sorry to be a nuisance

[Greensleeves]

Hello my friends,

I increased to 20mg Pred , as advised by Sick day rules and Covid doctor , throughout the acute phase until i tested negative.and for a couple of days afterwards.

So it’s been just short of 14 days.

I can’t go back down to 8mg as planned as I’m wiped out and know Adrenal function deficiency is at play.

I am seeing a GP in the morning for a taper plan and MH support after losing my Mum .

Four/Five daily panic attacks isn’t helping the situation.

Could you advise please, i take gastric coated Pred and Omeprazole as I have gastritis. What is the best time of day to take the Pred .

I have been taking them before bed for several years now but have read midnight isn’t a good time. Would you advise I go back to mornings. Thank you in advance. x

[PMRpro Ambassador]

With enteric coated pred taking them before bed isn't a problem. What is important is that the level of pred in the body at midnight is as low as possible. Enteric coated pred does not break down at all in the stomach, it passes through because of the coating and only starts to break down in the lower GI tract which takes at least 4 hours. If you have taken it as late as possoble before bed - that won't happen until well after midnight and the peak will be achieves in the early hours, similar to the natural process. Unless you go to bed about 7pm!

[Greensleeves in reply to PMRpro]

Thank you PMRpro , so taking at midnight is fine . It should start kicking in by 4am .

I took 10mg last night, 2 mg early this morning. I’ve felt so exhausted and strange , I took a further 15mg at 3pm .

I must seem such a fool.

I have a GP appointment at 9am and a dental appointment at 2pm tomorrow.

I don’t know how I’ll manage, I really don’t want to have to start again . It’s never ending. I don’t expect to ever be off Pred but don’t want this .

I take Omeprazole in the morning .

Thank you so much for responding at night . Im not usually this stupid .

Take care xx

[PMRpro Ambassador in reply to Greensleeves]

I think you are being far too optimisitic about how long it takes to recover from Covid, especially when you have an autoimmune disorder. Covid clobbers your immune system which is already deranged and so it will take time to recover fully. And I suspect the effort of a GP appointment in the morning and a dental one in the afternoon is going to too much. I would cancel the dental one - you NEED the GP one, not convinced you need the dentist yet.

[Greensleeves in reply to PMRpro]

Yes you’re right , my immune system has had a bashing with the Covid booster, flu jab ,Covid and the MAB Iv infusion . I read that negates the booster but stays in the body for 90 days .

My husband is absolutely fine and full of beans .

I will cancel the dental appointment, I’ve had a dental infection too .

I’ll see the GP , I’m dreading them referring me to rheumatology.

I possibly wouldn’t have been on Pred for so long if the rheumatologist hadn’t told me to stay on 5mg for maintenance.

The only steroid sparer I’d consider is the one you take PMRpro .

Thank you for your welcome advice and input. You certainly help us feel a level of comfort despite your own trials .

Take care xx

[PMRpro Ambassador in reply to Greensleeves]

If I was fine on 5mg without it - I wouldn't be on it! It is heavy duty stuff and also has potential adverse effects, I felt fine on pred even at 15+mg but the dose I needed was slowly creeping up so I agreed with the rheumy to try it. He doesn't expect me to get below 5mg so won't bang on about it. I'm definitely feeling the effects of adrenals on holiday so I won;t be pushing it!!!

[Greensleeves in reply to PMRpro]

I agree PMRpro, it’s heavy duty , not something we would want to take unless it was essential . I’ve always felt fine on Pred too , I’ve felt normal, as i felt pre PMR. Unfortunately we know it isn’t great at those high levels, but there are times we have little choice.

Although quality of life is important too .

The steroid sparer seems to be doing a good job helping with reduction . I’d only take that one, but really don’t want to add anything else.

5mg now would be a great sense of relief,

Holidays are a double edged sword, good for the soul , bad for the adrenals , I’ve needed a week in bed after every holiday.

I hope you have a good rest and take it easy while you recover after your holiday.

Your adrenals are doing fantastically well all things considered, that’s a real positive from this .

Thank you lovely PMRpro , you are so appreciated.

Take care and feel well, don’t worry about a little more if necessary for now.

It’s like going around in circles chasing our tales at times .

You’ll get to a good lower dose in time i know you will.

xx

[DorsetLady PMRGCAuk volunteer]

How about dropping down to 10mg…staying there for a few weeks.. and then [providing you feel a bit better] restart tapering -slowly and only 0.5mg a time.

PMRpro has replied on timing of tablets etc.

[Greensleeves in reply to DorsetLady]

Hi DL ,

Thanks so much for responding, I have tried 10mg for 2 nights and felt dreadful the following morning , couldn’t focus, exhausted, breathless , no strength to lift a kettle. Ready to sleep and do nothing more.

There may be an element of the Covid still at play of course.

Do you think it worth persevering. I’m completely paranoid about an Adrenal crisis , I had it in 2021 .

I just need some energy .

It will really hurt to have to start again.

Thank you for your advice and insight. xx

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

Really don’t know tbh….but you do need to discuss wit your GP tomorrow…

[Greensleeves in reply to DorsetLady]

I will talk to her in the morning DL , she’s a nice young girl.

I do have to remember this might be the aftermath of Covid or recovery .

I was in hospital with the first bout and on IV Dexamethasone.

Felt great when I recovered, but then I suppose anyone would on that medication.

Thank you so much lovely lady . xx

[Greensleeves in reply to Greensleeves]

GP was super , she advised

17.5 mg one week

15mg one week

12.5 one week

Do my own slow taper once at 10mg , she’s also prescribed Fluoxetine for panic attacks.

I’ll consider this one as I really don’t want to add more medication.

It would no doubt be helpful, but something else to wean off in the future.

Thank you for your help and welcome advice , you golden souls . Now going for another nap . xx

[Greensleeves in reply to Greensleeves]

Not feeling at all great with the GP’s taper schedule from 20mg for Covid down to 10mg in 3 weeks.

Of course there could still be the initial Covid fallout, but my extreme fatigue and gastric discomfort is similar to the starting of an Adrenal crisis when I had Covid in 2020 .

For me personally it’s too fast , similar to an Asthma Pred reduction.

I don’t know if i should stay at each decrease for longer, perhaps a month rather than a week, or even do what I don’t want to have to do , …a slow taper down.

So sorry to be a nuisance, I have more trust and faith in you lovely people who’ve had or are experiencing PMR yourselves. xx

[PMRpro Ambassador in reply to Greensleeves]

You shouldn't have to worry about an adrenal crisis at well above 10mg. She might well have been better with a faster drop - to 15 and then 10. As it is you have been on a high dose longer than you probably needed. Slowing it as much as you are suggesting IS a slow taper,

[Greensleeves in reply to PMRpro]

Thanks so much PMRpro , the voice of reason.

I think I’ll try the faster drop from 15mg to 10mg , I’ll know soon enough how it’s going and don’t expect it to be easy , it never is .

It was the worsening fatigue and nausea that bothered me.

I wouldn’t have taken the 20mg for that length of time normally, it was the Covid doctors instructions.

We don’t know the side effects from the IV antiviral infusion either. Apparently that stays in the body for 90 day’s seeking spike proteins , they’re hoping to use it as a cancer treatment in the future.

There isn’t enough knowledge on steroid use , we can’t expect it really , they aren’t rheumatologists .

I’m also taking antihistamines and Famatodine to dampen the immune response after Covid.

It lasted 2.5 years last time .

I’m going to look into Mast cell for Long Covid.

Thank you for your advice and patience, have a good weekend. xx

[PMRpro Ambassador in reply to Greensleeves]

Don't hesitate to seek medical advice if you feel really ill though.

[Greensleeves in reply to PMRpro]

I won’t PMRpro , don’t worry. I’ve picked up a little already .

Our minds are strong when we go down the stress rabbit hole .

There’s also the grief and post viral stuff going on too .

I suppose we’re extremely far removed from normalcy during these times.

Take care xx

[PMRpro Ambassador in reply to Greensleeves]

I know it is easy to say but try to relax about it all - and that in itself should make it better.

[Greensleeves in reply to PMRpro]

I’m losing myself in a good book, helps unwanted thoughts and relaxation .

It definitely does help.

Thanks you PMpro , hope you can relax too . Take care xx

[PMRpro Ambassador in reply to Greensleeves]

Rugby tonight - not that relaxing though now it is only for the game, not who wins, my teams are out ...

[Greensleeves in reply to PMRpro]

Ah , enjoy the game PMRpro , of course your teams are out now, what a shame.

Never mind.

Pick a winner.

It’ll be a cagey one tonight, enjoy it xx

[HeronNS in reply to Greensleeves]

I have a couple of people in my life who've had covid and are experiencing fatigue. My understanding with covid and its after effects is you must try not to overdo things physically. And it's possible this means doing practically nothing for a while, and if we think pacing with PMR is difficult, with long covid symptoms it's even more important even when you feel a bit better. Pred may make you feel better but if it's not directed at actual PMR/GCA symptoms the higher dose may be counter-productive, at least once the acute high inflammation of covid is over. If you can just accept that you really can't do much just now, only the bare essentials, give yourself permission to really do nothing, except keeping hydrated, etc.

I sometimes say to PMR people who find it hard to deal with the fact that they look well, but are really not their old energetic selves, that if they'd broken a leg no one would be expecting them to be back to normal overnight just because they'd taken a pill. With covid I think you have to behave more like having a broken leg in traction. Tiresome, but should lead to better healing in the end. 🍀

[Greensleeves in reply to HeronNS]

Thank you Heron , you’re right, like PMR, the post viral feeling of Covid , is very much like acute PMR . Invisible but can feel extremely uncomfortable and exhausting.

I was concerned with nausea and gastric issues , they’ve settled now.

I understand the Pred would be counterproductive , post acute infection for Covid . I was worrying about adrenal crisis, I had that with the first injection.

Feel comforted now, isn’t it awful to feel guilty for feeling unwell.

But blow the house work.

Sleeping and as long as i can shower, I’ll recover well.

Thank you for responding.

Have a lovely evening xx