Struggling to find a solution

[JazzNZ]

Hey guys, I was diagnosed with Dermatomyositis in September 2023 and hospitalised for a month while they tried to get it under control. I lost the use of my upper body muscles including throat so had to be on a feeding tube (also on mobile feed pump for 3 months at home). I’ve been on Prednisone from the start (120mg) and eventually in the middle of last year I was able to get down to 9mg. I had another flare up so I went back to 40mg and I’m still on 20mg now. I don’t sleep (even on 3 lorazepam a night) so very lethargic all day and I’ve lost a lot of strength in my whole body. I have Hydrotherapy twice a week to build strength up in my legs but it’s a very slow process.

What I’d like to ask is; is there ever going to be light at the end of the tunnel ? Has anyone else also been on steroids for this amount of time ?

Due to prolonged use of the steroids I’m now getting other health issues, I found out today I now have Cataracts because of them !!

Any advice would be helpful as I think my Rheumatologist is at a loss with what to do.

[Campergirl76]

oh dear! You have had a bad time.

I have only recently been diagnosed with statin-induced necrotizing Myositis and am waiting for steroids and Azathioprine to take effect.

Took 4 months to get diagnosis during which time my strength has degenerated, but they say my ck levels are dropping.

I now have to have 24/7 care but at least I have no pain and fatigue is like a warm blanket.

I realise how fortunate I am to have a lovely family, friends and carers as well as my little Spanish rescue dog.🐶

[JazzNZ in reply to Campergirl76]

Hi Campergirl,

Yes I certainly wouldn’t wish any of these health issues on anyone. Going from a fit guy who went to the gym 5 days a week, played golf 3 times a week and loved gardening to someone who can barely walk more than 200mtrs before walking like I’m drunk and eventually falling over is nothing short of sole destroying. I think when I couldn’t hold my head up or swallow my time was up, to be honest with the issues that I have o wish it was.

What makes it worse is that my rock and best friend Jazz (Jasmine) my German Shepherd who has been with me every day through this illness had to be put to sleep 3 months ago, it nearly finished me off.

So what is Azathioprine ? Is that going to be the substitute to get you off the steroids ? My Rheumatologist is really struggling to get me off steroids as they’re causing me even more complications that I really don’t need.

It’s so good you’re not suffering from fatigue or any pain also that you have 24/7 care.

I hope you keep improving,

Kind Regards

Andy

[Catpuss66]

have you asked the question on myositis uk on Facebook much more active forum. Make sure you answer the joining questions.

[Foxy619]

Jazz so sorry to hear about your health I was on 15mg of Prednisone for 3 years 9 months up untill my Dr thought I had Polymyalga symptoms similar up untill March 24 when my Nurologist who I requested to see found I had Myositis and my rashes meant Dermatomyositis antibody RO52 I think it might be a good idea to speak to your doctor and maybe discuss if a Nurologist would be worth seeing just to get another opinion my thoughts are with you take careRegards

C