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Polymyositis
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Polymyositis
recently been diagnosed. now on 50m steroids. thing is I've taking tablets for 6 weeks and they have made absolutely no difference. I can barely walk 10 mts. would love to here from others who can give me a target where I should be feeling better, if there is a target of course.
recently been diagnosed. now on 50m steroids. thing is I've taking tablets for 6 weeks and they have made absolutely no difference. I can barely walk 10 mts. would love to here from others who can give me a target where I should be feeling better, if there is a target of course.
sickofpm
in
Myositis UK
7 years ago
Wrist joint injection
Hi I'm due to have a joint injection in my wrist in a couple of days, not had one before only ever had into my hips. Wanted to know whether I will be able to drive home from the hospital?? I feel like I'm gonna need one in most joints! My elbow, my si joint, hips! I am so stiff at the moment am so
Hi I'm due to have a joint injection in my wrist in a couple of days, not had one before only ever had into my hips. Wanted to know whether I will be able to drive home from the hospital?? I feel like I'm gonna need one in most joints! My elbow, my si joint, hips! I am so stiff at the moment am so
Sara_A
in
LUPUS UK
7 years ago
Diagnosed
Diagnosed with
polymyositis
with organised pneumonia and referred by local hospital to guys hospital I was put on 3 days IV stetiods follows by started iv cyclophosphamide for 6 months as so severe. Already muscle do not hurt, swelling in hands gone plus skin back to normal.
Diagnosed with
polymyositis
with organised pneumonia and referred by local hospital to guys hospital I was put on 3 days IV stetiods follows by started iv cyclophosphamide for 6 months as so severe. Already muscle do not hurt, swelling in hands gone plus skin back to normal.
Kimevans
in
Myositis UK
7 years ago
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Advice appreciated
I was diagnosed with
polymyositis
just over twenty years ago.I was taking methotrexate and steroids at varying doses for most of that time,as well as trying different medications for osteoarthritis.I also have fibromyalgia.
I was diagnosed with
polymyositis
just over twenty years ago.I was taking methotrexate and steroids at varying doses for most of that time,as well as trying different medications for osteoarthritis.I also have fibromyalgia.
Marlene23
in
Myositis UK
7 years ago
Still no immunosuppressant
I have myositis (still haven't told me exactly what kind but seems to me to be
polymyositis
) with secondary neuromuscular dysfunction (mimics MS). I was diagnosed last Spring. So far I have only been taking prednisone as it is not as severe as most.
I have myositis (still haven't told me exactly what kind but seems to me to be
polymyositis
) with secondary neuromuscular dysfunction (mimics MS). I was diagnosed last Spring. So far I have only been taking prednisone as it is not as severe as most.
Goldyukr
in
Myositis UK
7 years ago
Just been diagnosed with polymyositis
Hi need help been working all my life I am a 44 year old male with diabetìc all my life I have just be diagnosed with
polymyositis
the last month and it is so painful I have it in the legs upper arms neck stomach and throat I live in n.ireland and was thinking about apling for this PIP payment what are
Hi need help been working all my life I am a 44 year old male with diabetìc all my life I have just be diagnosed with
polymyositis
the last month and it is so painful I have it in the legs upper arms neck stomach and throat I live in n.ireland and was thinking about apling for this PIP payment what are
gtn301072
in
Myositis UK
7 years ago
Myositis polymyositis help
Have had moosijis for months now the dr said if could have been working for up to 4 or 5 before I new had to give up work but having real trouble getting any sort of help from benefits of my own gps for help with anything all tried to go back to work to break myself in but newly killed me only been on
Have had moosijis for months now the dr said if could have been working for up to 4 or 5 before I new had to give up work but having real trouble getting any sort of help from benefits of my own gps for help with anything all tried to go back to work to break myself in but newly killed me only been on
gtn301072
in
Myositis UK
7 years ago
ATP
Hi, Just wondered if any of you had taken ATP, Adenosine Triphosphate and whether it helped with fatigue and if there any possible side effects from taking it. Taking b12 made some of my symptoms disappear but I'm still very fatigued. Thanks
Hi, Just wondered if any of you had taken ATP, Adenosine Triphosphate and whether it helped with fatigue and if there any possible side effects from taking it. Taking b12 made some of my symptoms disappear but I'm still very fatigued. Thanks
Sleepybunny
in
Pernicious Anaemia Society
7 years ago
Phew!🙃 Latest round of tests is complete!
So I had the MRI and I haven't got the official report but I don't think there's anything concerning there. Blood tests all came back normal except plasma free metanephrines were high so will call the doc and see what he says. The tilt table test I had today....... And the cardiologist stopped it after
So I had the MRI and I haven't got the official report but I don't think there's anything concerning there. Blood tests all came back normal except plasma free metanephrines were high so will call the doc and see what he says. The tilt table test I had today....... And the cardiologist stopped it after
1985mum
in
LUPUS 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
New here!
Hi I'm a 31 year old type 1 diabetic. I was diagnosed with Myositis last week and have been on 20mg preds for 4 weeks while awaiting blood results. Feeling better but not back to normal yet. I've dropped to 10mg of preds now for 6 weeks and haven't been feeling the same since I did this. My symptoms
Hi I'm a 31 year old type 1 diabetic. I was diagnosed with Myositis last week and have been on 20mg preds for 4 weeks while awaiting blood results. Feeling better but not back to normal yet. I've dropped to 10mg of preds now for 6 weeks and haven't been feeling the same since I did this. My symptoms
Mb1234
in
Myositis UK
7 years ago
IBM research studies
Part funding from Myositis UK Two new publications, supported by the NIHR Manchester Musculoskeletal Biomedical Research Unit, provide new information that could help better diagnosis and treatment of Inclusion Body Myositis (IBM), a rare musculoskeletal condition. https://research.cmft.nhs.uk/news-events
Part funding from Myositis UK Two new publications, supported by the NIHR Manchester Musculoskeletal Biomedical Research Unit, provide new information that could help better diagnosis and treatment of Inclusion Body Myositis (IBM), a rare musculoskeletal condition. https://research.cmft.nhs.uk/news-events
Jo-Goode
Administrator
in
Myositis UK
7 years ago
Myositis !
Morning all my lupie friends . Was wondering if anyone is suffering with myositis? Been having pain & weakness in my legs for ages now & finding walking difficult. I had a hour long MRI scan back about 3 months ago & had results yesterday. Was diagnosed with this now to add to the list of all the other
Morning all my lupie friends . Was wondering if anyone is suffering with myositis? Been having pain & weakness in my legs for ages now & finding walking difficult. I had a hour long MRI scan back about 3 months ago & had results yesterday. Was diagnosed with this now to add to the list of all the other
tremarel
in
LUPUS UK
8 years ago
Polymyositis Help please share with me thankyou
I was diagnosed with
polymyositis
over a year ago now on my 3rd.immu and still muscle wasting and pain my rheumatologist has retired out of the blue and not a couple of rheumatologist who don't know much about me and is getting bing me 5 months before she sees me again she also got a lot of my case
I was diagnosed with
polymyositis
over a year ago now on my 3rd.immu and still muscle wasting and pain my rheumatologist has retired out of the blue and not a couple of rheumatologist who don't know much about me and is getting bing me 5 months before she sees me again she also got a lot of my case
Pineapple01
in
LUPUS UK
8 years ago
Diagnosed with Panca Vasculitis, Rhumatoid, and Osteoarthritis
I'm sorta new at this, I was diagnosed with
polymyositis
in 2014. I couldn't use my hands or stand up straight. It hurt to walk, sit stand, or even to lay for any amount of time. The Rhumatoligist wanted me to take chemotherapy treatments but I couldn't bring myself to do them at that time.
I'm sorta new at this, I was diagnosed with
polymyositis
in 2014. I couldn't use my hands or stand up straight. It hurt to walk, sit stand, or even to lay for any amount of time. The Rhumatoligist wanted me to take chemotherapy treatments but I couldn't bring myself to do them at that time.
deebeau
in
Vasculitis UK
7 years ago
HI everyone
Hello everyone my name is Raj and after many years of struggling with walking and other things, I ended up having a stroke and it was then when I was in hospital 4 weeks later after every blood test scan I was diagnosed with
polymyositis
in January 2017, currently I,m taking 60mg of perdisidone daily
Hello everyone my name is Raj and after many years of struggling with walking and other things, I ended up having a stroke and it was then when I was in hospital 4 weeks later after every blood test scan I was diagnosed with
polymyositis
in January 2017, currently I,m taking 60mg of perdisidone daily
RajSangha
in
Myositis UK
8 years ago
Social Media & website links
uniqueVmgCharityUrl=myositis Arthritis UK - Have an Information section on their website with leaflets to download or order these include one on
Polymyositis
and Dermatomyositis an A-Z of drugs, as well as other conditions like Rheumatoid Arthriris, Lupus, Raynauds etc.
uniqueVmgCharityUrl=myositis Arthritis UK - Have an Information section on their website with leaflets to download or order these include one on
Polymyositis
and Dermatomyositis an A-Z of drugs, as well as other conditions like Rheumatoid Arthriris, Lupus, Raynauds etc.
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
Newbe
Hey and happy New Year All! I cant believe I have only just found this group! I was Diagnosed with Myositis about two years ago along side SLE Lupus and i have to say that the condition is still a mystery to me
Hey and happy New Year All! I cant believe I have only just found this group! I was Diagnosed with Myositis about two years ago along side SLE Lupus and i have to say that the condition is still a mystery to me
wotshernameagain
in
Myositis UK
8 years ago
Abbey Physiotherapy are fundraising for Myositis UK in memory for John
Thanks to Abbey Physiotherapy Clinic in Nuneaton, who are fundraising for Myositis UK in memory of John " Did you see our article in the Nuneaton News last night? This week we are fundraising to raise money for Myositis UK, We are donating £1 for every patient we see this week. Lots of our patients
Thanks to Abbey Physiotherapy Clinic in Nuneaton, who are fundraising for Myositis UK in memory of John " Did you see our article in the Nuneaton News last night? This week we are fundraising to raise money for Myositis UK, We are donating £1 for every patient we see this week. Lots of our patients
Jo-Goode
Administrator
in
Myositis UK
8 years ago
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