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Experiences with
Dermatomyositis
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Hello I'm new here and it's good to be able to contact people who may be going through the same feelings of isolation following my diagnosis
I was finally diagnosed with
Dermatomyositis
in April last year after about 5 years of symptoms which my GP dismissed as psoriasis and me being neurotic.
I was finally diagnosed with
Dermatomyositis
in April last year after about 5 years of symptoms which my GP dismissed as psoriasis and me being neurotic.
Menamoptops
in
Myositis UK
4 years ago
Newly Diagnosed
Diagnosed 6 days ago with
Dermatomyositis
following muscle biopsy. Have been referred to Rheumatology by Dermatologist as looking likely for Systemic Lupus Erythematosus too. I am due to commence a new teaching post (I teach Reception Class in Primary School) next Monday.
Diagnosed 6 days ago with
Dermatomyositis
following muscle biopsy. Have been referred to Rheumatology by Dermatologist as looking likely for Systemic Lupus Erythematosus too. I am due to commence a new teaching post (I teach Reception Class in Primary School) next Monday.
PinkLadyNo1
in
Myositis UK
4 years ago
12 years to diagnose dermatomyositis
Finally after a very long road, a muscle biopsy confirmed it’s
dermatomyositis
. I’m thrilled that the condition was found before an autopsy :).
Finally after a very long road, a muscle biopsy confirmed it’s
dermatomyositis
. I’m thrilled that the condition was found before an autopsy :).
ItTook12Years
in
Myositis UK
4 years ago
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Rituxan
Is anyone taking Rituxan for
Dermatomyositis
? Is it helping your condition?
Is anyone taking Rituxan for
Dermatomyositis
? Is it helping your condition?
Dermatray15
in
Myositis UK
4 years ago
IVIG(intravenous immunogbulin)
Is anyone taking IVIG(intravenous immunogbulin) for
dermatomyositis
? Is it helping your condition?
Is anyone taking IVIG(intravenous immunogbulin) for
dermatomyositis
? Is it helping your condition?
Dermatray15
in
Myositis UK
4 years ago
Swollen face and bruising landed my butt in the ER
So I am fearing either lupus or
dermatomyositis
... ER doc said that both are valid concerns. Have to test autoantibodies now, and go from there to see if I now have yet another burden to deal with... Thanks for reading. I feel so lost and frustrated and sick. Hope your weekend was better than mine.
So I am fearing either lupus or
dermatomyositis
... ER doc said that both are valid concerns. Have to test autoantibodies now, and go from there to see if I now have yet another burden to deal with... Thanks for reading. I feel so lost and frustrated and sick. Hope your weekend was better than mine.
Arrigo
in
Thyroid UK
4 years ago
Does this look like Ankylosing Spondylitis?
I shall mention it to the rheumatologist, if I get a chance, but I've suspected everything from psoriatic arthritis to
dermatomyositis
to glycogen storage disorders, all the time worrying I'm just unfit!
I shall mention it to the rheumatologist, if I get a chance, but I've suspected everything from psoriatic arthritis to
dermatomyositis
to glycogen storage disorders, all the time worrying I'm just unfit!
Chancery
in
NRAS
4 years ago
Could this be fibromyalgia?
In 2019 I suspected all this might have been
dermatomyositis
, and recently I wondered if it might be the even rarer Glycogen Storage Disorder, but I felt I didn't quite fit the latter and went to look at fibromyalgia (I'd dismissed it last year because of the rashes) and on looking a the NHS site's symptom
In 2019 I suspected all this might have been
dermatomyositis
, and recently I wondered if it might be the even rarer Glycogen Storage Disorder, but I felt I didn't quite fit the latter and went to look at fibromyalgia (I'd dismissed it last year because of the rashes) and on looking a the NHS site's symptom
Chancery
in
Fibromyalgia Action UK
4 years ago
Diets
I have
dermatomyositis
I have
dermatomyositis
RCWGolf
in
Myositis UK
4 years ago
Hard Bump/Nodule on Pinky
I have Mixed Connective Tissue Disease with features of RA,
dermatomyositis
, and Sjogren’s. I am wondering if I should call my rheumatologist or my primary doctor.
I have Mixed Connective Tissue Disease with features of RA,
dermatomyositis
, and Sjogren’s. I am wondering if I should call my rheumatologist or my primary doctor.
searcher24
in
NRAS
4 years ago
Lupus/dermatomyositis overlap for 12 years
Hi, I have had Lupus/
dermatomyositis
overlap for 12 years. Last September I came off immunosuppressants and have been well since then. I have just started to get joint pain again in my fingers. -What I wanted to ask is should I be self isolating? I still get the flu jab. Thanks
Hi, I have had Lupus/
dermatomyositis
overlap for 12 years. Last September I came off immunosuppressants and have been well since then. I have just started to get joint pain again in my fingers. -What I wanted to ask is should I be self isolating? I still get the flu jab. Thanks
Lionroar
in
LUPUS UK
4 years ago
Status from my PMR (?) journey
So they called the special unit for inflammatory disease and now it seems that they all agree that something is wrong, and that it is not PMR but a connective tissue disease like polymyositis/
dermatomyositis
, Lupus or the like.
So they called the special unit for inflammatory disease and now it seems that they all agree that something is wrong, and that it is not PMR but a connective tissue disease like polymyositis/
dermatomyositis
, Lupus or the like.
krillemy
in
PMRGCAuk
4 years ago
Has anyone been treated for DM without steroids? Or how quickly did you get off of prednisone if you have?
I have
Dermatomyositis
, as partially confirmed by a skin biopsy, all the symptoms, etc. My doctor also wants me to have a muscle biopsy just to rule out other kinds of myopathies.
I have
Dermatomyositis
, as partially confirmed by a skin biopsy, all the symptoms, etc. My doctor also wants me to have a muscle biopsy just to rule out other kinds of myopathies.
zoeavacado
in
Myositis UK
4 years ago
CSU
Multiple blossoms tests as under Haematology, there first thought suggested I may have
dermatomyositis
although wasn’t presented in bloods. Seen dermatologist, they say I have Cronic Spontaneous Urticaria (CSU) ?
Multiple blossoms tests as under Haematology, there first thought suggested I may have
dermatomyositis
although wasn’t presented in bloods. Seen dermatologist, they say I have Cronic Spontaneous Urticaria (CSU) ?
Pee831
in
MY SKIN
4 years ago
Hair Loss with Dermatomyositis
Hi, I’m quite young (22) and was diagnosed with
Dermatomyositis
back in September, after suddenly becoming so severely inflamed in my joints that I was unable to move, and had to be taken to A&E for urgent tests.
Hi, I’m quite young (22) and was diagnosed with
Dermatomyositis
back in September, after suddenly becoming so severely inflamed in my joints that I was unable to move, and had to be taken to A&E for urgent tests.
PlatinumPenguin
in
Myositis UK
4 years ago
Can NHS GP's order an ENA Panel?
I am waiting for a rheumatology appointment (been waiting since September last year) and have suspected psoriatic arthritis then
dermatomyositis
. But recently I've been wondering if I don't just have plain old Sjogren's Syndrome.
I am waiting for a rheumatology appointment (been waiting since September last year) and have suspected psoriatic arthritis then
dermatomyositis
. But recently I've been wondering if I don't just have plain old Sjogren's Syndrome.
Chancery
in
Sjogren's Support
4 years ago
Anyone get calcinosis?
I only discovered what they were a few weeks ago when I discovered
Dermatomyositis
. It was the fact that they are rare that made me stick to my guns that this might be
Dermatomyositis
- that and the rashes, as I said.
I only discovered what they were a few weeks ago when I discovered
Dermatomyositis
. It was the fact that they are rare that made me stick to my guns that this might be
Dermatomyositis
- that and the rashes, as I said.
Chancery
in
Myositis UK
4 years ago
Diabetes Medicine Metformin for Moon Face
Mr Hough suffers from another rare condition which causes red, scaly rashes on the skin, called
dermatomyositis
, and is doctors told him the steroids would be effective for treating this, too. He says: ‘Taking steroids was like flicking a light switch.
Mr Hough suffers from another rare condition which causes red, scaly rashes on the skin, called
dermatomyositis
, and is doctors told him the steroids would be effective for treating this, too. He says: ‘Taking steroids was like flicking a light switch.
Estellemac
in
PMRGCAuk
4 years ago
High Ferritin and High LDH - any thoughts?
The two most likely is muscle damage (I suspect
Dermatomyositis
, hence me asking her to check) and cancer. Obviously the idea of cancer worries me! If anyone has any ideas, or personal experience of this I'd be grateful to hear them. Thanks!
The two most likely is muscle damage (I suspect
Dermatomyositis
, hence me asking her to check) and cancer. Obviously the idea of cancer worries me! If anyone has any ideas, or personal experience of this I'd be grateful to hear them. Thanks!
Chancery
in
Myositis UK
4 years ago
Any experts on strange blood tests?
The two most likely is muscle damage (I suspected
Dermatomyositis
, hence me asking her to check) and cancer. Obviously the idea of cancer worries me! If anyone has any suggestions or ideas I'd be grateful to hear them. Thanks!
The two most likely is muscle damage (I suspected
Dermatomyositis
, hence me asking her to check) and cancer. Obviously the idea of cancer worries me! If anyone has any suggestions or ideas I'd be grateful to hear them. Thanks!
Chancery
in
Thyroid UK
4 years ago
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