Hi there. I have Raynaud's secondary to RA. There are 2 types of Raynaud's. The more common is primary Raynaud's which is not linked to another condition. The secondary type can be linked to various autoimmune conditions including lupus and RA. The secondary type tends to be more severe than the primary type. I get it in my fingers and toes. Mine was so bad in 2011 that I developed 3 very painful ulcers that took months to heal. I take Nifedipine and Vitamin e tablets prescribed by my rheumie to keep it under control. My symptoms are that my digits will go pure white. Like a dead person's fingers with no blood circulating. They feel numb and clumsy and it's impossible to do manual tasks during an attack. Occasionally I get blue/purple fingers too but it's mainly just the white. Some people find the attacks painful but I've never found this to be the case. The ulcers were agonising though.

My advice if you do have it is to keep your core body temperature warm, not just your hands and feet. If I keep warm throughout then i'm less likely to have an attack even if the hands/feet are exposed to cold. We have had to keep the heating on more at home even though it's expensive. It's a choice between that and possibly getting ulcers again which can lead to gangrene.

Another tip is to take photos of your feet if there are any outward signs of Raynaud's. I did this and showed them to the consultant who said it was really useful.

I am a member of a Raynaud's support group on Facebook and you'd be welcome to join that for advice and support.

I hope this has helped. Naomi, xx

Hi

When I used to go into bath, there were several people with this
They used to have this black stuff IV naprox (?)
But they had these heatty uppy gloves...

Umm
It looked very painful

Maybe Iloprost jenni?

zena, i tried the heat things and agree bit heavy,i was sore after using them i do tend to sit with my feet on a hot beani ontop of a cushion and one for my hands i feel like a bag lady,goodness knows what i look like, i have managed to knit myself a cadigan or 2 with arran wool not a man made wool but the proper wool(better for heat) and they are so warm, better yet i used the odd bits and done myself a wool hand muff yeh great and so good all i done was knitted a length and width i wanted stitched the ends together and weh heh a muff and my daughter lined it with some old fur scarf she had,so i can have wool one day fur the next,brilliant,i love it,my friends little grand daughter uses it when she is round reckons she is a queen!!!! with it kids eh,dorothy

will say i layer up alot more these cold days,i never would have before but the little vest tops are great.

Thanks for all the help - it is really useful. I'm a bit concerned because I'm having my bunion operated on next month and wondered if it might affect the healing. I'll just have to see what happens.
Keep warm folks
Sue

Dear RA friends,

I think, I am a candidate as well. I seem to have been suffering from poor circulation to my feet all my life, can even remember having chill blains as a little girl. This year, though, the numbness in my feet seem to last all night even when my feet have warmed up. My feet are not painful just completely numb, and one of my toes has gone blue, although I don't remember, anything hitting it.

I am on Cimzia, and I was reading under rare side effects, that one can develop Raynaurds with added purplish skin discoloration and appearance of small red veins, which I have all over my ankles. This I have had for quite some time, even before I went On Cimzia. I just wonder if the Cimzia is aggravating a condition, which I have been living with on and off for years, but which I just got on with. I am loath to stop Cimzia, which is helping me to keep reasonably well. I have been on it for 2 years.

What do you think? Is it back to the rheumy team. I just had a steroid injection 3 weeks ago in my knee for a ruptured Bakers cyst, I mentioned the numbness in passing, but the doctor did not make any comment. Since then the condition has gone worse, and it is really bothering me at night.



Merete