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Scleroderma & Raynaud's UK (SRUK)
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Well the weather might be getting better but I appear to be falling apart , both of my hands are swollen and I have lost all mobility in my fingers , I can't even hold a cup let alone fill a kettle with water , Despite spending the last three months looking like Mrs Michelin man my body is staging a revolution , now my nose has decided to join in the fun , turning a nice shade of blue . I can't get out to the gp so had to send an email asking if he could prescribe some stronger meds as the Lorsatan obviously isn't working , I sent pictures too ..the wonders of technology huh ! , I'll do anything it takes to avoid another 5 days as an in patient having iloprost ...its far too costly being hospitalized !

10 Replies

Hi TJme, my hands aren't too bad, but my feet look worse than your fingers. I'm contemplating the Iloprost, not sure yet. I know the feeling - not being able to make a cup of tea, have accidentally poured boiling water over my hand trying to pour the water (done that 4 times in 2 months). I too provided all the photographs of scarred hands and feet and still nothing :(. Sorry I can't be of any help, but remember you aren't alone.


Can I ask do any of U get like a shock spasm if lift sumthing that hurts so much to cry. Because i keep on getting this and can't stand it. Hope U all get sorted well as sorted ad can get with this thing.


Have you got a wax bath?

It really helps.


Please buy the battery heated glove to protect your hands





I was just wondering whether any of you were smokers.

Just that I have read that smoking can exacerbate the condition.


I have regular Iloprost. I can't stand 5 days, so I asked for it to be reduced to 3 days more often. It helps but you have to persist.

And yes, don't smoke they tell me.


... and maybe cut out the obvious inflammatories like tea and coffee, possibly alcohol; also wheat and milk-related products but you will need to be tested to see whether you have an intolerance.

Sending you my compassion...


Those fingers look really sore. Almost looks like chilblains. Do try to keep the skin moist. Have you thought of trying a wax bath? Gives heat as well as improving the skin.


Some of it is chilblains on a few fingers they have developed into ulcers...if you think my hands look bad you should see my feet !!! I haven't tried wax baths to be honest I can't afford them .I am going to ask to be seen by a different rheumatologist as I have never had any tests done other than my gp doing bloods , My one and only visit with the rheumy he didn't even examine me he just looked at my hand and said " You have raynauds" that was the full extent of my appointment .

I'm having other problems with my fingers , as well as being sore they are very dry round the tips of my fingers , the skin is thickened ,often blistering and peeling off leaving my hands looking like a leper ...i went to collect a prescription from a local pharmacy and was asked not to touch anything as it looks contagious ..

It's a bit dispiriting to say the least , I have really pretty purpley black toes, got ulcers on the tops of my big toes both feet , the heels and balls of my feet look like I've been hit by a meningitis rash ( those are the bits that aren't covered in thickening skin )..,not very nice to look at and quite painful to walk ...

Time for me I think to get a second opinion ...Lorsatan doesn't seem to be making any difference ...and if it is then I dread to see what I would look like without it .


I don't know where you live but get a referral to a specialist centre. You shouldn't be suffering like this. If you want to ring the RSA (01270 872776) and leave your phone number I will ring you back and point you in the right direction.



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