Re: Who else has dermatomyositis?

[Guest guest]

Zena,

I do, I do....not that it's something to get excited about. I'm fairly recently diagnosed though I've had what sounds like the exact same hand 'rash' that you describe for a very long time. My pulmo at Duke calls it "Mechanic hand". According to him a flare of the rash can actually be a warning that the lung problems could be near flaring also. I actually remember having it prior to noticing any shortness of breath.

The only thing that ever made the awful peeling, scaling itching mess go away completely was the prednisone. When I was on high doses of it the rash disappeared as though it had never been there at all. Once I had been completely off the prednisone for about 6 months it began to come back. I also began to have other issues at that point, a similar rash above my eyelids, muscle weakness in the large muscles closest to my trunk (upper arms and thighs). So long story short, they did all the bloodwork, myositis panel etc, a muscle biopsy and ta da....dermatomyositis.

Discussed the various options with my rheumy and settled on Imuran by itself (no prednisone because I'm working hard to lose weight). The rash around my eyes has vanished and my hands have cleared about 75-80%. The muscle weakness is still with me but it's a little bit better.

As for home remedies for my hands, I honestly never had any luck with anything. I used everything from cortisone cream to pure lanolin and nothing had any effect on it at all. I remember it being very discouraging. Does yours itch. Mine did and it drove me stark raving mad. I wanted to take a cleaver and chop my hands off. I could get momentary relief with heavy cream like Eucerin but it was only that momentary relief. If someone else has an idea I'd love to hear it!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, April 18, 2009 11:09:54 AMSubject: Who else has dermatomyositis?

Or other connective tissue disease? I've had the dms for years, one of the first manifestations of it was a dry scaly rash on my fingers. My chest physician has been trying to reduce my steroid intake and this rash is coming back. I'm certain the two are connected and I have an appointment to see my rhuemy, but not til june.

When I first had it I found some relief by soaking my hands in oils and creams, but this time it doesn't seem to be working, does anyone else have any home remedies I can try?

At the moment, until I see my rhuemy I just want to stave it off rather than get rid of it completely so he can see what I'm dealing with but I don't want it getting to the point it was before I went on the pred where the skin would crack and break.

Any ideas?

Love Ze xx

[Guest guest]

Hi MB

Thanks, I knew there was someone else, just couldn't remember who it was. I think I'll e-mail my chest physician and see if she can contact my rhuemy and they can decide between them. I'm in having my tx evaluation next week, so I won't be around, but hopefully I can get my e-mails.

Yes it itches like mad, and you've just made me realise why my eyelids have been itching too! And my scalp! Never ending fun all this isn't it.

Love Ze xx

[Guest guest]

Zena I use either Manuka Honey (those little Bee's put all sorts of wonderful things in their Honey... this particular Honey is well documented for its skin healing properties.. New Zealand in origin..... try Health Food Shop) or Nipple Balm Gloop...Friar's Balsm I think it's called! Great for cracked Nipples when breatsfeeding 7 great for cracked bits n' pices too!

GIO>> > Or other connective tissue disease? I've had the dms for years, one of> the first manifestations of it was a dry scaly rash on my fingers. My> chest physician has been trying to reduce my steroid intake and this> rash is coming back. I'm certain the two are connected and I have an> appointment to see my rhuemy, but not til june.> > When I first had it I found some relief by soaking my hands in oils and> creams, but this time it doesn't seem to be working, does anyone else> have any home remedies I can try?> > At the moment, until I see my rhuemy I just want to stave it off rather> than get rid of it completely so he can see what I'm dealing with but I> don't want it getting to the point it was before I went on the pred> where the skin would crack and break.> > Any ideas?> > Love Ze xx>

[Guest guest]

Zena I use either Manuka Honey (those little Bee's put all sorts of wonderful things in their Honey... this particular Honey is well documented for its skin healing properties.. New Zealand in origin..... try Health Food Shop) or Nipple Balm Gloop...Friar's Balsm I think it's called! Great for cracked Nipples when breatsfeeding 7 great for cracked bits n' pices too!

GIO>> > Or other connective tissue disease? I've had the dms for years, one of> the first manifestations of it was a dry scaly rash on my fingers. My> chest physician has been trying to reduce my steroid intake and this> rash is coming back. I'm certain the two are connected and I have an> appointment to see my rhuemy, but not til june.> > When I first had it I found some relief by soaking my hands in oils and> creams, but this time it doesn't seem to be working, does anyone else> have any home remedies I can try?> > At the moment, until I see my rhuemy I just want to stave it off rather> than get rid of it completely so he can see what I'm dealing with but I> don't want it getting to the point it was before I went on the pred> where the skin would crack and break.> > Any ideas?> > Love Ze xx>

[Guest guest]

Zena I use either Manuka Honey (those little Bee's put all sorts of wonderful things in their Honey... this particular Honey is well documented for its skin healing properties.. New Zealand in origin..... try Health Food Shop) or Nipple Balm Gloop...Friar's Balsm I think it's called! Great for cracked Nipples when breatsfeeding 7 great for cracked bits n' pices too!

GIO>> > Or other connective tissue disease? I've had the dms for years, one of> the first manifestations of it was a dry scaly rash on my fingers. My> chest physician has been trying to reduce my steroid intake and this> rash is coming back. I'm certain the two are connected and I have an> appointment to see my rhuemy, but not til june.> > When I first had it I found some relief by soaking my hands in oils and> creams, but this time it doesn't seem to be working, does anyone else> have any home remedies I can try?> > At the moment, until I see my rhuemy I just want to stave it off rather> than get rid of it completely so he can see what I'm dealing with but I> don't want it getting to the point it was before I went on the pred> where the skin would crack and break.> > Any ideas?> > Love Ze xx>