Diagnosed

[Kimevans]

After running marathons coming down ill.in January took 6 months to finally be diagnosed after being told asthma even with so many symptoms. Diagnosed with polymyositis with organised pneumonia and referred by local hospital to guys hospital I was put on 3 days IV stetiods follows by started iv cyclophosphamide for 6 months as so severe.

Already muscle do not hurt, swelling in hands gone plus skin back to normal.

I will be desperate to run again. Has anyone been in this situation and got back to normal.

At moment struggle walking upstairs without puffing and panting. My FVC was 43% Which I know is not good but have another test on 7th august.

[Jo-Goode Administrator]

Sorry to hear of your diagnosis. I do know of some who have got back to running and total remission. You generally find the people who are doing well with a Myositis diagnosis are not on social media. I've had 13 years medication free remission in my 23 years with Myositis, but because of a number of overlap conditions and damage through not being diagnosed until I got to very poorly condition, I struggled to regain to the position I was before; however at my best I could cycle 25 miles. I relapsed 5 years ago and have had a number of setbacks along the way, but currently stable with treatment.

[Kimevans in reply to Jo-Goode]

Thank you no. Went to guys yesterday to be told it is jo-1. That I will have some permenant lung damage and long term drug thetapy.

I was told to walk 30 mins a day and build up from there. If I can get back to 75% of the fitness level I will be happy. So may have to start building up. Was told once third round of cycophosphate iv is in system then look at rehabilitation.

I am.truing to keep positive.

[Legored11 in reply to Kimevans]

I'm 45 now. Been diagnosed with Polymiositis 8 years ago with other overlap conditions. Had two years if hell with high dose prednisolone and methatrexate etc but back to 95% fitness now. Cycling daily, 60+ miles regularly. Some ILD apparently but can't really tell. I have annual Rituximab which does the trick for me. Do have periods of tiredness, weakness etc but generally symptom free.

Good look. Don't be weighed down by all the horror stories you read.

[sickofpm in reply to Legored11]

hi, I have been diagnosed recently with polymysitis.. I can barely walk.i now use a mobility scooter at all times. next is to order a stair lift. would like to think I can achieve some level of walking under the 2 years you mention. any tips?

[Legored11 in reply to sickofpm]

I can empathise with your situation. What worked for me was to listen to my body. I would sleep as much as I could then really push myself when I had a bit of energy. I don't believe I would be where I am now without Rituximab though. That was the start of my recovery. Before that nothing was helping, i was just about getting by with a lot of help from my wife.