Myositis UK | HealthUnlocked

Hi, I have been suffering from statin induced necrotising myopathy for over 3 years. During this time I have tried to join the Myositis UK charity by sending...

Was recently diagnosed with sIBM. How many years before my arms and legs lose functionality? I understand there's no treatment.

how do I go about getting a teddy and a book for my daughter who has recently been diagnosed with JDM ? Any information to explain it in a child friendly way...

So having had Polymysoitis since 1995, and been advised not to take any vaccines, I have so far avoided that Covid vaccine. But I appreciate the risks that...

Hi there, I have been suffering for over 2 years with extreme fatigue which was put down to mild sleep apnoea (sleep clinic attended) but does not really...

Hi I have NIMN caused by taking statins, that is more or less under control with CellCept but the Prednilisone (Cortisone) that I am now down to 10mg messed...

Hi! I haven’t been diagnosed as really long waiting list to see someone. But have similar symptoms to Polymyositis. I have pain and muscle weakness in my legs...

My left hand suddenly got weak, especially the two smaller fingers. Is this myositis?

Can any one give me some advice I have been diagnosed with inclusion bodily myositis any please thankyou

I've been diagnosed with Myositis very recently in the last month, affecting my hanstring muscles in both my thighs. My myositis was caused by a reaction to...

I developed rashes on 2 fingers about a month ago - no apparent cause. GP can't explain them! If this is Myosotis will the rashes be permanent - or will...

I am being treated for Necrotising Autoimmune Myositis with Methotrexate and have recently been diagnosed with malignant melanoma. There is some suggestion...

Has anyone else started to smell since their diagnosis. I smell bad even though I am a clean person and shower. I imagine it's the muscle rotting/dying?

Hi all, I have had extensive blood work done, had MRIs and ECGs. The only thing apparently showing up is low vitamin D levels. My symptoms are loss of...

Hello! I was recently diagnosed with myositis. I don’t know what kind yet, but I’m thinking it’s derma. Regardless, before this diagnosis, I was a very active...

Hello community, Has anyone tried methotrexate for myositis or a similar immunosuppressant? How did it work out for you please? Thanks

Hello, Can anyone provide me with recommendations of a specialist in the north of England for Dermatomyisitis?

The next AGM and conference will take place on Sunday 16th October 2022 at the Oxford Belfry Hotel, Oxford The annual Myositis UK AGM and conference is held...

has anyone had problems with Statins? I always believed they I shouldn’t take them as have polymyositis so am trying Praulent just wondering if anyone has...

AntiSynthetase Syndrome Support GroupWorldwide ASS support group on facebook - please note a personal message is sent that you have to reply to, as well as...

Getting up from the commode is now becoming difficult. Has anyone got any tips on aids to help or any practical tips to help? Thanks InspireMe

NEED YOUR HELP!!! University of Cambridge research survey: Melanie Sloan from the University of Cambridge has been in touch, so far 20 people with Myositis...

I've been told that skin rash/ulcers are the most difficult to treat . Has anyone had these issues and if so, how much time are we talking before improvement?...

Have decided I need a break, the last 3 yrs have not been kind to me, I am looking for a short break in this county (England). It would need to accommodate my...

Hi I’m Exclimber. Diagnosed with inclusive body myosotis 9 lonely years ago. I take no medicine and the GP surgery doesn’t understand my condition. I have...

Hi All, I have dermatomyositis diagnosed in November and started on meds in December. High doses of prednisolone at first but have now reduced to 10mg. I’m...

Hello, does anyone know whether ocular myosotis can spread to other parts of your body such as your toes?

Hi all, Currently on Prednisolone which has resulted in severe acne on back and shoulders. Anybody experienced the same thing and any recommendations to help...

Has anyone got any tips on aids to help get up off the bed. I am not able to use bed raisers on my bed and as it is low I am struggling to get up from the bed...

Daughter 22 had Covid then her immune system attacked her.. she was hospitalised after 4 weeks of symptoms that kept getting worse rapidly. Muscle swelling and...