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Dermatomyositis
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Hello to every sufferer fighting his/her way back to a kind of normality
Hello everybody, new to this group and new to
Dermatomyositis
(diagnosed 5 weeks ago). Finding the whole thing and meds side effects (steroids and Methotrexate) do make my life difficult, but I guess it was to be expected. I am in England, close to Southampton.
Hello everybody, new to this group and new to
Dermatomyositis
(diagnosed 5 weeks ago). Finding the whole thing and meds side effects (steroids and Methotrexate) do make my life difficult, but I guess it was to be expected. I am in England, close to Southampton.
Anne88
in
Myositis UK
5 years ago
3rd Global Conference on Myositis Berlin, 27-30th March 2019
Myositis UK has always recognised the importance to support the next generation of Myositis researchers, so is pleased to fund 3 grants of 15,000 Euro (45,000 Euro) for Juvenile
Dermatomyositis
, Inclusion Body Myositis & Polymyositis/
Dermatomyositis
, that will be awarded at #GCOM2019 We would like
Myositis UK has always recognised the importance to support the next generation of Myositis researchers, so is pleased to fund 3 grants of 15,000 Euro (45,000 Euro) for Juvenile
Dermatomyositis
, Inclusion Body Myositis & Polymyositis/
Dermatomyositis
, that will be awarded at #GCOM2019 We would like
Jo-Goode
Administrator
in
Myositis UK
5 years ago
Lupus, Vasculitis and Blocked Blood Vessels
All of the autoimmune rheumatic diseases – including lupus, rheumatoid arthritis (RA), scleroderma and
dermatomyositis
– involve some level of underlying vasculitis. If you biopsy a swollen joint in a person who has RA, you routinely find vasculitis.
All of the autoimmune rheumatic diseases – including lupus, rheumatoid arthritis (RA), scleroderma and
dermatomyositis
– involve some level of underlying vasculitis. If you biopsy a swollen joint in a person who has RA, you routinely find vasculitis.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
5 years ago
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Have you been diagnosed with dermatomyositis as well as thyriod issues?
Is this common and any advice would be of help? Early days and could find its all worry for nothing...keeping positive whatever the results, I just find knowledge can be key. Symptoms line up and GP talked through it, awaiting dematology referal and initial blood results. Do they take into account the
Is this common and any advice would be of help? Early days and could find its all worry for nothing...keeping positive whatever the results, I just find knowledge can be key. Symptoms line up and GP talked through it, awaiting dematology referal and initial blood results. Do they take into account the
BitterSweetS
in
Thyroid UK
6 years ago
Can I just be 25?
Ive been diagnosed with MTCD+polymyositis+
dermatomyositis
since I was 20 years old and many flare ups and hair loss later, I’m 25 now. I’ve been on prednisone, hydroxychloriquine and azathioprine for my joint and muscle pains and to keep my immune suppressed.
Ive been diagnosed with MTCD+polymyositis+
dermatomyositis
since I was 20 years old and many flare ups and hair loss later, I’m 25 now. I’ve been on prednisone, hydroxychloriquine and azathioprine for my joint and muscle pains and to keep my immune suppressed.
Mishycake
in
LUPUS UK
6 years ago
I’ve gone from being a possible mental case to full on bombardment with different specialist appointments 😥 possibly Dermatomyositis
I’ve also learned that many With
Dermatomyositis
are diagnosed with lupus and vice versa as they share so many symptoms and produce the same results in a skin biopsy .
I’ve also learned that many With
Dermatomyositis
are diagnosed with lupus and vice versa as they share so many symptoms and produce the same results in a skin biopsy .
Lisalou19
in
LUPUS UK
6 years ago
Muscle atrophy - 4 years and no diagnosis
She had a positive result for myositis, but when they’ve done a second test to find out which type it is, it came back negative(it wasn’t polymyositis or
dermatomyositis
...very confusing).
She had a positive result for myositis, but when they’ve done a second test to find out which type it is, it came back negative(it wasn’t polymyositis or
dermatomyositis
...very confusing).
Whitey11
in
Thyroid UK
6 years ago
Blood test results- any advice please?
I’ve been told I have thyroiditis and blood tests show thyroid antibodies of 422ku/l (0-34) I was under investigation for muscle wasting and have just been diagnosed with
Dermatomyositis
. The hospital endocrinologist says that my thyroid levels are normal so I don’t need to be seen.
I’ve been told I have thyroiditis and blood tests show thyroid antibodies of 422ku/l (0-34) I was under investigation for muscle wasting and have just been diagnosed with
Dermatomyositis
. The hospital endocrinologist says that my thyroid levels are normal so I don’t need to be seen.
helipops
in
Thyroid UK
6 years ago
New here 🙋🏼♀️
We have a daughter with
dermatomyositis
/lupus and my mother had severe RA; dodgy genes for sure. I shall be reading posts with great interest and it’s wonderful to have found this forum 🍄🍄🍄
We have a daughter with
dermatomyositis
/lupus and my mother had severe RA; dodgy genes for sure. I shall be reading posts with great interest and it’s wonderful to have found this forum 🍄🍄🍄
Penelope-Mary
in
Myositis UK
6 years ago
Venetoclax and mouth sores
I look forward to hearing from you Eliot Finkelstein Dx with CLL May 2013 Failed FCR 2016 Stopped Ibrutinib Dec 2016 till 2/28/17 due to: Amyopatic
Dermatomyositis
started Jan 2017 dx Aug 2017 Venetoclax & Obinutuzumab -Started Aug 2017
I look forward to hearing from you Eliot Finkelstein Dx with CLL May 2013 Failed FCR 2016 Stopped Ibrutinib Dec 2016 till 2/28/17 due to: Amyopatic
Dermatomyositis
started Jan 2017 dx Aug 2017 Venetoclax & Obinutuzumab -Started Aug 2017
Eliotf
in
CLL Support
6 years ago
Awaiting diagnosis
I think i may may have
dermatomyositis
as i have skin problems. My story starts a few years ago. I have been fatigued and struggled to do things for at least a few years but as i have a desk job so ive managed.
I think i may may have
dermatomyositis
as i have skin problems. My story starts a few years ago. I have been fatigued and struggled to do things for at least a few years but as i have a desk job so ive managed.
Thighpain70
in
Myositis UK
6 years ago
Myositis UK Afternoon Tea Meetup Manchester 19th May
*** LAST FEW PLACES AVAILABLE *** Myositis UK Afternoon Tea Meetup - Manchester 19th May Guest Speakers: Dr Hector Chinoy & Dr Liza McCann 😬 Free to Myositis UK members (membership also free) https://www.meetup.com/MyositisUK/events/247837886/ #MyositisUK #
Dermatomyositis
#Polymyositis
*** LAST FEW PLACES AVAILABLE *** Myositis UK Afternoon Tea Meetup - Manchester 19th May Guest Speakers: Dr Hector Chinoy & Dr Liza McCann 😬 Free to Myositis UK members (membership also free) https://www.meetup.com/MyositisUK/events/247837886/ #MyositisUK #
Dermatomyositis
#Polymyositis
Jo-Goode
Administrator
in
Myositis UK
6 years ago
BBC Nicky Campbell 5 Live Radio Show
Michael spoke on BBC Nicky Campbell 5 Live radio show about
Dermatomyositis
and how the skin aspect is effecting his life. Starts @ 18.00 to 34.20 https://www.bbc.co.uk/programmes/b09v5vdh
Michael spoke on BBC Nicky Campbell 5 Live radio show about
Dermatomyositis
and how the skin aspect is effecting his life. Starts @ 18.00 to 34.20 https://www.bbc.co.uk/programmes/b09v5vdh
Jo-Goode
Administrator
in
Myositis UK
7 years ago
Not the lupus!
Well... just about a year after I was convinced I had "the lupus" I have been diagnosed with
dermatomyositis
. I feel *happy* that there is something actually wrong. How sick is that? I still haven't seen a specialist but being less crazy feels kinda good.
Well... just about a year after I was convinced I had "the lupus" I have been diagnosed with
dermatomyositis
. I feel *happy* that there is something actually wrong. How sick is that? I still haven't seen a specialist but being less crazy feels kinda good.
Dessaboo
in
LUPUS UK
7 years ago
Living with Institial Lung Disease
I would be interested in touching base with people who have developed Intitial Lung Disease as a complication of an auto-immune disease,
dermatomyositis
.
I would be interested in touching base with people who have developed Intitial Lung Disease as a complication of an auto-immune disease,
dermatomyositis
.
Ozrowena
in
Lung Conditions Community Forum
7 years ago
Hello I’m new
However I’m convinced I have
dermatomyositis
as for years I have red knuckles. They are not raised or cracked just red but do sometimes burn in extreme cold and get cracked. The redness disappears when blanched. Is that normal for gottrons sign or does blanching mean it’s not gottrons sign?
However I’m convinced I have
dermatomyositis
as for years I have red knuckles. They are not raised or cracked just red but do sometimes burn in extreme cold and get cracked. The redness disappears when blanched. Is that normal for gottrons sign or does blanching mean it’s not gottrons sign?
VictoriaVic
in
Myositis UK
7 years ago
Im new xx
I am mildly terrified in case I have
Dermatomyositis
although at the same time I will be relieved to have a diagnosis. What is long term prognosis and is the symptoms manageable? Please help xx
I am mildly terrified in case I have
Dermatomyositis
although at the same time I will be relieved to have a diagnosis. What is long term prognosis and is the symptoms manageable? Please help xx
Lisawill
in
Myositis UK
7 years ago
New member here , recently diagnosed with Dermatomyositis 😐
I visited my doctors , i was prescribed some antihistamines which didn't work , after seeing another doctor who suspected
Dermatomyositis
i was reffered to a Rheumatoligist , after undergoing countless tests on my blood nerves and muscles i was started on hydroxychloraquine (400mg/day) 2 weeks ago and
I visited my doctors , i was prescribed some antihistamines which didn't work , after seeing another doctor who suspected
Dermatomyositis
i was reffered to a Rheumatoligist , after undergoing countless tests on my blood nerves and muscles i was started on hydroxychloraquine (400mg/day) 2 weeks ago and
Mark_A_UK
in
Myositis UK
7 years ago
Dermatomyotisis Treatment Options
I am am a 36 year old female.I was diagnosed with
dermatomyositis
about 10 years ago but my CK levels were not super high and they said it was dormant and suggested we dont treat for now.
I am am a 36 year old female.I was diagnosed with
dermatomyositis
about 10 years ago but my CK levels were not super high and they said it was dormant and suggested we dont treat for now.
Littlegem22
in
Myositis UK
7 years ago
Eye pain
Hi I have
dermatomyositis
, treated with rituximab 10 weekly but am recently- last few months - suffering severe eye pain anyone experiencing similar any treatment suggestions pain is excruciating at night ophthalmologist prescribed eye drops for dry eyes these do not work. Thanks in advance
Hi I have
dermatomyositis
, treated with rituximab 10 weekly but am recently- last few months - suffering severe eye pain anyone experiencing similar any treatment suggestions pain is excruciating at night ophthalmologist prescribed eye drops for dry eyes these do not work. Thanks in advance
Rsheppard
in
Myositis UK
7 years ago
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