Nifedipine : Hi All, Earlier this year... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Nifedipine

NewBloom profile image
25 Replies

Hi All,

Earlier this year I told I have Raynauds and they think it's primary. Last winter my fingers were really painful and my toes went numb and had cramps if outside for too long. My consultant said this winter, if required, I could try a blood pressure tablet called Nifedipine.

Has anyone on here had any experience of taking this medication and did it cause many side effects?

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NewBloom profile image
NewBloom
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25 Replies
CLSH profile image
CLSH

Hi, I believe it’s the go to medication for raynauds. I took it without any noticeable side effects and found it quite effective.

bertie203 profile image
bertie203

Yes - it's seemingly the standard treatment for Raynauds. I'm taking it, and haven't noticed any side effects.

It won't actually cure Raynauds, but it seems to have reduced any issues I've had - the main reason I was given it was because I was getting some ulceration, and that's gone away now (you'll still want to keep carrying gloves everywhere though).

Sanmateogirl107 profile image
Sanmateogirl107 in reply to bertie203

PRAZOSIN 1MG ASK YOUR DOCTOR. IF YOUR IN PAIN TRY (WILD LETTUCE EXTRACT) EBAY OR MT ROSE HERBS I USE IT. THERE IS ALSO AMLODIPINE, ASK ABOUT CELECOXIB FOR ARTHRITIS AND MENSTRUAL AND ACUTE PAIN HELPS YOU THROUGH OUT THE DAY I AM TAKING 100MG. LOVE JULIE. ALSO GLOVE WARMERS ON LINE FOR YOUR HANDS. KEEP YOUR FEET COVERED AS WELL. HOPE ALL THIS HELPS LOVE YOU ANGEL. LOVE JULIE

Lou1936 profile image
Lou1936

Hi. I'm from the USA, and have been taking Nifedipine for Raynaud's (mine is secondary to my Scleraderma) for about 4 years now. It made a fairly significant difference for me during the late fall, winter and early spring here in the Midwest where it can get very cold and wet. I always take it at night, as it can have a tendency to bring on headaches. Good luck!!

Craftyflower profile image
Craftyflower

I took nifedipine when I was diagnosed 25 years ago, but it gave me headaches, flushing, swelling and made me dizzy. But everybody is different and you might find it works for you, it's worth a try to see how you get on. I wish you all the best :)

Sophiebun11 profile image
Sophiebun11 in reply to Craftyflower

Hi Craftyflower, I too tried it about 25 years ago and got worse and more frequent migraines due to dilating the blood vessels. I'd rather have the Raynauds than a killer migraine. OMG I hope there is never a fire where I have to run out of my house in the middle of the night in the winter. When I go to bed I'm wearing 3 pairs of heavy socks and a pair of ballet leg warmers, long johns under flannel pajamas, a pair of cotton gloves inside cotton knit mittens, and I top it off with a warm cotton knit hat. What a sight for sore eyes. But it helps with the Raynauds spasms so what ever works right?😀🐇

Craftyflower profile image
Craftyflower in reply to Sophiebun11

Someone once said "I'd rather look warm and lumpy than fashionable and cold", which hits the nail on the head. It doesn't matter what others think as long as you keep warm 😊

Sophiebun11 profile image
Sophiebun11 in reply to Craftyflower

👍😀

ScleroSue profile image
ScleroSue

I take nifedipine for Raynauds, at first I took 1 a day and it gave me really bad headaches and face flushing and didn’t seem to make much difference so I stopped it. But my raynauds got really bad so I tried again and after a few weeks the headaches went . I take two a day now and it’s a game changer. I used to have issues preparing food that came out of the fridge, I had to keep defrosting my hands in bowl of warm water and I used to have issues with holding a cold glass or hanging up washing. It wasn’t just outside in the cold, it was constantly happening around the house too. But not now. I highly recommend and persevere through side effects they pass.

tanya1981 profile image
tanya1981 in reply to ScleroSue

Hi sue, I find this really interesting- I tried Nifedipine 5 hrs ago and it certainly helped with my ulcer but I didn’t see much of a difference with the raynauds. Perhaps I should give it another try with a Higher dose? I did experience side effects initially but started taking it before I go to sleep and eventually my body adjusted to it ..

FROSTYGIRL profile image
FROSTYGIRL

Hi NewBloom,

I’m not sure which country you’re in, but when my GP prescribed Nifedipine a couple of years ago, it would appear the lowest dose is no longer available in England. I was then offered Amlodipine as an alternative, which for me was an absolute God send! I have Primary Raynauds. I always take at night time, as my blood pressure tends to be lower anyway. After taking the 5mg for 6 weeks I did experience a little bit of ankle swelling etc. I always get the scored tablets, so in ‘warmer’ periods I only take 2.5mg. Pharmacist suggested this as an option as means I’m still keeping the amlodipine in my system. When you start you won’t necessarily see immediate effects. For me I started to feel real benefits by about 3 weeks, ish. Otherwise for me, no major side effects.

I experienced hideous symptoms as a teenager and into my 20’s things became easier to manage, then I had 3 babies and convinced myself I didn’t really have Raynauds anymore! As I started to gradually enter that next hormonal stage that us women do 🙈 symptoms started to reappear big time. Almost 4 years ago, along with increased white fingers, numbness in both fingers and toes, I also started to experience more pain and cramps. Therefore, I find it interesting you mention cramps, as I was told they were nothing to do with Raynauds? I would go to bed feeling fine and be woken suddenly with cramps in my feet and lower legs that to be quite frank were nauseating at times and difficult to resolve. The best way to do this was by gritting my teeth and standing as best I could to allow circulation to return and then walk around for a bit. I was prescribed Quinine at night time for this, as a 3 month trial. Not ideal and to be honest, only really numbed the pain slightly, but did not resolve. Sometimes I also experienced cramps in my wrists. Even if it’s only in my head!!, long term use of Amlodipine seems to have helped me a lot and I take all year round, keeping to a half dose over the warmer weather, just increasing when necessary.

When my symptoms did flare up a few years back, it all coincided with me experiencing something called Achenbach Syndrome. A benign condition that unfortunately found me being stuck on a stroke ward for and then undergoing both CT & MRI scans of my head. Rightly so, due to the symptoms, but quite scary at the time. The reason I mention this is that all these symptoms appeared around the same time as my hormones were clearly warning me!!, I’m now in that period that we refer to as the perimenopause!, and now 53. Having read threads on here and having joined SRUK, I have seen this syndrome mentioned several times and other women in a similar stage of life experiencing worsening symptoms with Raynauds.

Nifedipine, Amlodipine or similar don’t necessarily work for everyone, but I can confidently say it works for me. I do still have to wear silk liner gloves inside my winter gloves when I walk the dog, along with a couple of pairs of socks. Sheepskin liners are great in any boots etc. ‘R’ is still with me 🙄 but definitely more manageable.

Best of luck 😊

NewBloom profile image
NewBloom in reply to FROSTYGIRL

Aww Frostgirl, You really been through it. Best wishes to you. XThe feet cramp could be my other condition as my bloods too thick. I have three conditions and not really sure what's causing what these days.

NewBloom profile image
NewBloom

Hi All, Thank you so much for your responses. I'm so pleased to hear in most cases Nifedipine is tolerable and appears to work. X

Midgebite21 profile image
Midgebite21

Yes I’ve been on it for years, I only take it in the winter months and it does help.

It is an antihypertensive drug called a vasodilator, it works by dilating (opening) the peripheral (small superficial) blood vessels thus lowering the blood pressure systemically. As Raynauds is due to the constriction ( narrowing) of the peripheral blood vessels nifedipine works well at opposing this.

You may find you have a headache and feel a little dizzy lightheaded when you first start taking it but it soon settles down. I take my first dose of the autumn in the evening so that I sleep through the sore head and dizziness then take my second dose at breakfast the following day, usually by this time the side effects are minimal. The other drug they may consider is sildenafil (Viagra) which is also a vasodilator. It’s association with erectile dysfunction is a happy side effect of its effect on the circulation and doesn’t affect your libido 😆

bluedolphin2 profile image
bluedolphin2

I was on nifedipine, but then there was a supply problem in the UK,so they put me on Lorstan instead, for both high blood pressure and Raynaud's. Not sure it's connected but I had dry mouth with Both of them.x

redmaggie profile image
redmaggie in reply to bluedolphin2

Hi there, I had the same dry mouth with these drugs, and I discontinued. Did you find any other medication which helped you? Thanks!

bluedolphin2 profile image
bluedolphin2 in reply to redmaggie

No, still on them, but now I have Sjogren syndrome, which is dry mouth and Eyes. Have you changed medication?Eyes drops for the eyes, I'm waiting to see if they give me medication for the dry mouth.🌷

redmaggie profile image
redmaggie in reply to bluedolphin2

hi bluedolphin , sorry to hear you have Sjogren's. I am suspected of having that too. the dry mouth with the drugs preceeded a widespread drying up this spring (despite cutting out all suspect medications). It's a bit miserable as you know, and have bought various things to relieve it, but nothing's perfect. I have been waiting 2 years for a follow up at Royal Free (rheum dept).... my phone appointment is in 3 months. GP doesn't want to get involved because I'm supposedly with the Royal Free. Everyone's waiting at the moment. xx

Poshcards profile image
Poshcards

I have been taking this for years now and I am fine on it, during covid they stopped making it and I certainly missed it , my hands and feet are quite good on it but my nose is always cold xx

Dizzy64 profile image
Dizzy64

Hi Newbloom,I've been on Nifedepine for about 7yrs, started off on 5mg which did nothing so GP put me on 10mg and have to say it's been brilliant.

My Raynauls started in the summer 2011 when the tip of one finger turned white, never thought anything about it but gradually got worse and the pain, tingling at night especially and you can't get rid of it or do anything. What made me see my GP was tingling, pain and my hands turning purple, took pictures with my phone and then received the diagnosis of Rayaulds and had never heard of it before.

Nifedipine opens the capillaries to let the blood flow to your fingers. I haven't noticed any side effects at all and find it works well, there's also a slow release form which I get given if the Nifedipine isn't available that works well to.

In winter I feel the cold and never used to so I wear ski gloves and thermals.

I hope this helps and wish you all the best and keep warm.

Berniz profile image
Berniz

I take 30-90 mg. a day depending on the weather. I have had no side effects I think it helps a little.

Fern77 profile image
Fern77

Hi, yes!! Amazing drug for my Secondary Raynaunds. I couldn't get out of bed for months until I dragged my ass to the Dr's. I have it most days. It's can be an horrific crippling disease. You'll have to have your gloves handy all weather's... I cannot bare any draft, not even in summer. if offered -take it!

kimar profile image
kimar

I also have Raynaud's (primary) and experience the same as you. I was not able to take the nifedipine due to low blood pressure. I wish I could try it.

NewBloom profile image
NewBloom

Thanks all your information is so appreciated. I'll give the drug a go this winter. Next mission is gloves.

i take it and had no problems

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