Finally prescribed pred

[Aamar]

Started pred on Weds, pain in hips and legs gone by Thurs - couldn't believe it and was so angry I have had to live like this for so long when 15mg of pred had such a positive impact. Feel a bit stiff in the evenings- possibly general fatigue from moving faster than I have done for months. Still have pain in neck and shoulders but not as severe. Had the worst headache of my life last night but it eventually went with paracetamol and water- think I'm not drinking enough. Been told to reduce by 2.5 after 3 weeks. Is this usual?

[Soraya_PMR]

Welcome to the pred club!

Wonderful reaction isn’t it?

Just keep going with 15mg for the time being. You’ve got more inflammation to clear out, which will be achieved when the neck/shoulder pain has gone and you feel ‘normal’ again.

And a tip from me. Don’t go bonkers now that the pain is dissipating. You need to rest. I mean only an idiot would go out and tie bean poles just because she could raise her arms again, right? Yup, me! You pay for it after a day or two.

Recommendation is to drop by no more than 10%, which at 15mg is 1.5mg. 2.5 is likely a bit ambitious. It was too much for me and caused a flare.

Rest, feet up, and read old posts is my advice

[Aamar in reply to Soraya_PMR]

Thanks for replying.

Don't worry - no chance of over-doing it - I feel really weak, tired and lacking in energy - could be me getting used to the pred?

Can't wait to feel normal - will I even recognise what normal is after all this time!!

Will phone doc 're reduction - if my neck and shoulders don't improve I suspect I'll be increasing tho

[Soraya_PMR in reply to Aamar]

Give them time. At least a full week. If you go higher, you only have to come down further!

[DorsetLady PMRGCAuk volunteer]

Hi,

2.5mg is a “recognised” reduction, but as Soraya says, not all can manage it. Personally I would like to see you on 15mg for more than 3 weeks, 6 weeks is better. Then you are sure all the accumulated inflammation pre Pred is mopped up - before you start to control the daily dump!

You do need plenty of liquid - and don’t try and become too active - your PMR is still there, the Pred is only working on the daily shed of inflammation, not the underlying illness itself - so over-exertion will tire you and rouse up your symptoms if you’re not careful.

Maybe have a read of this - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Great feeling isn't it? Be grateful - I'd had 5 YEARS of PMR before I had the 15mg pred miracle!!

The others have said it - calm down, the pred hasn't cured anything, it is managing the inflammation while the actual underlying disease process chugs along in the background, making you possibly feel a bit flu-like and also leaving your muscles intolerant of acute exercise. Overdo it and you will feel the pred isn't working any more - and your normal now is a new normal, at best possibly 50% of pre-PMR and you will have to build back up slowly to your new longer term normal. If you were fit to start with when PMR struck and it was diagnosed and treated quickly you may be able to manage more than someone who was ill and unable to exercise as normal for a long time. No-one is excused the SLOW return to "normal" - even competitive level athletes have some struggles. But you will get there - if you go about it the right way.

[Oumaof2]

Pleased you have finally been issued Pred...

Let the anger go.... It stresses the system which PMR likes....

Heed the advice you've had here and you will ... And know you're not alone on this new life path....

Best wishes, Lena 🌻

[Suffererc]

Same here. Had to wait 3 months .