Still fighting the dragon

[Islandgirl50]

Hi everyone , i have not posted for quite some time but I do check in regularly . My update; got down to 2-5 mg prednisalone , very very slowly , rhummy very pleased with me , i thought wow , i nearly have this thing beat ,,,,,,foolish thought , got some ghastly nasty gastro bug and BOOM ! inflammation everywhere , i went back up to 5mg on doctors s advice then slowly crept back to 2-5 , but a lot of shoulder pain , early mornings then later in afternoons , so back up to 3 mg That seems to be keeping me on an even keel . Tho still have early morning shoulder pain and of course i have many nanna naps when I can , this wretched dragon sure has a big barb in its rotten tail , I really thought this stage would be easy peasy ! Hopefully once our cold winter here in victoria is over I shall start biting that b dragon !

[DorsetLady PMRGCAuk volunteer]

Hi, sorry to hear about your blip.

I always maintain the hardest reductions are at the lower end of the scale. I found early reductions when on high doses for GCA easy -plenty of excess Pred around, but as you get lower the tapers get bigger in percentage terms plus also you don’t have any “spare” Pred - so every drop is on a much finer line. Anything, like your gastro bug throws you off kilter.

Hopefully you are now back on track - but as you say “you don’t have this thing beat” - so treat it with respect - and tread lightly and slowly!

Good luck!

[SheffieldJane]

Nice to hear from you again Islandgirl50. It really can be like snakes and ladders can’t it ? I hope your even keel continues and it’s smooth sailing from now on.

[PMRpro Ambassador]

A lot of people think the end is easy - in fact, it is probably the hardest bit! Unless you are very lucky and the underlying cause of the PMR has already burned out, you are getting closer and closer to the Holy Grail of the lowest dose that manages the symptoms. The amount you are reducing each time is a larger proportion of the current dose - 10% of under 5mg is hard to create - and your adrenal glands aren't entirely happy either so if you do have an infection or trauma of any sort they can't respond with the normal boost of cortisol to help fight it off. Each one can chuck a spanner in the works - and there are 3 of them!!

[Purplecrow]

I do hear your story! I've been dancing with my PMR dragon for 6 years! At times I thought we had nearly ended our relationship, having lowered my pred to a comfortable 2.5 mg. Each time I started to feel optimistic that we were ending...I encountered some traumatic event, be it health or emotional...usually both, and my Dragon roared back to full presence.

In May, this year, I got a flu- like bug and developed a severe asthma response.(new for me). Only now (6 weeks past), have I started feeling well again.

I guess I'll keep my dancing dress hanging on the peg, and not presume my PMR dragon has departed for a while longer.

Kind regards, Jerri

PMR diagnosed 2013

[Constance13 in reply to Purplecrow]

Dancing.💃 Last time I did that I was about 35. Do you think I should start up again? (I'm knocking 80).😂😂

[Purplecrow in reply to Constance13]

😁

[piglette]

Just when you think it has stopped raining!

[PMRpro Ambassador in reply to piglette]

Ah - but the secret is learning to dance in the rain ...

[Islandgirl50 in reply to PMRpro]

Ok , will keep ip a dance , just a slow waltz for a while I guess 😀😀🌹

[dancersize]

This Victorian cold snap has brought on some aches I thought had gone but probably arthritis rather than PMR. I'm down to 3 and hoping to get to 2.5 in the next month. I haven't stopped dancing but find if I sit one out I'm stiff getting going again. Still much better than two years ago. Hope you continue to improve.