Anxiety when reducing Predisolon

[Mamamia21]

I am coming down from 3mg to 2.5mg slowly over 7 weeks and have felt anxious on several days. I feel as if my heart is beating faster and can feel nauseous with it. I have read that this may be down to my cortisol levels at this stage. I don't have any of the other symptoms of low cortisol. I do have a lot going on at the moment so could put it down to a little of that but I don't generally get worried about things so this is a little different.

Do I keep reducing and just monitor how I am feeling or go back up to 3mg to see if it settles or something else? Your advice is always welcome...

[DorsetLady PMRGCAuk volunteer]

I would stay put for now, by either putting a hold on taper by repeating current stage [how far into taper are you?] - or returning to 3mg. Probably the latter, and give the adrenals a change to catch up.

If the problem is purely adrenal related and you increase Pred, you are just putting off those feelings temporarily, and they will recur once you drop back down again.

If it’s a flare [which it doesn’t sound as if it is] then obviously that does need to be addressed in the usual way.

[Mamamia21 in reply to DorsetLady]

I'm week 5 of 7 towards 2.5mg... was thinking I would finish the taper and stick there for a month to see how I feel. I agree I think if I went back up I would just be putting off these feelings. I am doing so well I don't want to upset it all again. Don't think it is a flare to be honest.

[DorsetLady PMRGCAuk volunteer in reply to Mamamia21]

Might be worth going back to previous week and repeating a couple of times to see if that helps… then continue to end. As we always say, you can repeat each week/stage as many times as is required.

And agree stick at dose for a while after that. There really is no rush when you get as low as you are…

Good luck.

[PMRpro Ambassador in reply to Mamamia21]

At this dose slow down even further. There is no hurry and the slower you go, the more chance your body has to catch up.

[Saffronandblue in reply to DorsetLady]

I started 2om/g in January and then reduced by 5 m/g every two months. Now I’m down to 5m/g one day and 4 the next day just this last week.. How long do people think I should stay on this dose. I plan to talk to my GP this week

[DorsetLady PMRGCAuk volunteer in reply to Saffronandblue]

That’s a quick taper so I wouldn’t be in any rush for now.

Has it gone okay - if so you are one of the lucky ones- so maybe ease off a bit for now.

Advice in guidelines below 10mg is -1mg every 4-8 weeks…

[Saffronandblue in reply to DorsetLady]

Yes it’s gone fine . I’m doing lots of exercise golf, aqua aerobics, walking and spending time in spa pool. Thanks for your advice to slow down now. I’ll discuss this with my GP this week

[SnazzyD]

You don’t have to have all the symptoms of low cortisol to be suffering from it. I found if I had most of them, I was much closer to collapse than if I had a few. The weak wobblies and anxiety can come on when your body can’t deal with whatever is going on. Generally, if I couldn’t change the issue I might increase the dose by 0.5-1mg (last resort!) for a day or so, or stop reducing. Ideally, I did less in order to keep the dose the same because when you do increase for more than a one off, your adrenal axis is getting used to producing that amount again. Personally, I wouldn’t call 7 weeks slow. Under5mg I was doing something like 0.5mg per 8-14 weeks.

[Mamamia21 in reply to SnazzyD]

Thanks SnazzyD... you are probably right about the slowness... I've come right down from 10mg over 7 week reductions of .5 of a milligrame each time. Been on steriods since 2016 so feel I am doing really well for a change. Maybe you are right it is my body telling me that as I am so low I need to go even slower... Thanks for your advice... time to take heed!

[SnazzyD in reply to Mamamia21]

If only our life’s trials ran the same downward straight line graph that our reduction plans do!

[9lives]

I am exactly the same as you. On steroids since 2016 and now down to 1mg after many up n downs. Also the heartbeat thing and anxiety. I have been reducing . 5mg every 7 week and just got to 1mg in august. But am going to stay at 1mg for September I think. Its better to be slower than keep having to up the dosage especially when we are on so low a dose.

Thank you for posting this as it’s good to see how others are doing. And known we are not going totally crazy 🤪.

Normal people just don’t get it !!

I wish you luck with your reduction, slow and easy does it xx

I like you name( here I go again)🎼 sorry couldn’t resist 🤗

Carole

[Colleen1974 in reply to 9lives]

So true! Normal people don’t get it. After two years I’m down to 2mg and going to stay on this dose through the end of the year. Have a 3 week Med Cruise coming up then roll (fall) into the holidays. Will start a slow taper again in January.

[Mamamia21 in reply to 9lives]

Thanks Carole! Apt name for me definitely 😂. Yes I think I needed the reminder that its not a race... when I got to nearly 2.5mg my husband is saying "right just get off them"... even he does not understand... so plan to keep an eye on how I am feeling and be prepared to stay put for a while. Mind you staying at 2 would be better than 2.5 with all that tiny pill cutting but where I am is where I am 😊.

Yes it is nice to hear other are in the same position too.

[9lives]

yes good idea to stay at that dose. Enjoy your cruise. 🚢