Please can you guide me.

[Fredddie]

After being very poorly with suspected Coronavirus at the beginning of March my Dr advised me to increase dosage from 5mg to 10mg.

Last month I was down to 4mg and pains returned very similar to the onset before I was diagnosed. I have gradually increased and back up to 10mg today in hope that it will ease the pain. Did I increase too slowly?

Any advice as to where I went wrong would be much appreciated - I can only think I decreased to quickly after illness. How long should I stay at 10mg? How long will it take for 10mg to kick in? Should I go higher? I seem to have lost track of where I am and so disappointed with myself after doing so well. I need help to get back on track.

Thank you.

[SheffieldJane]

It is hardly your fault that you are in this situation. Patience is key though. You’ve been acutely ill and may need to go back to square one to get PMR under control again. I wonder if 15 mgs would do the trick? Then a very gradual taper down? Give it a chance to work. If you have indeed come through Covid 19 then your whole system has been severely compromised. You’ll need a lot of careful care. I hope you start to feel better soon.

[Fredddie in reply to SheffieldJane]

Thank you for your reply. I can’t remember how long it takes for Pred increase to work? Should I wait a couple of days or does it kick in within hours?

[SheffieldJane in reply to Fredddie]

It depends on the individual. It took me about 2 days, that doesn’t mean that it would a second time. I have heard that you can have a very different experience.

[Hidden]

Hi, I hope you are feeling better generally if not PMR wise. How long were you at 10mg and what was your reduction plan? Not more than a week straight back down. More than @7days and you do a full on taper of not more than 10% a month. I would have stayed at 5mg for at least 4 to 6 weeks or more. It's a funny dose anyway and you may well be flaring just from the extra physical and emotional stress.

The extra 10mg is usually noticeable for me properly by day2 or so, but everyone is different. It may be you need 6, 7 or 8mg after a week at 10mg so you may be better doing a slowish taper back...maybe 1mg every 2 weeks until you feel you have hit the lowest you can go without symptoms getting worse. 🌻

[Fredddie in reply to Hidden]

Thank you for your advice. I was on 10mg for a week. I went down to 7.5 3weeks then 5mg 3 weeks then 4mg.

[Hidden in reply to Fredddie]

I suspect you may be flaring. I would definitely have stopped at 5mg for a good few weeks. I have only been down to 6mg and was there for the best part of a year and then flared due to illness. It can happen anytime. 🙄

[Fredddie in reply to Hidden]

Thank you for your helpful reply.

[Gellybabie]

Hi, You are asking all the questions i have asked! I am so desperate to get off this med, i too have reduced and it didn't work for me. I’m learning after being in this excellent group , that its very individual and no quick fix and very much trial and error ! Going back and forth with dose of meds is the norm . Wishing you luck on finding what works for u x

[Hidden in reply to Gellybabie]

The more we yoyo the longer it takes...a pain isn't it. So slowly does it or I have found pmr always wins!

[DorsetLady PMRGCAuk volunteer in reply to Gellybabie]

“Going back and forth with dose of meds is the norm.” -

not necessarily if you are allowed, or decide yourself to taper sensibly - and that means slowly with little steps and not pushing it when you might have the odd niggle.

[PMRpro Ambassador in reply to Gellybabie]

It may be the norm with some doctors/patients - but the medical literature has warned against yoyoing the dose for years. Getting into a yoyo pattern is a disaster - everytime you go so far down you cause a flare it is likely to be more difficult to get under control. There is no known reason for it and since pred is not supposed to have an effect on the disease process it is a bit baffling. But it happens and not just with the odd patient.

And the approach we bang on about here means there is no need to get into that situation: reduce slowly, in small steps, and listen to your body. Don't ignore any signs of a flare just because you don't want to take a bit more pred.

[Fredddie in reply to PMRpro]

Thanks for reply. I just want to get the pain under control. I will follow your advice.

[Yellowbluebell in reply to Gellybabie]

Going back and forth with this drug is not reccomended. The exact opposite in fact. Your body doesnt like being messed about by yoyoing. This drug gives us back our lives so I for one wouldnt be that keen to get off it just to be able to say I did it!!. The norm for length of pmr is 5 plus years! YBB

[Fredddie in reply to Yellowbluebell]

Thanks for reply.

[Fredddie in reply to Gellybabie]

Thank you for your reply.

[Fredddie]

Thank you for your advice. Yep I feel like a yo-yo!

[PMRpro Ambassador in reply to Fredddie]

Hope you have seen the 3 replies immediately above yours ...

[PMRpro Ambassador]

Increasing slowly almost never works - if you flare add 5mg to the dose at which you flared for up to a week to 10 days. If that works you can drop back to the dose ABOVE where you flared. 4mg is obviously not enough - you aren't reducing to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. That sounds to be 5mg anyway.

But you have had a serious virus if it was Covid-19 and it can take a LONG time to recover, certainly weeks and sometimes months. It also seems to come in waves of symptoms over a long time. I would probably have also reduced as you did to 5mg but no further. If 5mg is enough, accept that gratefully and stay there for a couple of months at least before trying for 4mg again. It would also be better to just try 1/2mg at a time - 10% of your current dose. 5mg is a low dose - and forcing a reduction will only have you back where you started.

[Fredddie in reply to PMRpro]

Thanks for your good advice. It’s funny you mention waves of the virus because I experienced very mild symptoms again in the last week which could explain part of the flare up. I’m on 10mg will give it a few days if I’m still in pain should I increase to 15mg? I have also spoke with my dr and he is going to ring me Wednesday to see how I am. I explained I have great support from PMR forum and he was delighted with that.

[PMRpro Ambassador in reply to Fredddie]

theguardian.com/world/2020/...

This guy had it quite badly but I've heard others say it keeps coming back.

[Fredddie in reply to PMRpro]

Thank you it makes an interesting read and can relate to his symptoms.

[Purple-Owl in reply to PMRpro]

Very interesting. Thanks for the link. Many in the new range of coronavirus symptoms seem to be those of pmr. I suppose because coronavirus affects the immune system.

[PMRpro Ambassador in reply to Purple-Owl]

I was thinking that - how would we know!!! Except PMR doesn't affect the immune system, it's more the other way round. But flu causes PMR-type symptoms too. Or PMR causes flu-like symptoms - due to the immune system attacking the body tissues and damaging the cells.