How long for steroids to work?

[Alfie13]

hi. Writing on behalf of friend recently diagnosed with Polymyositis. He’s started on 60mg prednisolone- can anyone give info as to when they felt a difference to taking prednisolone please. Was it says, weeks or had no effect? Thanks

[Nearness]

Hi

I was started on 80 mg of Prednisone for Polymyositis (NIMN, necrotising immune mediated Myophathy). My dosage dropped gradually over 7 years until I was finally off them last month.

The Prednisone did not seem to work for me and I was put on Methotrexate which again did not seem to do anything for me. After three months on these I was put on IVIG ( this is in France and I understand that the UK do not use IVIG so much). The IVIG worked very well but was inconvenient, I was having to spend 3 days a month in day hospital on the IVIG drip.

I was finally put on CellCept tablets which again worked well for me. I have then started reducing the Prednisone and as stated I have finally finished with it.

One thing to take into account is if you are type 2 diabetic or pre diabetic then Prednisone will seriously reduce your insulin production. I was type 2 diabetic controlled by pills ( Metformin and Forxiga) within weeks of starting Prednisone I was on insulin.

Good Luck with your treatment

Nick

[Alfie13 in reply to Nearness]

Thank you so much for replying. I’m asking for a friend. He’s prediabetic. He’s also to start on methotrexate in 2 wks along with 60mg prednisone that he is taking. . He’s still awaiting results of muscle biopsy but until now he’s diagnosed with Polymyositis. He doesn’t after 3 weeks feel any improvement- in fact his muscle strength is declining. So was wondering if he should have begun to feel some improvement or if prednisone takes a while to work.

[WisteriaLover]

I was diagnosed with necrotising myositis in May 2024, I was put on 60mg/day for the first month and then coming down by 10mg every month. I was also given an IVIG infusion a couple of weeks after starting steroids. The main impact of steroids was to help bring down my CK levels, which was 12k when diagnosed, to 4.5k after a month in hospital. Steroids also helped to stop losing more mobility, I was never bed bound but I lost a lot of mobility. Treatment for this disease takes a long time, I was started on Mycophenolate after a month on steroids, had another round of IVIG in the summer, and had a first round of rituximab in November. Some of the meds take 2 to 4 months to start to work. So it is a process of trial and error, and patience. My myositis is still active, so I am still searching for a treatment that works for me. My CK is now 700ish, I have improved mobility a bit, but still struggle with stairs or walking more than 10mins. I am still on 17.5mg a day. Anyway, hope your friend finds a treatment that works for him.

[Alfie13 in reply to WisteriaLover]

Thank you