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Dermatomyositis
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Introductions
Hi all, I was dx with
dermatomyositis
sine myositis due to my Chronic Lymphocytic Leukemia (CLL). It took just over 6 months of biopsies, blood tests, the other dermatologists coming in and looking at me. Once dx I chose to start on the CLL treatment.
Hi all, I was dx with
dermatomyositis
sine myositis due to my Chronic Lymphocytic Leukemia (CLL). It took just over 6 months of biopsies, blood tests, the other dermatologists coming in and looking at me. Once dx I chose to start on the CLL treatment.
Eliotf
in
Myositis UK
7 years ago
Dermatomyositis & similar skin conditions in CLL
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-4362.2000.00850.x/full From that starting point it is worth knowing that
Dermatomyositis
is in the minority camp of non-hemolytic autoimmune complications of CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5561123/ From the Introduction: "
Dermatomyositis
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-4362.2000.00850.x/full From that starting point it is worth knowing that
Dermatomyositis
is in the minority camp of non-hemolytic autoimmune complications of CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5561123/ From the Introduction: "
Dermatomyositis
ThreeWs
in
CLL Support
7 years ago
Previous autoimmune conditions
In my early 40's I was diagnosed with
Dermatomyositis
and treated with steroids, a long story but after 18 months I got better, and other than psoriasis have not had any problems since, up until recently that is.
In my early 40's I was diagnosed with
Dermatomyositis
and treated with steroids, a long story but after 18 months I got better, and other than psoriasis have not had any problems since, up until recently that is.
SouthHams
in
PMRGCAuk
7 years ago
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I was diagnosed with lupus,
dermatomyositis
, connective tissue disorder, ra, hypothyroidism, and I am about at the end of my rope.
I was diagnosed with lupus,
dermatomyositis
, connective tissue disorder, ra, hypothyroidism, and I am about at the end of my rope.
Kgg1960
in
Pernicious Anaemia Society
7 years ago
Myositis on facebook & Twitter
Goode https://www.facebook.com/groups/243260986023746/ Myositis UK's facebook page https://www.facebook.com/Myositis-UK-428638317246585/ Team Muscle page - Myositis UK's fundraising page https://www.facebook.com/MyositisSupportGroup/ Myositis UK's JDM facebook page https://www.facebook.com/Juvenile-
Dermatomyositis
-JDM
Goode https://www.facebook.com/groups/243260986023746/ Myositis UK's facebook page https://www.facebook.com/Myositis-UK-428638317246585/ Team Muscle page - Myositis UK's fundraising page https://www.facebook.com/MyositisSupportGroup/ Myositis UK's JDM facebook page https://www.facebook.com/Juvenile-
Dermatomyositis
-JDM
Jo-Goode
Administrator
in
Myositis UK
7 years ago
RA And Dermatomyositis
So I have been looking up about
dermatomyositis
and wondered if anyone knows anything about this and if so can you tell me your symptoms that you are having? Thank you.
So I have been looking up about
dermatomyositis
and wondered if anyone knows anything about this and if so can you tell me your symptoms that you are having? Thank you.
Zeke-17
in
NRAS
7 years ago
Paula's Broken Marathon
You may or may not know that I was diagnosed with Juvenile
Dermatomyositis
just before my 6th birthday although looking back you could see I had been slowly declining in health for at least a year before.
You may or may not know that I was diagnosed with Juvenile
Dermatomyositis
just before my 6th birthday although looking back you could see I had been slowly declining in health for at least a year before.
Jo-Goode
Administrator
in
Myositis UK
7 years ago
"The one thing I wish I had been told when I was first diagnosed..."
I am heart-aware (atrial fibrillation), diet -aware (diabetes and fatty liver and weight), exercise- aware (
dermatomyositis
), and mind-aware (depression).
I am heart-aware (atrial fibrillation), diet -aware (diabetes and fatty liver and weight), exercise- aware (
dermatomyositis
), and mind-aware (depression).
jan-ran
in
Living with Fatty Liver and NASH
7 years ago
Fundraising for Myositis UK - Race at your Pace 100 mile walk in throughout May challenge.
For those who don't know I suffer from Antisynthetase Syndrome with the
Dermatomyositis
type of Myositis. I also have all factors of this condition including Intersitial Lung Disease. Thank you to all those who have donated do far it means alot to me.
For those who don't know I suffer from Antisynthetase Syndrome with the
Dermatomyositis
type of Myositis. I also have all factors of this condition including Intersitial Lung Disease. Thank you to all those who have donated do far it means alot to me.
SuzellaBuhlmann
in
Myositis UK
7 years ago
New Study - Hiker’s Feet
https://www.hopkinsrheumatology.org/2017/04/hikers-feet-new-skin-finding-patients-
dermatomyositis
/ A study lead by Lisa Christopher-Stine, M.D., M.P.H. identified “Hiker’s Feet” as a new skin finding in some patients with inflammatory muscle disease (myositis).
https://www.hopkinsrheumatology.org/2017/04/hikers-feet-new-skin-finding-patients-
dermatomyositis
/ A study lead by Lisa Christopher-Stine, M.D., M.P.H. identified “Hiker’s Feet” as a new skin finding in some patients with inflammatory muscle disease (myositis).
Jo-Goode
Administrator
in
Myositis UK
7 years ago
Colin B's intro.
I was formally diagnosed with
Dermatomyositis
in February 2017 having been admitted to The Royal London Hospital in a state of total collapse. After a two week stay under the consultant Dr Stephen Kelly and his superb team I was released back into the world to continue my slow but steady recovery.
I was formally diagnosed with
Dermatomyositis
in February 2017 having been admitted to The Royal London Hospital in a state of total collapse. After a two week stay under the consultant Dr Stephen Kelly and his superb team I was released back into the world to continue my slow but steady recovery.
fbcburnett
in
Myositis UK
7 years ago
Did you know?
It's the #OlivierAwards tonight :-) Did you know Laurence Oliver had
Dermatomyositis
? "Some artists have 10‐year spans of greatness — only to level off as the world moves on.
It's the #OlivierAwards tonight :-) Did you know Laurence Oliver had
Dermatomyositis
? "Some artists have 10‐year spans of greatness — only to level off as the world moves on.
Jo-Goode
Administrator
in
Myositis UK
7 years ago
Information, links & Myositis specialist clinics
Specialist
Dermatomyositis
, Polymyositis and Adult Juvenile.
Specialist
Dermatomyositis
, Polymyositis and Adult Juvenile.
Jo-Goode
Administrator
in
Myositis UK
7 years ago
Idera IMO-8400 Clinical Trial - Video Chat Session
Background to the drug and trial is here: https://understandingmyositis.org/pioneer-a-new-clinical-trial-for-adults-with-
dermatomyositis
-is-now-recruiting/ Registration for the chat session, which will be held on 28th Feb, is here: https://understandingmyositis.org/events/event/idera-video-chat-feb282017
Background to the drug and trial is here: https://understandingmyositis.org/pioneer-a-new-clinical-trial-for-adults-with-
dermatomyositis
-is-now-recruiting/ Registration for the chat session, which will be held on 28th Feb, is here: https://understandingmyositis.org/events/event/idera-video-chat-feb282017
Lintilla
in
Myositis UK
8 years ago
Social Media & website links
https://www.facebook.com/pages/Juvenile-
Dermatomyositis
-JDM/95955942990 Teddy-Bo his friends, adventures and juvenile
dermatomyositis
Facebook Page is administered by Paula Jordan and Nikki Coleman.
https://www.facebook.com/pages/Juvenile-
Dermatomyositis
-JDM/95955942990 Teddy-Bo his friends, adventures and juvenile
dermatomyositis
Facebook Page is administered by Paula Jordan and Nikki Coleman.
Jo-Goode
Administrator
in
Myositis UK
8 years ago
Myositis UK AGM & Conference
The format for the day is as for previous years with the charities AGM being held alongside the Conference, which will include separate Break Out sessions for Juvenile
Dermatomyositis
,
Dermatomyositis
, Polymyositis, and Inclusion Body Myositis.
The format for the day is as for previous years with the charities AGM being held alongside the Conference, which will include separate Break Out sessions for Juvenile
Dermatomyositis
,
Dermatomyositis
, Polymyositis, and Inclusion Body Myositis.
Jo-Goode
Administrator
in
Myositis UK
8 years ago
Just joined!
Hi I'm gillian1966☺ I was diagnosed with
dermatomyositis
with ILD last year
Hi I'm gillian1966☺ I was diagnosed with
dermatomyositis
with ILD last year
gillian1966
in
Myositis UK
8 years ago
Dermatomyositis - Information & links
Specialist in
Dermatomyositis
, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Specialist in
Dermatomyositis
, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Jo-Goode
Administrator
in
Myositis UK
8 years ago
Polymyositis - Information & links
Specialist in
Dermatomyositis
, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Specialist in
Dermatomyositis
, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Jo-Goode
Administrator
in
Myositis UK
8 years ago
Juvenile Dermatomyositis - Information & links
◾Guide to Juvenile
Dermatomyositis
Written by Professor Lucy Wedderburn, Great Ormond Street Hospital.
◾Guide to Juvenile
Dermatomyositis
Written by Professor Lucy Wedderburn, Great Ormond Street Hospital.
Jo-Goode
Administrator
in
Myositis UK
8 years ago
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