is this what a flare feels like ?

[Cfmad298601]

Started on 40mg back in beg oct 2022 after typical PMR /GCA symptoms. Been tapering since then pending my follow up rheumatology appt in a week, currently alternating 17.5 - 15mg.

Today I’ve felt particularly tired and weak, even just holding the hairdryer for a few moment’s caused my arm to really ache, and later this afternoon my neck was becoming really stiff and uncomfortable.

i gave in and took an extra 2.5mg and within an hour there was much improvement.

Was this a temporary flare, I’m still a newbie and trying to get to grips with all of this?

[DorsetLady PMRGCAuk volunteer]

You may find the alternating days of 17.5 & 15mg is the issue….. the 17.5mg might be enough but the 15mg not… have to say I’m not a great fan of that type of tapering…although some Rheumies seem to be.

Also, to be at that dose within 4 months from 40mg is very quick… so you probably have reached as low as you can for the time being. You are not reducing relentlessly to zero you are trying to find the lowest dose that controls your inflammation…sounds as if you have found that.

I did send you an information post previously explaining how to cope with your illness, maybe you should have a read through it…. Reattached here -

healthunlocked.com/pmrgcauk...

[Cfmad298601 in reply to DorsetLady]

thanks very much for your help and all the info……the rheumatology dept actually wanted me to be reduced to 12.5mg by my follow up appt next week! 3 months after diag. I have read as much as I can digest from the great info, from all you lovely people giving your time, and tried my own tapering as much as I could so far - apart from the fact that they only dispensed enough pred to see me through exactly as they wanted, tapering every 2 weeks. I was not prescribed any additional vits/supplements either, as you suggested, but left to understand the what’s and why’s and then source on my own. Why is this all so complicated, is there no standard by which people are advised or prescribed?

[DorsetLady PMRGCAuk volunteer in reply to Cfmad298601]

yes there are guidelines which are internationally agreed but seemingly many doctors seem to pick and choose what they take from them. —-and many also seem to have an aversion to Pred - which seldom helps their patients.

plus as HeronNS says request 1mg tablets.

[PMRpro Ambassador]

Not a temporary flare - probably the 15mg dose is just too low for you yet. Alternating doses is hard on the body and you just aren't ready to go lower than 17.5mg yet. It will come, just not yet.

[HeronNS]

If 17.5 was working well, and the alternating isn't then you need to ask for 1 mg tablets and once you're back on track to taper again, go to 16 instead. This is not a race. And as PMRpro said years ago, and I endlessly repeat, "It isn't slow if it works". Good luck! 🍀

[Cfmad298601]

thanks so much everyone, things had been going fairly well and reading others stories I think I’ve been pretty lucky so far. Perhaps I’ve got a bit complacent and assumed all was going fine and dandy…..I’ve not really suffered serious sickness in any great instances in my life so feel a bit daunted by being “unwell”….I don’t really know how to be sick!!! Especially when I still need to work and pay a mortgage.

just feeling like a naughty school kid who’s got a meeting with the principle to explain why I’m not at the 12.5 level instead of the 17.5 I’ve managed so far!!!

[HeronNS in reply to Cfmad298601]

My doctor was actually very good, but I myself remember saying how disappointed I was that I hadn't been able to taper further, that I felt I was failing. She pointed out that there was no question of failure. Although I may have felt like I was failing, it really is nothing like a schoolchild not doing its homework. PMR is what it is: an idiosyncratic disease over which we have no real control. We have pred which relieves our symptoms but cannot cure. There is no cure. The best we can hope for is remission. Most of us will go into remission, but the timeline for when that will happen varies from patient to patient. All we can do is try to live healthily, eat well, get exercise, avoid stress as much as we can, get enough sleep, and learn patience!

[Galore]

Hi I was also diagnosed early Oct 2022. Started on 40 mg Pred now down to 15 mg. Change next week to 12.5 mg for 2 wks and then hope to 10 mg for 4 weeks. All OK (touch wood,) at the moment. I can't advise you really but think if I start getting pains again etc would just raise the by 2.5 for few weeks. Think you need to talk to rheumatology nurses or consultant. Good luck