Good morning all . It has been almost 3 weeks since I caught Covid and ended up in hospital. I’m almost feeling human again but much of it is a case of having to get on with it . I’ve lost loads of weight, have no energy and I’ve gone off my life saving cups of tea .
I upped my Prednisilone from 3mg to 10mg , with a boost of dexamethasone whilst in hospital.
I know I’m not well enough to reduce from 10mg yet but would be grateful for any advice on getting the dose back down quickly when ready . I really don’t want to do a slow taper , but will if you think that best . I’m happy to get to 5mg for now . Best wishes all xx
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Greensleeves
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I'm sorry I'm no expert on a taper after being ill just wanted to ssy I'm glad you're on the mend, even if it's slow.
I'm having my morning cup of tea and was just thinking it tasted good today (usually things taste rubbish for me with pred). I hope that comes back for you quickly! It's the little things isn't it.
Don't reduce at all till you feel 'much' better. What are a few grams of pred in the long run? You've been through one of the most dangerous illnesses of our time - celebrate that by spoiling yourself. Have you any espresso cups? Try sipping a cup of your favourite tea through one of those - taking it slowly may bring back the "life saving" feeling.
Hugs and "congratulations" - you made it. 👏👏💥💐💐🍀🍀🍀
Thank you so much Constance , I’ll sit tight and wait .
Feeling much better is some way off yet .
I’m not a patient person and do like to have a plan . I’ve been taking Prednisilone for so long now , and to be honest I think the fact I was dragging myself along on 3mg was silly . I do have espresso cups , I’ll try that . Hugs to you too ❤️😊🤗
"Having a plan" with PMR is almost impossible. We are all sooo different. The most difficult thing to get your head round is "acceptance" - your life is not as you'd planned it. PMR is a pesky illness, but it isn't life threatening - there definitely is a light at the end of the tunnel.
Thank you CB , I loved that first morning cuppa . I didn’t lose my sense of taste or smell , but just can’t drink tea anymore. Hopefully it comes back because yes it is the little things . I always said I couldn’t live without tea . Take care
Hi Greensleeves. So pleased to know that you're feeling somewhat better. It may take some time to feel more like your usual self and you shouldn't try to hurry that. One step at a time with lots of rest.Attempting to reduce 'quickly' from 10mg is really not a good idea. You've got this far: don't undo the good work that has been done. Advice on tapering will be coming along. Take care.
How dreadful for you! You most certainly need lots of TLC now. I'm sure your family will be supporting you through your recovery even though that may be remotely. I agree- the NHS with its dedicated doctors and nurses working so very hard is a wonderful thing. Take care. Before we know it the Spring will be here 🌼🌹🌸🐥.
Although I don't know you personally, I'm genuinely so happy to hear that as one of 'our gang' you've managed to overcome covid-19 and are now recovering safe at home. Congratulations. I'm most definitely not one of the medical experts here but one of the things I have learnt, is that in all things to do with PMR/GCA.....slow and gentle is best!
Good luck with your continuing recovery Greensleeves.
Hi Kendrew thank you for your kind words it means a lot .
I will take it slowly , my poor little body has had quite a shock .
I can’t quite believe I’ve come out the other side . I feel genuinely scared for anyone going through it , it’s HORRENDOUS , and yet some people get a mild case and bounce back. I think long term steroids and PMR caused it to hit hard , every day it brought something new .
If it wasn’t terrible earache it was vomiting or a very sore throat and all along in the background you’re struggling to breathe and your heart is doing summersaults . It’s vile I hope everyone gets vaccinated as soon as possible.
me too, so glad to hear you are recovering and no idea re the taper. The usual "rule" I think is if you raise for two weeks you can do a fast taper and at MOST a month..after that the slow taper, so though I do not know what I am talking about here I'd guess take it slow? but if you try to taper back to 5mg faster, only when you are feeling better, and it works..then it works for you. Funny about the tea though. I do so know what you mean by life saving!
When l was on Chemo that’s all l longed for was a decent Cuppa Tea - the Registrar on the Ward said if he had a £1 for every patient that said that he’d be a rich man! 😂
Your grandparents might have seeded an early - but harmless - addiction. I remember being given coffee, my mother's favourite drink , in milk, when I was very small and been with me for life though it now has to be decaff, sadly.
So glad you're recovering, take it easy and be kind to yourself, you deserve it.
Just a thought - could your going off tea be because your taste/smell were affected by Covid?
I had measles very badly as a child and was given Lucozade to "build me up" - it certainly built me up, I'm sure that was the cause of my weight problems all my life. But mint icrcream - now that I could join you on!!!
That’s good you’re feeling better, it goes the other way for so many. What I will say as a long hauler after a Covid like illness with all the trimmings in March is that this is very early days. I was fairly rubbish for 7 months with relapses every few weeks. Be ready for bumps in the road while hoping that you are one who pops out the other side like plenty of others.
If it was me I would not be doing a quick reduction because you don’t know what has happened to your adrenal function in the three weeks+. Your body is still dealing with the aftermath so make it as easy as possible. Plus, if you get poor adrenal function you have no idea if symptoms are long Covid or adrenals if you get the non-specific malaise etc that is common to both.
The other thing is that you are only three weeks in and Covid is known to be involving Interleukin6 which is also our nemesis. Long Covid has been thought to be triggering of inflammatory substances in response to either shedding of old viral material or an immune system firing on its own troops (sound familiar?) long after the virus has shipped out. Therefore I’d not be running from the folds of Pred too readily by reducing too fast.
I’m so sorry you had it back in March and you’ve got long Covid . It can go on and on .
I enjoyed reading your reply .
I’ll read it again and return to it after looking up Interleukin6 .
I know I’m not out of the woods yet . I can feel it .
Do you know one of the doctors at the hospital told me whoever was responsible for Covid are very wicked people ! I wasn’t well enough to expand but they said they’d got patients who it was affecting neurologically and giving them strokes . Scary stuff whatever it is .
I don’t think my adrenals had picked up pre Covid . I was a very silly woman with hindsight. I obviously still am if I’m asking for quick routes back to 5mg at this stage .
I hope you feel much better sooner Snazzy . Big hugs to you x
Well done for coming out the other side of this horrid virus.There was an article on one of these threads recently “Sick day rules for Covid and other illnesses - increasing Pred short term” I kept a copy but can’t find out how to add it here. Sorry. If you search the threads I am sure you will find it - or someone more technologically equipped will be able to!!
Oh no - no tea? Woe, thrice woe! I just can't imagine it - she says, grabbing the tea next to her - but OH gave up tea some months ago, must be the taste there too.
Wonderful you have come out the other side but there is probably a bit to being out of the tunnel and into the light. Snazzy has already said everything I would have - so I'll just say get properly well very soon.
Hi Greensleeves, so glad to hear you are on the mend, what a frightening experience. I hope everyone else is fine as well. I suspect that how quickly one can reduce the steroids following a significant illness will be different for each person.
The first story I've heard of someone with PRM who got Covid and ended up in hospital had an encouraging ending. The patient was put on 10mg for a couple of weeks, up from 6mg, and as soon as he recovered from Covid, he was back to 6mg with no associated problems. I am sure that the duration of the higher dose will play a role as well as the age and severity of the infection (this patient was in his 70s I think). I do wish you to regain your strength an recover as quickly as possible. You were at 3mg before, you will get there again. Vx
I can't remember his hame, but you could be right. He is a Londoner and I attended one of the meetings where he talked about it. He was looking well for someone who recovered for Covid at his age.
Hi Violet , thank you, it is frightening. The gentleman did marvellously well . I think I’ll stay at 10mg for now whilst still having strange symptoms and recovering.
At least I’ll get back down to 3mg this year some time.
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