Hi, I've had Raynaud's for many years but it has recently become quite severe and i'm struggling to do everyday things like walk the dog, type etc because my hands are so numb and sore all the time. I have tried Nifedipine and unfortunately had to come off this due to the side effects. I manage with heated gloves at the moment when outdoors but I wondered if anyone else has come across anything that has helped them?
Thankyou 😊
Raynaurds is very difficult to treat. There are so many meds ou there. Nifedapine is the first drug that they will try you on. I've had everything over the years and could not tolerate any of them, you will probably find that most will have the same kind of side effects, dizziness, headaches and so on. I'm on 6 monthly Iloprost infusions now, side effects not great but they go as soon as the infusion is stopped. Can only suggest that you see your doctor, if your Raynaurds is getting worse may be worth asking for a referal to Rheumatology, good luck, keep warm.
Thankyou I will try that 🙂
I have secondary Raynaud's so am under Rheumatology, it was very severe when untreated, I got side effects from nifedipine so switched to amlodipine it has a milder effect but fewer side effects.There are various other drugs that can be tried including things like fluoxetine & Viagra.
If you Google the EULAR guidelines for systemic sclerosis (which causes Raynaud's amongst other things) there is a chapter on its management
Hi, I'm probably just suggesting what you already know/have tried, but have you tried wearing lots and lots of warm layers (as well as gloves) to get your core too warm? This should dilate the blood vessels and get more blood flowing to your arms then hands.
Thankyou, I do wear a lot of layers but could try to wear more and see if that helps!
Hi, I find wearing thermal vests or T-shirts and layers keep my core warm in turn helps with my hands. I like sheepskin gloves for outdoors and thermal socks. Don’t know if you’ve been offered sildenifil but that is another option medication wise. Good luck
I have tried every medication, and had illoprost as a last resort, but this does not seem to have much effect either. This may be because u could only tolerate a low dose as my blood pressure kept dropping. One thing i have found useful when out and about is a hand warmer called hot rox (suggested by my rheumi). I can carry it in my pocket and turn it on for instant warmth, and they are rechargable.
My rheumatlogist prescribed me a Nitrolingual Spray which is used for angina and I just sprayed it directly onto my hands which worked very well . It didn't have the same side effects as when you take it orally. Good Luck.
Someone on here told us about Rectogesic ointment (normally used for a different problem) which dilates the blood vessels. However you would need to wear disposable gloves all the time. I like the sound of the nitrolingual spray.
Yes the nitrolingual spray could be a good option 👍
Good Morning Frosty!
I have had Raynaud’s like yourself for many years and like you mine has got worse, culminating in digital ulcers on my fingers last year.
I went to see Dr Voon Ong at The Royal Free; after many blood tests and a capillaroscopy to decide if I was suffering from primary or secondary Raynaud’s, he prescribed Sildenafil. I have been taking this since September, slowly increasing the dose. I have had a much better Winter so far, with very few side effects from the Sildenafil.
Definitely worth looking into. I’ll keep my fingers crossed for you, as I know how debilitating Raynaud’s can be.
Possum insoles and gloves when walking the dog ... available from kiwicountryclothing.ie ..... expensive but worth trying. I also go out with a hot water bottle stuffed up my sweater ... it works a treat! The insoles are amazing as they don't bulk up your shoes but are really insulating make an enormous difference for me.
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