feeling scared coping with necessity to increase dose after flare

[orangebee]

A bit of history..... My PMR was diagnosed in June 2021 and I started on 15mg prednisolone. (it had been undiagnosed since the Feb). I discovered this network and have dipped in on and off to pick up tips - Thank you! I managed pretty well getting down to 5mg by September 2022 but then being aware that I had a lot on my plate life-wise, I took things very slowly with 0.5 tapers getting down to 3.5 towards the end of September this year. All this time I have been careful to pace myself and conserve energy, prioritize social events/commitments etc.

I then unwisely started a slow taper of 0.25 towards the end of November. I have a lot going on at the moment including a house move and caring for elderly post-op Mum over Christmas. I was crazy to contemplate attempting a taper, but I suspect I'm not the only one with this wretched condition and it's straight-jacket of popping pills, whose desire to see the end of it overrides common sense! Arghh...

I started to get a bit achy but put that down to other things (I'd tripped over and injured my ankle) but then PMR niggles were definitely there by Christmas day. So I've been feeling defeated and dithered around as I have been/am scared about the advice given here to add 5mg for 7 days and then drop back down again.

So here's my pathetic tale......I tentatively took 4mg on the 26,27,28th, couldn't bring myself to take the recommended dose on the 29th and took 6mg, but then bit the bullet and have taken doses of 8mg yesterday and today. It took a massive effort to bring myself to do it and I woke in the early hours this morning in a panic though did calm myself down. It feels so hard going in the 'wrong' direction with the dose. But of course, it is the right direction as my symptoms have started to settle.

Added to my anxiety about taking this increased dose, I'm scared at the prospect of dropping back down to my last stable dose after the 7 days. Having been careful (until this hiccup) going down slowly, I'm really nervous about how my body will react to such a sudden drop and worried I'll need to do a lot of tapering again!

Apologies for the lengthy screed! Thank you for reading it!

Should I be worried, can it really be as easy as that?!?

[DorsetLady PMRGCAuk volunteer]

It is easier than you think…. you need the 5mg increase to get the flare under control - and provide you don’t stay on the increased for longer than 14 days you can drop back down to just above your previous dose. Been tried and tested by many 😊.

As for going in the wrong direction or reversing - sometimes you have to - otherwise you end up in a cul-de-sac and then you are stuck!

And you are right, it’s crazy to taper when you have other stresses on the horizon. I never reduced just before Christmas, nor any holiday actually..

Hopefully you will find as easy as it sounds…

[orangebee in reply to DorsetLady]

Oh goodness you've responded so quickly! Thank you so much. I can't tell you how reassuring it is to hear that provided I don't stay on the increased dose for more than 14 days I can drop back down.

Should I be ok to drop back to 3.5 do you think?

I've learnt my lesson as far as factoring in stresses is concerned!

I can't thank you enough for being there and giving me the reassurance I need.

Happy New Year!

[DorsetLady PMRGCAuk volunteer in reply to orangebee]

I’d try 4mg if it were me….just to give a bit of wriggle room… you may have been struggling a bit at 3.25mg without realising it.

I know you are anxious to lower your Pred dose, but at 2 and half years in, you may have some way to go… and the last thing you want is too low a dose, it’s a no-win situation..

[orangebee in reply to DorsetLady]

I'll go for 4mg then. This whole episode has made me face up to the fact that I have a longer way to go than I'd previously hoped. I'll get my move well out of the way before I try anything new!

[DorsetLady PMRGCAuk volunteer in reply to orangebee]

👍

[PMRpro Ambassador]

Never try to reduce when major life events are in the way - and moving house is one of them!! The "wrong way" with dose is to try to go down where circumstances and your body say no. All that happens is that you get in a mess and end up needing even more pred to sort things out because it is a bigger job and takes long than a few days.

There are a few rheumies who tell patients not to try tapering in the winter - never mind just over Christmas!!

This isn't meant in any way as a criticism - but if you try doing a bit more than just dipping in and out and read regularly you will learn such a lot about PMR, pred, tapering and how it works when you have a hiccup. It is all about learning from others who have been there before. Many read the forum with their morning cuppa and often find they don't need to ask a question because someone else asked it for them!

[orangebee]

Thank you too for responding so quickly!

I've certainly got myself in a mess !

Very interesting about not trying to taper in the winter.

I shall take your advice and read the forum on a regular basis - I think it was a form of denial not engaging. I've learnt my lesson the hard way!

Many thanks for your support and being there for us all.

A Happy New Year!

[PMRpro Ambassador in reply to orangebee]

It's what we do. If you post in European daytime you will almost always get at least an acknowledgement from us within a couple of hours at most. No-one gets left hanging for days.

[Bayleaf1 in reply to orangebee]

I am also guilty of just dipping in on the forum and completely agree to myself being in denial at times. When I was eventually diagnosed with PMR in September 2022 I was also a few months later diagnosed with serious Osteoporosis in my spine which came as a complete shock. I then researched and came across Health Unlocked and signed up for both forums and then found I was overloaded with all the information so checked out of both just getting a monthly update. However, I always get a great sense on comfort from this PMR group and that is something I really need right now so I’m definitely going “all in” from now on. I too am tapering very slowly from 15mg and am now at 4.5mg having stalled back in the summer at 7mg. Anyway, I wish you well and hope you can get back to where you want to be now.

[DorsetLady PMRGCAuk volunteer in reply to Bayleaf1]

Don’t feel guilty about dipping in and out - it can be overwhelming certainly early days. And although many do read it first thing with their morning cuppa, it’s not compulsory - you may be in the ‘club’ but it’s not like being in the army and on parade.. and certainly no ‘about turn and quick march’. 🤣😂

We do comfort as well.. 😊

[orangebee in reply to Bayleaf1]

Thank you for your message. I'm sorry to hear about your alarming diagnosis of osteoporosis that must be very scary, particularly when you pop your pills in the morning. I wish you well too 😊 as we navigate our way into 2024!

[orangebee]

You're Angels!

[PMRpro Ambassador in reply to orangebee]

Well, my mate is a Viking Goddess Me - couldn't possibly comment.

[orangebee in reply to PMRpro]

😊 Blessed be......

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well not exactly angelic - despite being told you look like one….

[orangebee in reply to DorsetLady]

😇 A definite angelic leaning I think....

[PMRpro Ambassador in reply to DorsetLady]

You've forgotten Lucifer ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Never…😳

[orangebee in reply to PMRpro]

Don't tell me you're related.......

[PMRpro Ambassador in reply to orangebee]

Who? Lucifer and me???? Don't think I am as fallen as he was ...

[orangebee in reply to PMRpro]

🤣

[Thiago1396 in reply to PMRpro]

😂

[Ridge]

Just to say that your reduction which you say was so slow seemed fast to me. That was before you got into trouble. Stress (which also can be fun things) seems to trigger either PMR or highlight sleepy Adrenals. Either way never reduce during any extra activity. Christmas certainly is that even a quiet one!!! Good luck and Happy New Year and a successful one to boot!

I have been hopeless at reducing but with this support group I do understand why which is a start?!🥴

[orangebee in reply to Ridge]

Thank you! I've learnt my lesson. Good luck to you too with your tapering!

[HarcHill]

Just to reassure you, I too was diagnosed in 2021. I got down to 3mg by September 2022 and then had a very stressful event occur and subsequently a PMR flare. I increased to 10mg for a week then settled back onto 3.5, where I felt stuck for ages. I took it super-slow, now doing fine on 2mg reducing super slowly to 1.5

[orangebee in reply to HarcHill]

It's so good to hear of your similar experience and that you were straight back down after the high dosage. You're doing really well after that! Thank you! May your successful tapering continue!

[HarcHill in reply to orangebee]

And yours too!

[Maggieart]

I want to know the answer too! I am hurting, but worried about increasing and not being able to get back to 4.5

[DorsetLady PMRGCAuk volunteer in reply to Maggieart]

Try following same advice given to author… no point in suffering on too low a dose. This contains advice for dealing with a flare-

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Maggieart]

It isn't "getting back to 4.5" you need to worry about - it is "getting the right dose for you NOW". If 4,5mg is not enough to manage the inflammation, then the inflammation will slowly build up until you are back where you started and needing even more. You can't cheat PMR, it always wins.

[orangebee in reply to Maggieart]

It is hard - I know exactly how you're feeling about taking a step back up the ladder with the dosage and accepting that your PMR is more active than you'd hoped. But I have been reassured by the advice and support given here. I've taken some deep breaths and am taking the increased dose for 7 days - I hope you have the courage to do so too!

[Viveka]

I think you are being far too hard on yourself. You have followed a sensible taper throughout. So the extra quarter was a step too far in the circumstances, but this is a learning experience. Few of us seem to have a completely flare free journey.

When you get back to 4, it is possible that you may still have a few symptoms because of pred up and down, but don't worry, stick with it and let things settle and stabilise.

I completely understand the horrible feeling of going backwards, as this happened to me last December, but things settled and after 3 months I resumed tapering and am now at 1.75 with fingers crossed. Don't forget that 5 and under are seen as low, non toxic doses, which I presume mean are having minimal effect on bodily systems.

[orangebee in reply to Viveka]

Such a learning experience indeed! I thought I understood the disease, but this has really brought home to me what is really happening in my body.

Thank you for sharing your experience and the progress you've made - fabulous!

Good to know too that 5 and under is considered a non-toxic dose. I shall embrace my medication with more gratitude!

[Giuliana9]

Its still a comparatively low dose. You're doing well and you'll do better still if you don't torment yourself. At our age it is not the end of the world if you need to take medication like this for the rest of your life. It is medication for the damage done by living this long and its inflammatory side effects. There is no cure. So far.

[orangebee in reply to Giuliana9]

Thank you - you are absolutely right that it's not the end of the world. It just feels like it sometimes when you're in the thick of it 😂. I'm generally thankful that there are the drugs available to keep us going into a more comfortable old age!

I am calmer now - I have one more day at the increased dose!