Recent diagnosis of Dermamyositosis - Myositis UK

Myositis UK

944 members441 posts

Recent diagnosis of Dermamyositosis

Treacle666 profile image

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 weakness, swollen red eyes, gottron papules, mechanic hands… CK 5600.. was admitted to hospital, for 8 days, IV fluids, muscle biopsy, CT and MRI. Consultant says no cancer so far but needs a Ultrasound of breast to rule it out. This makes me 😟 Has had 40 now 30 mg of prednisone, 5 days of IVIG as swallowing was poor, started on mycophenelate building up to full dose. Is feeling better but so afraid of the future and the C word. Anyone else had this association?

4 Replies

Hi Treacle

I’m so sorry to hear that you’re Daughter has been so unwell and so young too! 😔 It must be such a worrying time for you both.

I am a lot older than your Daughter, middle aged but my diagnosis of DM came about 2.5 years ago after becoming ill with a particularly nasty virus, which I’m sure triggered it.

My calcium level started to rise recently has which caused a lot of panic regarding cancer. I can tell you that I’ve had CT, MRI and a Petscan which have all been clear with no signs of anything sinister and they’ve now put the high calcium down to the DM. I also had an extended myositis panel taken as there have been more antibodies identified since I was first tested which I’m glad to say came back negative too for the antibody associated with Cancer - have they tested your Daughter for this?

I’m glad to hear that your Daughter is feeling better with the treatment. I’ve also recently started prednisone and Mycophenelate as I’ve had some progression with my symptoms that prior medication wasn’t sorting. Like your Daughter am feeling much better thanks to the steroids - although it’s a real love/hate relationship!

I’m sorry I can’t give you a definite answer regarding the Cancer question but hopefully someone more knowledgable will be able to advise you too but let us know how your Daughter gets on and fingers crossed that the ultrasound is clear.

Treacle666 profile image
Treacle666 in reply to AutoAnnie

Hello- thank you for sharing your story with me . She has the Tifi antibody of no known origin.. one last test to rule it out- ultrasound of breasts. So worried but also know that she is at s lower risk because of her age. Never once had any issues with health but i believe Covid and stress probably triggered it. She eats well and does not smoke or drink, no family history of BC. I hope you are keeping well xx

I had the same symptoms,I was put on a high dose of prednisone,then mycophenolate,then tapered prednisone down to 7.5 mg and on mycophenolate I still have flare ups every now and then but with good diet and sensible exercise I’m now in control,it will get better☺️☺️

Thats so encouraging xx Thank you for sharing .I hope they taper her down soon-as her feet are swollen. See Rheumatologist on the 10th. Has been doing gentle exercises whilst she waits for a physio appointment .

You may also like...