Expected new diagnosis of Myositis and my concerns

[Sparky076]

I know pretty much most of this is in my Bio and is just a copy paste to introduce myself.

Can be scary when you have been a relatively healthy person all your life and a Doctor tells you you "have" something with a name.

I am a 50yr old male and I have been suffering from muscle spasms for approximately 10 years on and off (usually in my back/torso). GP always prescribed Anti Inflammatory drugs and diazepam for pain. After a few weeks they would usually pass. I have always had issues with fine motor control of my hands in picking small things up and constant minor hand tremors making precise tasks frustrating.

This latest episode again in my back/torso has been different, it started late May / early June and is only just now under control. Anti inflammatory drugs (Baclofen, Robaxin, Naproxen) had 0 effect on the issue, pain meds were doing nothing.

After a night in bed I was in the most excruciating pain and could barely move for about an hour or more, eventually I would be able to slide myself off the bed to my knees to be able to then stand, the pain and limited movement would last until at least mid afternoon.

Eventually my doctor realised how bad I was suffering and prescribed some intense pain meds and finally removed the anti inflammatory drugs and prescribed Prednisolone, Diazepam, Buprenorphine patches and Pregabalin (seems he went full nuclear to try and get me in a better place).

Within a week the change has been dramatic, I am able to get out of bed easier, the pain is now occasional. Doc and his partners discussed my case and are convinced it is Myositis after numerous blood tests etc... and I now have a referral date at the hospital for 25/9/24.

I the meantime I am carrying on with Doctors prescriptions as he is reluctant to make changes until the referral as there a marked change in the pain and symptoms.

I am a geek and a reader/researcher and wow the internet is a bad place lol - So here is my question, if this is all confirmed and the type of Myositis I have no idea what to expect (some people seem to be on drugs for a long time, some people go in to a remission state, some people just seem to suffer all the time) should I/my family be concerned/worried. I like to think I am a positive person but to hear a potential diagnosis like this does kinda scare me a touch.

[SoonToBe]

It is ‘treatable’ unless it’s IBM form. Generally it involves trying multiple different immunosuppressants as not everyone responds in the same way to the available choices. Steroids are often the first step but, due to their side effects, steroid sparing drugs are tried soon after. Steroids are normally very effective as a first step. The internet can be frightening. Diagnosis involves EMG, MRi (with contrast), myositis blood test and a muscle biopsy (sometimes not needed), so it’s not very invasive. Expect to make a few life changes due to this. I have anti-SRP form and have had to change things like not doing any 100 miles cycle events and 20 mile hikes

[Legored11]

I would say you don't need to panic. I had all the symptoms you have experienced and all the tests SoonToBe references. I was diagnosed with Polymiositis when I was 38, I'm now 52, symptoms have been in remission for the last 7yrs. I'm still on 5mg daily Prednisolone and all bone density scans have been fine; and I am still doing 100 miles rides!