Stress and tapering -again: Hi all 😊 So, daughter... - PMRGCAuk

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Stress and tapering -again

Nextoneplease profile image
62 Replies

Hi all 😊

So, daughter having had baby, and thinking I now mainly had one grandson to look after (other son in law taking a month's paternity leave), I decided yesterday to taper down from 12.5mg to 12mg. Not a big reduction…..but had an amazing effect. By lunchtime I couldn’t fasten my car seatbelt, teatime I struggled to wash up, and by bedtime, my shoulder, biceps, wrist and neck had that screaming sort of pain that announces PMR 😞

So I re-read the ‘Flare or Withdrawal’ post in FAQs, gave myself a stern talking to and took myself to bed, thinking it could be steroid withdrawal, and if no better today, I’d go back to 12.5 and alternate doses day by day……This morning I felt a bit better but not great, so I took the 12.5mg.

Then….had a bowl of veg soup with hubby for lunch in a cafe, had a chat to a friend, looked back and saw hubby looking very unwell 😳 In short, I had to call an ambulance, his blood pressure was very low and he had a temperature of 34 degrees (ie very cold). He couldn’t weight bear and was dizzy with a dreadful colour. He’s in hospital as I write. They’ve 🤞ruled out stroke and heart failure and think he may have an infection…..hopefully more news tomorrow.

Not sure why I’m writing this really, no one can do anything. But it does emphasise that there’s maybe a time for tapering and a time for not. This seems not to be my time!

Meanwhile my thoughts are with my husband….

Thanks for reading, no need to reply xx

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Nextoneplease
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62 Replies
Seacat30 profile image
Seacat30

Fingers crossed 🤞 for good news tomorrow. Hang on in there xxx

Nextoneplease profile image
Nextoneplease in reply toSeacat30

Thank you Seacat x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Oh dear….hope hubby okay 🌸….and no more thoughts of reducing, atm anyway.

Nextoneplease profile image
Nextoneplease in reply toDorsetLady

Thank you 😊and no, I won’t…..x

Maisie1958 profile image
Maisie1958

Sorry to hear this. Wishing your husband a swift recovery.

Nextoneplease profile image
Nextoneplease in reply toMaisie1958

Thanks Maisie

Nextoneplease profile image
Nextoneplease

Thank you fm - enjoy the holidays x

Sorry fm, I wonder if I somehow deleted your original post a couple of nights ago 🤔 Anyway I do remember the gist and I say again - happy holidays 😊

SheffieldJane profile image
SheffieldJane

This is a time for not tapering obvs!Wishing your husband a speedy and complete recovery. Congratulations on the new baby. You can only do so much at present or you will be no use to anyone. They know you love them. 🧸

Nextoneplease profile image
Nextoneplease in reply toSheffieldJane

Thank you SJ x

Grammy80 profile image
Grammy80

I'm so sorry to hear about your husband and hope that you get some good news within the next day or so. Like me, I'm sure you wrote because you're surrounded by friends and support on the Forum. All of this impact your PMR.... I am surely not telling you anything you don't know. I wish you well and please take care of yourself. Congratulations Grandma! Cast of a milligram may not seem like much but it is! Thoughts and prayers for you and your husband.💖

herdysheep profile image
herdysheep in reply toGrammy80

Very well put Grammy. Pls allow me to echo your words!

Grammy80 profile image
Grammy80 in reply toherdysheep

Any time...many of these wise words are often lifelines for me.💖

Nextoneplease profile image
Nextoneplease in reply toGrammy80

Thank you Grammy- yours are a lifeline to me too 😊x

Grammy80 profile image
Grammy80 in reply toNextoneplease

💖💖 We are all so fortunate to be part of this forum....you never know when what you say is what someone needs to hear...or strikes the right chord and gives hope and support.

Nextoneplease profile image
Nextoneplease in reply toGrammy80

So true Grammy 🤗xx

TheMoaningViolet profile image
TheMoaningViolet

Oh dear, I hope your husband is going to be okay. 🙏 As you say, it doesn't look like a good moment to taper. I was quite startled to hear how quickly your body responded to Prednisolone deficit, at least you knew exactly what to do. Wishing you well and a restful night. Vx

Temoral profile image
Temoral

We are all thinking of you...and sending positive waves . Wishing speedy recovery to your husband.

Bcol profile image
Bcol

Morning Nextoneplease, fab news re the baby but not so good re your husband. Best wishes and hugs to you and hopes for a speedy recovery to your husband. Hopefully you will be able to continue the taper in a few says but suggest you don't rush. As to why you posted, as Grammy says, the support and friendship we all get from the forum and its contributors is outstanding and although a post, at times, might appear to have little or no relevance to PMR/GCA that is far from the truth, as anything which helps to relieve anyone's stress will lessen the possibility of our inflammation getting worse and having a flare.

bussell profile image
bussell in reply toBcol

Just reaffirming all Bcol says.

Kendrew profile image
Kendrew

Really happy to hear your 'baby' news. Such a joyful event, but very sorry to hear about your husband. Thankfully two of the most worrying things it could have been have been eliminated and if he does have an infection then he's in the best possible place to get it sorted.

It will be a very worrying time for you but as Bcol so rightfully said, this is a forum that offers support and empathy for anything that may impact on our PMR/GCA lives! If sharing your concerns helps then that's a good thing.

I wish your husband a quick diagnosis and a speedy recovery and hope you can be reassured asap by the hospital that everything will be fine.

Constance13 profile image
Constance13

You're writing to us "to let off steam" which might prevent a relapse in the PMR. We all wish you that!

Very sorry to hear about your husband. What a shock! Hope they find out what caused the attack.

🍀🍀🍀

Viv54 profile image
Viv54

Oh dear ,im sorry to hear this hope he gets better soon, theres always something !!

MrsNails profile image
MrsNails

Morning 💐I missed your post yesterday - Congrats on The Baby 👶🏻

So sorry to hear about your husband - do let us know when your get an update 🙏🏼

For you, like me it’s time to consolidate, we live with this constant mantra “Reduce, Reduce, Reduce” trying to get to the lowest dose possible but sometimes we have to sit back & factor what else is going on…..

I’m on 10mg & if l didn’t have the issue with my arm etc l’d be ready to reduce.

Just look after you & hoping for good news re your hubby 🙏🏼

Angela xx

123-go profile image
123-go

There's nothing to add except to say that here's another one thinking of you and hoping for a good outcome on all fronts. Your, "No need to reply" hasn't worked, has it? You know what we're like-can't help ourselves can we? 😏

Looking forward to better news as and when.

All good wishes and congrats on the arrival of the new baby. Take care and rest while you can. 💐

PMRpro profile image
PMRproAmbassador

Sorry to hear your OH is so unwell - all the best. 34C is indeed VERY low!

But really - all you have going on anyway is enough to say leave messing with the dose until after xmas!!!! Even nice events cause stress ...

Broseley profile image
Broseley

So sorry to hear about your hubby and I hope he gets well soon. Definitely not the time to taper so I gather! Your experiences go to help other people learn about this condition as well as the reassurance you get from other members. Let's all keep posting.

whitefishbay profile image
whitefishbay

Good luck with everything. Hope they sort out your OH quickly.

Rose54 profile image
Rose54

I do hope he is OK But take some time out for yourself and rest as much as you can

Melti profile image
Melti

What an emotional turmoil - new baby joy, and then such worry about OH. I do hope the hospital sorts him out and he feels better soon. Take care 🌷

GrannyJane profile image
GrannyJane

Everyone has said all I feel, hope your husband is on the road to recovery and your new grandchild is bringing you some joy and comfort. Forget the pred reduction until life calms down, just look after yourself. 🥰👍🏻🙏

Charlie1boy profile image
Charlie1boy

Nothing to add really, except that I will be thinking about and praying for your situation.Blessings

Paddy

Dambusters profile image
Dambusters

MY heart goes out to you; I thought I had it bad.We are moving house but that has been a stressful tale of woe with buyer snapping at our heels to be in and sellers solicitor sitting on his hands. I had a flare up too and had to gradually go back up to 12mg from 9.5 after my husband had a TIA, causing more stress.

I do hope your husband is soon diagnosed and helped and that you are free of pain.

Nextoneplease profile image
Nextoneplease in reply toDambusters

Thank you Dambusters and my very best wishes to you - I think you do have it bad! x

Poshdog profile image
Poshdog

Firmly believe stress plays a huge part in all this. If it were me I would just stay at 12.5mgs until it all calms down a bit. Lovely news about grandson but that will also present extra work however lovely. My partner recently taken into hospital - endocarditis - and the last thing I am thinking about is tapering! Very best wishes to your husband, do please let us all know how it goes. x

Nextoneplease profile image
Nextoneplease in reply toPoshdog

Thank you Poshdog and hope your husband is improving x

I agree, I’m certainly staying at 12.5 at the moment

Nextoneplease profile image
Nextoneplease

Thank you all so much xx

It was so good last night to offload to you, and wonderful this morning to read all your great replies 🌺xx

There’s no real news as yet - hubby in emergency assessment unit. I can’t visit until they get the outcome of a (hopefully negative) Covid test….

Thanks again - every reply much appreciated.

Nextoneplease x

Suffererc profile image
Suffererc

If you are saying having the children is too much, tell them. I found when I stayed with my daughter and she expected me to look after her 9 month old while she had a break, too much. Lifting and holding set a flare off . They have to understand we are ill 😊

Nextoneplease profile image
Nextoneplease in reply toSuffererc

Hi Suffererc 😊

Thanks for this. I find I can manage the children if it’s well planned. A couple of months ago I found myself lifting a well-padded toddler in and out of the bath and boy, did I suffer! Was awake all night with pain….got control of it by immediately upping pred for a few days.

You’re right, I’m on the edge with it but I’ll go on as long as I can manage it. Will definitely let them know if and when it gets too much xx

Sharitone profile image
Sharitone

Hoping today's news is good. Btw, I do like your avatar name!

Nextoneplease profile image
Nextoneplease in reply toSharitone

News update below, Sharitone- good, I think 😊

Re my username, I chose it years ago, then promptly forgot all about HU. Came into its own again when I developed PMR/GCA this year. At the time, I think it reflected lots of feelings - of being a patient waiting in clinic queues, of ‘welcoming’ the next condition/ problem to come along, etc 😃xx

cycli profile image
cycli

Just clocked on and catching up. It's all been said and share those sentiments Nextoneplease. It doesn't help the not knowing so I do hope they diagnose the problem soon. I envy you the grandchildren. I'm unlikely to become a grandfather unless it has 4 legs and a tail. Only daughter is disinclined to have children. Good luck.

Nextoneplease profile image
Nextoneplease in reply tocycli

Thank you cycli

Nightingales profile image
Nightingales

I just wanted to add my best wishes for a good outcome and speedy recovery for your husband. And take really good care of yourself. 🌸

Nextoneplease profile image
Nextoneplease

Update

OH is home 🎉😊

He’s naturally very tired and has gone straight to bed after a light lunch of ham salad wrap. He came without discharge notes! So we’re both unclear about the cause of this episode. Although he doesn’t much care, I like to get the facts straight if I can…..🤷‍♀️

Apparently they reiterated what I already knew about low BP and temp. Also said he was dehydrated and has an infection (what infection??). Has a five day course of amoxicillin so it can’t be much….

So we’ll wait and see how he gets on. I’m reassured he didn’t have a stroke or heart attack but still don’t know what he did have.

Thank you all again, you have all been an incredible help to me when I could easily have flipped my lid 🌺🌺xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toNextoneplease

Ditto to Kendrew comments

PMRpro profile image
PMRproAmbassador in reply toNextoneplease

My suspicion would be a UTI that was caught very early - and I'll bet he got i.v. abx in force in A&E, Get at it fast enough and it doesn't get to sepsis and he had the red flags for that.

Nextoneplease profile image
Nextoneplease in reply toPMRpro

Hi PMRpro

I know you wouldn’t mention UTI potentially turning to sepsis lightly. So what were the red flags, do you mind me asking? Main symptoms were low BP, irregular heartbeat, low temp, unable to weight bear, vomiting, clammy and very pale. Could barely keep his eyes open or head up for the 2hours I was with him before he disappeared into the Resus section in A&E. I knew it was potentially serious when they showed me into the relatives room, rather than turning me away at the door, as is normal with Covid regulations….

PMRpro profile image
PMRproAmbassador in reply toNextoneplease

All of the above. Or often a very high temperature instead.

webmd.com/a-to-z-guides/sep...

Nextoneplease profile image
Nextoneplease in reply toPMRpro

Thank you 😊x

Kendrew profile image
Kendrew

Think most likely thing could be a urinary tract infection ...can make you very unwell and often treated with amoxicillin. Maybe get your GP to find out relevant info for you?So pleased he's home though.

Nextoneplease profile image
Nextoneplease in reply toKendrew

Thank you Kendrew 😊My money’s on a UTI too - will check with GP as you suggest x

Maudie19 profile image
Maudie19

You needed to talk to someone and we are listening. My mum had an episode like your husband - turned out it was a medication had slowed her heart beat to a dangerous level - she lived to 94!

Nextoneplease profile image
Nextoneplease in reply toMaudie19

Thank you Maudie 😊

Yes, will check out his meds with GP asap- he’s still on meds for high blood pressure but now he’s had this episode, that’s an obvious one to check I think x

LemonZest11 profile image
LemonZest11

Sending big hugs from Downunder. What a stressful time, so glad to read that things are improving a bit. Congrats on the new bub, that's exciting, and hopefully a bit of joy amid all the stress you have endured. Thinking of you and hoping for a less bumpy lead up to Christmas. Xx

Nextoneplease profile image
Nextoneplease in reply toLemonZest11

Thank you LemonZest 😊x

MiloCollie profile image
MiloCollie

Take each hour at a time. Stay calm and try to rest. Drink plenty and pace yourself. Stuff anything like housework and prioritise you and hubby. ❤️

Buttonshutton profile image
Buttonshutton

Oh no. I'm sorry to hear that. Congrats on the baby by the way. Tapering is horrible. I'm having to do 2.5 at a time and that's giving me Gip. Had to cancel rheumy in 5 weeks as clashes with day I start a new job so been changed to two weeks after that so I'm gonna go down slower now and will still be on the dose she wants by the time see her. Definitely done the right thing. There's no rush. This thing is bad enough isn't it and then when things to deal with besides we need to feel ok mentally and pain is not conducive to that. I really hope he's ok soon. Let us know. As for writing on here you know we get how emotional thinks make us when dealing with extra things life chucks at us !

PMRpro profile image
PMRproAmbassador in reply toButtonshutton

TELL the rheumy you struggle with 2.5mg - if they don't know they will never learn not everyone can.

Buttonshutton profile image
Buttonshutton in reply toPMRpro

She knows. It's all to do with the scan I was banging on about the other day to get me off it etc. but as it's been postponed (the next appointment) I've done the baths and can do 1.5 reductions now.

Temoral profile image
Temoral

Hi....hope things are improving for you today. 🙏

Nextoneplease profile image
Nextoneplease in reply toTemoral

Thank you Temoral 😊

Thankfully hubby seems much better today 👍 He seems to have accepted that he has an infection and that he needs a bit of time to get over it. At first he was trying to launch himself back into his normal level of activity, and that wasn’t working!! Now that he’s calmed down a bit, I am suddenly struck with a wave of exhaustion- I think we might both be napping this afternoon 😴xx

Temoral profile image
Temoral in reply toNextoneplease

Great idea! Have a restful ..if possible..weekend . 😴

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