Can anyone please help or advise? Pred withdrawl symptoms.

[Norma1610]

Hello everyone,

I was diagnosed with PMR in May 2020 and from a high of 17.5mg pred, I was down to about 6.5mg about 7 weeks ago. Then I got a bit carried away and reduced (over a period of 10 days) to 5mg. I knew that around 7mg my body's own cortisol might not have kicked in but I completely forgot. Within a few days I developed the most awful nausea and (sorry) digestive problems at the other end as well. After a bit of faffing around with the paramedic at my GP surgery, I finally spoke to my GP who advised me to go back to 10mg of pred in an effort to get on top of the symptoms. I've now been taking 10mg for 8 days and although I feel a lot better (I'm probably about 75% to 80% there), I'm still not right. The nausea has lessened a lot but I still haven't settled down at the other end! Has this happened to anyone else? If so, how long did it take you to get back to normal? Also, what exactly have I done to myself? I'd be really grateful for any help or advice you can give me.

[SnazzyD]

Hello, You may have had some sort of tummy upset quite aside from anything else. What did the GP think? You may have also hit one of the symptoms of adrenal insufficiency. I don’t know how long it should take to feel ok again once back on 10mg but I’d hoped you would be. It might be worth telling your GP that all is not quite right still. It’s worth going on a much much slower taper from 10mg and even 0.5mg drops, especially under 7mg. It’s so tempting to speed through the last few mg but this where most people find that as well from the adrenal side it is also from the PMR side that a little Pred makes all the difference, even 0.5mg.

[Norma1610 in reply to SnazzyD]

Hello and thanks for replying. I don't think it was a tummy upset but who knows. And you're right, I was tempted to speed through the last few mg - I was feeling really well and got a bit carried away. I'll know better next time MY GP advised increasing the pred and also the lanzoprazole I also take to protect my tummy from the pred. Even at 5mg (nausea apart), I had no sense that there was a problem with the pmr, hence my rush to get the does down as low and as quickly as possible. I live and learn

[PMRpro Ambassador]

The symptoms you describe are typical of adrenal insufficiency but that might just be coincidence - I'm surprised it was so quick so soon. But an upset stomach can take some days to calm down.

And you've only had PMR for a year - there is no need to rush and especially not at this stage.

[Norma1610 in reply to PMRpro]

Thank you for your reply. It is really good to have folks on here to talk to. When I looked at the leaflet that came with my pred and checked the list of symptoms for steroid withdrawal, I had at least half of them. The problems started about 8 weeks ago and gradually got worse so I guess it didn't really happen so quickly. Also, upping my dose of pred has definitely made a difference so I think you're right re the adrenal insufficiency. And everyone is different, I'm sure some people would have been fully better by now and some might not have made as much progress as me. I just wondered if anyone knows exactly what has happened to my digestive system as a result of what I did. Is it inflamed for e.g.? I knew I was on the mend when I was able to clean my teeth without retching!

[PMRpro Ambassador in reply to Norma1610]

Only 1 in 5 patient get off pred by 1 year. That means 80% don't ...

[Norma1610 in reply to PMRpro]

Believe me, I'm now in no rush! The trouble is that people (no one on here) are very keen to say 'you must get off those nasty steroids'. After my experience, I will tell them in a short and forthright manner to mind their own business.

[PMRpro Ambassador in reply to Norma1610]

You are now down to a dose range that is about the same as the amount of corticosteroid you produce naturally and without which you would be dead. As you reduce, your body must take up the job again. And that takes time. Plus - 1mg less pred means you need the equivalent more of cortisol so you don't really get to less corticosteroid.