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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