Flare on Reducing pred

[WillOllier]

Ive had a flare (blood test showed ESR of 15 11 days ago) having reduced pred very slowly to 2.5. Went back up to 4 for 11 days and that did trick so reduced to 3. Stayed on 3 for 9 days then pain and stiffness came back so went back to 4. Been on 4 for 2 days now but symptoms still there. In past an increase has seen symptoms disappear within a day. Should I stick with 4 or increase again? Another blood test is booked for 3 weeks time . Many thanks

[PMRpro Ambassador]

"In the past" - at the same dose or different, higher doses?

You are never reducing relentlessly to zero - you are tapering to find the lowest effective dose that controls your symptoms. When your body rebels repeatedly at a similar dose, it is telling you that you have arrived. You will get lower - just not yet.

When you flare because of overshooting the dose you need, then adding 5mg to that dose for up to a week to 10 days should sort it out and then you can drop straight back to the last dose where you were good - not the dose where you flared. It is possible that the flare is due to increased disease activity but that is less likely so try first on the assumption you overshot.

[DorsetLady PMRGCAuk volunteer]

See from previous post we suggested a small increase in dose, but as that hadn’t worked unfortunately think you need a bigger increase . Suggest you follow advice in this link re flares - obviously adjusting example doses to your own situation.

healthunlocked.com/pmrgcauk...

Fingers crossed it works this time around.

[WillOllier in reply to DorsetLady]

Many thanks and I have re read the advice in the link. I think this is definitely me "you are too active for your medication to control the illness. " Just waiting for advice on sticking with 7 or increasing to 10 but guessing that I may need to just rest and sit this one out until things stabilise again. Lesson learned, no more tennis for me until I feel a whole lot better and then much less than I have been doing!

[DorsetLady PMRGCAuk volunteer in reply to WillOllier]

Fair enough…combination of a couple of things maybe - previous flare not fully under control before too much tennis! Hopefully will settle soon.

[PMRpro Ambassador in reply to WillOllier]

No need to STOP tennis. Just do a lot less to start with. Build up slowly - playing Wimbledon was maybe a bit soon ...

[WillOllier in reply to PMRpro]

Yes absolutely although I’m no Emma Radacanu😂resolved to see if 7 works if not I’ll increase again to 10 for a week 🤞

[PMRpro Ambassador in reply to WillOllier]

At least that means you don't have a nasty blister tonight ...

[WillOllier in reply to PMRpro]

Ha Ha yes! What a shame she is out though. I'm back on 10mg for a week and then I'll see if things have settled down before I try to drop to 5 which is where I think is just above where I was pain free before. We're moving house at the moment sizing down after 35yer in the same house. I think that's affecting me as well maybe as that process started back in April too. The pain in the middle of my back between my shoulder blades got really bad back in April/May and was accompanied by ACID reflux. That episode culminated in me I having an endoscopy and thankfully everything was normal so I believe now that pain back then was PMR (I was at that stage reducing gradually from 5 to 4.5) and that the acid reflux was perhaps stress.

[PMRpro Ambassador in reply to WillOllier]

DON'T worry about reducing too much if you are moving house!!! It is one of the 3 most stressful life-events, and downsizing just makes it worse. I've not lived anywhere for more than 10 years at a time and that was bad enough. We downsized from Scotland to England and then built on to the gable end so expanded a bit again. Charity shops have done very well out of me! The move here to Italy was probably the easiest as here was already furnished as we'd had it several years and it was more a case of chuck what wasn't wanted on voyage!

[WillOllier in reply to PMRpro]

Thanks so much for your support ! Looking back 2021 has been challenging . You might remember it was me getting very concerned about acid reflux with back pain …. Turned out to be PMR fir the pain I think and stress for the acid reflux. Afterwards in June I started on Mirtazapine 15mg and all the anxiety and sleeplessness disappeared . I decided to come off those 2 weeks ago having done 6 months and last night anxiety was back along with mild stomach churning etc. So I’ve put myself back in Mirtazapine and all is well again. I’ll stick on 10 pred and my Mirtazapine for a few weeks now. Will be talking to my Dr re the Mirtazapine. Think he will say stay on until after you move house. Thanks again for your reassurance ! It’s worth so much when things go down hill 😀

[PMRpro Ambassador in reply to WillOllier]

Did you just stop the mirtazipine overnight ? Not a good idea, even missing tablets can result in a return of the symptoms! That needs discussion with the doctor.

I wouldn't change anything until everything has calmed down again - 2021 has been something of a year even without anything else superimposed ...

[WillOllier in reply to PMRpro]

Yes stopped too quickly over a week because I was starting to get side effects restless legs and very mild hallucinations. I have call booked with doctor today and sure she will recommend staying on Mirtazapine or perhaps an alternative.

[PMRpro Ambassador in reply to WillOllier]

There are lots of things you can stop suddenly - but lots where you can't!!!! Look it up - plenty of sites that tell you cans and can'ts

[WillOllier in reply to PMRpro]

Yes just had chat with Doctor and I'm going to resume Mirtazapine over this weekend and then chat with them again about perhaps swapping to another of the same family because I'm getting these side effects.