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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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. 🧸
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.💖
💖💖 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.
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
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.
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.
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 🙏🏼
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. 💐
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.
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. 🥰👍🏻🙏
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.
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
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 😊
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
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
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.
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
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.
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….
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.
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!
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
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
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 !
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.
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
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Still tapering but.....
Still difficulty in tapering 
Struggling with tapering
Stress and possible flare
HOW LITTLE OUR GP'S KNOW
