Reynauds

[Djcharlie]

I have been diagnosed years ago with Raynaud's I've had the drip treatment but it never did much I'm now on sildenafil which has made my hands better but my feet are suffering badly and I sometimes feel like my 2 toes are like stone does this happen to anyone else thanks

[Spook257]

I've had severe reynaulds for about 4 yrs. Get ulcers and chilblains on hands and feet. Sometimes household due to my toes. Have tried five drugs and noting worked. Drip treatment did nothing. Have started bosentan but still developing new ulcers. I'm starting to think nothing will help even though its getting worse. Sorry, this is not very encouraging.

[Djcharlie in reply to Spook257]

Thank you for replying my biggest struggle is with how numb the top of my foot goes it's like I've had my feet in the freezer then they warm up with socks or blankets and then they burn and go bright pink it's quite depressing at times there's never a happy medium

[cls_98]

Hi I used to have awful Raynaud's attacks, even in our warm home, and terrible chilblains, but I'm now on Tadalafil as well as Nifedipine 30mg BD (usually a smaller dose during the summer, but this is increasing as I'm aging) and the symptoms are much better.

Am I right in thinking that you have a Rheumatologist, if you're on the Sildenafil already? Could it be worth having a chat with them to discuss other options?

Everyone is different and reacts differently to different medication, so I have always tried to keep an open mind and trial something to see whether it works for me or not.

I really hope that you can get some relief from these terrible symptoms. Cx

[Djcharlie in reply to cls_98]

I was at the doctor's yesterday and was asked are your feet always this cold 🙄 and explained again yes I suffer terrible and was told I have a good pulse in my feet so just keep on with the sildenafil,,,,great thanks I will,,, total waste of time to be honest I'll just plod on like I have been but at least I'm not getting any ulcers now still get chilblains in the colder weather,I think it's just something I'll have to live with x

[ShonaGreen]

Hi Djcharlie I’m in a similar situation with bad chilblains this year, Rheumatologist thinks it’s now secondary Raynauds and prescribed Sildenafil but it’s given me bad headaches and flushing, still developing new chilblains too so changing to Fluoxetine soon. Hoping with the better weather the chilblains will improve too!

[Djcharlie in reply to ShonaGreen]

Chilblains are the worst,I get headaches and flushing as well to the point of my face looking like I've been burnt it's just a constant viscous circle, hopefully fluoxetine will work for you

[Windsorgirl66]

I have had reynaulds many years no treatment and my feet feel like stone my toes turn purple and black. But whole feet feel they encased in stone.

[Djcharlie in reply to Windsorgirl66]

I know how you feel it's hard to describe how bad it feels and unless you've had it I don't think people truly understand what it feels like and how much it affects you