Withdrawal or Flare

[5goFlotilla]

Good afternoon I am just 1 year into my PMR journey and have reduced from 15mg Prednisolone to 5mg. I have been 9 days now on 5mg and reduced from 5.5mg and feeling awful with only slight discomfort in my shoulders .

It hasn’t really improved over 9 days if anything getting worse , feeling fatigued , head ache and generally rubbish .Went to the GP yesterday who agreed to take both my Cortisol bloods and ESR and CRP this morning ,the rational being to see if it’s a flare or struggling Adrenals .

I did have a Synacthen test which came back in normal range , I know this just means the Adrenals are capable of working not that they are .

Just be grateful for anyones thoughts please, we all know how horrible it is to have to increase the Prednisolone but as it’s often said this is a marathon and not a sprint .

Thanks for your time 🙂

[DorsetLady PMRGCAuk volunteer]

Sounds like struggling adrenals -particularly fatigue and feeling rubbish.

Couple of links to look at one on adrenals, one on dealing with a flare

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

If it’s adrenals - only time, very slow taper, tiny reductions, resting when necessary -and patience will get you through.

If it’s a flare, then follow the advice in the second link…

Of course it could be a combination of the two! 😊

[5goFlotilla in reply to DorsetLady]

Thank you DL so would you just stick on the 5mg unless ESR and CRP come back raised ?

[DorsetLady PMRGCAuk volunteer in reply to 5goFlotilla]

If it seems to be adrenals then yes - and hold there as long as you can (and doctor agrees ) to give them a chance to “catch up”

[PMRpro Ambassador]

My personal opinion? Basic rule: if it is getting worse, it is most likely to be a flare. Getting from 15 to 5 in a year is way ahead of the curve, the mean time is 18 months.

I think it is probably both, your adrenals are not up to scratch yet and a flare will add to it all. Even at 5,5mg it will poke at the adrenal function. If you were significantly better at 5,5 I'd go back, wait a month and try again. At this stage a few weeks marking time and feeling reasonable is far preferable to trying to force it into submission. Because if it is a flare - PMR will always win.

[5goFlotilla]

thank you

[Pusph]

This is EXACTLY me, same amounts mg and same time frame! I ended up upping back to 6mg then 7mg and then 10mg where I stayed for 7 weeks. Just trying to reduce to 9mg now since Tuesday. Really not sure if mine was a flare or struggling adrenals and I maybe should have waited to see for a bit longer but I went back up although I hated having to as I thought I was doing OK. No one likes going backwards but it seems to be par for the course with this accursed illness! Wishing you Good Luck.x

[5goFlotilla]

Thank you my ESR, CRP and Cortisol came back in normal range so going to stick with 5 mg for now . GP wouldn’t really commit to how much the Prednisolone 5mg I had taken 24 hours prior to my 9am Cortisol would impact on the results 🙂