Nifepidine results?: Hi all! I'm new... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Nifepidine results?

a_in_gsr
a_in_gsr

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 :)

20 Replies

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.

a_in_gsr
a_in_gsr in reply to Heleno

Okay thanks for your sharing! I hope so too :)

I think it's all about getting the correct dosage, I did try it for a while but on amlodipine now instead. Good luck!

a_in_gsr
a_in_gsr in reply to Fishie1

Ahh okay. Thank you!

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.

Fishie1
Fishie1 in reply to wednesday

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.

a_in_gsr
a_in_gsr in reply to wednesday

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!

wednesday
wednesday in reply to a_in_gsr

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 !

Ahhh wow thats great to know :) For me its also seeming to help, even with just 3 days!!

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

a_in_gsr
a_in_gsr in reply to Poshcards

Thank you so much!

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.

K 😊

a_in_gsr
a_in_gsr in reply to missbee73

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.

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.

a_in_gsr
a_in_gsr in reply to Berniz

Okay thank you!

I use it gud raynauds it helps me a lot been on it fir a few years now

I have been on it for years now, year-round and it has helped me tremendously. I would never stop it at this point

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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