i have just started taking nifedpine ... - Scleroderma & Ray...
i have just started taking nifedpine an feel better already...once on it do you continue for ever or do you have to take a break from it? x
I've recently started on them too...I agreed with my GP to only have them for a month then stop...if my symptoms come back then my GP will give me more x
Happy for you sandycharlie. Nefedipine has made a big difference for me and I'm delighted you find them helpful. As to wether you should have a break, well I would say take them until at least the summer but try to keep some just in case you need them from time to time in the warmer weather.
I have Nefedipine on repeat script as I often need to take some even in the summer. Whatever you decide about long term use, be sure to discuss it with your GP. In the meantime, continue with this treatment for as long as you need to. It is soul-distroying to be constantly cold so don't worry and enjoy the warmth these tablets give you. Well done!
gragirl1
I agree with graygirl1 - I generally stop taking them during the summer months but it depends ... I've got them on repeat now too (have been taking them off and on for years now) - don't know what I'd do without them!
Good luck
I entirely agree with graygirl1.
I can leave it off in the summer months .If its warm enough last year was on (low in summer ) on all year .At least you need to be on it during the winter and cold weather .
I find the g.p may not know enough .The best is to ask the rhumeolosit .The ins and outs on how the pill works is if you stop taking it .It comes out of your body quickley .
Zenabb ..my rheumy said in November that I can take something for the winter months but as my raynauds wasnt severe I said I didnt need anything...its only been really bad since we've had this really cold weather...hence starting on nifedipine, so I'm hoping I wont need to take them for months on end...I have noticed a huge difference being on them but the only way I'll know I might not need them is to stop them. If my symptoms return then the GP will continue to prescribe them for me. Fed up with rattling with all the pills I take so if I can take less then I'll try without....hope that make sense lol
I take them all year round, and even wear Ugg boots in the office in the summer. I even tke them when I'm abroad where it's warm, but then I probably take fewer. I find the side-effects come back if I stop taking them and then re-start.
Kathy
thanks all for your replys, i will be happy to stay on them all the time if they make it better, so far i've not had any side affects..(hope it stays this way..haha)..at the moment i have got sores on two of my fingers which are really sore and itchy...have been useing sudocream, hoping this will help clear it up...xx
Hi sandycharlie
Iv been on nifedipine for 2yrs now even thru the summer because lets face it our summer isnt really that warm. i find that being on them has helped so much i have severe raynaurds and theres no way i wud even think of not taking them. the sores on ur fingers come from lack of oxagen carried by the blood into tips of fingers and they can become worse when fingers r cold all the time so i stay on tabs and try not let this happen as they take a long time to heal. in summer i take maybe 2 10mg per day but at min im on 4 10mg a day i dont think iv had any side effects a sore head mayb when i first started them but that was it. I take one 30mins in morning b4 i go out and if i didnt my hands wud be snow white so i take them bout 3hrs apart thru the day.i use double base or diprobase for my hands iv tried sudo crem into the wee cuts then these creams on top try keep hand really moist all time and not in an out of water as this will dry out ur skin..hope this helps x
hi fruitpastle,
thanks for your reply, yes it does help wat you have said, i am doing all that you have said and my sores are getting better slowly but there getting there. i am finding the tabs are helping my hands are a lot better, the finger tips still get cold but no where near as bad as before i think i mite need to up the dose but i will wait till i go to the docs, i don't mind if i stay on the tabs all year.. i use cocoa butter on my hands and also e45 cream...thanks again all for your help as i am only just been diagnosed i am still trying to get used to the problems...thanks all xxx
i know i was only told in dec last month but i knew in my head what i had as i has researched it all. its hard toget ur head around but the biggest thing that has really helped me is not to get stressed over any thing.it really affects ur body what thgts u keep in ur head my flare ups r not as often as they were.Today i went to pik up my kids frm school with a hot waterbottle in my arms lol i cud care what people think no one even noticed but it was feckn gr8 i was so warm!! another wee thing is Alovera gel right into the cuts it stings a little but goes away iv found that to be quite gd for healing them.. stay warm and try not to worry bout it all just learn to adapt ur day to day life by always thinkn ahead on how ur gona keep warm and always carry a pk of nifedipine with u incase u need an extra one my doc okayed this and iv taken one less than 2hrs apart because i just cudn get blood bac into hands. this is a gr8 site with loadsa wise helpful people 
take care.
Tip for the hotwater bottle. Fleeces tend to have draw strings at the bottom to tighten them. Sticking a hot water bottle inside then zip up ^_^. Notably, 'hoodies' provide a similar function. I find that a good half pint bottle is really portable.
Of course, picking up a snuggle hot water bottle cover from the RSA can help you not look quite so daft! Of course, they also sell wheat packs. (Note, that these items can be picked up elsewhere too).
Raynauds is generally nothing like a headache, you either have it or you don't it cannot be 'cured' (yet). It 'can' disappear on its own however, teenage girls usually find it vanishes and secondary Raynauds really can just disappear if you manage to prevent whatever is causing it. On the other hand Nifedipene cannot cure Raynauds, nor can it change the behaviour of your cells, it's more of an override function. If you come of it, the Raynauds 'should' unless it has gone on its own, return within a matter of days or weeks as the Nifedipene cycles out of your system.
You are effectively on it for life, three times a day every day after meals. >.>
It is very much an individual choice together with your doctor. Some people just take nifedipine during the winter months and leave it off over the summer. It very much depends on the weather. If we have hot summer months (no chance!) then it would not be of any value taking it then.
