Craftyflower

I'm sorry to hear this. I was given Nifedipine when I was diagnosed at 16 and it didn't agree with me. I tried again when I was 20 and the side effects were still horrible, so I stopped taking it. I'm now in my 40s and manage my Raynauds without medication but through natural methods.....I do still get bad Raynauds attacks and bad chilblains, but I decided it was better than side effects of Nifedipine. I'm no saint and it sounds boring but I keep fit, eat healthily, no alcohol and only drink Decaf coffee, I wear lots of layers, especially important are tights, compression socks and gloves under regular socks and gloves and always wear a scarf or neck warmer to keep the draft out. I'm sorry that's not much help and I'm sure there'll be some other folk on here who can help.

I wish your daughter all the best

lindyanne

Hi lulubookwormI was diagnosed in 2005 with diffuse systemic sclerosis and tried nifedipine for the reynauds attacks, mine are severe and difficult to avoid in spite of taking SO many precautions also mentioned in previous reply. I had very similar side effects and couldn’t tolerate it having tried many times. I am now taking sildenafil 25mg once per day and able to tolerate that. I also have iloprost infusions at the Royal Free three times a year. I’m 63 so considerably older than your daughter but these may be things you could look at. It’s worth persevering to avoid damage to the fingers tif at all possible.

All the very best to you

Lindyanne

castlewalks

I’m on nifedipine ( 20mg x2daily) & don’t suffer from too many side effects, prob fatigue & palpitations ( from am dose) & wakening a bit thru night but for me is much easier as I was on sildenafil & had to come off it as couldn’t sleep - lay awake for hours.I drink lots of water as I think dehydration can be an issue with the tablets.

it can be so different for each person, the nifedipine really helps my fingers as I had bad sores but like others I try to take self help measures like eating well - keeping off junk food, keeping warm & using good hand creams etc & drinking lots of water. when I notice ‘potential’ sores I use activon medical manuka honey to calm them as this had been recommended by someone else on this site & is really good. Hope this helps.

LadyTrundle

Hi lulubookworm. My experience is that your daughter symptoms are actually very normal when you first start taking nifedipine. Because it expands the blood vessels, that I understand is the root cause of most headaches – some change to the blood vessels in the neck. When I started taking it a few centuries ago, I would get the headaches and dizziness and feeling lousy for 2–3 weeks but then it would always settle down. I don’t take it during the summer months, so would have to go through that experience every autumn. These days those symptoms only last for two or three days usually and then I’m back to my normal self . I did used to say I wasn’t sure if it really did any good as I still had Raynauds attacks, but in the last year I’ve been on Losartan potassium as well, and I would say I really noticed my fingers being better and less prone to attacks.I would definitely echo the other people here in wearing layers, looking after the skin, looking after your general health through diet, not smoking , low alcohol, exercise and all the rest. And especially I would recommend having battery heated gloves to wear under other gloves. I use them all the time, not just outdoors – I need them when I’m preparing food for example. And a hand muff! Years ago I found one on the market and it’s been absolutely wonderful at keeping my hands warm in relatively thin gloves so I can just whip my hands out to pay for things or unlock the door etc, and then put them back into this cosy little cocoon! Good luck to you and your daughter.

lulubookworm in reply to LadyTrundle

Thank you for your reply. Unusually she doesn’t have flare ups but has really purple toes and pain all year round. We are waiting to see a rheumatologist but it’s taking a long time.

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Bkart

Years ago I was put on Amlodipine and Losartan for a heart condition, coincidentally my Raynauds sores and ulcers cleared up. Although the Raynauds has becometroublesome again I do think the Losartan and Amlodipine are keeping the ulcers at bay, thankfully.

I have reactions to many drugs (now have to have an EpiPen) but I tolerate these two drugs quite well. The Amlodipine does make my ankles swell sometimes but

sooner that than the ulcers, however I am 69 so my age

and existing heart condition may account for that.

One tip I find to see if I can tolerate a drug is to reduce

the dosage by either halving or even quartering the tablet

or try taking it every other day, so that your body can slowly get used to it. Unless it is an out and out allergic

reaction (which it doesn’t sound like with your daughter)

then this very often does the trick for me. You can buy tablet cutters quite cheaply online or at a pharmacy, please don’t try cutting them with a knife!

As your daughter is so young her body is presumably not used to strong medication. Hope the tip might be of some help and it has been approved by a doctor but obviously

check first with your GP.

Sorry to hear that your daughter is suffering like this.

K9rsqr

I had the side effects for about a week when I first started Nifedipine but they did subside. Oddly, I can only take it from a certain pharmaceutical company though. My pharmacy gave me a different company and the side effects started again. I tried to stick with it but headaches, etc wouldn’t go away so now I insist on the one company and have no problem.

Dizzy64

Hi, lulu bookworm I am sorry to read about your daughter suffering while taking Nifedipine.I have been taking for 7years and haven't experienced any headaches, fatigue yes but I am on other medication. But what suits one doesn't suit everyone. Does she drink enough fluids.

I would recommend that she goes back to the GP as she shouldn't be suffering like that, there is a slow release tablet for Raynauds that I have been prescribed a few times when Nifedipine hasn't been available which I prefer (sorry can't remember the name). I am also wondering if there's anything else going on, it may be worth speaking to GP and explain about lack of appetite and fatigue and having a blood test as Raynauds can be a primary (on it's own) or a secondary (something else is going on) as it is an auto-immune disease and form of arthritis. I would definitely/highly recommend that she goes back to the GP.

My Raynauds started in summer and gradually got worse over 4yrs when the 'tingling started' and fingers changing colour that I saw my GP and was started on 5mg 3xdaily they did nothing and am on 10mg 3xdaily and have no problems only stiffness in hands. I was recommended not to stop taking medication in the summer.

I wear ski gloves and thermals in winter as core temperature drops.

I feel quite helpless really, but I hope that your daughter can get some answers from GP and she starts feeling better soon.

Take care and sorry I couldn't be anymore helpful.

Best wishes for your daughter and yourself.

lulubookworm in reply to Dizzy64

Thank you for replying. We have been back to the GP and they just say wait to see the rheumatologist, the referral is taking ages. I am worried because she is so young and has school.

Her symptoms are not typical and she has them all the time.

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Dizzy64

You're more then welcome.I'm sorry to hear that your daughter is so young and has school to cope with as well.

Is your daughter under any stress exams etc?

If you know what hospital your daughter is going to be attending for her appointment to see the rheumatologist, I would ring the hospital and ask to be put through to the rheumatology department and explain everything. As Gps letters don't always give full details and as she is a child it's better that the sooner she's seen the better.

If you don't know the hospital, keep going back to the Gp as they can push for your daughter to be seen sooner.

Since becoming disabled with a chronic spinal condition, Raynauds and Dystonia. The one thing I have found is that you have to make a nuisance of yourself (which isn't my nature) to get any answers and treatment.

I really hope this helps and you have my full empathy and wish your daughter all the best. xx

Kaycee97

I first started to take Nifidipeine 3 x 5mg last year and I was determined to finish the 4 week dose but sadly even at the 4 weeks I had to speak with my GP as I couldnt tolerate the headache. I was then prescribed the slow release version but again had the same effect. I was then prescribed Amlodopine and despite not getting headache this time, I started with other symptoms. Swollen ankles,fatigue/faster heartrate (especially after exercising) and weight gain. I was still getting attacks,although they have been worse since I stopped them. sildenafil is the next option but my GP wont prescribe so I need to wait for whenever I get another rheumatology appointment. So currently I am on no medication but this is the reason I have resisted for 25 years as I am healthy and have no BP issues.Hope your daughter finds something that suits her.

MFC911

Hi,I have been taking the stuff for ten years plus now. I suffer from Systemic Sclerosis. When I first started taking it I suffered badly. I did a lot of homework and found that Nifedipine is manufactured by many different companies. The different companies use different “binders” to make up the pills that we end up being prescribed. It is more likely to be the binding agent that your daughter is having problems with than the active ingredient. Have a word with your Pharmacist ask them what other manufacturers they can access and get your GP to prescribe a different one. There are ten or fifteen of them. Perceiver until you find one that suits, I’m sure you will. Hopefully without too much effort.

Good luck to your daughter. It is a very effective mainstay drug in the treatment of our type diseases. Your daughter will be much better off in the long run if she can stick with it. I know it can be uncomfortable. I wish her well and good luck.

All the best. Mark.

K9rsqr

I agree with MFC911. I will only take one pharmaceutical company’s version of nifedipine because I have had issues with two others that included horrible headaches.

Halfwayuphill

Hi, I was prescribed nifedipine a few years ago for Raynauds and it made my migraines worse. It was then swopped for Amlodipine and not only did I have no side effects but it really helped my migraine attacks. In fact I don’t get them anymore. Incidentally it is Teva brand I take.I hope your daughter gets something that helps her.