Re: Diagnosing Dermatomyositis

[Guest guest]

Hi Lynn :-)

I'll gather the email addresses for you and get them off sometime today

hopefully....can't hurt to email and see what they might have to say atleast.

I was VERY impressed with the response I recieved from this group...way

more than I have gotten in the past when I have blind emailed doctors (although

there has ALWAYS been atleast one that was willing to email back and usually

with info I needed).

Theoretically, yes, you could have PM/DM and Psoriatic Arthritis, there

are just pretty astronomical odds against it happening....thus our continued

hunt for what is really happening with me. I figure its either I

have DM with an unusual skin manifestation, or its the Mito and this is

how its choosing to express itself. Hopefully I'll have a better

idea after we see the kids doctor. We shall see!! Hate hearing

that your moms docs are not doing much for her....PA can really be a pain.

Forgive me....you confused me in the last paragraph.....did your doc

say that the rash does or does not respond to pred?? Prior to going

on the high doses back in August over here, I had three short bursts of

pretty low dose pred for other reasons....each time, the PA was brought

under control until I was off the pred again and then it would come raging

back. However, while it was controlled on the highest doses of pred

I have been on, it started to return again as we lowered the dose (coming

back at about 40mgs), and is continuing to worsen as I come down even further.

So the pred has effectively gotten my PM/DM under control at this point,

and I am coming off the pred without a return of it so far, but its not

controlling the PA completely anymore. I figure we will be talking

about it all when I see the rheumy tomorrow, and again when I see the dermatologist

next week!!

Oh, good news...managed to get an appointment with a new rheumy for

the 18th!!! Will be interesting to see his take on things, and will

be nice to not be driving so far for these appointments, and hopefully

having someone that has a clue!! LOL

BIG hugs,

Lynn wrote:

You know, , it might be worth getting

those

doctors e-mail addresses.

I guess you can have psoriasis and Pm or

DM...wow...what a double whammy tho! My mom has

psoriasis so bad...golly! and PA, too. And her docs

don't do that much for her. She never even heard of

Enbrel.

My rheumy told me various autoimmune disorders are

also accompanied by a rash, and that the DM does not

respond only to Pred., like mine did. I still have

it, the plaquenil is really helping wipe it out on my

hands! Well, we shall see! Thanks again!

Lynn

[Guest guest]

I'll only be able to blame if I attempt to put up the kitchen

backsplashes!!

Ed from Predville

> > Lynn,

> > had the eyelid rash. He actually had an open lesion on his

> left

> > eyelid that was hard to get to heal. Over the counter Bacitracin

> did the

> > trick in a day or two. It actually scarred. To say that your not

> having

> > the eyelid rash would be a determining factor seems silly. If we

> all know

> > anything about this disease is how differently it affects

different

> people.

> > 's Dr. was initially very interested in 's fingernail

> beds.

> > Looked at them very closely under a microscope to see if there

were

> broken

> > vessels and there were. I guess that would be the same reason you

> would

> > have a rash on your eyelids. DM causes the very tiny vessels to

> burst.

> > Very tiny vessels in the beds of our fingernails and eyelids.

> Don't let

> > them use that one criteria to base a dx on. Just my opinion!

> > Dr. Cari

> >

> >

> >

> > From: Lynn <lynnf_99@y...>

> > >Reply-To: OurMyositis@y...

> > >To: Myositis <OurMyositis@y...>

> > >Subject: Diagnosing Dermatomyositis

> > >Date: Sun, 3 Mar 2002 17:42:03 -0800 (PST)

> > >

> > >Hi Gang!

> > >

> > >Those of you dx'd with DM....lately, all the

> > >docs...from the rheumy to the neurologist have made

> > >the statement that I don't have DM because I never had

> > >the rash on my eyelids. That seems to have become the

> > >determining factor on the diagnosis!

> > >

> > >So my question...of course, did or do you have the

> > >eyelid rash??

> > >

> > >Lynn

> > >ps. doing an unofficial poll to tell my doc next time

> > >I see her!

> > >

> > >=====

> > > " I had rather wear out than rust out. "

> > >-- Whitefield

> > >

> > >__________________________________________________

> > >

[Guest guest]

Lynn wrote:

You know, , it might be worth getting

those

doctors e-mail addresses.

Kissel, M.D. email: kissel.2@...

Rup Tandan, M.D. email: tandan@...

Peltier M.D. email: wlarson@...

Hope this helps friend!!

BIG hugs,