Fatigue/depression/anxiety with pred tapering

[emmamom]

I started on 40mg prednisone a day in April 2021. I am down to 8 mg a day and am so so fatigued, anxious and depressed--like I never have been before. Has anyone else had this happen with tapering? Any suggestions of how to overcome the symptoms? Do I need to go back up to a dose where I don't have these symptoms and then do a slower taper? I am worried my adrenal glands aren't working any more.

[DorsetLady PMRGCAuk volunteer]

Would suggest it’s related to your adrenals -you are at the level of Pred when the my need to start working again. Have a look at the attached link -gives lots of info -

healthunlocked.com/pmrgcauk...

You probably don’t need to increase, but you do need to make your tapering much slower to give your adrenals a chance to reawaken.

[piglette]

I had dreadful fatigue due to my adrenals. I hung around on the same dose for several months and things slowly improved.

[SnazzyD]

This level can be tough in that your adrenals need to start to work but the Pred dose is still a bit high for them not to be still suppressed. I hated this part because I felt tired, emotional, weak, foggy headed, fluey achey. Getting up in the morning was a trial and I had to reinstate afternoon naps. The only way to get out of it is to get the dose low enough to trigger the adrenal glands to work. But it has to be done very slowly to avoid an adrenal crisis. I had to pare down my already boring life to avoid over doing it; even a trip to the shops would wipe me out. As I got to about 5/6mg I started to feel a bit better. I had to drop by 0.5mg at a time gradually introducing the new dose over anything from 4-14 weeks depending how low I was and how I felt. You can’t hurry this bit if you are afflicted and the only way the adrenals will be triggered into action is to keep the body needing more cortisol. One also has to be careful of not overstepping what your body can cope with and not over do it. When you do you really know about it and you might need to give yourself a rescue mg or so, but not on a regular basis just to get you through a timetable you want. Do read Dorset Lady’s link.

[Purplecrow]

Hi, it sounds like you have hit the wall regarding quick pred reduction. Reducing 32 mg in a year is huge leap, and you are experiencing your body rebelling against the reduction of its drug. All that said...here are a few things to remember.....

you have done well. You will feel better. You have protected your vision, you have eased some of your physical pain, and you have made huge progress.

For the next short while, you need to give some energy to self care. Things I found helpful when I had hit this same wall were....give myself permission to just STOP resisting what my body clearly needed.

For one..I took a nap every day. Every day. I might lie and read a book, or actually sleep, but I did it every day. It helped that I set my clock to rise in one hour. The clock timer kept me from sleeping too long, and also gave me permission to tell others I would attend to their needs when "I get up from my nap".

Another thing was to be diligent about staying hydrated, drinking 6-8 glasses of water a day.

Thing three, I gave myself permission to say "no" to requests of my time. No, I can't watch the grandkids this afternoon, no, I can't go shopping with you..

No, I can't host the holiday get together this year....you get the point.

It's hard to accept that you have a significant health disorder, which in words of others wiser than I, "is not life threatening, it it is life changing".

PMR has cognitive, emotional and physical manifestations. Anxiety is a real physical issue, brain fog is real, muscle pain is real, and deadly fatigue is REAL!

My PMR journey started nearly 10 years ago. It took me 3 or 4 years to finally admit I was going to have to work through the symptoms that kept hounding me...and that changed from week to week. I guess you can say I finally accepted that I have an illness, and I was not going to be able to ignore it any longer.

So, nearly the end of my soapbox...give yourself a break, and take a nap. Protect your time, let others clean the house and cook a few meals. You need to care for you now. It's ok.

Kind regards, Jerri

PMR diagnosed 2013.

Currently 5 mg pred

[FRnina in reply to Purplecrow]

Thanks so much Purplecrow for the excellent reminder. Too easy to forget that this illness needs proper management beyond the various medicines. Sometimes I try to carry on 'as normal' but, as you say, it's counterproductive. Stiff upper lipism is no help. So those 3 things: nap, water and saying no are THE way forward. (and let that be a guilt-free going forward).

[Shytot]

Hi you started with a much higher dose than me (15) but fatigue anxiety and depression were all part of my journey. I am told that they w adrenals produce 7.5 mg of

[PMRpro Ambassador]

It isn't an uncommon effect at this sort of limbo dose - and the last 2 years have meant a lot of things are much more angst-provoking than they may have been pre-Covid.

After only a year on pred, even though the starting dose was pretty high for PMR, your adrenal function should be able to recover fairly well if you are patient. It is less that the adrenal glands aren't working as that the body knows it has plenty of corticosteroid available for everyday activities as long as you aren't pushing things.

I describe it as a bit like a central heating boiler in combination with a woodburner stove in the same room as the thermostat - as long as the woodburner stove is lit and producing heat, the central heating boiler thinks it doesn't need to contribute, even though the underfloor heating in the bathroom would be handy when you want a shower! As the woodburner stove dies down and produces less heat, the central heating eventually comes on and the bathroom will warm up too.

You are just entering the range where the pred dose isn't always enough to do everything - but is still enough to suppress the production of booster cortisol and the whole complex feedback set up must wake up and settle down to provide normal servoce. That doesn't happen overnight, the adrenal function doesn't "kick in", it wakes up and adjusts slowly, thinking about it at each stage. Until that is reliable - you will also be a bit unreliable.

The trick is to stick it out as best you can and go slowly - small adjustments and not too often.

[Hidden in reply to PMRpro]

Very good analogy

[Purplecrow in reply to PMRpro]

💜👏🏽💜

[Camelian]

Im also trying to reduce predesalone and am experiencing some of the problems you've mentioned. I started at 15mg dropped to 12.5mg after 3 weeks then 10 mg for 3 weeks but that extended to 4-5 weeks as I was trying to get GR 1mg tabs which eventually I did thankfully. I did feel the drops but as I had so many horrible side effects from the predesalone I wasn't sure what was related to what🤔I reduced to 9mg a week ago and felt awful much worse than the previous drops it was not so much a return of my PMR symptoms, although they did come back a bit, it was more fatigue+ nausea+ a real feeling of being unwell added to this anxiety low mood very emotional all in all felt terrible. I tried to get through it hoping I'd feel better once my body adjusted but the ear pain I've been experiencing got worse and much more often so due to concerns I have about having possible GCA as well as PMR I called the doctor who was very helpful and advised me to go back to 10mg for 4 weeks and then try again - Im thinking at 0.5mg instead of 1mg but I'm not sure you can get GR 0.5mg tabs and as I'm also having problems with my whole digestive system i think I do need the GR tabs so will speak to the doctor about this.

Reading the FAQ has helped me get a better understanding of this condition and I'm trying to follow the advice with regards keeping stress down and slowing down but I do find the slowing down hard. I'm on day 2 of increasing back to 10mg as advised by my GP and I am feeling slightly better but no improvement in ear pain so I've now booked a private consultation with an ENT specialist so hopefully I'll get some answers which in turn will hopefully reduce the stress. Good luck and I hope you start to feel better soon.

Take care.

[PMRpro Ambassador in reply to Camelian]

You cannot get 1/2mg steroid tablets of ANY sort. It isn't a problem down to 2mg with g/r tablets: 2.5mg tablets plus 1mg tablets to make up the dose.

Are you also on a PPI (omeprazole or whatever)? That could cause GI problems - many patients do find that.

[Hidden]

Sorry to hear you're suffering. Me too at times. I seem to get 3 good days out of seven...the rest I feel like you, awful. I wouldn't go as far as to call it depression, just really down in the dumps and can't seem to pull myself out of it. I'm currently at 7mg and have been reducing by 0.5mg monthly. So on the first on May I will yet again try 6.5mg. Last time I manged to reach 6.5mg and blessed GCA showed up again, but I only increased for a few day to 10mg and then back to 7mg.....so far so good for me, but not holding my breath. Your taper does seem very fast. I was diagnosed in Dec 2019, so in my third year. I'm lucky that I rarely feel fatigued. I suppose looking after hubby right now I don't get time to be tired, but I do fall into bed quite early these days.

Kind regards

Anne