Nifedipine pros and cons.

[misty14]

Hi Everyone.

I may be changing my Raynauds Circulation Pill to Nifedipine and would like to know how effective it's been for fellow sufferers and any side effects to watch out for?.

Looking forward to any replies.X

[anbuma]

I have had Nifedipine for my Raynauds for years and it is effective.when i have "run out"of meds symptoms return(hands)-but no side effects

[sharon53]

Hi

I am on Nifedipine have been on them for many years with no side effects at all, I do have to take extra in the very cold winters, I have had no problems so far.

[Hidden]

I found it gave me hot flushes in feet, knees and face. Better on slow release (Adalat) but eventually my legs swelled so much that it gave me a follicular rash which has left scars. I was told to come off it. On the plus side it brought my blood pressure down to normal though and I thought it was a good drug compared to many I've taken.

Symptoms are all back with a vengeance now and I'm going to ask my GP what next as feet and hands burn and freeze alternately and it is driving me mad!

[misty14 in reply to Hidden]

Hi Twitchy

Thanks for your experience of Nifedipine, good tip to have the slow release version, they are usually kinder!. Good luck today when you see your GP, let us know how you get on. X

[Hidden in reply to misty14]

Thanks Misty. GP was fine - I explained how my life works (or doesn't work) just now and how badly the parasthesia is affecting me. We talked about Nifedipine and he said it is the most effective vasodilator drug. Newer ones do not dilate the blood vessels as much but are an option.

He said my worst symptoms are peripheral neuropathy not the Raynauds - a bit of an admission at last! So I'm keeping on with the Gaberpebtin in the hope that the dizziness and total wipe out settle down soon as just bed bound with it today.

Good luck with the nifedipine. X

[misty14 in reply to Hidden]

Hi Twitchy

Thanks for very good info about Nifedipine , glad it's regarded as such a good drug!. Peripheral Neuropathy is what I have so Gabapentin should help. Any news about you seeing the neurologist sooner?. I hope your better soon, take careX

[Hidden in reply to misty14]

Yes it seems to be a good drug although at a talk I went to about Raynaud's they did say that side effects (flushing and swelling of ankles mainly) are an issue that has stopped it being used commonly as a BP medicine or for Angina - and even for Raynauds. So if you do get these as I did, they aren't awful and I would happily take it again if advised to.

Re the neurology apt - no chance - the hospital doesn't have a cancelation system for islanders such as myself. Only GP can request it as an urgent referral and he said that this would only apply to suspect malignancy.

Do you take Gaberpentin? Sorry I know you've told me but I can't recall. I'm so dizzy and tired and it isn't making any odds on the PN yet but only just got to 300 mg per day. GP advises I move up at my own pace - to 900mg. I'm missing this morning's dose as have to drive myself to town and can't risk the dizziness behind the wall. He said this would be okay occasionally if I have to drive. Tx

[misty14 in reply to Hidden]

Hi Twitchy

Thanks for your added info about Nifedipine , now I know why my GP suddenly came up with it as one to try. It will help my Raynauds and chest pain.

So sorry your hospital doesn't hold cancellation list for islanders!. Where do u live?. Your GP should be more willing to help you rather than interpret the rules so literally as your very poorly!.

I take Gabapentin 900mg a day. I moved up from 300mg daily , 300 mg at a time. Have you got the 300 mg tablets?. I'm not sure your dizziness is to do with PN as it's not a symptom I've had and can be caused by other things or even other drugs you might be taking!. What has your GP said about it?. Take care when driving and good luck with increasing Gabapentin , it should help you sleep better. X

[Hidden in reply to misty14]

Thanks Misty. Dizziness is a listed common side effect and I'm not taking anything else apart from my usual Levothyroxine and vitamins. I am sleeping for about five hours now as opposed to three - burning pain/ pins and needles have calmed a bit overnight I think!

Because I'm so hopelessly intolerant of drugs GP started me at 100mg three times and has now advised (I emailed him to check!) that I move up to 900 mg slowly - adding a new 100 mg capsule each day over two weeks. Then I see him again and if it is working without side effects he will prescribe me pills at a higher dosage. Fingers crossed although I am feeling very spacey again today. He advises I skip doses if I have to drive anywhere and hopes I'll get used to it soon.

The podiatrist I saw yesterday (a real gem!) agreed with my GP that this is quite a severe peripheral neuropathy which is making my extremities either burn or freeze rather than Raynaud's. I do miss the toasty feeling that nifedipine often gave me in my extremities though - it beats squelchy cold and wet with burning soles I feel! GP said I can take it again in winter as and when I need it but wait until the Gaberpentin is established properly.

Here I am with RA which has vanished and all this other rubbish which is plaguing me! I really hope the neuro has some more intelligent ideas about this than my rheumy appears to have! X

[misty14 in reply to Hidden]

Hi again Twitchy.

Sorry for being thick, is dizziness a side effect of Gabapentin?. I've been lucky not to have it!. The slow way your upping the dose of Gabapentin was the way I did it and I'm pleased you've started getting benefits. PN is considered to be a rare illness and a Neurologist will know much more about it than a Rheumy , it's one of Neuro's specialities. There is a good Association I used to belong to called The Neuropathy Trust. If you google them or I can give you their contact details if you'd like. When is your Neuro appt?. It's cruel how your RA is better and you've developed this!.

[Hidden in reply to misty14]

Thanksgiving much Misty for the PN association.I will definitely try it. My GP and podiatrist (rheumy trained) both suspect that the PN is rheumatatic or part of my RA - even though I have little joint pain or swelling presently. My ESR is always raised to high so I obviously have inflammation somewhere.

I read that autoimmune PN is often not diagnosed as anything more than idiopathic and therfore often goes untreated re immunosuppressants.

It is now three months since I last injected methotrexate so I'm a little apprehensive about when and if the RA will come back. RA doesn't usually just disappear forever. Mind you I would swap neuropathy for my RA anyday - it is at least a known quantity! The PN started with the RA symptoms three ages a half years ago - plus Sicca and Raynauds. I am very drug intolerant - have tried three DMARDs to date.

Thanks for reassuring me about the neuro. I have no appointment date yet - just a letter saying I am on their list of new referrals and present waiting time is 14 weeks minimum but might be longer.

[misty14 in reply to Hidden]

Hi Twitchy

I think it will help when you read your by no means alone with Peripheral Neuropathy!. It's an added extra with auto-immune illnesses that we can well do without!. I'm sorry you have such a long wait to see a neurologist , good luck with increasing Gabapentin .X

[Hidden in reply to misty14]

Thanks Misty - I moved up a dose last night (took two!) so am at 400mg for two days. Slept like a log and have woken with almost no burning fizz -very exciting! Good luck with nifedipine! X

[misty14 in reply to Hidden]

Hi Twitchy

That's great news you had such good benefits on the higher Gabapentin dose. Shows it's PN and not Raynauds which is a shame for you!. I won't be trying Nifedipine till Nov or Dec when I see my Rheumy next , it's his decision!. Thanks for all your help and advice and I hope the benefits continue for you and RA keeps away!X

[Hidden in reply to misty14]

Thanks for giving me the suggestion Misty for the PN association.I will definitely try it. My GP and podiatrist (rheumy trained) both suspect that the PN is rheumatatic or part of my RA - even though I have little joint pain or swelling presently. My ESR is always raised to high so I obviously have inflammation somewhere.

I read that autoimmune PN is often not diagnosed as anything more than idiopathic and therfore often goes untreated re immunosuppressants.

It is now three months since I last injected methotrexate so I'm a little apprehensive about when and if the RA will come back. RA doesn't usually just disappear forever. Mind you I would swap neuropathy for my RA anyday - it is at least a known quantity! The PN started with the RA symptoms three ages a half years ago - plus Sicca and Raynauds. I am very drug intolerant - have tried three DMARDs to date.

Thanks for reassuring me about the neuro. I have no appointment date yet - just a letter saying I am on their list of new referrals and present waiting time is 14 weeks minimum but might be longer.

[EOLHPC]

Hello misty! I have simultaneous raynauds & erythromelalgia secondary to my primary which is SLE . 3+ years ago, before I started on lupus meds (hydroxy etc), a rheumatologist tried me on nifedipine....and I reacted in a similar way to twitchy: my erythromelalgia went wild with severe redness and burning sensations etc 24/7 in feet, lower legs & knees, hands, face, ears + most all my persistent various lupus symptoms began to flare...so, I stopped the nifedine after 3 days of this ordeal. I am now on a cocktail of lupus meds which seems to be slightly easing my RP&EM, but mainly I lifestyle manage my version of RP&EM. I'd avoid ever taking any vasodilator again, and certainly would refuse nifedipine....put I know many others on forum get along well with this Rx.

[misty14 in reply to EOLHPC]

Hi Barnclown

Thanks for your very helpful info about Nifedipine , last thing you needed was a drug to make your EM worse. I'm grateful I don't have that and Raynauds together because it must make it extremely hard juggling the two!. My Rheumy Consultant will decide what I can try when I see him in Nov /Dec. Hope your as well as can be.X

[EOLHPC in reply to misty14]

You're vvvvv welcome misty! Am curious: what vasodilator are you stopping & why?

[misty14 in reply to EOLHPC]

Hi Barnclown

I take Slozem 120mg which is great in the summer but not enough in the winter. Last year I took 180mg and had side effects . An alternative drug recommend ed by my Rheumy Losartan my GP isn't happy with so he said ask about Nifedipine when I see Rheumy next which will be Nov\Dec. It will be his decision. Hope your well. X

[EOLHPC in reply to misty14]

Thanks so much:

am wishing you success with nifedipine & am v grateful for this info re alternative meds for raynauds: those are all new to me, so I'll get going on google to learn about them

Am feeling pretty good thanks!

Take care misty, XOXO

[misty14 in reply to EOLHPC]

Hi Barnclown

Glad that you've found my Raynauds Drug info helpful. Just to add that having chest pain symptoms is also determining choice of drug. Hopefully for you , that doesn't apply and would give your doctors a wider choice?.

So pleased your feeling well as I am too. Long may it last for us!X

[ebril]

I've taken it with no problems

[misty14]

Hello fellow Lupies.

Thank you for your helpful info about Nifedipine , it's heartening to know it's used a lot and is mostly well tolerated by you and helpful for Raynauds. Keep wellX

[Belee]

Hi,

I was unable to tolerate nifedipine as it made me incredibly dizzy and nauseous. I am trying to manage it without meds at the moment. I read an article about organic beetroot juice ( 'beet it' by james white) being good for athletes as it opens up the capilleries - thought I'd try it for my raynauds and see what happens. Its early days as only been drinking it for a month but so far so good!!

take care

xxx

[misty14 in reply to Belee]

Hi Belee

Interesting about beet root juice. I have read how good it is for us like a super food. I eat a lot of it but didn't know it widens capillaries. Hope it continues to work for you, let us know. X

[Ruth_lderry]

Good morning I did take this drug an like some other people I felt like parts off my body was going 2 blow they were tht red and felt like they were on fire. Docs stopped me on them. Am dreading the winter coming now with my hands and feet they get so sore no matter how much I keep them warm! Got heated gloves from Hosp last winter but didn't find them that good at all. My hands b mess with cuts. This will be my 1st winter on all off my lupus meds 2, will this help with my hands and feet?

So glad and grateful 4 this site I can just pop on and talk to people in the same place as me. Thanks guys

Ruth

[misty14 in reply to Ruth_lderry]

Hi Ruth

Thanks for telling me about Nifedipine . I hope your being well monitored as you've come off all your drugs . If you do have problems this winter you can always try for a Rheumy Cancellation. I've been lucky in the past! Is all this trying for a diagnosis ?. Good luckX

[Pickzie]

10mg slow release nifedipine twice a day has been a godsend in the winter. I only use it when the air temperature is low and have had no adverse effects

[ijeasike]

I am on neifedpine it helps dialate the blood vessel and it has been helping me too. The only side effect i get occassionally is headache especially bcos am on a high dose but besides dat am good with it. Hope it suits u too. Takecare

[misty14]

Hello fellow Lupies

Thanks for your helpful info about Nifedipine. It's given me great confidence to try it.X