End of Pred Treatment Programme

[Uisce58]

Hello- I hope to end my Pred Treatment Programme on 1st December. I'm a bit scared but also hopeful that I will not have another flare. Question: how long does it take for the steroids to go out of your system/ body?

Thanks in advance.

[SnazzyD]

Hello, it takes 2-4 hours for the blood level of your dose to be halved. So after a day you’re clear. However, the effect of all that Pred can take longer and who knows what tissues or system in the body do after that. Regards flaring, that will depend on the level of autoimmune activity, if any, is left. What dose are you on now? I know that fear. It took me a year to drop from 1mg to zero.

[Exflex in reply to SnazzyD]

Can I ask about your tapering to get from 1 to 0. I have a love hate relationship with Pred, I’m on 2mg now and it’s taken 3 months to reduce from 2.5mg (I felt dizzy when I first tried).

[SnazzyD in reply to Exflex]

what do you want to know? The lower I got the slower I got because of poor adrenal function which is what seems to dog the reductions at these levels when PMR/GCA isn’t flaring. 14 weeks was the longest for one drop. One thing I found I did have to do, was slow life down hugely in order to stop feeling ill from my cortisol output not being able to respond to my day.

[Exflex in reply to SnazzyD]

Thanks for the reply. The lower slower aspect was at the heart of my enquiry. How did you taper over 12 months, was there a plan you followed or just ad hoc?

As I mentioned earlier, I had dizzy spells when I transitioned from 2.5 to 2mg, but when I went back to 2.5mg and I felt ok again. My own diy diagnosis would say it’s adrenal related, which makes sense since 0.5mg drop represented 20% change. My GP said it could have been coincidental and the dizzy spells could be a viral infection. Quite possibly, but the upward 0.5mg made a hell of a difference in my well being.

I’m slightly apprehensive with the next drop to 1.5mg, maybe I’ll slow it 1.75, and/or use DorsetLady’s 7 week tapering plan.

[PMRpro Ambassador]

The drug itself is out of your system in a day or so. The effects may take rather longer to change though.

Usually you can say that if you get through 6 months of no pred without a return of syptoms you are probably OK.

[DorsetLady PMRGCAuk volunteer]

Just be aware that although the Pred will be out of your system relatively quickly, it may take anything up to a year for your adrenals and the rest of your system to return to normal.

[Uisce58 in reply to DorsetLady]

My sincere thanks to everyone for your replies - I am very frightened to be off my "crutch"- Pred- and this is from someone who was terrified of being on Pred in the first place as I never had to take any medication. I am frightened...sorry for being emotional...

[PMRpro Ambassador in reply to Uisce58]

Of course you are - just be watchful and don't deny it if any symptoms start to surface and get worse. It will be perfectly normal to feel some aches and pains as your body gets back to normal which as DL says, can take up to a year. But they should improve with time, not get worse.

[DorsetLady PMRGCAuk volunteer in reply to Uisce58]

Quite natural…..but as jinasc recommends maybe request cortisol test if you feel particularly emotional. You will get odd aches and pains as well, don’t always assume it’s a flare, but just be mindful that it could be.

Enjoy getting your life back…..

[Lonsdalelass in reply to Uisce58]

I felt just the same.

[jinasc]

I would be asking for a short cortisol test from your GP - just to make sure your adrenal glands are up and running.

Then remember to carry your steroid warning card for at least 1 year as it can take that time for them to be fully functional.

[piglette]

The truth is, it is the PMR that decides when you end your steroid treatment not you or your doctor. If you really are able to carry on without steroids they reckon it takes a year or so to clear the steroid effect out of the body.

[Jayveedee]

I was terrified when my rheumatologist told me to come off Prednisolone but tapered and gradually stopped completely in July. I did have some hip and shoulder pain but cortisone injections and painkillers helped. I actually started to feel more like my old self almost straight away and my energy returned. Like you I was expecting the worst and was pleasantly surprised when it didn’t happen, I hope the same happens for you. Good luck! X

[Sandradsn]

I've been off pred for 18 months.I definitely had niggles at first but now I'm not getting any aching muscles and feel like I'm over it.Covid knocked me for six in March and that's taken a while to get over.

I was worried that having family stress and worry would bring back pmr but so far so good!

[Carolsos]

Just take it very slowly and if side effects are too much put it back up again. Give yourself enough time between tapering. Can you ring the doctor to get a tapering decrease routine? Good luck

[DorsetLady PMRGCAuk volunteer in reply to Carolsos]

“Can you ring the doctor to get a tapering decrease routine?”

Nice thought, but highly unlikely…….😳 tried and tested slower tapering plans on here for anyone to access…