Flair and hot weather

[krillemy]

I am so frustrated. I just need to ventilate. Started 15 mg 2 months ago, and it worked like a dream for stiffness, muscle pain, weakness and brain fog. Got a little manic and other side effects that settled. Definitely over did everything in excitement: biking, walking and swimming and garding playing with granchildren.

Then I was struck by some family issues with psychological stress, then a severe flare of diverticulitis. So as advices I gave up tapering. But now very hot summer weather has set in (one should not complain), and I am just in a state. Brain fog in the morning, stiff in hips and front of my thighs. My muscles get tired so quickly. Then finally my hip and knee gave in when working today. SO pain again and I am afraid that the pred. has stopped working?

I have no muscle pain in upper arms or neck, but stiff. I have been really trying to pace myself.

I the heat wave a factor? Do PMR get worse with heat - or do I just need to learn my limits the hard way? There is no way I can go back to work even half time as I am now

[PMRpro Ambassador]

I suspect it hasn't stopped working - but at the present you have gone to slightly too low a dose. Even 1/2mg too low and over time enough inflammation builds up again for you to notice.

You are young, you have been messed about for a long time and even then treated with a dose at the low end of the starting range. It took over 4 years for me to get to 10mg reliably - and there are several like us on the forum, young, delayed diagnosis, difficult to control symptoms. Even Prof Mackie was talking about this scenario recently as causing problems.

[krillemy in reply to PMRpro]

Yes - well put. Should I up the dose then maybe be 2.5 mg for some days? I am not concerned about prednisolon, and I am prepared to take the time it takes. Just I did not expect the symptoms to come sneaking back like this.

[PMRpro Ambassador in reply to krillemy]

Try it - when did you last feel well?

[krillemy in reply to PMRpro]

Maybe 8 days ago

[PMRpro Ambassador in reply to krillemy]

Sorry - I meant what dose. And how have you been reducing the dose?

[krillemy in reply to PMRpro]

I started on 15 mg, and began to reducing to 13.75 mg after 4 weeks as I felt well and even the joint pain left me. Just the swollen hand and feet, but no pain. After 2 weeks I got sick with a nasty virus and went back to 15 mg for 4 days as I had fever. Then back to 13,75 and the flair started quickly after (2 weeks ago). I then realised I had a case of diverticulitis and doctor ( and you ) advised to go up to 17,5 for 4 days. Then back to 15 mg , but I just started slowly to get stiff and all that even when staying on 15 mg, and the past 8 days relaxing as much as I can...

[PMRpro Ambassador in reply to krillemy]

That "nasty virus" - wasn't Covid was it? Even so - any virus could really poke PMR into life and cause this sort of problem. However you look at it - you have increased disease activity and you have symptoms. You need more pred and you need time for it to settle down - more than just 4 days.

[krillemy in reply to PMRpro]

Not covid, but a cold that was more than usual and lasted 10 days! But as it is my mother is now in the hospital again for dehydration and a broken rib from a fall. She tested positive this morning So I hope I didn´t get infected. I´ll up the dose to 17,5 then and until my symptoms gets better. Thank you for your advice

[PMRpro Ambassador in reply to krillemy]

Just be patient - and so sorry to hear about your mother. Ribs hurt at the best of times - and with a Covid cough it may be horrid.

[Broseley in reply to PMRpro]

Do you think the covid vaccination could have this effect too? I'm asking because after being pleased at not having any after effects from my booster last Friday, 4 days later I developed stiffness and muscle pain in both hips. Nowhere near as bad as when first diagnosed, but concerning all the same. I've been on 9mg for 5 weeks due to reduce to 8mg on 8th July.

[PMRpro Ambassador in reply to Broseley]

It has caused flares for some, my second Moderna one did, lasted a few weeks and then slowly improved. Which jab does it seems to vary - both in terms of which number and which brand.

[Broseley in reply to PMRpro]

Do you think I should delay my taper?

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

You’ve got another week to ponder that -see how you feel nearer the 8th -but tbh a week or so extra is nothing in the great scheme of things is it?

[Broseley in reply to DorsetLady]

Thanks.

[PMRpro Ambassador in reply to Broseley]

I agree with DL

[borednow in reply to krillemy]

Too much, too quickly. Please listen to PMRpro, the woman's a genius!! Hoping for a quick improvement for you,

[krillemy in reply to borednow]

Dear borednow. Your name says it all. As soon as I am feeling fine, I get BORED and then I forget the pain and how it was, and then overdoing everything.... Best make a note on the fridge: PACE yourself

[borednow]

Indeed! When I first started with PMR (in 2017), I very quickly became bored with it all. Little did I know it was about to become my new best friend. However, 5 years later here I am! Good news is that I'm now on 1 to 2mgs a day (can now tell with wisdom when I should increase or decrease a bit) and happy to stay here indefinitely. It's not been that bad and is now more than liveable with. Fast approaching 80 so difficult to tell if it's PMR or just basic old age. Thinking of changing my name to stillhere!..

[PMRpro Ambassador in reply to borednow]

As long as you aren't bored with us