Total body inclusion myositis

[Angelique67]

My mother has been diagnosed with total body inclusion myositis and her neurologist told us there is no effective treatment so we have been watching her get weaker by the day.

Has anyone heard of any trials or effective treatments?

[Teltrabs]

No known treatment at the moment. I advise stayin as active as possible, hydrotherapy n gym to keep muscles as active as possible. I was diagnosed in 2002. Use what you have, because inactivity will quicken muscle degeneration quicker

[MissFG]

I’ve recently been diagnosed but they won’t tell me which myositis I have! I think I have IBM but seeing a specialist in Manchester. There is no treatment but a paleo or Keto diet do really help as well as exercise although I’m not really exercising as I was doing weights which I think has advanced my symptoms so I’m awaiting Physio to advise me.

If she hasn’t already endure she get hydrotherapy treatment and gets some gentle exercise so she keeps moving x

[Wighton]

Hello, a couple of things.....firstly although neurologist has given diagnosis, doe he have experience of IBM? has muscle biopsy been carried out? This is only way to confirm. If you google INCLUSION BODY MYOSITIS you will be able to acces info on various trials, one is about to start. There is also USA Myositis forum and it’s helpful. Learn as much as you can. Keep your mum moving as much as possible but be super careful of falls - when you do go down there is absolutely no control. Not an easy time, but please let me know how you get on, Wighton

[Jo-Goode Administrator]

Sadly no treatment available at present, but exercise can help myositis.org/storage/docume...

The Arimoclomol full trial is being conducted at UCL Queens Square and in a previous small study partly funded by Myositis UK was shown to have promising results. It would be worth being seen by a specialist in order to have the opportunity in future trials and advise on how to manage her condition. If you let me know where your Mother lives I will point in you the direction of the nearest. cnmd.ac.uk/our_services/cli...

myositis.org.uk/inclusion_b...

Regards, Jo