Nonpharmacologic measures before Nifedipine

[Kernowall]

My Raynaud’s has worsened suddenly. Assuming it is Raynaud’s that is. It was first ‘diagnosed’ 2 years ago with no testing or investigation, just based on me saying I get numb hands at night. I very recently get toes and fingers feeling cold a lot of the time with some numbness and slight tingling. Also some cramp in one foot. Just had blood tests showing no problems and was prescribed Nifedipine after a one minute chat on the phone with my GP when I said I still have these symptoms. I’m not at all confident that all avenues have been explored, surely Nonpharmacologic measures should be taken first or are the drugs inevitable? Also I hear that this drug is to be discontinued. Any experiences or advice appreciated but I am of course seeking further professional help too.

[Sosie]

Do your fingers change colour, e.g. waxy-looking white/yellow, then blue, then bright pink? Do you get a pins and needles sensation during the bright pink phase? That would be fairly typical of Raynaud’s. I managed for quite a while by just keeping warm, i.e. keeping core warm with extra layers, wearing a scarf and wrist warmers indoors. Put gloves on before you go out into the cold, not once you are already outside, etc.

[Kernowall in reply to Sosie]

No I don’t get any colour changes but some slight pins and needles. Basically I get some numbness in some digits particularly one big toe and a a couple of fingers. Hands wake me up as very numb (normally one that has been held in the air during sleep). Efforts to keep warm help so far but I was always one for feeing hot when others don’t so for me that means socks in bed and a higher tog duvet and a blanket in the evening.

Thanks for replying.

[MissusTee in reply to Kernowall]

Raynauds has typical colour changes, it doesn't sound to me as if this is what you have. I think that it's worth you going back to the GP.

[Kernowall in reply to MissusTee]

Thank you I agree going by what I've read The initial GP assessment was over a year ago saying it's Raynaud's and I have had 2 appointments with different GPs in the last 2 weeks plus a phone appointment, none of whom disagreed, shall we say.

So losing faith in their assessment to be honest, especially as so far no alternative has been suggested or any test performed.

[leapingmonkey]

I have similar symptoms, been dx with erythromelalgia & peripheral neuropathy. I also have hEDS, fibromyalgia, inflammatory arthritis, IC, but not dx with Raynauds

[amd21]

Hi if it is Raynaud's then nifedipine is absolutely the best treatment (actually the only treatment) although it has side effects and some brands have a supply problem.

The big but is whether you have Raynaud's. You may find this article useful.

bmj.com/content/344/bmj.e289

[Kernowall in reply to amd21]

Thanks for the link, may need some time to understand it though. I suppose my main question apart from do I have Raynaud’s at the moment is is there any point taking Nifedipine until I need to.

I’m thinking of trying to get referred to the Royal Free one-stop clinic.

[amd21 in reply to Kernowall]

what happens if you hold your hands in iced water for 180 seconds? if you have rays that will trigger an attack with biphasic colour change.

[Dizzy64]

Hi, I started on Nifedipine after the tip of my middle finger just went white, no feeling and it was in summer 2011 after that it just got progressively worse that winter 2015 at night I couldn't sleep for the tingling in my hands and during the day tingling, hands going numb and waxy and purple and the pain, I couldn't do anything especially when they were tingling . A friend took photos of my of my hands to show the Dr. And I was put on Nifedipine 5mg x3 daily which didn't help much and put me on 10mgx3daily.

I am now on a slow release twice daily, which works better than the Nifedipine to be honest. I wear thermal gloves and tops in winter.

What it is, is the blood capillaries aren't opening enough for the blood to reach the extremity of the fingers. I can't hold or grip very hard or for long as my hands lose feeling. I'm having hand therapy at the moment.

I hope this helps you.

Wishing you all the best

[tanya1981 in reply to Dizzy64]

Hi Dizzy, does the nifedipine help you substantially? I. E. Have the attacks stopped? I always wonder how much value it adds to take it as I didn’t see a massive improvement when I was on it and I now just take supplements instead

[Dizzy64 in reply to tanya1981]

Hi tanya1981, to be honest I didn't find it helped much especially in winter as I'd be wearing 2 pairs of thermal gloves and my hands would be like ice and would still get the numbing in my hands and stiffness.

It wasn't until about 4 months ago the Dr had changed my tablets to modified release and I now take 2x10mg daily and I have to say the difference is so much better, my hands don't get so cold and can wear one pair of thermal gloves.

I still can't hold things for long as my hands have poor grip and lose feeling.

But it was more the cold and the pain that has been made so much better and highy recommend.

Raynaulds is a form of arthritis, which I didn't know until I started hand therapy so I don't think all the symptoms will go.

Hope this helps and best wishes.

[tanya1981 in reply to Dizzy64]

Thanks Dizzy- so I guess it’s a bit of trial and error until you find the perfect fit. I’m lucky at the moment that I don’t get any pain- cold hands, changing colours and numbness I do but no pain. I just need to look after my

Hands a bit more I guess as I don’t always take my gloves with me so inevitably a Raynaud's attack follows....

[Dizzy64 in reply to tanya1981]

Hi tanya1981, you're very welcome, it is trial and error, as I have found for myself. As I have been told by many it won't get better just learning to live with it and do what I can when I can, it is what it is without being flippant.

Meant to say I have found ski gloves best for winter.

Take care and best wishes

[tanya1981 in reply to Dizzy64]

Dizzy,

Thanks for the advice and I hope you find that perfect balance where you almost forget you have the condition. I recommend that you try some supplements as well- ginkgo Biloba, ginger and garlic or turmeric seem to help...

[Dizzy64 in reply to tanya1981]

Hiya Tanya1981,

Thank you I have garlic in most of my food or a teaspoon from the tubes and tumeric in warm milk. I haven't tried ginkgo biloba or ginger, but will do. Thank you for the advice.

Best wishes and take care

[Berniz]

I take 30 mg. of Nifedipine in the summer and 60 in the fall and spring and 90 in the winter. I live in the U.S. and find the damp weather is the worst. I had an incident in which my index finger turned almost black. A little bit of black was on my palm below the finger. My ususal warming techniques did not help. I went to the emergency room and 3 docs tried to wash it off with alcohol, asking if I had dyed my hair that day!(I have blue hair.)I thought it was very funny. An xray was taken and I was okay. The pulses were fine. Warming it in water helped for a while. I checked with my rheumatologist the next day and she said it looked like Achenbachs syndrome. I looked at the images and they all looked like my finger. It came back a week later and is still scary looking but I know I am okay.

[Berniz]

Hi, again.

I have been reading the comments and I so not think it sounds like Raynauld's becaues you have no color changes. I think Raynauld's has color changes in the fingers. I am not sure which blood tests you were given. Perhaps seeing a neurologist or vascular specialist would be helpful.

[citygirl1234]

Hope you are keeping well during the pandemic.

When you say your hands feel numb at night, is this only at night? If you haven’t already, it might be helpful to write a symptoms diary for a few weeks that you can show to your doctor at your next appointment (e.g. when do you get symptoms, what symptoms are they, and what were you doing at the time). This can help you and them to see if there is a pattern.

There are some tests that your doctor can do, or refer you for, to confirm Raynaud’s or an underlying condition, or help rule it out. These include a water test, a nailfold capilloroscopy (looking at your nails under a microscope) and a blood test. You can find more information about these here: sruk.co.uk/raynauds/raynaud... If your doctor will not offer you these tests, you can ask them why they are so sure it is Raynaud’s. Note that there are two types of Raynaud’s (primary and secondary) so if you feel like Raynaud’s doesn’t explain all of your symptoms, it is possible that you could have secondary Raynaud’s. This means that your Raynaud’s is as a result of another condition and some of the tests can help determine which type of Raynaud’s you have, if you have Raynaud’s.

Nifedipine is still available in the UK, and I take it for my Raynaud’s. However, the pharmaceutical companies have stopped manufacturing some of the lower doses, which are often used in Raynaud’s, like the 5mg slow release tablet. The medication is most commonly used to lower blood pressure, so may not be suitable for you if you have low blood pressure for example. You can find more information about nifedipine here or by asking your pharmacist or doctor: nhs.uk/medicines/nifedipine/

There are non pharmaceutical ways of managing Raynaud’s which work for some people. SRUK have put together some information about these treatments here: sruk.co.uk/raynauds/raynaud...

Personally, I have primary Raynaud’s and find nifedipine very helpful. However, it doesn’t work for everybody and there are other treatments you can try.

Additional note: it may take a while for the GP to arrange any additional tests as lots of areas have cancelled all non urgent referrals due to the Covid-19 outbreak, but you should still be able to get a telephone appointment with your GP for a medicines review to speak to them about the nifedipine. However, you might have to ring and wait for a call back.

[Kernowall in reply to citygirl1234]

Thank you. Very helpful and I will follow some of this advice as and when I can.