raynauds of the Nose

[jacquelinajane]

hi! i am joining this community because my raynauds has effected my nose which is getting worse every year. now it shuts down and turns purple during the summer time too in AC places and under stress. i almost got frost bite on it a few years ago and now have a patch of white skin on the tip. it not only looks purple but aches with the numbness at the same time. i am being worked up for any systemic disease but so far nothing. my cpk level is elevated slightly (263) and had been slowly rising and they do not know why. i am looking for any tips or dietary changes that i can make. any advice is welcome! i feel desperate at this point as my nose shuts down almost on a daily basis. my fingers are only effected a few times per year and usually in the fall. my nose....year round!

[Mylreaclairelee]

I am so sorry to hear this. I get a very cold nose these days with my fingers and toes but nothing like yours. I have no advice or answers though. Just know that we are with you on this journey.xx

[jacquelinajane in reply to Mylreaclairelee]

thank you

[frillyhilly]

Hi, I have had Primary Raynaud's for about 15 yrs and I have always had a cold nose (I don't know how long, because I didn't realise until the specialist touched it to aid in his diagnosis). I am fortunate that it is nowhere near as bad as yours.

You mentioned about dietary suggestions - I take Rutivte Tablets, aka Rutin, - 500mg tablets, twice a day - one with breakfast and one with my evening meal. I have been taking it for about 8 years and it has made a huge difference to me - reducing episodes and helping me cope better. It is made fro Green Buckwheat which is food, often used as flour.

In case you haven't heard of Buckwheat, it is usually used in cooking to make pancakes, etc. It is also Gluten free.

I buy my Rutvite online from PowerHealth: powerhealth.co.uk/search.ph...

You can also get buckwheat crispbreads.

Hope you find something to help with your nose soon. xx

[jacquelinajane in reply to frillyhilly]

Ok. Thanks. I'll give it a try!

[zenabb]

Well a nose is an extremity. Give it a nose sock.

[jacquelinajane in reply to zenabb]

Once my nose shuts down it is difficult to open it back up. I have tried warm compresses and that doesn't help.

[beaglab]

I think Niacin, 500 mgs, Twin Labs brand, is the answer. I buy it at the Vitamin Shoppe. Niacin gives a flush, a feeling of warmth that is appreciated. It is safe to take three times per day. Please read the book, "Niacin, the Real Story". Know that you are not alone. Reach out here anytime. Stay strong.

[foxglove]

agree rutin helps, also gingko worth a try, and Circulease( Healthspan,) pine nut also works for some . It's the usual "trial and error" and expense....I also find it helps to change supplement from time to time - it's as if body gets too used to the one thing.

[jacquelinajane in reply to foxglove]

Ok... Thank you!

[Marie95]

Hi I would go and see a Homeopath, I have had help with my raynauds and other chronic health condition. best of luck

[jacquelinajane in reply to Marie95]

Thank you. Good advice!

[Saphira54]

Re: Raynaud's of the nose

I also have had a cold nose for years but developed Raynauds of hands and feet this past winter. It is very bothersome even in summer because of air conditioning.

My Rhematologist prescribed Nitrobid ointment to be applied to areas that are bothering me. It works wonders on my toes- the normal sense of touch comes back to them and they warm up. This is an off label use.

Nitrobid ointment is approved to be put on the chest of someone suffering from angina. It is a slower acting form( and longer lasting) of the nitrogycerine tablets that cardiac patients would put under their tongue to relieve chest pain.

It will lower blood pressure and may cause headaches from vasodilation.

Start with a small amount, you can work up to a higher amount.Keep track of how much you are applying each time as well as relief of symptoms and side effects.

Another commonly prescribed drug for Raynaud's is Nifedipine. It is a calcium channel blocker that blocks spasms of the arterioles supplying blood to your organs.

My rhematologist also told me that she sometimes will prescribe Viagra ( also a vasodilator) if the above two drugs can't be tolerated. But she said the insurance companies usually will not approve paying for it because it is an off label use.

For myself, 10 mg of Nifedipine at bedtime was great at stopping my foot pain from waking me up at night. I stopped taking it because of feet swelling .Just started nitrobid on toes and had a headache the first time but not since.

I love the nitrobid paste because I can put it on the affected area with relief in 10 minutes. I use a small amount but rub it in.

Good luck.

[jacquelinajane in reply to Saphira54]

Thanks for all the info!. I tried the nitro paste a few years ago and it didn't help. I right now I am ruling out any other underlying autoimmune disease . I am thinking I have secondary raynauds andr that's why I don't I don't respond to normal treatments. I see a new rheumatologist in a couple weeks. Thank you again for your response