Back to 13mg

[IdasMum]

I seem unable to get this under control. I had struggled towards the end of 12mg a few weeks back and Dr agreed I could stay on 12mg until next blood test. Blood test 5 weeks ago showed raised ESR & CRP and last weeks showed slight (very slight) reduction. I have not felt well, have felt like I am performing at around 65% of my norm on steroids which has felt like 90% of my old self norm.

Returned on Friday to Dr to ask to raise my dose as I was just getting by each day, sleeping x 2 per day and not managing much of my activities of daily living. Each task was wearing me out and my spoons were in short supply. I couldn't imagine having much energy to enjoy my visit to meet my granddaughter in 10 days time.

He agreed to increase me (it seemed reluctantly) to 13 mg and wants me to go back to the rheumy as he says this isn't how it should be. (I'd already increased me to 13mg for the last day or 2 anyway, in the hope of feeling a little better and now the blood test was out the way. So, yesterday I felt so good! Moving better, more energy, got some light cooker cleaning and sink cleaning done (all things I could only look sadly at as I dished up another meal). Baked a cake.

Today I feel good but probably a little knackered from yesterday and i know that will pass and I have nothing pressing to be doing. I just wish I could see myself getting down to 9 mg which seems to be the magic number that I hear so often.

What do you think? Abnormal or just difficult?

PS. I have found a secret stash of 5mg Pred How would it be if I took 15mg every other day whilst I am away? Can I get away with it do you think or will it make things harder when I come back.

[DorsetLady PMRGCAuk volunteer]

Hi AdasMum

Perhaps you have got to YOUR level for the time being. Doctors very often don't seem to take on board that fact, they just assume 'set you on a plan and that's hunky dory' Well very often it's not, we're all different, and life has a habit of getting in the way!

See how you go on 13mg, and by all means take extra with you, but don't take them willy nilly, only if you really need them - a maybe just on a day when things are bad - not regularly. Maybe 1 or 2 extra may work, 5mg is quite a big jump if you just feel a bit iffy.

[PMRpro Ambassador]

"this isn't how it should be" - unfortunately there isn't a way it should be. All sounds perfectly normal to me - PMR doesn't read his books either.

However - can't say I have a lot of sympathy if, as soon as you feel marginally better, you go and clean ovens and sinks! That sort of thing has me in bed if I'm not careful! I scrubbed gently and washed a small patch of floor in front of the kitchen the other day - knew about it for 4 days.

[IdasMum in reply to PMRpro]

Poo...it was a little bit of cleaning that made me feel better knowing it had been cleaned to my standards lol

[bunnymom]

I seem also to be stuck at 12.5 so know how you feel. Getting to 10 seems light years away.

[1Purplecrow]

Hi, I just read your post, and went back to see the photo of your beautiful grandDaughter. What a joyous little Being, 💕, your heart must be full!

***It seems to me that you are smack in the middle of the battle with the dragon called PMR. This uninvited beast has plopped itself down in your life, and demands you pay attention, regardless of what you would prefer to be doing! That all being said, my advice to you is to give the beast his due, and take the prednisone at the level You sense will work for You. Our docs only know the dragon from reading the literature, and we know the bugger firsthand, because it's sitting in our favorite comfy chair in the living room! Prednisone is your sword and armor while you live with the Dragon. I found that each reduction had a sweet spot...meaning, when I was taking enough to manage the dragon.. oops, I mean the Inflammation,.. I would have a few days/(weeks) of relative comfort, then time for the next TINY reduction. If, after a few days at your new dose, you have symptoms returning, ( and you will know!) , your dragon is not ready to drop to a lower dose. I have stayed at some levels of Prednisone for months... then Finally made the next reduction. BTW, I also use Paracetamol when needed, and take a nap every day. When your new Baby is coming to visit, it's not time to take a reduction of pred. After all, this is our life, and we want to enjoy every single moment! Happy Spring , Jerri

[IdasMum]

Thanks for all your replies and support.

I rang for an appt with my rheumy this morning and she can see me Tuesday afternoon which is handy as we leave a few days later. I have no idea what she will do (if anything) and hope that she will reassure my doctor and allow me to coast for a while at this level.

I have downloaded and printed a Steroid Card as they don't do them here (for France think reactive not proactive)....I feel happier having one in my possession.

Feeling so much better and alive and able to get on with admin tasks today....have already printed off all the Boarding passes etc and have days to go yet

[Lafontainepam1]

When your in a bad way, I say go up. I did it! I was at 7mg. Went to 6 1/2 then 6. It didn't work, did one day at 10 second day 7. Staying on 7. I've had PMR for over 5 years, at 67, it's the quality of life for me. Be careful of over cleaning, it will put you on the couch. Good luck💕💕💕