whole life, for as long as I can remember, my hands and feet were always colder then everyone else’s. It was my normal and never really thought twice about it. Then about 5 years ago, I started having red, painful, round raised nodules/rash on my hands. They were only there during the winter months and would completely go away in the summer. I kept thinking about seeing a DR for it, but they were not that bad. Kinda just ignored it. Then this last December – that same rash, red hands, etc came back but way worse then ever before. Then this winter for the 1st time – I was having it on my feet too. My toes had these sores on the skin close to the nail that looked like awful blisters. My toes were purple and cold. I was starting to have episodes of feeling like I was frozen from the inside. Like my blood was cold. It didn’t matter how many layers or what heat source I had – I was cold. Presidents Day weekend – it was so bad I ended up in urgent care. Freezing, purple toes, the rashes…all of it full blown. They ran the blood work, put heat lamps on me and sent me home. Results came back – ANA positive and anti-SS-A positive.
I have had 1 appt with the Rhumatologist and she just said it was Raynauds. Put me on the plaqunil. Since then, I’ve done a lot more research and I’m starting to understand that the Raynauds is secondary to whatever other issues are going on. But, no one has give me that name yet. I do need to follow up – just wasn’t sure which Dr to go see next? or go back to the Rhumatologist.April 24, 2016 at 5:14 pm #7854
Thanks! I tried to pick something that was uplifting for my spirit 🙂 Love me some sunshine right now!
I will look for the support group – Great Idea!
- You must be logged in to reply to this topic.