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

[Hedgehog1001]

Good aternoon Alfie and sorry for the delay in replying to your query. I was initially diagnosed with polymyositis about 10 years ago and prescribed prednisolone. Other than the usual side effects of weight gain and round face, there was no improvement in my mobility and I was taken of it. I underwent a battery of tests including a biopsy of my leg muscle when it was confirmed I had polar myositis, manifesting as proximal myopthy, and was prescribed azathioprine, which I've been taking ever. I still have limited mobility and stamina so I now have a blue badge!

[Alfie13 in reply to Hedgehog1001]

Thanks for your reply. My friend is awaiting results of his muscle biopsy. As no noticeable difference with high steroids, I was wondering if he might have IBM

[Roleypet]

I have polymyositis, I found improvement after three days on 60mg prednisone.

[Alfie13 in reply to Roleypet]

Thanks. That’s encouraging to hear

[Campergirl76]

I have statin-induced necrositing myopathy. Started on 20mg prednisonal in 11/24, then 30 mg + 50 Azathioprine in 1/25, then 50mg prednisonal and Azathioprine in 2/25 and now increasing Azathioprine to 100 then 150mg.

Then got pneumonia and on to anti biotics for 10 days and off medication for 10 days. Now back again on steroids etc. but have had heavy vomiting. Waiting to see if they will continue or try other auto body medication.

Disappointing but not unexpected.

Ck levels dropped from 7000 in 9/24 to 342 in 325 so it’s working.

Had 5 daily ivigs in 12/24 and due further 5 at end of March.

Hydrotherapy is wonderful.

Cannot see return to strength yet but they say I will walk again.

Not when, though!

[Alfie13 in reply to Campergirl76]

Sorry to hear this. Did a muscle biopsy confirm it is due to statins?

[Campergirl76]

Initially after numerous tests paid privately in London over 4 months including EMG, conductivity, MRIs, PETscan, blood tests, a muscle scan and then an muscle biopsy I was told I had Polymyositis as no identifiable anti bodies, but after further tests I was told they had been identified and I had Necrotising myopathy caused by HMG-CoA reductase antibodies.

Statin-induced necrositing myopathy.

[Alfie13 in reply to Campergirl76]

Thanks Campergirl. I think this may be statin induced but no- one has said this yet! On statins for 3 years before it started. Not sure if NHS will tell me it is stain induced without me pushing for more tests.

[Campergirl76 in reply to Alfie13]

I was on statins for 6-8 years before I got symptoms in 2023-4.

Diagnosed 1/25.

Push to get more tests as depending on the sort of Myositis, medication may vary. Have Muscle scan followed by muscle biopsy in the area where you are most affected by a surgeon experianced in myopathy with samples being passed freshly to experienced pathologist, otherwise could be inconclusive.

Results take weeks and further results take further weeks but could discover anti bodies previously not identified, as in my case.

Also get ck tests.

Patience!

[Alfie13 in reply to Campergirl76]

👍

[Campergirl76]

after coming off Azathioprinol for 10 days as I got pneumonia and going back on and up to 150 mg I got very sick. Now coming off and going on Methotrexate by injection once a week. I will see how I go.

Strength in arms and legs not yet increased after 6 months but I am no longer “ toddling” but walking out better. Still heavy fatigue and need 24/7 care.

Got second lot of 5 ivigs next week.

🤞😊🌸