Help with tapering

[Crommie]

Down to 10mg prednisolone today for 8 weeks. Started on 40mg inApril this year. Will my immune system start to recover. Had both covid AZ vaccines and then diagnosed with GCA the day after my 14 days were up after the second one.

[DorsetLady PMRGCAuk volunteer]

Hi,

40mg to 10mg within 4 months is quite quick…..has it gone okay or have you had any issues?

Even if you’ve gone okay so far, you need to slow down from 10mg down…..usual recommendation is 1mg every 4-8 weeks (depending on your illness).

You need to understand that on higher dose for GCA it is relatively easy to reduce quickly as you have done because there is plenty of Pred sloshing around your system.

However as you get lower there is much less medication to control daily production of inflammatory substances…and once you get to around 7.5mg your adrenal glands (which have been resting) need to start working again..,tat sometimes causes it’s own issues.

All the time you are on steroid, your immune system is compromised, how much depends on dose, but it will recover in time…

Have a look at this post -

healthunlocked.com/pmrgcauk...

and also the FAQs -

healthunlocked.com/pmrgcauk...

[Crommie in reply to DorsetLady]

I have been following my Consultant’s and gp instructions all the while. Only just down to 10mg today (for 8 weeks) then by 1mg every 8 weeks. So tapering will be slow. Only problem I have had is 3 hours of being tired qfter the steroids. Sleeping better and not overeating. Worried about my immune system & inefficiency of vaccine. Thank you for replying.

[PMRpro Ambassador in reply to Crommie]

Some people have found taking their pred before pred means they sleep through the post-pred fatigue.

[Crommie in reply to PMRpro]

Also a lot of people cannot sleep if they take prednisolone. I need my sleep.!!

[PMRpro Ambassador in reply to Crommie]

But you only find out when you try. Lots of people don't have a problem sleeping.

[DorsetLady PMRGCAuk volunteer in reply to Crommie]

Yes but you need the Pred more, especially if you have GCA….you can recover from sleeplessness, you can’t recover from sight loss…take my word for it!

[Crommie]

Will ask my consultant. He definitely wants me to take the prednisolone with breakfast. Thank you for info.

[Miserypants]

I have GCA/PMR. Have always taken my pred at night. Apart from when I was on a high dose I rarely have a bad nights sleep.Started on 40mg in 2016 and now on 9. Can only drop 0.5 at a time.

[Denbo51]

I'm down to 3mg now and feeling good so far .yes immune Wilson it's self out good luck i only stay on for 4 weeks then drop down a 1mg 8 weeks seems a long time on same mg try 4 weeks

[Crommie in reply to Denbo51]

Cannot wait for the 8 weeks on 10mg to be over. Double jabbed for COVID then 13 days after the second one diagnosed with GCA!! When down to 9 will feel more positive. Thank you for positive reply. x

[DorsetLady PMRGCAuk volunteer in reply to Denbo51]

8 weeks may seem a long time, but if it works and stops flares , it's not in the great scheme of things.

If Crommie has been told to stay there for 8 weeks, then you have to trust her doctor's advice.

[Crommie in reply to DorsetLady]

No intention of dropping down to 4 weeks DorsetLady! All the tapering 9 down to 1 are at 8 weeks. Doing what consultant has told me to do.

[PMRpro Ambassador in reply to Crommie]

Very sensible person - would there were more like them!

[DorsetLady PMRGCAuk volunteer in reply to Crommie]

Good, nice to hear.