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Scleroderma & Raynaud's UK (SRUK)

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Advice please....

LiseHickin profile image
9 Replies

Hello,

I've been diagnosed with Raynards and my Doctor suggested medication for the constricting bllod vessels etc. I'm still getting my head around this condition (reading on the internet and this site).

My question is - are the tablets worth taking? I don't really want to start taking tablets but controlling my hands and especially my feet is becoming more and more difficult.

If anyone can share their best practices at keeping our hands/feet warm - I'm all ears...

Thanks in advance xx

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LiseHickin profile image
LiseHickin
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9 Replies

What "tablets" there are so many out there, adalat etc.... Everyone is so different, you will find some take the Adalat (Nifedipine) 10mg twice a day, some may have 20mg, others just once a day (that's just one tablet). Basically keep the extremities warm (hands and feet). You say your doctor, is this the GP? He/She should refer you to a Rheumatologist who is more experienced in this condition. Some people find some of the medication helpful and others find it exacerbates the condition. So best be under the guidance of a specialist.

Blue-Bunny profile image
Blue-Bunny

Nifedipine is the standard drug. Though if you want something more natural, some research actually indicates that the Ginkgo (Maidenhair) tree can have Nifedipine like qualities, though it isn't quite as effective. (Make sure you let your doctor know as it can have complications for other medicines )

Nifedipine works for some people but not others but it's the best bet to begin with

Hiya have you checked out the rsa site at ww.raynauds.org.uk ? there is a lot of useful info as well as the different types of drugs used to treat raynauds - everyone is different with different symptoms eg I have never had nifedipine - I got put straight on to the stronger alternatives including iv Iloprost, which I avoid at all costs now, where as I have a friend who loves it as she gets so much relief from it... so try around and see what works for you, at the same time, keeping warm and preventing the attacks :)

Tillyws profile image
Tillyws

im on adalat and have been for two years, it works on a daily basis, so if you forget to take it, it wont help, you wont be covered from the previous days tablet. Mine only seems to work for half the day however, I'm only on one tablet a day, but the next level up made me go bright red within half an hour of taking it. You cannot take this table with grapefruit so if that is your choice of breakfast (it was mine) you can no longer eat it.

I would personally say to give it a go, I left this untreated for over ten years until I could literally bear no more.

Bethanna profile image
Bethanna in reply to Tillyws

I have been on adalat 90 mg for a number of years . Iv had no pins & needles in my arms since .

ceefa profile image
ceefa

I have taken Ginko also garlic capsules for about 10 years now & find the condition has much improved but i also now am more experienced in avoiding problomatic situations and now how to keep hands warm.

graygirl1 profile image
graygirl1

I have found Nefedipine to be very effective with no ill-effects. I've been taking this for about a year. I am so glad my GP asked me to try it as I am more comfortable. Why not try it and see how you feel? Every patient is different but I think a lot of Raynaud's sufferers have had good result from this type of medication. Good luck!

graygirl1

tinaparkii profile image
tinaparkii

I take nefedipene also. Works for me. I did try the adalat slow release but done nothing for my hands and I felt lite headed and dizzy constantly. So went back to normal nefedipene. Although they R called adalat nefedipene but not the slow release. 3 x daily I take a 10mg. Don't stop the pain in my arm and shoulder but do defo open the vessels. Can't miss a dose as my hands starts an attack straight away. Good thing really. But hate waking up in a morning. Feel like my arms R not mine. Good luck. Worth giving them ago x

bookworm profile image
bookworm

Hiya hope this helps am on nifidepine - 3 times a day (5mg), which helps when I remember to take it, wearing scarf inside and out, not getting stressed easier said then done. Stocking up on gloves in the sale, plenty of layers, not going round bare foot wear slippers. Chatting on here, looking at the RSA website. Wearing gloves whatever the weather, sometimes it can be just a slight change going from room to the other, so wear gloves. Air conditioning you might have to wear gloves and wear gloves to help. Also the fridge and freezer area of supermarkets. Take care :)

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