Down to 6 at last!

[Louisepenygraig]

Nearly 2 years ago I was involved in a nasty traffic accident where several of my bones were broken. I was admitted to an ICU where, before they operated, I was warned I might not survive or, if I did, I'd probably end up in a nursing home. I was 76 at the time which was what they were basing their prognosis on. Luckily neither of those were true! I haven't fully got back my strength and I doubt I'll ever be able to kneel down and get back up again - I can do the former but not the latter! I have fibromyalgia as well which complicates things. At the time I was on 5½mg tapering to 5 so I told all the medics that I was on 6 as it seemed easier. I stayed on 6 for about the first 6 weeks of my stay which was fine until they tried to get me walking again. I was fine for a few steps but then I'd start to feel faint and have to sit down. Eventual they decided maybe my adrenals needed a boost so they upped my steroids to 15mg (!) which did the trick. When I was discharged 2 weeks later I was on 10 had had instructions to taper by ½mg a month. As I had been through this all before without too much trouble, apart from finding things difficult around 7 I assumed it would be a doddle and I might even go a bit faster. I did to start with but again I had problems with dizziness at 7 so stayed at 7 until that passed. I've had some ups and downs but I am here at last, without going back through what records I've got, I've no idea why it took so long, after all 4mg drop at ½mg a time should only take a year. But I am here now and feeling good - apart from non PMR related problems. When I look back at records from just before the accident I was actually very nearly on 5. Once I've had a couple of weeks rest on 6 I'll start going down again, and if it goes as smoothly as 6.5 to 6 did I carry on steadily to 5 using the DSNS method. My ambition for a long time has been to get to 5 and rest there. As I struggle with my energy (or lack thereof) I'm in no hurry to have the struggle with my adrenals that so many people describe! Quality of life comes top for me

[piglette]

You have had quite a time. With the dizziness, do you think it is your blood pressure dropping rather low?

[Louisepenygraig in reply to piglette]

it wasn't in hospital as they tested that, and it was fainting not dizziness. At 7mg it was dizziness but and I'd get it when sitting up in bed or lying down and in both cases it would stop if I stayed still- if it was too bad when I lay down sometimes I held my husband's hand even though I knew I couldn't go anywhere! Other times like getting out of bed to go the toilet so I'd either sit down and wait for the world to stop turning or take it very slowly and keep my head as still as I could. The funny thing (to me) is that both times it's only happened around 7 not above or below, so far

[piglette in reply to Louisepenygraig]

I tend to be a fainter (description by doctors!!) Has it happened just a couple of times or is it more often?

[Louisepenygraig in reply to piglette]

I think I've only fainted right out 3 times in my life, the last time was not long before I was diagnosed with PMR and I think it was a result of overdoing things, over the next couple of months I threw up and very nearly fainted twice. Since childhood though I've often felt faint enough to need to sit with my head down between my knees to stop it happening, two of the times I went right out was when I ignored that feeling and told myself I'd be OK if I carried on with deep breathing. I didn't want to make a fuss! Since i've had the accident I've thrown up twice at least and not fainted because I either sat or lain down straight away. I sat 'thrown up' rather than vomited because that's what it feels like - a sudden emptying of the stomach with no after effects!

[piglette in reply to Louisepenygraig]

You sound like me. I try to avoid it but every so often fail. My father had the same problem. He managed to faint in the middle of a talk by the heart replacement surgeon Christiaan Barnard. A hall full of doctors and none of them knew what to do!!

[Louisepenygraig in reply to piglette]

that sounds about right, I started to feel faint once in my GPs surgery after I'd had a steroid injection into my arm while I was standing up. He didn't really know what to do but he let me lie on his couch to recover, he probably took my pulse, then he paced the room, obviously at a loss and then disappeared downstairs for a bit. When he came back I felt I ought to go even though I wasn't quite ready. He just let me go, didn't ask if I was ok, or suggest I sit in the waiting room for a bit or anything. I did manage to get back to my car without further incident and recovered there!

[piglette in reply to Louisepenygraig]

Sounds like my father. He had picked me up from school, I was about 5 years old, and he wandered along to the hospital to chat with his pals. I remember leaning back against the wall and then slowly sliding down as I passed out. My father called a nurse along to look after me and then carried on chatting!!

[Louisepenygraig in reply to piglette]

I'm tired now but I think I'd like to carry this conversation on tomorrow, probably as a private conversation

[HeronNS]

As pred is an anti-inflammatory I wonder if it's helping some residual damage from your serious injuries? I found after I was at pred zero that in fact pred had been doing more for me than easing PMR pain - it appeared to have also squashed a pre-existing skin condition I'd had intermittently for years and during the years on pred had completely forgotten about! That's why I wonder whether pred is doing more for you than the PMR control, in which case you should feel perfectly entitled to continue your taper at an even slower pace than you might have otherwise.

So glad to hear that you have been recovering. Good luck with the ongoing journey. 💐

[Louisepenygraig in reply to HeronNS]

you're quite likely right. I think my recovery took more out of me than I realised. Because everyone was amazed at how well, and how quickly, I kept expecting more from myself than was realisitic, but the pred probably helped me with that. I probably had quite long spells when I didn't reduce at all, like if I was ill or under the weather, or on holiday

[DorsetLady PMRGCAuk volunteer]

Your last sentence is absolutely spot on… and best of luck with continued recovery… and at your own pace. 🌸

[PMRpro Ambassador]

"after all 4mg drop at ½mg a time should only take a year"

No, not at all - even without the vagaries of PMR, it all depends on whether your adrenal glands are willing and able to wake up and produce cortisol again. As we age, they tend to slow down (like the rest of us). But many take far more than a couple of months for each step down - even at 1/2mg at a time.

The dizziness could have been coincidental - what you describe sounds like BPPV, that just happened to occur at 7mg.

mayoclinic.org/diseases-con....

You have done really well - with such a serious accident, even much younger patients need more than 2 years to recover. And quite - QOL is all ...

[Louisepenygraig in reply to PMRpro]

thank you.

[Angelsmummy]

Well done you,what a trooper you are!AND such positivity.Wishing you all the very best and hope things continue to improve for you L.xxx👏🏼👏🏼👏🏼💐💐😜