Not feeling quite ‘right ‘ since starting steroids

[Booge_15]

Had PMR 10 years ago now back so started on 15 mgs prednisolone. This time I feel really ‘rough’ when I get up . No stiffness as such just . I don’t remember this before. I gradually feel better during the day so by the afternoon I am raring to go. I am on complete lockdown with my husband who is shielded and I seem busier than ever but achieving nothing! Perhaps it is this different way of life getting to me! I am 75 so 10 yrs older than last time.

[SheffieldJane]

Gosh yes! Far more time to brood as well with moods tending to follow gravity and the blow of getting the darn thing twice.

I have decided to take a day at a time, not to be driven by any kind of demand upon myself for achievement at all. I am loving birds, flowers, trees, peaceful streets, food, sleeping. The world having finally stopped. I was a busy full time working mother of 3, never enough hours in a day, never getting to the bottom of my to do list. I don’t even have one now.

Make sure that your dose is sufficient for your symptoms and dare I say, just let go. You are enough! 🌼

[DorsetLady PMRGCAuk volunteer]

Lots of things may make it more difficult this time around -

As you say 10 years older,

Maybe caring for hubby, and if not caring, then probably worrying,

The whole Covid-19 scenario

As Jane says maybe 15mg is not quite enough,

or maybe you could try splitting it to get better relief in the morning - usual is 2/3rds am:1/3rd bedtime - that gives you a bit in the morning when you first wake up.

Another option is to take dose if you wake for a toilet break early hours, so it’s ready to work when the cytokine storm happens at 4am,

Maybe just a matter of trial and error.

[PMRpro Ambassador]

Everyone I know who has had PMR more than once says the various episodes have been totally different! Both in presentation, duration, even symptoms and response to pred.

Out of interest - when do you take the pred, is that different from last time? And what sort is it?

[Hunter134]

Hello,My i got pmr i was 59.Felt better much quicker and smoother.Nine years later i had a relapse last year.Ruemy put me on 15 mg but it took months to start to feel better.Still struggling with it this time.Age iam sure makes a difference.

[PMRpro Ambassador in reply to Hunter134]

People I know who have had it twice all say the two episodes were totally different. It really sounds as if you weren't started on high enough a dose this time round.

[Hunter134 in reply to PMRpro]

I believe that too.The dr went by my bloodwork.I only had one elevated.esc was normal.My 1st time i was put on 25mg.of prednisone this time 15.

[PMRpro Ambassador in reply to Hunter134]

One lady I know was started at 30mg first time, probably 12+ years ago. By the second time 15mg was the norm - and she had a far harder time.

[Booge_15 in reply to PMRpro]

Thank you , yes i was put on 40mgs last time ESR was 75. ( my physio daughter actually diagnosed me and I had to go to try to explain to the GP. )Then having been involved with the SW PMRgroup for years I realised 40 was rather more than normal . Thus time I told her I wanted 15mg as I think she still wanted to give me 40mgs. I don't have any stiffness or pain really . Last time I more or less managed myself. I am on Prednisolone 15mgs for 3 weeks my choice following the BRS guidelines. 1 week to go and then I was going to go down to 12,5 mgs . I may ask for a blood test as i really would have liked a FBC at the least but I didn't get one. I did have prednisolone for a week to test whether it was PMR and although I felt better no stiffness etc my ESR had gone up from 35 to 47. I didnt get a CRP a 2nd time, that was 6 the first time.

I know pred only really treats the inflammation thus relieving the pain so I assume you still get the 'fatigue' at times. originally when my daughter told her GP friend that she thought I had PMR and had suggested going to my GP again the friend actually said that she wouldn't wish that on anyone as you feel so washed out and awful all the time.

Well I didn't last time!

Thank you for listening,