Hi! The rheumatologist I last saw has sent a vague instruction to my GP recommending that I take nifedipine “in the winter months”, but not specifying strength, frequency etc.
This is to combat what I think is worsening Raynaud’s in my hands - permanently wrinkled fingertips as if I’ve just come out of the shower, reduced sensation and grip, freezing fingers that go white and painful with cold or simply change of temperature or vibration/pressure, random shooting pains down my fingernails etc (I don’t have actual sores or marks, just very pink shiny skin.)
But this is all the time… it was happening in Spring when I saw the rheumy, and it’s happening now in “Summer”. So when does Winter start?? Haha! 😜 Will I only be allowed nifedipine for 3 specific months of the year?? The rest of the time I just carry on and suffer?? I don’t get it.
Also wondering what the usual dose would be, for someone starting out? I presume it has to be taken pretty regularly to have any effect, not like popping the occasional painkiller.
How do you take yours? x
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Hi, I take nifedipine as and when needed. You CAN just take it as and when as it’s action is pretty quick to kick in, vasodilators are NOT like antidepressants that have to build up in your system over a number of weeks before they become effective. I basically take them twice daily between September and April, I’m on 20mg. In the spring/summer I will go by the weather that day. I’m in Scotland so have needed to take them a few times this summer already. I’ve been on them for secondary raynauds for 22 years.
Take your first does at night before bed as you will probably get a bit of a sore head, some flushing and probably nausea/ light headed for the first few does. Taking them at night helps reduce these symptoms (that’s what my pharmacist advised me) as your sleeping through them.
Aha, thank you so much! I’m thinking that I might need to follow a similar regime to yours, that makes sense. I must have another chat with my gp soon and get it straightened out.
It’s ironic that I don’t really like hot weather (not in the UK, anyway!) but those are the days when my fingers stand the best chance of being comfortable for a while.
I will watch out for those side effects when I do start taking them as well - thank you for the top tip!
I tried Nifedipine but moved to amlodopine as suffered headaches. I have been told to take in winter only and also to take all the time. At moment I'm not taking any as blood pressure was low. Not sure what will happen next.
Long time on getting back to you but I have finally been told to either reintroduce Amlodipine at 5mg every second day or try Naftidrofuryl 100mg three times a day.
I'm on Coracten SR (a slow release nifedipine capsule) 10mg twice a day. I only started this last November, but it's definitely helped and I was lucky enough not to suffer any side effects. My rheumatologist didn't say anything about winter only, so I'm taking it throughout the year.Hope you get sorted soon.
That’s really good to know, thank you! Such a relief when you get the positive effects of a medication and dodge the bad ones 😀 . I will get back to my GP soon and see what we can agree on. X
I take Nifedipine twice daily and have never had any side effects. I was on Amlodipine first but had side effects ie swollen feet and pins and needles running up to my knees. I hope that you find a routine to suit you. xx
I just started taking them after having some really bad finger ulcers that did not heal. Was on 30mg at night and then went to morning and night for one month. No side affects. Back down to once a day and may try coming off it as I’ve had this condition for 30 years and never needed them. My doc said fall and winter too as a precaution.
I taken Coracten SR 20mg morning and evening all year round now. Last year, during a hot period in the summer, I suffered oedema in my ankles, not sure if it was related to the Coracten or Tadalafil..this year I've been fine so far, but would have tried maybe only taking one dose of the Coracten instead.Everyone is different, even though we have the common thread.
I don't often post on here, but find reading everything so helpful, so hope to give back a bit when I do have something I can chip in!
I take nifedipine and it's great. You really need the dosage/amount to be stated by your rheumatologist so I'd suggest calling their secretary at the hospital and they can arrange for another letter to be sent to your GP with more info.Side effects - unfortunately I get water retention but that's normal with nifedipine and my reynauds is so bad that I don't mind to be honest.
Once you're taking it (always in the morning) you will start to notice the difference and then you will know which days to avoid taking it. For example - I take it all through autumn, winter and spring daily. If I forget in the morning then I know that day is going to be full of reynauds attacks. Come summer, I decide each morning depending on the weather forecast and using my own knowledge of how my reynauds behaves. So I will take one if it's only 16/17 degrees because I know that's still cold for me. If the temperature hits 20 degrees that's when I might have a day off nifedipine because the fluid retention it causes isn't worth it if I'm only having one or 2 attacks on a warm day.
My mom has the same problem but it's progressed more so she takes hers every day, all through the year. I've spoken with other patients who say that they only take it in winter months.
I wouldn't worry about it too much right now, being summer, but maybe get that prescription by September so that you are ready to get started. It's not a medicine that you need to take for a while to get the benefit. You will take a tablet in the morning then you can judge throughout that day how it affects your reynauds but remember if you forget to take it one morning then it will be like you've never taken one before and reynauds is back in full effect.
Hope some of that makes sense, it's early and I've not slept too great.
I do wonder if I will be an all-year-rounder, as even on the few hot days we have, a change of temperature sets me off again. (Outdoors to indoors, sun to shade, getting in or out of shower.)
I think my partner is going to invent a mobile temperature-controlled bubble I can live in, with thermostat permanently set to 21, haha 😜
I'm the same, even on our warmest days I will be set off by pouring a cold dri k or handling veg from the fridge, even shopping with aircon will set me off and I never wear sandals because purple toes tend to be pointed out regularly hahaYou will find the best way to take it for yourself. Symptom relief over side effects is a constant focus. You will always be weighing up the pros and cons.
Best of luck and when that bubble is in trial stage then count me in!
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