A little lost on the journey and unsure of dosage...

[Zacsmimi]

Well, as many of you know, while learning to "dance" with PMR recently, I broke my foot. Last visit to rheumy was just 2 days before the fall... I did labs then, too. and am awaiting his call with results, etc. I expect all to be normal. The problem is that I was trying to adjust my dosage in the same time frame, and I ended up at 10 mg again of methyl prednilosone. Now I have the bone fracture, and am also experiencing some side effects that always make me miserable... Insomnia, dry mouth, fatigue, and unreasonable emotions that seemed determined to express themselves a couple times a day ... I end up crying at night...I want to lower the dose again but I'm afraid I'll set myself up for a full on relapse. I havent even told my rheumy about my foot yet. Thoughts?

[markbenjamin57]

Hello Zacsmimi

Ohh, sorry to hear you're struggling! First, PMR, and then a nasty fall / injury.. :-(.

Re. the 'side effects', I don't consider myself an expert in these things, but it's no wonder you feel so fed-up! To my mind, these aren't (q) 'unreasonable symptoms / emotions' - more a case of quite natural, (and pent-up?) frustration about both the underlying PMR symptoms, and then further (hopefully, temporary) immobility? I felt the same when I strained my calf muscle and acchiles tendon - all when feeling a bit 'better' (but not a patch on what you've just been through..) and then over-doing it (Mind / Body stuff, as I'm sure you, of all, will know).

Yes, tell your Rheum about the foot injury asap and I'm sure he / she will know what to advise in terms of adjusting pred dosage to compensate for the recent, additional stress on your body (not to mention your emotions). But try not to fear the worst (relapse..), since you have seemed to be doing so well.

From the little I know about you from your very positive posts here, you're probably just feeling a little anxious / 'spooked' after what's just happened, and needing some reassurance when feeling truly miserable and running-on-empty energy wise! That said, I'm sure other expert contributors here will have their opinions and advice also.

Also, try not to get hung-up on the 'reducing pred' issue - especially where you are right now. As many experts say here, you don't have to race to Club Zero and sometimes we have to just trust this powerful medication that manages the sometimes tricky process (like it or not..). A bit like a game of physiological / emotional Snakes and Ladders?

As the comedian Harry Hill would say, 'And Relax...' - not as daft as it sounds?!

Best thoughts and try to stay positive.

Mark B

[Zacsmimi in reply to markbenjamin57]

Thank you, Mark. I do seem to resonate with your posts often. I am working on simply accepting what is. By the way... What's a Snakes and Ladders ?

[DorsetLady PMRGCAuk volunteer in reply to Zacsmimi]

A child's board game. It has numbered squares - think it goes up to 64? - starting bottom left with snakes and ladders imposed on it running from top to bottom. You throw a dice to see how many squares you move, if you land on a square with the bottom of a ladder on it, then you climb the ladder. However if you land on a square with snake on it then you have to go back down to the tail of the snake. First one to the top right hand square is the winner.

But like life really, some days you climb the ladder, some days you slide down the snake!

Probably not politically correct nowadays! League against cruelty to snakes object. Ce la vie!

Shows my age, and Mark's - or maybe it's just a British thing!

[Zacsmimi in reply to DorsetLady]

It's British. We gave chutes and ladders... Sounds the same!

[DorsetLady PMRGCAuk volunteer in reply to Zacsmimi]

Yup. We Brits always have to involve animals!

[markbenjamin57 in reply to DorsetLady]

Not to mention attempting to climb ladders using just a roll of the dice? The Health and Safety Executive (UK) would be very worried..

BTW DorsetLady, what's this 'showing our age' thing? - we're all kids at heart

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

I can just manage the ladders now, so long as there's only 3 rungs! But snakes - nooooooo way, Jose.

[markbenjamin57 in reply to DorsetLady]

You're like 'Nooooooo way, Jose'.. I'm like 'Waaasup?'

[markbenjamin57 in reply to Zacsmimi]

I think DorsetLady got there first!

[SheffieldJane]

Well done Zacsmimi, for getting to 10 mgs at all. It seems an unattainable goal for me right now. I share your insomnia and now sleep in hour or two bursts throughout the 24 hours, seems to work ok. There are dry mouth preparations you can get over the counter that have been oddly effective for me. As for the moods, well I share those too and can be quite childishly hateful to my husband especially when he gives me the silent treatment back. Part of me feels relieved and stronger by expressing anger at what's happened to me. I often feel like crying because I feel so rotten, that's relieving too. I also get kind of paranoid thinking that has me convinced that nobody likes me and I'm a failure, this tells me I need to lie down and read or sleep, it always means I'm tired.( mind you, I don't sound very likeable do I?) poor you with your foot. Please cosset yourself and postpone your reduction programme while you mend. This is not a race, Pred is a wonderful drug and a terrible drug and it's all we've got, so embrace it. Without it we would be stuck in more ways than one. Bless you and go well! 🌹

[markbenjamin57 in reply to SheffieldJane]

I so agree SheffieldJane

The combination of quite a serious (and sudden onset) illness and the side-effects of the powerful meds that manage the symptoms of it can leave us questioning our self-concept in so many ways. Yes, a feeling of 'failure' / lack of confidence is one, and I'm sure it's quite a common experience.

I think you've got it in one re. preds being wonderful and terrible at the same time - but as PMRpro and others say, the alternatives are even less attractive.

[PMRpro Ambassador]

Well I wouldn't reduce with the trauma - in fact, I suspect some doctors would have suggested increasing the dose! And your labs from the day before the fall probably may not match what they would be now...

As the others have suggested - the entire situation won't be helping your mood either.

Listen to Sheffield Jane's musings from her cliff above the Aegean...