I am on diltiazem and my new dr. want... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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I am on diltiazem and my new dr. wants to put me on nifedipine

danacetz profile image
18 Replies

but I am scared to try it since it could cause blockage or symptoms of a heart attack. Anybody have any severe symptoms?

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danacetz
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18 Replies

Have tried Nifedipine for 4 weeks. I have Raynaud's and Scleroderma in my feet, which is severe. The Nifedipine has made me feel much colder, loads of headaches and also actually made my feet worse. But bear in mind that's just me :( so for someone else it could be fine?

ceegee profile image
ceegee

for the 1st couple of weeks the nifedipine had some slight side effects but battled on while my body got used to it and now i am on 30mg 3x a day.

also you must remember that nifedipine is a blood pressure medication 1st and foremost so some slight side effects will occur if your blood pressure is fine. You wont know how it will effect you unless you give it a good couple of months trial.. same as any medication

zenabb profile image
zenabb

I have been on nifedipine for many many years both for my circulation problems and my blood pressure. I am now on 90 mg. It is he drug of choice for Raynaud's. But I started slowly. Give it time.

smiler2012 profile image
smiler2012

Hi,I was diagnosed with CREST 12 years ago and have been on Nifedipine for about 2 years.I started on 20mgs twice daily but I had rashes and swellings at the bottom of my legs.It was reduced to 10 mgs twice daily and I coped well.It was increased to 20mgs twice daily 18 months ago.Although I still have some marks on my legs the benefit I get from it are worth it.My circulation is not good but I have very few Raynaud's attacks.I understand your reservations when starting something new as I was really scared when I had my first iloprost treatment but both these treatments are essential for me.Make your doctors aware of your fears and I wish you well.

jamesecoker profile image
jamesecoker

Hi there, just joined up today and this is my first official blogg post on here:) I have been Nifedipine now for several months from my GP. Three ties a days 20mg so 60mg a day. I think it has improved my hands, in the aspect that I get less attacks but my skin is very very sore and tight. I have Raynauds through Scleroderma of course (secondary like probably you guys on here). Its a horrible condition and it causing to be a real pain in the ass in this weather, especially now as my skin is splitting. I am up late again, I either wake up or do not sleep very well. Does anyone suffer with painful wrists? Sorry if I seem crouchy just fingertips are very sore. Good nite james

BarbJ profile image
BarbJ in reply to jamesecoker

Hi James I have Raynauds and Limited Scleroderma ... you are so right, it is a real pain in the ass in this weather. I wear great big gloves (with silver gloves inside them - tried those for the first time this year and they're great) and can't feel my door keys (though you can apparently take your outer gloves off and do stuff in the silver ones, but I keep forgetting to try that!) have trouble picking up carrier bags etc., can't go out of the supermarket without my gloves on. Indeed, when it's very cold I walk round the supermarket with my gloves on - and never ever linger long in the freezer isle gloves or not :)

I'm lucky in that I don't have much trouble with skin splitting except just behind the nail on one thumb which inevitably happens every year. That on it's own is painful enough so I really feel for you having more than one split. It may not be very 'manly', but have you tried a good handcream (I couldn't live without Neutrogena's Norwegian formula (you can get unscented). Also, if you can bring yourself too, get some runnier hand cream (as good a quality as you can afford (though Boots own brand are usually good at reasonable prices - look for ones containing shea butter). Put loads of that on when you go to bed at night, put cotton gloves on over the top and you should find a difference. You probably won't need to do it every night but maybe at first it would be a good idea.

I also hate this time of year as I have to wear all the unglamourous layers and it's worse when I'm going out at night, plus I won't even start on the chunky 'granny' shoes I have to have because of the orthotics which - on the plus side - do allow me to walk with a lot less pain in the balls of my feet.

I have painful wrists off and on. They also give way from time to time when I pick heavy things up. I also get pains in different parts of my hands off and on - it may be that a finger or two will go into a painful spasm and the only way I can get them 'free' is to physically bend them with the other hand. Other times I get awful pains when I wring out a dish cloth or similar. And you thought you were grouchy ;)

tinaparkii profile image
tinaparkii in reply to jamesecoker

I suffer very painful wrist alot of the time. Nifedipine 3 times daily did help me loads. But was wearing of about 2 hours be4 I could take the next 1. I have now been put on adalat retard instead 2 times a day. But I don't feel there workin as good. Even tho there still nifedipine and meant to work better I can't c it. Just wondering do any of U also suffer upper arm pain and especially on wakin up. I can't stand the pain I have.

BarbJ profile image
BarbJ

I've had Nifedipine off and on (I used to take it during the autumn and winter months only) for about 5 years now and haven't had any problems except for some lightheadedness on standing because, as ceegee mentioned, I have normal blood pressure. I'm currently on 1 x 20mg of the timed release Nifediping but think I will be asking my GP to increase that to 2 x 20mg for the worst of the winter. Good luck with it, I hope it suits you :)

danacetz profile image
danacetz in reply to BarbJ

Thanks I was wondering if you can tell me the size of the pill? I am having hard time swallowing pills. The one they gave looks like it ewill want to get stuck in the back of my throat.

BarbJ profile image
BarbJ in reply to danacetz

Hi danacetz, they're about 8mm in diameter and about 3mm deep, being timed release they are, though very smooth and funnily enough, I find that the smaller pills get stuck more often and sometimes even with loads of water they are so stuck they start melting in my throat (yeuch!). They're worth the effort though :)

danacetz profile image
danacetz in reply to BarbJ

sorry to bother you but how do you get the pill down? I am working on several of my fears and taking medicine is one of them. Do you get scared about it? I am sorry for being so personal but it might help me feel better. I have noticed that the people on this site are very nice and supportive.

BarbJ profile image
BarbJ in reply to danacetz

I've never been afraid to take medicine, but I have had (and still do sometimes have) other fears and one of the ways I deal with them is by making a conscious effort to breath deeply and trying to relax.

Another thing I sometimes do is to ask myself things like 'What happened last time I did this (or felt like this)?' 'If last time was bad, did I get help easily if I needed it, or did I get myself through it?' 'what's the worse thing that could happen to me by doing this?' It doesn't take all my fear away but I find it helps me to stay calmer.

Also, I don't know whether you've ever tried meditation but that can help - if you practice regularly, meditation can help you to become more relaxed generally and you can (if you are calm enough to remember! :) ) use it when you feel your fear starting to take hold of you. Good luck.

BarbJ profile image
BarbJ in reply to BarbJ

P.S. It takes courage to admit to having fears - I'm pretty sure I wouldn't have said that on here. You obviously also have insight and determination - you are tackling your fears. Be proud of yourself for those things ;)

danacetz profile image
danacetz in reply to BarbJ

thanks your sweet and I will allow myself to take the compliment

jamesecoker profile image
jamesecoker

Hi guys, thanks for the messages, nice to read them. Firstly, Danacetz, the pills I have are Nifidipine and they are coloured half red and half orange and are ok to swallow. They are 20mg tablets in a plastic coating . if you find them difficult to swallow , I try to take the pills with a thicker liquid that can ease the swallowing or take it with milk. I hope it helps.

danacetz profile image
danacetz in reply to jamesecoker

So your not a morning person either, wink, wink. I am grouchy because I got to go to the dentist and I can't open my mouth wide enough.

They just discovered at the beginning of the month that I have a low thyroid I am hoping that would warm me up after the meds start kicking in.

One thing htat works really good for me is to take up to 3 T of extra virgin (that means it isnt refined) coconut oil it will also help your skin from the inside out. Do research on the net, it's saturated but its safe because its not hydrogonized (which is done to perserve the oi). You can put on your hands (just a small amount ) and rub it in. Make sure you wear rubber gloves when washing dishes.

I am going to call me Dr. and see if they can presribe the smaller plastic coated ones.

Also I picked up a tip on one of these sites to use oven mit when reaching into the fridge.

I think the people on this site are really comforting and kind.

Hugs and wishing you a good nites sleep tonite,

Dana

jamesecoker profile image
jamesecoker

Dear BarbJ,

I am glad we both agree it is a pain in the ass!! These gloves sound comfortable and being in the supermarket is always an obstacle unless I am wearing my big coat and gloves then I am ok. Carrying bags is not so good and have started to carry very light bags and use my rucksack to carry items and the films get sore and puffy from carrying them.

I am definitely a man who uses creams, I use on my face, hands, body, always have done.Some men think its unmanly well they have to get with the programme. I agree Neutrogena's creams are very good and great for the hands. I have creams that the doctor has given me which is waxy but can help after a bath. I use Nivea face creams and mixed the around really.

I tell you some shoes that are comfortable and have special soles are Hotters and they have some nice designs too. Try them. They have a couple sales a year and can get some good bargains.

The finger spasms sound nasty, poor you. The wrists get stiff and painful. Painful this morning. I am off out shortly so sorry for the rush. Will have more time later. My nan is unwell so must visit her this morning before dialysis.

Have a nice day!!

Thanks,

James

BarbJ profile image
BarbJ in reply to jamesecoker

Hi James

Heavy bags - yes, awful! I'm pleased to hear you're a modern man and slap those creams on :) As they don't stop your skin cracking perhaps Dana's tip re taking olive / coconut oil would help ... go on, you do that already too I bet! If that's the case then I think you need to find a woman who can give you a warm and comfortable life of leisure!!

My granny shoes are actually Hotter shoes: I agree they are very comfortable and I do have some with smallish heels that I can stand to wear without my orthotics for a night out. I think my problem is that I spent my teenage years onwards first in platform shoes and then in stilettoes. I find it very difficult to look in the mirror and not think I look frumpy because my shoes are flat or nearly so!

I'd rather have my finger spasms than your split skin - the dreaded word 'ulcer' would haunt me if mine were that bad. I have had a couple of ulcers on my legs and so now I'm in compression stockings - my Nora Batty's I call them (another thing to make me feel frumpy - gosh can you hear those sad violins in the background :)) but, thanks to them, I've not had another ulcer.

I hope your nan is OK - may I ask, is it you that's having the dialysis??

I'm like you and Dana with tiredness - getting up can be very difficult (as can getting to sleep sometimes), I am late for work quite often but fortunately they are tolerant, especially since I've reduced my hours because of my health. Do you ever sleep for 24 or more hours at a stretch? I seem to do that in a cycle of roughly once every 4 to 6 weeks. It's as if my body and mind say woah, enough! we need sleep. I do feel a lot better afterwards and if I'm lucky that'll last for a few days.

Anyway, here's to a good night's sleep and a warm winter.

Best wishes

Barb

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