The colder weather is starting to set in, so the Topic of the Month for October will be Raynaud’s phenomenon.
About 20-30% of lupus patients develop Raynaud’s phenomenon (spasms in the blood vessels causing cold or white fingers or toes).
We’d love to hear your tips for keeping your extremities comfortable throughout the colder weather. Please comment below, or email your tips to paul@lupusuk.org.uk
I have a little heat pack in my jacket pocket that i activate when my fingers get too cold.
I have just started taking nifedepine. Seems to be working well so far. Plenty of holidays also help. Just about to go to Egypt for a couple of weeks. Yipee!
Hi Jo,
You say that you are taking Nifedipine for your Raynauds. Do you also take Warfarin ? I just wondered, as I am seeing my GP next week and wondered whether to ask for this medication as well unless the Warfarin is doing the same kind of job.
Thanks,
Peter
Hi peter, just taking the nifedepine and so far so good. It was under rheumy's instructions.
I have been taking amilodipine for over a year now and it's great. Yes, I still need to wear gloves outside and be careful not to do stupid things like touching cold metal but I don't go white inside now. Big improvement and no side-effects at all so far (touch wood!) That's after putting up with Reynaulds for years because a GP said "oh, well the side effects from the drugs would outweigh any benefit you would get" and stupidly I believed him...
Otherwise, thinsulate gloves and those gel packs that you click are great. And oven gloves for the freezer as well as the oven.
Jennie
I have a little heat pack in my jacket pocket that i activate when my fingers get too cold.
I use Silver gloves under thinsulate gloves when out just silver gloves inside when things get bad, sheepskin boots and slippers (Celtic Sheepskin) hotrox hand warmer, far more efficient than anything else I have tried. Lot's of layers to keep core temperature up. If all fails then the only thing that will bring back circulation is hot water but have to use thermometer to test temp as by then everything is numb. It's all about prevention rather than cure. I wear socks all year and started back with the gloves in August.
I do have heatpacks for emergencies but they are too expensive to use as a daily solution. So I rely on hugging a cup of coffee when I get to work, or putting my hands in a bowl of warm (not hot) water. Where do I get those silver gloves please? I already use thinsulate gloves and they don't do anything to reverse the loss of blood once it has started. I'm glad I drive an automatic - I tend to sit on my hands (one at a time, obv!) while I'm driving to bring them back to life. Best tip is to find ways to stop it happening in the first place (i.e. keep warm at all times) but that isn't always possible.
Silver gloves available from Raynauds and Scleroderma Association raynauds.org.uk/. I have the hotrox hand warmer yes it's £30 but it's rechargable and lasts for up to 6 hours on one charge. I keep mine with me all the time.
I find the beanies you pop in the microwave are fantastic for warming you back up. I wear thin socks under big thermal ones - this does mean wearing boots a size bigger than normal. Thermal gloves with fingerless gloves over the top. Plenty of thin layers, ie vest, t-shirt, blouse, jumper and then a cardigan. then i wear a gillet under my coat which means yet again having a coat a size or two bigger.
I may go around looking like mitchelin man, but at least I am warm.
My two bits of best advice though try not to let yourself get cold in the first place, and if you do DON'T hug the radiator or anything hot, just warm things.
I suffered from Raynauds as a child with white, numb fingers and toes. My mother used to bathe my feet in warm water, and tell everyone I had a "poor circulation".....we had no idea it had a diagnosed name back then in the 50s and its only since 2005 that I've known about it.
I was feeling the cold badly, dreaded winter and those ice cold winds that make your forehead hurt. Having being diagnosed and treated for SLE with Plaquenil in 2005 the Raynauds has improved greatly. I still get cold hands and feet but the numbness is largely gone. I run my hands under warm water if gets too bad and wear socks most of the year in and out bed, and I've got an assortment of gloves. I'm also on ramapril for blood pressure and I feel thats helped things too. I wore my gloves for the first time this year to go to the corner shop a couple of days ago, came back with warm hands and I've used thermal gloves too....I'd love to spend holidays in warmer climes but never been able to afford to....
I have dreadful problems with numb / white fingers & toes, which comes on really suddenly & takes ages to go. It's not always caused by cold. The consulant says its probably carpal tunnel, but it sounds more like Raynauds. How can I get this looked at again? When the feelng starts to return it is extremely painful. Last year I wore 3 pairs of gloves, felt bit warmer but couldn't use my hands! Time for a rethink!
l also take nefedipine the rummy at hospital perscribed them my fingers and toes used to go white ,stiff and pain full ,l take them twice a day .and helped me no end ,ask doctor if you need the tablets ,
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Hi guys and gals, I find sheepskin gloves best, as even the knitted type gloves let the cold in. Only trouble is getting car keys out of pocket and have to take the pesky glove off to get them out! I have a duvet type coat down filled from Lands End which I have started wearing again. My GP thinks it's great. In bed I wear down filled bed socks. My mum gave me these, so I don't know where they came from. I am not on any meds yet....but I think that I shall need some as even opening the door sets them off. Went and had flu jab yesterday and every time the auto door opened my hands were white blue, white blue. Oooo look at your fingers this woman said.
My GP wanted to put me on on Nifedipine but my blood pressure is too low, one of the side effects is to lower BP. He had read an article in some obscure journal that Fluoxetine (Prozac) works really well on Reynards and we thought it was worth a try because mine was so bad last winter. Well, good news is, I very rarely get an attack now, do occasionally if I forget and my hands gets really cold, but other than that, works really well.
That's great. Thank you for sharing your experiences Sue2803 .
Hi Paul, had a fantastic day at Cambridge on Saturday. Very good. Had a chat with Lupus nurse. What is the situation for us to have a Lupus nurse at Basildon or Orsett hospital. Wouldn't that be great. If needed I would do the necessary work i.e. A petition or what we need to do. I await your kind reply
Hi Daph39 ,
I'm really glad to hear that you had a great day on Saturday. Thank you for coming along.
The best thing to do is discuss the role of a lupus nurse with your consultant and let them know about the others that LUPUS UK have funded. If your consultant agrees that adding a lupus nurse to their team would be worthwhile, then they can find more information about applying for a grant from us.
Hi Paul, many thanks for reply. It seems quite promising. I will see my consultant in December and will enquire. In the meantime I will find more about it. Many thanks
Daph
