Presentation

[Killy_21]

Hi comunity, I'm a 63 years old male from Belgium. I was diagnosed with NAM in september this year.

Actualy I'm under Medrol ( corticoïdes 48g) and Methotrexate. I am unable to get up from the floor, turn around in bed, can get out off the bath, lift my legs more than 5 cm from the floor , etc.

[JeanBlackIsle]

Hello. I was diagnosed with myositis that was triggered by statin in 2015. This was confirmed by muscle biopsy. Over those years I have tried many different treatments, but the only thing that helps me is immunoglobulin infusions. This does not cure or reverse the effects of the myositis but it slows the worsening of muscle weakness to some extent. Currently, I cannot get up if I fall, I cannot get up from low chairs or use normal toilets, I struggle to straighten from bending, I cannot lift dishes from the oven or low cupboards. I use 2 elbow crutches to walk but can't walk very far and most stairs defeat me. Chest muscles are weak and make breathing and coughing weak and inefficient.

[Killy_21 in reply to JeanBlackIsle]

I have the same weakness since septembre 2024. I am on corticoïdes and Methotrxate now and I have PT 3 times/week. I use a walking stick outsider to prevent from falling. I am wondering now about the évolution this desease. What are the chances to recover completly or partially ?

[JeanBlackIsle in reply to Killy_21]

I have read all I can find about myositis, I have access to academic libraries and used to be a nurse educator. There is no cure, this is an autoimmune condition. The best treatments slow its progress. Exercise can keep muscles functioning to some extent and help to maintain balance and movement. Sorry to sound negative.

[Killy_21]

Thanks for the obvious reply

[Nearness]

Hi I have had NAM since 2017 caused by taking Atorvastatin. I am a Brit but I live in France. I have also had many treatments from high Prednisone doses to Methotrexate and IVIG. I am now on CellCept and almost off Prednisone.

The CellCept seems to work very well for me and I do not think that the Prednisone or Methotrexate did anything for my condition. The IVIG also worked very well but was inconvenient as I hade to spend three long days a month in day hospital having the infusions.

I am lucky in that my condition was diagnosed after a couple of falls. I have since recovered most of my strength and am able to go on 5km long walks in the mountains although I do find walking poles help.

I hope you find a treatment to suit you

Best Regards

Nick

[Killy_21 in reply to Nearness]

Thank Nick for your encouraging withness