anyone else feel exhaustion when reducing prednisone?

[nallufl24]

I went from 40 mg pred to 35 a week ago and am just exhausted. I feel it is unhealthy to lay around all day but I don’t want to do anything.

[DorsetLady PMRGCAuk volunteer]

Just be careful it’s not the start of a flare…some can manage that reduction, many can’t. It’s a drop of 12.5% - more than recommendation of 10%.

Have a look at this post so you can decide if it’s steroid withdrawal or flare - healthunlocked.com/pmrgcauk...

Personally I would consider going up to 37.5mg and see how you feel -and you need to discuss further reductions with doctor - many of the tapers in the guidelines are too rapid.

[nallufl24 in reply to DorsetLady]

Thanks. I just don’t understand why my rheumatologist continually wants me to reduce pred so drastically. I want to get off of it too but this isn’t helping me. I am going to start Actemra infusions in two weeks and he wants me to drop 5 mg every week. I don’t know if that is wise

[DorsetLady PMRGCAuk volunteer in reply to nallufl24]

You may be able to drop quicker when you are actually on TCZ, but not before.

[SheffieldJane in reply to nallufl24]

Honestly, my fairly rapid taper once I was on Tocilizumab was painless. Have they explained their thinking to you? Surely much easier if you are not in a flare? 40 mgs is a significant dose, be kind to yourself and challenge the doctor.

[nallufl24 in reply to SheffieldJane]

No one really explains anything to me. They tell you not to go on internet but that’s the only way I find out anything.

[SheffieldJane in reply to nallufl24]

You come here. We are not the Internet. We are fellow patients with lots of experience and knowledge shared from medical research papers. You are in the right place. Your relationship with your doctors should be a two way street.

[nallufl24 in reply to SheffieldJane]

Thank you. Love to all of you

[SheffieldJane in reply to nallufl24]

You too and happy Christmas! X

[PMRpro Ambassador in reply to SheffieldJane]

Mmmm - but we are a bit unusual! We are the internet - and even worse, we are social media as far as they are concerned! Some forums would make your hair stand on end!

[SheffieldJane in reply to PMRpro]

I wouldn’t last 5 minutes on trolling, misinformation, selling snake oil type websites. I have a good nose for the dodgey . I have never felt that this site sought to do anything other than inform and support 5 years, still here. 😇. It is actually an amazing achievement, when you think about it.

[DorsetLady PMRGCAuk volunteer in reply to nallufl24]

Not Dr Google, but as SheffieldJane says, there is a lot of good information on here, from all sources, and only with the aim of helping new - or not so new patients.We aren't selling anything nor giving you the sensational "bits".

[PMRpro Ambassador in reply to DorsetLady]

Despite some people having a good old go ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

…ah but we soon suss them out🤣

[PMRpro Ambassador in reply to DorsetLady]

Some sooner than others

[PMRpro Ambassador in reply to nallufl24]

They are terrified of the long term effects of pred - which I suspect are nothing like as bad as they think! It will be another thing reducing that quickly once you are on the TCZ - at the moment if you really do have GCA he is playing with fire because the pred is the only thing standing between you and visual problems.

I'm really not convinced you can reduce at 5mg per WEEK once on TCZ, even it takes a bit of time to work. In the clinical trials they took at least 26 weeks to taper the pred dose - which suggests they didn't aim for 5mg every week! But if I were about to start TCZ, I wouldn;t be forcing reductions like that yet.

[Grammy80 in reply to PMRpro]

True words~! When I was on 40mg I took Actemra for three weeks before reducing the pred.💖

[Nextoneplease]

Yes, nallufl24, I do feel exhausted when reducing - in fact it’s one of my main symptoms. I’m currently on 12.5mg and it’s taken me well over three months to get to this from 15…..

I understand you’ve dropped 12.5%, which is a little bit above the 10% recommendation. I hope the exhaustion abates soon, but if not, I think you should discuss the situation with your clinician.

I must add that the dark, cold weather, the new Covid strain etc aren’t helping me at present! I wonder if you have underlying issues like this too, that you might normally manage better if you weren’t trying to reduce prednisone?

Wishing you all the best

Nextoneplease xx

[SnazzyD]

I certainly felt every drop and 5mg from 40mg was no exception. I used to spend much of the time lying down for a few days, though I wasn’t exactly lively in between; Pred floored me at the higher doses.

[Broseley]

I was told to drop from 40mg to 30 which I did with no problems whatsoever. Maybe I'm unusual!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Some people can without a problem…but I think it depends on how well your illness was controlled on the dose you are reducing from and that varies from person to person.

How the initial dose got to grips with it depending on severity of illness pre diagnosis,how long on initial dose, etc…..lots of variables.

Tapering plan are usually based on best case scenario….works for some, but not all.

[PMR2011]

It took 5-6 doses of Actemra to “kick in”. Then I started tapering. 5 mg at a time til I got to 10mg then much slower! As others have said, it seems the taper should happen after you’re on the Actemra. Good thing you’re arming yourself with information!

[PMRpro Ambassador in reply to PMR2011]

How often were the 5mg reductions?

[PMR2011 in reply to PMRpro]

Two week intervals. Though they did leave it to me to slow it if needed.

[PMRpro Ambassador in reply to PMR2011]

That sounds reasonable enough as a start - but weekly seems far too fast to me.

[cmToddy]

I suffered fatigue and exhaustion after tapering in the past. I now do the slow approach. I suggest following Dorset Lady’s tapering plan. I now reduce 1mg every five weeks but am now in 4mg. Try 37.5 as recommended by another even 39 if necessary. Hope you feel brighter soon, I know the feeling and it is dreadful but an increase should do it.

[Sharitone]

I have just started Actemra/TCZ injections. I am just managing on 14 mg pred, and have been tole to reduce it by just 1mg per month, which I am happy with. Slow, but better than having to go back up again!I'm always dog-tired on pred!