Dilemma re dosage

[Jantayl]

I have had a lower back pain for 2 weeks - considered it was due to lifting a heavy weight! Now I am experiencing pain and stiffness in my upper thighs which I have not had before. I generally feel a lack of energy and often have to rest whereas before I was able to walk / exercise daily.

I stayed around 4.5mg pred throughout 2022 - up and down due to UTI’s. I have been on 3.5mg pred for 4 weeks - slow taper from 4mg started 9 February 2023 (10 weeks ago). Should I increase prednisilone for a few days then return to, say, 4mg/ 4.5mg or do I persevere at 3.5mg? I am due to go on holiday at end May.

Would value your advice/guidance.

[DorsetLady PMRGCAuk volunteer]

Have you tried ordinary painkillers if you think thigh issue is from bad back?

Could be a combination of things -

your overused back causing referred pain,

3,5mg being just too low (even though you fud have thigh issues previously), and

fatigue could be adrenals stuttering.

Try painkillers first -if you haven’t already. If they don’t work then go a higher, but not too much of too long to affect the adrenals trying to get working again.

Couple of links for info-adrenals and treating a flare -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Jantayl in reply to DorsetLady]

I have not tried painkillers - try to avoid these if at all possible. I did wonder about the ‘adrenals’ aspect as this is a frequent topic here. I do also have painful knee ( ligament I think as I have had this before many years ago when I was running) and wondered if there was any connection. My main worry just now is the thigh stiffness but not sure if increasing the pred would help. This is my first try to get below 4mg and it seemed to be ’so far so good’. I did have a synthacen test Oct 2021 and result was all normal.

I shall study the links.

Thanks

[DorsetLady PMRGCAuk volunteer in reply to Jantayl]

Need to find out what is causing thigh stiffness -so probably best to try and rule out other things before assuming it’s PMR,

But if it is PMR even a return to previous level may sort it -at low doses it’s sometime difficult to pinpoint what pain is what! ..and as we know 0.5mg can make a big difference

[Jantayl in reply to DorsetLady]

yes I think I shall try going back to 4mg where I was comfortable - especially with a holiday planned to France which is really stressing me - although it is a repeat of last year. My husband is so ‘laid-back’ about it all!

Your replies have been really helpful.

[DorsetLady PMRGCAuk volunteer in reply to Jantayl]

Lots of husbands are -but invariably they aren’t doing all the packing nor the “little” jobs that need to be done before you go away😳

[Jantayl in reply to DorsetLady]

You are so right - not even his own clothes! His job is washing the motorhome - although I am not holding my breath! And collecting all the ‘tech’ stuff. I have all the pills and medication for both of us - it’s good we have a motorhome - I say it’s like a pharmacy. Take care yourself.

[DorsetLady PMRGCAuk volunteer in reply to Jantayl]

Enjoy ..

[PMRpro Ambassador]

You aren't reducing relentlessly to zero - you are looking for the lowest effective dose and to me it sounds as if you have got there, Definitely at least 4mg. Yes, you need to rule out the possibility of "just" misuse but you are describing how my flares often start. And especially with your holiday coming up you don't want to let a flare set in.

I prefered the camper - there was less for me to pack! It had all its own gear, just needed clothes taken out of the wardrobe/drawers and stuck in the wardrobe/drawers ...

[Jantayl in reply to PMRpro]

Those were my thoughts from what I have learned from others experiences over the past 5 years. Do you think I should maybe try 8mg for a few days then go back to 4mg? Recent blood test showed CRP 3.3 - slightly up from 1.2 in January but I had just got over a ‘cold’ from the previous week. Not sure if this is relevant.

And as for the camper - unfortunately it had been completely emptied for service and repair - and we do take far too much!

[PMRpro Ambassador in reply to Jantayl]

Yes - know that feeling too!! Maybe an opportunity to rationalise! Though when OH chucked a tiny electric oven that he said we never used, we ended up having to buy another when we were somewhere for 8 weeks while he had medical treatment!

The CRP could be due to the cold. It is worth trying the short burst - see how you get on.

[Jantayl in reply to PMRpro]

thanks - it has been good to talk to those who understand my concerns. I do value your guidance.