Hi all! I'm new here; and have been diagnosed with Raynauds since forever!
This year things deteriorated rather badly, and I started to really be affected by how painful all my extremities were; plus I developed really bad chillblains on my toes.
My doctor has just begun me on Coracten (nifedipine) and I was wondering if anyone saw results on it / did it work for you? I had never heard of using a high blood pressure med for Raynauds but apparently it is quite common? I am only on day two but am excited to (hopefully!) see some results
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a_in_gsr
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Hi, I take nifedepine every year from autumn through to winter. For me it does help with shortening the length of an attack and maybe a little bit with the frequency of attacks. Hope you get some results yourself from taking it.
I would love to know if it works for you. I have had Raynaud's for about 14 years, didn't know what it was at first, doctor just told me to keep warm which I do. However over the years it's got worse and even my feet go numb, the doctor said I had chilblains, I used to get these as a child. I have never been offered any treatment or referred to hospital, which is frustrating. I am desperate to get to see a doctor but due to covid can only get a phone call, I am not confident on the phone and would prefer to do it face to face. I know that I now dread winter, even though I get it most of the year except summer. I wear a pair of woolly gloves inside sheepskin mittens but they still go numb.
It is really important to keep your core temperature up. I have had to work with windows open due to Covid and as long as I have plenty layers on I have managed most days. The wind chill where I live is a real problem for me.
Ahhh yes I too have seen a decline in symptoms throughout the years!
Not being offered anything is frustrating! Have you spoken to someone specifically about it? I just went to my doctor and shower her my black toes and I think that was enough 😂 eek. Post lockdown I would definitely go - even on 3 days of this medication my toes are significantly less painful!
Yes I will definitely speak with my GP, fed up now with it. I have an other issue which doesn't help which is called Dupuytren's contracture, my fingers are bending into the palm which restricts movement. I need to have an operation when it's possible, have had the other hand done for the same reason.
Hi, I have been on Nifidapine for about 8 years now, I only take it through the Autumn and Winter months and it makes a huge difference I hope it works for you, good luck !
Hi, I have been on Nifedipine for Reynaud's for years now and it certainly helps, on the whole my hands and feet are a lot less painful and stay warm. You still have to glove up going out etc but much better than with out drug xx
Hi I've been on nifedipine for about 4 years 2 doses a day with no breaks, prescribed by the Rheumatologist. I was in a whole heap of trouble with my hands and feet with raynauds, ulcerated chilblains and frozen hands and feet (I'm a hairdresser🤦♀️)
Have tried a few medications along the way but this one by far is the best and when I stopped taking it found the symptoms were bad again. I've also had a few short doses of others when an attack is particularly bad but this is the most successful for me. You just have to be a bit careful if you already have low blood pressure as a starting point and no grapefruit juice.
Hope you get on ok and like the other say , keep your core tem warm and covered wrists and ankles help keep you warm along with good gloves and socks.
Thank you! It's great to hear of your positive experience.
I also saw about the weirdly specific grapefruit juice!! I'll make sure to avoid it! I do already have a low pressure so I'll definitely make sure to eat enough salt and things.
Hi a_in_gsr, I am new to this site but not to Raynaud's which has got worse over the years and more so since I got the virus last Spring (unvaccinated as yet). It got so bad this summer, I called my GP. Over telephone appointment, he prescribed Nifedipine 10mg. He advised that I start by taking no more than 1 tablet once a day as my BP is on the low side and the drugs can cause dizziness. I am concerned about starting them now because I sometimes get a little dizzy anytime. I wanted to ask if you have experienced any dizzy spells and how has your Raynaud's been since starting the meds? Also interested in hearing from anyone else with low BP, with occasional dizziness who is also on this drug. Thank you.
I take nefidapine, varying from 30mg. to 9omg, depending on the season. I find it helps bu still do all the other things to keep up my core temperature.
Hi, I’ve been on nifedipine for a number of years now and it definitely helps me. Everyone is different so what helps some people, may not be beneficial to others. Hopefully it really helps you and you get some relief. I also use electric hand warmers - they’ve got a thermostat on so remain at the same temperature. I bought them online, search electric hand mitts. 😊
I have taken nifedipine &. Also a Lodi pine but neither had much effect, so had to put up with extremely painful fingers with blisters etc until I saw another doctor who suggested I tried sildenafil (viagra) & I’ve never looked back, I take one every morning & it’s made such a difference to me.
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