After so many years and so many slow tapers ,to as low as 2mg , this was proving to be the toughest after the loss of my mum and lots of stressful situations. I’m fighting the hospital that “didn’t “ treat her well, going through her medical records etc for meetings. It’s emotionally draining as well as physically.
I finally thought I’d managed to reduce to 7mg after 8 long weeks. I began dropping to 6.5 , managed a couple of drops on the slowest taper .
unfortunately I’ve felt fluey and the most fatigued, not dissimilar to recovering from flu .
I know it’s my adrenal function, I can’t think straight, should I return to just above 7 again for a short time or start tapering again from above 7 ?
I can’t manage on 7 as much as it pains me. I need a blast of Adrenaline to start again and stay at the next lower dose for much longer . Do you suggest 7.5 mg or 8mg .
many thanks in advance x
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Greensleeves
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Sorry to hear about your stress-and I’d be inclined to go back to 7.5mg and think about staying there for a few months.
You can easily review the situation after a month…and then decide if it’s another month at same dose or try a step down.,
Will give you chance to hopefully get a few more things sorted and will also give adrenals a chance to catch up… it’s just about the level they need think about doing something.
Thanks so much DL , I’ll do that, return to 7.5mg .
I should really know better, I suppose it’s wanting sound advice and not being sure of my own judgement. I think it’ll take a few days back at 7.5 to feel human again . It’s like climbing a mountain to put the kettle on .
Thank you , i have a plan once more . It’s probably wiser to stay at that dose until this time of uncertainty and emotion has settled .
Thank you Piglette , it’s dreadful isn’t it , I feel it gets tougher with each attempt.
Feeling like a zombie is a perfect description.
I’ve never slept so much, but have so much to do. It’s most frustrating.
I’ve accepted I’ll probably never be able to stop the Pred completely as it stands , but do want to reach the lowest dose possible where I can function.
Thank you Piglette , it’s been 12 years now, I could potentially have stopped them years ago if the rheumatologist hadn’t told me to stay on a 5mg maintenance dose for several years. Two bouts of Covid and I had to start again from scratch each time.
I do hope so eventually, thank you for giving hope .
I think the "I'm fighting ..." sums it up, it is in the present tense and you aren't coping with the stress. I say so often - don't underestimate just how debilitating the stress of this sort can be, You just end up making yourself ill and it all becomes harder - and you make yourself even worse,
You’re right PMRpro , it is fighting, it’s stressful and stress is bad for anyone , without us being dependent upon Prednisilone .
I cannot let serious wrongs go by without challenging them. It will no doubt be a futile effort as they close ranks.
It’s sad when you only wish for transparency, truth and justice of sorts .
My mum would not wish for me to make myself ill , I’ll have the final hospital meeting and try let it go for my sanity.
I can’t have any respite or holiday whilst my brother is in a nursing home and dependent. There is only us left from a large loving family full of happy memories.
I have my children, they’re wonderful but working full time and as overwhelmed by it all as me .
Thank you for your words of wisdom and experience. I know things have been far from plain sailing for you and you understand.
It’s an unexpected stage of life isn’t it? When you’re the one being looked to for wisdom and answers! Inside I feel as I always have but my family rely on my silver hair(never grey as I tell the grandchildren! 😂). Up your dosage, deep breath and let go the battles you can’t win. Life is short and precious, regain joy in tribute to what sounds to be a loving, kind Mother. Good luck! ❤️
Thank you for your wise words, it’s totally unexpected to find yourself as the Matriarch when you still feel the same as always. My Mother was the wisest, cleverest, kindest and most wonderful human being .
I have one more battle , have time to prepare.
I’ve upped the dose .it feels disappointing but it’s necessary.
I’m sure you’re passing on your fun , wisdom and love to your grandchildren Thelmarina . I wish I had lovely silver hair, Take care x
So sorry about your husband’s diagnosis HelenDaisy , these shocks , stress bring on PMR if we’re predisposed. You have both had your world turned upside down. I hope things improve for you both.
Thank you for your lovely kind words.i wish for better health for you both, such a struggle for you trying to cope when you’re in pain.
Dear Greensleeves, I am sure ALL of us on this wonderful site feel for you. Our collective arms are all around you.... Stress is a killer for us and when you talk of acceptance, I suspect that is the answer for you. Fighting anything is not what you need. I am dealing with a horrible bout of shingles atm and I have been quoting the Desiderata to myself over and over again.
Hi Greensleeves, What a lot you are carrying on your aching shoulders... You mention your Brother is in a nursing home and that this a factor preventing you getting some respite.
My dear wife was in a carehome for some years before finally (after a total of 14 years) succumbing to Altzheimer's disease. One thing I learned was that if I was to carry on loving her, taking her out and about etc, then I needed to learn to love myself a bit more too. For only if I came refreshed to the task could I cope with the vagaries and stress of visits and outings. Think re-chargeable batteries - they wear down but CAN come with fresh energy to power our coffee-frother or whatever!
Your brother should be well-enough looked after and cared for in his nursing home, so perhaps planning a week away with a good friend might be helpful? Perhaps your brother has a friend who could call in to visit him while you are away?
Each of us can only carry so much and PMR has its' own nasty way of reminding us of that...
"Think re-chargeable batteries - they wear down but CAN come with fresh energy to power our coffee-frother or whatever!"
And as my daughter's very resourceful partner showed - you can jump-start them even when they are too dead to charge normally! And then they are back to normal ...
It’s a strange condition PMRpro , was it hard to get a diagnosis for your daughter?
I’ve come across some very bright people with this . It’s the tying them down seems difficult.
My friends daughter has it , I speak to her but she isn’t listening. Perhaps I’m boring her and she doesn’t care to hide it. Now her child has it , he’s like a 6 year old genius with his imagination and big words. But he doesn’t sleep , can’t sit still and has OCD . Seems to be genetic factors. x
She got it privately, during Covid, in her early 40s. Wasn't a thing when she was a child but it answers a load of questions about the problems we had, especially as a teenager. She qualified as a nurse, went back to uni to do the dual qualification as a midwife but that was when it went more pear-shaped as the uni were useless in duty of care. She was too unwell to finish the placement so all that money was wasted for the sake of a few weeks because they wouldn't communicate with me and just sent emails to her. My husband was neurodiverse too - I think we all are to some extent, including me. Her son is definitely different but very clever, they all are.
There is a genetic component - good article in the Guardian today.
I think my friends grandson will have to get a private assessment too , Paediatrics and psychiatry have advised it’s a waiting game. In the meantime a 6 year old is struggling. Understands more about the Universe and physics than the majority of adults, but can’t get himself dressed or do simple lessons. Has to be hospitalised when he needs antibiotics for frequent tonsillitis, he refuses Abx and Calpol .
Shame on the University, your daughter was so close to completing her course . She’d have been an asset to midwifery, she’d have had the ability to get a clear overview on situations that most wouldn’t. I hope she’s happier and more settled now, nursing in itself is a great achievement. A whole family of medics and scientists.
I do agree being Neurodiverse is genetic , also I’d say it’s applicable to most exceptionally clever people and geniuses
We’re fortunate to have your insight and knowledge PMRpro , but I do wish you hadn’t succumbed to PMR in the first place. Selfishly we wouldn’t manage without you .
I’ll have a read through the Guardian , private testing seems to be the answer. It’s cruel to leave a child with only Melatonin surviving on 5 hours sleep, particularly when his mother is struggling too .
She is doing a Masters as a specialist nurse endoscopist now! What is infuriating is she had a shared care thing in place for medication from the local NHS via her GP practice. Now she is moving she must change practice as they have turned down her application to remain with them - she is moving 10 mins away! The new practice refuses to continue the NHS agreement, So she must pay for the medication herself. She can work without it but I doubt she'd manage the MSc course too. She'd got it under an old agreement just before it was rescinded. She'd not be able to afford it after the move - and since a lot of that is to provide a safety net for me in the future I've said I will pay. Price varies so she will shop around. So stupid - it means she is a valuable member of the NHS but they won't pay.
She’s obviously a very clever young woman and keen to continue learning. It’ll be fantastic expertise to have under her belt, more qualifications and more knowledge and opportunities.
Very disappointing the current GP practice won’t let her stay with them when she’ll be 10 minutes away.
Particularly when you consider she’ll almost never request a home visit.
They all seem to be tightening their belts on prescribing , a small part of me hopes the new surgery will change their mind in time . I’ve noticed mine have removed a medication and not added the replacement to my repeat .
It’s unfair for you to have to pay but she’ll need it to finish this Masters as the stress begins. I’m truly hoping the new practice changes their mind. I know it’s not cheap by any means.
You’re quite correct she’s a valuable member of the NHS and yet they are refusing to pay for her vital treatment.
It’s disgusting actually, makes me angry.
Since GP practices became like businesses, like hospital trusts this is the result.
Sorry PMRpro , i hope they have a change of heart. Perhaps they’d listen to you next time you visit, although they’re advising us to try stay away from GP surgeries and hospitals in the UK at present. I don’t understand why she can’t stay at the current GP practice, it’s ridiculous.
I’m sorry your dear wife was in a care home for all those years, dreadfully painful for you both. Alzheimer’s is wicked. It’s tragic and unfair.
My brother is younger than me, he unfortunately had the Huntington’s disease gene, something we both always feared. He was a keen cyclist and climber, his magical place was the Lake District, he climbed every peak , loved Wainwright.
He hasn’t got a bad bone in his body, animals are drawn to him, they sense he’s safe . When we were children and dogs roamed around, they’d cross the road to join him.
It’s incredibly painful to see those we love suffering, hard work taking them out , visiting, feeding them whilst still trying to treat them the same as always, for their sake. With dignity and respect.
It certainly takes its toll . I don’t think mum ever forgave herself, but it was kept hidden in families, she wasn’t told .
Living apart from your wife , your life companion and the changes in her must have been dreadful. I know the toll it takes on our mental health as well as physically.
Thank you for your understanding.
I have to have one more meeting concerning how my mum was treated, it can’t be left .
We need respite , you’re right. Recharge and then start again.
Wishing you well and some lovely life experiences on this journey.
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