Chilblains: Hi, hope everyone is well... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Chilblains

Jacko37 profile image
16 Replies

Hi, hope everyone is well. Does anyone know how to get rid of really horrible chilblains that have turned in to blisters? I get them every year but not this bad as this is the first time in about 8 years that I haven't had iloprost. Have been on all sorts of medication over the years for raynaurds but couldn't cope with the side effects with any of them. Work is becoming really difficult because I can't bend my fingers! Thanks, X X

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Jacko37
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16 Replies
Deby177 profile image
Deby177

No magic answer input on little deep heat cream bit not sure of the skin has broken that would be advisable, what about aloe Vera? Do you find big relief from the iloprost was that the 8hr drip over 5 days

Jacko37 profile image
Jacko37 in reply to Deby177

I used to have Iloprost 6 hours a day for 5 days, usually in October, sometimes in March as well. Had it for about 6 years but then became intolerant. My hands were great after, but the benefit would only last for about 8 weeks. Saying that, although the ulcers would come back they wouldn't hurt as much! Also by having Iloprost in Oct I wouldn't usually get ulcers until the middle of January in stead of early November. Xx

cowhide profile image
cowhide

Ouch. I get them on my toes but have managed to avoid blistering. Perhaps speak to a pharmacist, that's what I did about mine (to stop the itching); because they have blistered it's important you get the right product. Hope they get better soon.

Jacko37 profile image
Jacko37 in reply to cowhide

Thanks for your reply, can't imagine what it must be like on your toes, bad enough on fingers! How do you manage with shoes? Take care, Xx

cowhide profile image
cowhide in reply to Jacko37

I'm a farmer which is one reason my feet get so cold as to get chilblains (Raynauds secondary to scleroderma) so I am in thick socks and wellies when I am outside at this time of year, at least a reasonable amount of room in them. I spend as little time as possible outside tending to the livestock and use this time of year to catch up with paperwork, so in slippers. I dread getting them on my fingers, it hasn't happened yet although I do get calcinosis and corns on fingertips. I'm on sildenafil and 12.5 mg losartan to help with the Raynauds and the digital ulcers I've had previously (a higher dose drops my blood pressure too much).

Jacko37 profile image
Jacko37 in reply to cowhide

I know what you mean, all medication that I have tried lowers my blood pressure too much. The only thing that helped was Iloprost. However, became intolerant and was really ill last time so it kind of put me off. In all the time that I've had raynaurds/scleroderma never had blisters that have opened up like this before. Take care

Craftyflower profile image
Craftyflower

Mine have been worse than ever this year too. I've just ordered some of this in a hope it works bestchilblainstreatment.com/

I hope you find something that helps for you soon.

Jacko37 profile image
Jacko37 in reply to Craftyflower

Mine too, although I've had blisters and ulcers before, can't remember then breaking open like this before! X X

Barnclown profile image
Barnclown

Wondering if you’ve tried low dose losartan? After a lifetime managing awful weeping, blistering chilblains, my rheumy tried me on 25mg losartan nightly because I can’t tolerate vasodilators (nifedipine, iloprost etc)...the chilblains pretty well stopped completely. I’m a lupus patient, but my rheumy thinks scleroderma is in my mix. Apparently low dose losartan is known to get pos results in scleroderma patients

Jacko37 profile image
Jacko37 in reply to Barnclown

Yes, I've tried them all. Either they do nothing or I can't cope with the side effects. Not a good sign when your fingers go black and break out in blisters. Also get ulcers in my nose! What fun, take care,Xx

Babette profile image
Babette

Ouch!

I used to get them and someone recommended snowfire. I've not had them since so don't know how effective it is.

Nelsons do some really effective creams - the burn and eczema ones are great - and also do one for chillblaims, although I've not tried that either. They stopped making some of them available in health shops but can be ordered from their pharmacy if you give them a call.

I take a good quality gingko biloba during bad winters and it seems to help but it's worth checking the side effects.

Good luck. I hope they heal soon.

Jacko37 profile image
Jacko37 in reply to Babette

Ok, I'll give it a try, thanks for that. To be honest I think I would prefer creams than tablets, I just can't do anything with them! Take care, Xx

Sanmateogirl107 profile image
Sanmateogirl107

if your in pain i want you to try (wild lettuce extract) ebay i use it for raynaud's and crest. hope it works for you. love julie

Jacko37 profile image
Jacko37 in reply to Sanmateogirl107

Ok, Ill give it a go, thanks for your reply, take care, Xx

lupie-Cathy profile image
lupie-Cathy

It’s not covid toes is it if it’s worse than normal? Might want to talk to your Doctor about them just in case. Hope they heal soon what Evers caused them they’re so sore I’m sure! X

Jacko37 profile image
Jacko37 in reply to lupie-Cathy

No, their on my fingers, think they are worse this year because this is the first time in many years that I haven't had iloprost. Thank God my toes have escaped so far! Take care, XX

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