Mysostis

[Tim_Thorpe]

Had mri recently showed mysostis on left hip

Waiting for muscle biopsy to confirm

What is mysostis

[lupus-support1 Administrator]

Hello Tim!

I have dermatomyositis as part of my SLE.

Myositis means inflammation of the muscles that you use to move your body. An injury, infection, or autoimmune disease can cause it. Two specific kinds are polymyositis and dermatomyositis. Polymyositis causes muscle weakness, usually in the muscles closest to the trunk of your body.

Don’t be alarmed by these names!

If you want to talk, I’m here!

With good wishes,

Ros

[Tim_Thorpe in reply to lupus-support1]

Just a little worried as mri showed old damage plus new damage caused by mysostis.im already on aziophrine 300mg daily liver can’t tolerate 400mg daily. I know aziophrine is one of the main drugs to use against mysostis so a bit worried mri showed up new mysostis

[lupus-support1 Administrator in reply to Tim_Thorpe]

I can understand why you are worried. There are other drugs that can help. I am on a cocktail!

My advice is to contact your specialist and get an appointment to talk above your results. Don’t trawl the internet because there’s a lot of misinformation. In any case, this is about what is the best treatment for you!

Best wishes,

Ros

[Tim_Thorpe in reply to lupus-support1]

Still waiting for my biopsy operation hospital contacted about a month ago wanted me to come in for a pre op appointment asp as they had me down for the muscle biopsy tone done in 6 days time . I told them I couldn’t have op at such short notice as I have had a stroke caused by aps symdrome and on wafrin so have to have a bridging plan ! They knew I had had a stroke so was surprised they didn’t know I was on wafrin 😐plus thought muscle biopsy would’ve been done under local anaesthetic but lady from hospital that called me said it was to be done under general anaesthetic

[lupus-support1 Administrator in reply to Tim_Thorpe]

You are saying that you have to take charge because you cannot trust the doctors!

Frankly, why do you need a biopsy to confirm a diagnosis you already have.

When Dr Hughes diagnosed me with dermatomyositis, he told me that he could order a biopsy but why do this when he already knows!

In your case, why have a surgical procedure given your history of a stroke?

I am not a medical doctor but it seems you are concerned about your treatment so talk to your specialist as soon as possible!

I am sorry there is this additional anxiety, Tim!

Ros

[Tim_Thorpe in reply to lupus-support1]

I’m under st Thomas and prof hunt for my aps symdrome and now under guys hospital for my lupus under the care of doctor fanando. Think doctor fanando wanted biopsy just to confirm what type of mysostis it is so the best way to treat it . Just been hard trying to for me trying to contact the right person to confirm wether or not muscle biopsy is to be done under general or local anaesthetic. Not kin on having it done Uber general anaesthetic due to my stroke /mini strokes and micro clots on brain have a high inr target of 4 plus when drops below 3 I injection with fragmine

[lupus-support1 Administrator in reply to Tim_Thorpe]

Dermatomyositis involves the skin eg I have brown-purple shading around my eyes! Looks like permanent eye make-up. Polymyositis simply means inflammation of the muscles, usually surrounding the trunk.

Although I have a degenerative spine through chronic inflammation, the myositis affects my ability to walk. My shoulder muscles are also affected! You aren’t alone!

Prof Hunt is one of the best for APS, so you should feel confident but you can question why the biopsy is necessary if that is what you feel. You already have a diagnosis from the MRI.

To help prevent muscle loss, physiotherapy can help. Treatment includes AZA, MTX and steroids.

Please talk to your consultant, Tim. I am sure you will benefit from talking about your options!

With good wishes,

Ros

[Tim_Thorpe in reply to lupus-support1]

Thank you 😊 hopefully find out this week what is going on 👍

[lupus-support1 Administrator in reply to Tim_Thorpe]

Keep in touch!

[Tim_Thorpe in reply to lupus-support1]

Feeling totally confused 😐 had stroke 2011 have aps symdrome strongly

Then about 2 yrs ago diagnosed with lupus sle or lupus like symdrome by prof hunt at st Thomas put on aziophrine then this year in March had a terrible flare and had some investigation done at guys hospital by dr fernando. An MRI showed some mysostis on my left gluteal muscle. Since March 31 have been referred to have muscle biopsy.1st cancelled as dr fernando hadn’t put a bridging plan in place (as I’m on wafrin)2nd one was cancelled as it hadn’t been referred properly and the 3rd one was cancelled 4 hrs after I had a text to ring surgical team to book in appointment for pre op !

Dr fernando called me nxt day and said they had cancelled biopsy due to the fact that now they think there is no new mysostis just old on MRI

CANT see why it’s taken 4 months to come to this decision 😐