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[MInerva]

Hi I've just joined you and it's interesting to read all your comments. I have secondary Raynaud's plus Sjogren's and hypothyroidism. I'm having a lot of trouble with the Raynaud's-multiple ulcers and an area on my index finger that won't heal and oozes blood all the time. I've had iloprost lots of times but after a few weeks all the problems come back again. Does anybody have any helpful hints?

[Hidden]

Hi! I have very similar probs to you, although i,m lucky not to get multiple ulcers. i,m quite glad about that one as i did get a gangrenous ulcer on my finger once which involved a long hospital stay. I,ve also got troublesome calcinosis on my thumb (you can see it on my picture!)

Iloprost is the recommended treatment. I do find that you learn techniques to deal with it all. i,m a vegan, and i feel since cutting out dairy that my raynauds has improved. I also use the palmers concentrated cocoa butter cream on my hands which keeps them really lubricated. Make sure you are taking vitamin C with zinc to help healing too. Also hoping that you are not a smoker! Try and put pepper on your foods/add a little spice as its good for your circulation, and if you can afford it i find that acupuncture or massage can help improve the circulation in the body which then helps the rest of you X

[MInerva in reply to Hidden]

Hi inkedup. I'm not a smoker and take a multivitamin every day. I can't have pepper or spices because I have Sjogren's which makes my mouth dry and consequently it stings if I eat anything spicy. I'll give massage a go-anything to help relieve the symptoms!

[zenabb]

Dear Minerva, What ever you do, you have to go on doing it. There is no permanent cure, only variety of things to relieve the symptoms. Keep on having Iloprost, it dialates your blood vessels as far as they can go for some weeks or months, the blood flow increases and helps healing, or better prevent ulcers. I have Iloprost every two months in the winter and 3 or 4 months in the summer. Good luck and welcome to our site.

[MInerva in reply to zenabb]

Thanks zenabb. I feel guilty when I have to repeat the iloprost so often as I feel other people need the hospital bed more than me but I suppose it's the only way to keep the ulcers from deteriorating.

[zenabb]

Don't feel guilty. YOU NEED IT.

[Hidden]

Hi Minerva, I know what you mean by the spicy food, i have developed grooves in my tongue and i cant eat spicy food at all - it hurts like hell! As for the iloprost, you do NOT want to end up with gangrene like i did, so take it when its offered! Also make sure that your multivitamins have vit c and zinc in them, Vitamin C needs zinc for it to work effectively .

[BIGI1950]

Hi. I take Pentoxifyline ER 400mg. 3X a day. It is meant to make your blood cells slippery. I though that sounded funny but I figured I'd try it. Now, I rarely have a Raynaud's "attack". I used to have them multiple times every day. As for ulcers, thank God I have had none, but I read that Paw Paw cream/lotion works wonders, so I bought a tube, just incase. It comes from Australia. I bought it online. Hope this info helps. Be blessed!