Frustrated

[Hunter134]

Its me again.Moved in May got a relapse so upped my prednisone from 7 to 10.Stayed on that for 8 weeks.Trying to taper slowly but got to 8 and i ache all over again.Can't get to my reumy so not sure what to do.Iam yo yoing. I know thats not good!!!

[PMRpro Ambassador]

Where didn't you ache?

[Hunter134 in reply to PMRpro]

At 10mgs.

[Hunter134 in reply to Hunter134]

My reumy will be upset iam not lower aft a year and a half.

[PMRpro Ambassador in reply to Hunter134]

His problem - there is no point taking any if it isn't enough. You tell him you had a flare - and moving house in the middle of Covid would be enough to give anyone a flare!!!

[Hunter134 in reply to PMRpro]

You 're right.I had a phone consultation in May but was down to 7mg.Aft moving i couldn't move and ached all over.Waited to see if it was just from doing too much.It didn't improve so upped to 10mgs.Aft a week i felt much better.

[PMRpro Ambassador in reply to Hunter134]

Stress will cause a flare - and I bet you are still sorting out and worried about it? Or something else ...

[Hunter134 in reply to PMRpro]

My daughter has a second toe removed.She was a diabetic but had two transplants but still has diabetic complications.Its taking forever to heal and that is stressful.

[PMRpro Ambassador in reply to Hunter134]

All fits

[MiloCollie in reply to PMRpro]

Haha "his problem" - I love your responses PMRpro. You make me laugh and great advice as usual. Sounds like 10mg is the solution and not to dwell on it too much until the stresses of life settle down.

[SnazzyD]

In what drop size do you go and for how long each time. This is a difficult area of dosing for many as it is also time when the adrenals need to make up a bit of the shortfall of cortisol. 7-8mg is enough to make the adrenals feel they don’t have to work much but too little for some people to feel they’ve got enough for the day. I felt permanently achey until the adrenal glands kicked in and I only had GCA but at times I though it might be PMR. I just plodded through this no man’s land at 0.5mg every 6-8 weeks. Felt so much better by 5mg. I guess for those with PMR the challenge is to decide whether it’s low adrenal aches or PMR flare.

[Hunter134 in reply to SnazzyD]

I did .5mg but only a month before i dropped again.

[SnazzyD in reply to Hunter134]

Was the month because you felt fine and imposed (by you) period of time before the next drop?

[Hunter134 in reply to SnazzyD]

Yes it was me.Felt fine in the 10mgs for 2 months.My reumy wanted me to start lowering last Dec.But my body is saying no way!!!

[SnazzyD in reply to Hunter134]

Sorry, what I was asking was when you dropped each time towards the 7mg, did you drop because you felt fine after a month? Moving house under 10mg sounds horrendous and I’m impressed you managed it.

I have to say that 10mg was when I felt the best in the whole journey from 60mg it felt I and could take on the world again. Doses under this were a shock because although the Pred side effects reduced, I felt like the stuffing had been knocked out of me and my deconditioned muscles were so easily upset, plus I was permanently tired and achey. I can see why people yo-yo. By 3mg I felt so much better. You need to think whether you just feel less good than you expected or whether your pains are the PMR from before.

[Hunter134 in reply to SnazzyD]

I've got to 8.5 mgs now but over a few days i feel like i did when i first got the pmr.Symmetrical pain,swelling in legs,achey arms and pain in hips.

[SnazzyD in reply to Hunter134]

If you are pushing your body through extra life stuff, it may be that this is as far as you can go for now. Whilst I personally don’t like to use an increase in Pred just to be able to over do it, sometimes life just doesn’t give you a break.

[Dontwannabesick in reply to SnazzyD]

Interested to know, SnazzyD, did your aches include bad headaches?

[SnazzyD in reply to Dontwannabesick]

Tendency to being headachey but no bad headaches. Certainly not the morning base of skull headaches I had before GCA diagnosis.

[Hunter134 in reply to SnazzyD]

No headaches.I upped it back to 10mgs and feeling alot better.I don't like upping it but i was sore sore for 2wks on the 8.5mg.