Of those of you who have tried vitam... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Of those of you who have tried vitamin C to treat Raynaud's, have you found it to work? If so, what dose did you take?

OngPatient profile image
OngPatient

Vitamin C, Raynaud's, effective?

15 Replies

If this is so I would like to know as well.

Yes, I have tried Vitamin C , Vitamin E and a GLA (primrose oil) to help with my Raynaud's.

I used it for 6 months and I found a slight difference, but I had to stop taking the Primrose Oil as I was experiencing a lot of headaches. I looked up Primrose Oil side effects and sure enough headaches was one of them. That didn't occur though straight away and I have stopped taking the Primrose Oil and the headaches ceased.

I started using them after reading the information on the link below and I don't know if that will help you decide if you want to take vitamin C. I used the dosage recommended in the article.

sruk.co.uk/raynauds/raynaud...

Jen3131 profile image
Jen3131 in reply to SylvieJ

I take C, E and a GLA (starflower oil double recommended dose) and found it helpful. There were various combinations, recommended by The Royal Free, and this works for me. I am allergic to anything that is non-vegetarian. Starflower Oil can make you feel nauseous but I’ve got used to it.

I’ve taken high quality mod release 1000mg vit C, same b complex, mag/calc/zinc combo, high D3, EPO/Epa/dha, etc etc most of my life. I have had a v nutritious diet all my life and am v hydrated. I’ve always exercised most days or walked etc. I’ve had severe raynauds since early teens. The only thing that worked so far is Nifedipine MR. Brilliant stuff. You can see my story on SRUK website - and my hand from 6yrs ago is on the front! Deb

tanya1981 profile image
tanya1981 in reply to DJK99

Heya... so are you taking Nifedipine SR al year long in this case? If so, what dosage do you take?

DJK99 profile image
DJK99 in reply to tanya1981

hey no I took Nifedipine MR 10 mg everyday for years then was told was discontinued but it was just really unavailable apparently - so going to pick up my prescription tomorrow for first time in 1.5yrs. I'm presuming my raynauds will go back to almost non-existent again... as fluoxetine (prozac) that I've been trialling for over 2weeks hasn't changed a thing (mind you early days!) and Lacidipine which was on for over a year did nothing. One of the great contributors on Lupus UK has had great response to Sildinafil (Viagra!) so I might try that at some point if my Erythromelagia at night time gets any worse as really hard to deal with. x

tanya1981 profile image
tanya1981 in reply to DJK99

Good luck with it DJK99! Glad to know that Nifedipine is working well for you. It didn’t quite help Me when I tried a few years ago so I’ve stayed away from medicine for me Raynauds since then snd trying to use Heating sources and natural remedies...xxxKeep up the good routines re food, exercise, hydration.. while now curing, it would certainly help x

DJK99 profile image
DJK99 in reply to tanya1981

Thanks Tanya. Yes, at 58, I am a lifelong evangelist on clean/hjighly nutritious diet, have a Nikken water purifier, high level vits/mins, exercise every day etc - since being taught by my father who was into naturopathy and changed my diet etc radically once he noted my dreadful rashes etc as a toddler. It did make a big difference, but of course , diet etc can only do so much. I'm way up on all of that so not worries there. I've posted my hand from about 7yrs ago, pre nifedipine and proper diagnosis. I just put up with it along with most of my systemic stuff for much of my life until I no longer could. My hands were the least of my worries ;). I also use heating sources if have to go out in the cold but as retired on ill health grounds now, I only go out if I really need to in the winter months. Anyway, so you can see, the raynauds is quite severe. This is also on the SRUK website along with my story (Debs Story) if you're interested! Have you tried sildenafil? I really think it's a game changer for Barnclown on Lupus UK site. Check out her last post.. It might help you? If anyone has it this bad I think as you get older you just have to try and find a remedy as I was at risk of ulceration etc a month or so ago during the cold snap, with nasty feet chilblains as I had as a child. I would always try to use natural remedies first... but these days, as you can see, they just can't cut it for me. So good to hear the natural way is working somewhat for you.. I would really prefer it, believe me. All the best to you.D x

tanya1981 profile image
tanya1981 in reply to DJK99

Hi DJK, i am pleased to hear you’ve stayed committed to the right diet, exercise and natural remedies as best as you can. This certainly would have helped with keeping symptoms at bay as much as possible. I also think I’ll revert to medicine at some point as not disillusioned about the fact that this is a progressive disease. Sildenafil seems to be the drug that I’d like to try for myRaynauds when I’m ready - you speak of it highly and I’ve read many favourable reports about it from other members on this site. My raynauds is very similar

To the one you have, based on your photo. Without hearing sources and thick gloves,

I struggle to function outside and I hate how limited it makes me feel with 2 young children who need attending to while outside. Xx

DJK99 profile image
DJK99 in reply to tanya1981

Ah well that photo with Canada Goose top of range gloves and a top of range down puffa coat with pockets... V severe. Always wear gloves with inner thermals if you can. Frankly, if it’s as bad as mine in that pic you couln’t do anything like look after kids or shop etc. There is no sensation, although agony at same time and you can’t touch anything. I had it exactly the same in my feet which presume you do too - uou can hardly walk. If it’s that bad often you’re at risk of digital ulcers or nasty chilblains so I expect you’ll be talking to docs soon about getting medication. Good luck - it’s life changing! X

tanya1981 profile image
tanya1981 in reply to DJK99

Thanks! My feet are , touch wood, not as badly affected yet- or perhaps it’s my favourite Uggs that keep them warm...Hands are just as yours ,

And while numb, I don’t always feel as

Much pain- only

If I stay out for quite a bit x

I have not found it effective for my primary Raynauds. I take it anywy for Fibro but my Raynauds is not doing so well these days and I have to wear compression gloves often.

DJK99 profile image
DJK99 in reply to kimar

Hi Kimar - sorry to hear you raynauds isn't good. I'm sure you have as it sounds quite bad but have you tried Nifedipine MR? It worked wonders for me, and will again soon I hope now it is back in stock. But also I hear great response to Sildinafil (Viagra) by Barnclown on the Lupus UK site... well, certainly for her EM/raynauds dreadful complications. You mention compression gloves - I always thought they were for rheumatism - but I am finding every night I wake up with my hands (which are extremely painful with inflammatory arthritis generally - and raging Erythromelagia as soon as I get into bed) under my body or shoved beneath my thighs obviously trying to get pressure on them in my sleep due to the pain. Every little bone, muscle, tendon and blood vessel kills. I think I remember sitting on my hands from a young age as they were always hurting as had much of my issues since birth. Can you tell me who prescribed your gloves and the reason for using them please? thanks everso. D

kimar profile image
kimar in reply to DJK99

My rheumatologist suggested them. I tried a few that didn't work before I found the current ones by Isotoner. I am also able to wear them under sheepskin gloves. They work most of the time when I am outdoors. I can't take the Nifedipine due to low blood pressure.

DJK99 profile image
DJK99 in reply to kimar

Thanks Kimar. I shall read up about them. Take care