PMR flare ups

[KTGraham]

I’ve tried unsuccessfully to find this in FAQs so happy to read from a link if someone can share…I am just down to 9mg on my tapering regime. I get a bit of taper-anxiety every 6 weeks when my dose drops. This time I’ve felt some twinges in my legs and shoulders (but have also been gently increasing the amount of exercise I do so it could be from that)

How quickly after a dose drop do you normally start to tell if the symptoms are going to come back?

AND

If they do come back a little will they perhaps gradually settle down again with out increase of dose to previous level

thanks all

(Only 3.5 months in to this diagnosis so stil trying to fathom it all out

Also hoping to get to much lower level of steroid as they tend to make me wake a few times in the night)

[DorsetLady PMRGCAuk volunteer]

It’s under the heading Flare or Withdrawal - but have linked -it should answer your questions, but if still concerned come back for clarification

healthunlocked.com/pmrgcauk...

Would say maybe you are trying to reduce a bit too quickly…under orders no doubt .. so maybe ease up a bit and have look at this-

healthunlocked.com/pmrgcauk...

[KTGraham in reply to DorsetLady]

My reductions are 1mg every 6 weeks. So far been absolutely fine. Started yoga recently so hoping it’s the downward dog and warrior poses that are causing the slight aches rather than the PMR. I’ve saved your links about tapering where I can easily find them - very handy to re-refer to thank you

[DorsetLady PMRGCAuk volunteer in reply to KTGraham]

That sounds okay.. somaybe overindulgence on the exercise front… would hazard a guess warrior poses may be a bit too much [did a lot of yoga pre GCA days]. Plus a reduction of 1mg gets more difficult the lower you get [percentage wise of current dose] and as you get to YOUR minimum dose, so just bear that in mind.

[KTGraham in reply to DorsetLady]

That makes sense about the percentage- i will need to keep a close eye on myself but also try to not look for problems that aren’t there; get nervous about every little niggle now 😩

[DorsetLady PMRGCAuk volunteer in reply to KTGraham]

Yes that understandable - as and as we know not everything is PMR!

[PMRpro Ambassador]

"How quickly after a dose drop do you normally start to tell if the symptoms are going to come back?"

Depends on quite a few factors - the current dose and how big the drop was for a start. And you admit to having recently increased exercise - which clouds the view a bit! It is a better idea to do one thing at a time so you can tell which did what!

There may be a reaction to changing the dose - that usually starts immediately and improves in following days. If the dose is now too low, it is usually at least a few days before you notice it and then it gets worse with time. If the new dose is only fractionally too low, then it may take longer to notice the buildup of inflammation. That is why we say have good gaps between changes in dose and not too large drops.

By our standards, 3,5 months to get to 9mg is pretty speedy but if it works, it is good to get lower quickly. But now it is a question of patience and not more than 1mg at a time - 6 weeks should be enough time to know if a change in dose has left you on enough.

So now - it is a question of waiting and seeing!

[Zebedee44]

It sounds as if you have reached the lowest dose that your body needs at this stage to mange the inflammation. I hope it has been properly explained to you that the treatment of PMR with prednisolone is not a quest to taper to zero as soon as possible but to titrate the dose to keep symptoms under control.

Introducing yoga might be adding a bit of inflammation to parts of your body already inflamed by PMR, but it could just be that you have reached the dose you need and should taper more slowly. I’m afraid poor sleep is par for the course but will improve now you are under 10mg. And yoga practice should help that too.

[KTGraham]

it’s a proper roller coaster ride this whole tapering business! I’m hoping the yoga will improve my strength and fitness (I walk quite a bit too) and help with how I cope with PMR. 🤞🏼 the 9mg works for me and my sleep improves 😬

[DorsetLady PMRGCAuk volunteer in reply to KTGraham]

It doesn’t need to be a rollercoaster-but that depends on having a sensible doctor and a sensible tapering plan!

We can supply the second, but unfortunately have no control over the first..😊

[KTGraham in reply to DorsetLady]

I was meaning more mentally 😬

[DorsetLady PMRGCAuk volunteer in reply to KTGraham]

Okay -fair dos -but if you have your illness well controlled it also helps your mental health 😊

[PMRpro Ambassador in reply to KTGraham]

It shouldn't be a roller-coaster - if you get into a yoyo pattern with the dose as a rollercoaster implies then you will find it increasingly difficult to get flares under control. We don't know why but it occurs to me that there is one theory that the immune system "learns" to misbehave and doesn't like being tamed in any way. So being undiagnosed for a long time or then messed about with doses means the immune system has got used to a way of life or is reminded of it at intervals. Consistency is important in keeping it quiet rather than poking at it at intervals.