BBC Nicky Campbell 5 Live Radio Show
Jo-Goode3 days ago
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...
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Change of venue for London Meetup 21st April
Please note the venue for the afternoon tea Meetup in London has changed to Browns Victoria
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New here. One question
Anne_0816 days ago
Does anyone here have lesions like eczema with pain(or burn) in the skin of the knees and elbows? and do you know depigmented vitiligo-like ...
Today is Rare Disease Day!
Jo-Goode21 days ago
Today is rare disease Day 😬
It's a day where rare diseases join together, from all over the world, to highlight the issues faced with having...
Myositis UK Meetup Afternoon Tea London - Guest Speaker: Dr Patrick Gordon
Jo-Goode23 days ago
Afternoon Tea Meetup London - Guest Speaker Dr Patrick Gordon
Myositis UK Meetup's give the opportunity to meet and chat with others about My...
IBM Home exercise program
Jo-Goodea month ago
1252tima month ago
Hi. I was diagnosed with IBM last year. I got a cross trainer but had to sell it when I became weaker. I’m thinking of getting a recumbent c...
Hello and here’s my very short story.
Jgbgta month ago
So today I am in a bed in the local DGH with IV steroids for 3 days. It’s really scary. I’m a healthy (I thought) 34 year old male with wif...
4 Replies1 Like
Myositis UK Meetup Afternoon Tea - Manchester 19th May
Myositis UK Afternoon Tea, Chancellors Hotel, Manchester
Saturday 19th May 2018 - 2pm
Guest Speakers: Dr Hector Chinoy & Liza McCann
This Valentine's Day #LoveYourHeart
This Valentine's Day #LoveYourHeart ❤️
Most people with auto immune disease do not know they are at an increased risk of developing a heart c...
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Myositis UK posts on facebook & Twitter
VonnieD2 months ago
Today I took my first dose of methotrexate and prednisolone. It's taken a little while since being diagnosed with Polymyositis in November ...
1 Reply2 Likes
Annual Patient Conference videos (USA)
MAuk2 months ago
The Myositis Organization (a US based forum) has links on the front page for the annual Myositis Patient Conference. The presentations are o...
My angry rash
Dessaboo2 months ago
Well... how'd you like that! *lol*
3 Replies1 Like
Im new xx
Lisawill2 months ago
Hi I have suffered from this rash plus ongoing tiredness and muscle aches for about 7 years now, sometimes without any symptoms at all but s...
Oral steroids vs IM injections?
One of the rheumatologist I saw claimed that IM steroids had fewer side effects to oral ones. The neurologist said there was no difference....
Hello I’m new
VictoriaVic2 months ago
Hi I’m getting tests done at the minute by GP for a range of autoimmune and muscle connective disease. However I’m convinced I have dermatom...
2 Replies1 Like
EMG next week
Parkerc3 months ago
Hi everyone, I am due to have an EMG next week to test for DM. Has anyone had this done? Does it hurt and is it reliable? This is my last ch...
Dermatomyotisis Treatment Options
Littlegem223 months ago
Hi there. I am new on here. I am am a 36 year old female.I was diagnosed with dermatomyositis about 10 years ago but my CK levels were not ...
New member here , recently diagnosed with Dermatomyositis 😐
Mark_A_UK3 months ago
Hello members , i'm Mark , i joined here at the weekend , at the end of May 2017 a bright red rash started covering my face ,which i presum...
Happy New Year!
Jo-Goode3 months ago
Myositis UK celebrates 30 years as a registered charity in 2018!
From everyone on the Myositis UK team we would like to wish you Good Health ...
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Wishing you Happy Christmas from Myositis UK!
3 Replies2 Likes
New guide on Myositis by Hector Chinoy & Bob Cooper
New guide on Myositis by Hector Chinoy and Bob Cooper, aimed at physicians & trainees in the field of Rheumatology - £26.99 Oxford Universit...
Anyone here with NAM?
MAuk3 months ago
Interested in medication options. I'm a type 2 diabetic but in control with a small dose of Gliclazide. Had a...
Rsheppard3 months ago
Hi I have dermatomyositis, treated with rituximab 10 weekly but am recently- last few months - suffering severe eye pain anyone experiencing...
Can I get IVIG?
MissFG4 months ago
Due to normal CK levels I’m not on steroids and don’t want to go on them either.
But consultants are saying there’s no obvious signs of muscl...
Eliotf4 months ago
I was dx with dermatomyositis sine myositis due to my Chronic Lymphocytic Leukemia (CLL). It took just over 6 months of biopsies, bl...
8 Replies1 Like
neater eater and the neater arm support
johnRobertson4 months ago
I have an appointment tomorrow with a representative of Neater Eater company, coming to the house to demonstrate two of their products. I...
One week to the Myositis Christmas Meetup!
Jo-Goode4 months ago
Only a week to the Myositis Christmas Meetup 🎄 😬
Free to Myositis UK members (membership free)
Join @ myositis.org.uk/join.asp
VonnieD4 months ago
I've recently been diagnosed with Polymyositis. I'm due to see the rheumatologist for the first time and not sure what to expect. My hope fo...
12 Replies3 Likes
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