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Scleroderma & Raynaud's UK (SRUK)

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Nifedipine

Mezgit profile image
28 Replies

Good morning everyone. I am on 3 ×5mg Nifedipine and still get some Raynaud's in fingers (I am using an electric blanket in the photo as gas in the UK is now far too expensive) and in cold weather in feet, outside. Does anyone have the same problem?

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Mezgit profile image
Mezgit
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28 Replies
Krazykat26 profile image
Krazykat26

I've found that a thin pair of fingerless gloves really helps to keep my fingers warmer. I can tuck my long sleeves into the tops of them too when I'm trying to keep the core warmth and still do stuff.

Mezgit profile image
Mezgit in reply toKrazykat26

I haven't tried those ones yet. Sounds like a really good idea. Thank you

OldTed60 profile image
OldTed60 in reply toMezgit

I find mittens work better for me than gloves because my fingers are better off when they can keep each other warm. I have rechargeable hand warmers for pockets when it’s really cold. I too use heated blankets a lot and dress in layers

Mezgit profile image
Mezgit in reply toOldTed60

Yes I was thinking about mittens... they are easier to put on and take out. But if at home, I suppose you can do some chores with fingerless gloves more easily?

I tried basic hand warmers and couldn't manage to use them. Rechargeable ones sound more efficient.

Krazykat26 profile image
Krazykat26 in reply toMezgit

You're welcome ☺️Sorry I should have said that I wear the fingerless gloves indoors..all the time. When I go out I keep them on and put a silk pair of gloves over the top of the fingerless. I have a muff too and rechargable handwarmers. Indoors I also wear a thin chemo hat and a light silk scarf that I wrap twice around my neck. It stops the draughts n helps keep my core warm. This is all INSIDE the house though 😹Hot water bottle is my best friend too.

Mezgit profile image
Mezgit in reply toKrazykat26

Thank you. Yes I also have 2 different sizes of hot water bottles. I take the small one in my bag when I go out.

Chumpy profile image
Chumpy

I'm on 60mg a day struggling at the moment as it has dropped colder my fingers hurt from when I get up to when I go to bed I'd love to say I have found something that has helped but not at the moment

I suppose the medication makes it a little bit

Mezgit profile image
Mezgit in reply toChumpy

That sounds really difficult ...🤍 Do you also have a strong side effect with that dosage?

Chumpy profile image
Chumpy in reply toMezgit

It's not the best but you sort of have to learn to live with it I spend a lot of time outdoors as well which doesn't help but I have horses & they need looking after Side effects not that I have noticed I have had to come off hrt as that was making my raynaurds worse

I've finally got an appointment with rheumatology next week so fingers crossed can get some answers/ help

Mezgit profile image
Mezgit in reply toChumpy

Amazing to have horses 😍! Wish you best with your appointment.

Chumpy profile image
Chumpy in reply toMezgit

Thankyou😊

Fishie1 profile image
Fishie1

Lots of layers. Remember to keep neck and wrists warm too. Mittens are better if using hand warmers and I used feet warmers also when I visited Krakow one February. Good luck!

Mezgit profile image
Mezgit in reply toFishie1

I've never looked into feet warmers and my feet get really numb from Raynaud's. I will check them out. 🤍

mesally profile image
mesally

I use rechargeable pocket warmers,

Mezgit profile image
Mezgit in reply tomesally

I saw some on Amazon today. Will order them soon. 🫶

Gadoop profile image
Gadoop

Hi Mezgit, I am not on Nifedipine but my raynauds does get quite bad. My rheumatologist suggested double gloving when outside and this has really helped me. I wear thin fingerless gloves underneath and then woolly mittens on top of them. I also always have my rechargable handwarmers in my pockets. And as someone else said make sure to keep your core warm so just wear layers of jumpers and coats outside also (and thermals!). For this winter I also got myself a pair of proper fur lined winter boots and thick winter socks and it has been a game changer. I must look a bit crazy when I go to the school gate to collect my kids with all that I wear🤪 but I feel wonderfully warm 😊

Mezgit profile image
Mezgit in reply toGadoop

I always wear layers now and double gloves but fingerless and mitten combination sounds really practical 🫶

cls_98 profile image
cls_98

HiI'm on 30mg morning and afternoon, so 60mg a day, as well as 20mg tadalafil in the morning. I still get attacks, but they aren't as bad.

Cx

Mezgit profile image
Mezgit in reply tocls_98

Thank you. Looks like I need to ask them to increase the dosage myself. 🤍

LadyTrundle profile image
LadyTrundle

lots of really good practical advice here. I agree with all these tricks and tips! I have a vast array of gloves, mitts, heated gloves and mitts, hand warmers, muff, thinner gloves etc. what I use varies with what I’m doing (extra large rubber gloves over heated gloves are bulky but help with some wet/ outdoor tasks!), the time of year and fluctuations in outdoor temperature.

However, what I want to add is that after 30+ years on nifedipine and never being very convinced it helped much but too intimidated to stop altogether, the team at Royal Free suggested adding in Losartan potassium which has really helped. So I now take 1 losartan 25mg year round, then another early summer/ autumn depending on weather, then add in 1 nifedipine as it gets colder and one more nifedipine if it gets really cold it’s up to me to take the doses up and down depending on conditions. But in gen the RF people advice taking a higher than you imagine dose to keep the blood vesssels nicely open.

Mezgit profile image
Mezgit in reply toLadyTrundle

Thank you. I will definitely look into Losartan. Do you get any side effects with that? 🤍

LadyTrundle profile image
LadyTrundle in reply toMezgit

No - inline nifedipine it doesn’t seem to give me any headaches or low blood pressure, even when starting first time or layering up. Joy!

LadyTrundle profile image
LadyTrundle in reply toLadyTrundle

In fact, on reflection, the adding in of nifedipine on top. As much smoother than when I just went from nothing to nifedipine each year

Mezgit profile image
Mezgit in reply toLadyTrundle

Lucky! My blood pressure is already low 😔

Midgebite21 profile image
Midgebite21

I think you may need a higher dose. I’m on 20mg.

Agree with all other advice. Layers, layers ,layers and avoiding triggers AMAP.

Merino wool hiking socks and shearling lined boots are my go to for my feet in the Scottish 🏴󠁧󠁢󠁳󠁣󠁴󠁿 winter. My slippers are shearling lined as well. So far I’ve avoided chilblains this winter even with the very low temperatures we’ve had recently.

Mezgit profile image
Mezgit in reply toMidgebite21

I will ask for a higher dose. Only downside with that is I have low blood pressure already and due to some feet problems I can't wear my nice warm boots...

Ciaran34 profile image
Ciaran34

Wear socks to bed to sleep for sure. It will help keep your hands warm. If needed wear gloves or comfortable mittens too. During the day always a hat, lots of layers and always gloves or mittens.

Mezgit profile image
Mezgit in reply toCiaran34

Thank you 🫶

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