Flare after respiratory virus, increasing prednisone

[Renesch]

I stress on 20mg of prednisone 8 months ago and have reduced to 9mg daily. 6 weeks ago I caught a virus (not covid) my husband had it first. He recovered I didn't. I was advised by gp to increase prednisone for 5 days to help with the cough and this worked but it left me so so tired. I could barely make it to the kitchen to get a coffee. Gp did blood tests, no increase in inflammation showed. She suggested I stay on 9mg for a month then go back to reducing again. It is now 3 weeks later, although the tiredness is much better I am getting more and more pain, this is increasing I think I want to increase the prednisone to get on to of it but not sure by how much or for how long. It feels like a backwards step but I don't want to end up like I was when first doagnosed.

Can anyone suggest how much I should increase by, for how long and how quickly I can reduce back to 9mg. Thank you.

[DorsetLady PMRGCAuk volunteer]

Usual recommendation for a flare is increase by 5mg over the dose you last felt alright - so maybe up to 15mg in your case. Stay there for 5-10 days depending how much of a flare it is - if you catch it quickly you may only need 5-6 days. Then drop back down to just about the dose that caused the issue....so 10mg. Stay there until you are sure all okay, then restart your tapering.

But have to say, do wonder if is all PMR... I guess you’ll have to see. Before you increase Pred as detailed above, it might be worth trying pain killers first for a few days to see if they help.

[Renesch in reply to DorsetLady]

Many thanks. Have tried pain killers, didn't help at all. It is 3am here in New Zealand and I can't sleep because of the pain and stiffness. Will increase in morning as I feel I'm headed back to our diagnosis level. So depressing I was doing well with my reduction.

Thanks for the advise.

[DorsetLady PMRGCAuk volunteer in reply to Renesch]

It is depressing, but you must remember you have a serious systemic illness, and it doesn’t take much “outside stress “ to upset the apple cart.

Not your fault - just life with PMR! What you would have breezed through previously now causes an issue.

I’m sure you’ll soon get back on track..and remember you’re not reducing come what may to zero - you are trying to find the lowest dose to control your symptoms- and if something else joins the party you invariably need a bit more Pred to get through it.

If you’re still awake and read this, take your dose now.

[Renesch in reply to DorsetLady]

Thanks so much for your advice, I have taken an extra 11mg of prednisone (up to 15 from 9) for 3 days now and the pain has subsided immensely, maybe by 80%. I have achieved almost no pain in the past, do you think I should up the dose again? I really don't want to have to do the slow reduction again. Thank you in advance.

[DorsetLady PMRGCAuk volunteer in reply to Renesch]

I would give it another week on 15mg, obviously if it’s doesn’t give more relief then maybe 3-4 days at 20mg.....but hopefully that extra won’t be needed.

Once you get things back under control you won’t need to do the slow taper again.

You can step down from15 to 12.5 for a week, then to 10 for a month, then restart slower taper - 1mg every 4-8 weeks (or 0.5mg every month) whichever you’re happiest with.

If you need to go to 20mg then drop down to either 15mg for week and follow as before - or if you don’t feel confident add in a week at 17.5mg.

[Renesch in reply to DorsetLady]

Thank you. So I have been in 15 for 3 days another week will be 10 days, is that not too long to drop off quickly. I really value your advice. Thank you

[DorsetLady PMRGCAuk volunteer in reply to Renesch]

No it’s not - you’re not coming off Pred entirely you’re reducing it back down to previous level, or just above. It’s recommended practice, and happens all the time.

[Renesch in reply to DorsetLady]

Thank you

[PMRpro Ambassador in reply to Renesch]

Up to 2 weeks/14 days is said to be fine. But getting down to 10mg doesn't necessarily need a slow taper - the slow taper is to identify the right dose and if you are returning to a previous dose that was fine after a short high burst then you can reduce in big steps. Does that make sense?

[Renesch in reply to PMRpro]

Yes thank you, I guess I just feel a bit nervous because even when I reduce by 1mg I have to do the up down up down scenario for a few days or I don't cope too well.

[PMRpro Ambassador in reply to Renesch]

Then slow it right down using one of the slowed tapers we go on about here:

healthunlocked.com/pmrgcauk...

and make the step you do as small as possible - once you are down to 5mg a 1mg step down is a LOT but some people find 1mg at a time a lot anyway!

[PMRpro Ambassador in reply to Renesch]

The ideal time to take pred is at 2am! Even a bit of stress is enough to tickle the horrible side of PMR into life - you had a sick husband and you have been sick too - no wonder you feel awful.

[Renesch in reply to PMRpro]

Thank you. I have tried taking at night but I just don't sleep. I have been fine until now taking in morning, in fact felt almost normal for several months. Forgot how bad this is. Thank you for your support.

[PMRpro Ambassador]

Are you SURE it wasn't Covid? But Covid is by no means the only virus that causes post-viral syndrome,

And what did the GP tell you to take for the 5 days?

[Renesch in reply to PMRpro]

Hi thanks so much for your reply. Definitely not covid, I live in New Zealand and we have no community cases here, plus they gave me a test anyway which was negative. Gp put me up to 20mg for 5 days.

[PMRpro Ambassador in reply to Renesch]

Fair enough - though even PCR tests aren't 100%, the chances were small

I suspect a bit more for a bit longer was required - my daughter gets a taper from 40mg for her chest problems and the taper takes more than 5 days.

[Meggsy in reply to Renesch]

OH and I both had a virus last year that had us coughing day and night. GP prescribed 50 mgm pred for 5 days which helped. I just dropped back to my usual dose afterwards.

[Baileyw06]

I have taken CBD oil 7 mg for a year plus.

It has helped me . I take it before bed and it helps me to sleep better and not wake up in pain several times a night. I don’t have the fatigue I used to have. I was able to get to 6 mg of prednisone per day.

I use Charlotte’s Web which I researched and is 3rd party tested and they run several sales a year.Just be sure that you research any CBD oil to make sure it is 3rd party tested, so it comes from a safe company because it is not government regulated.