Can tapering by just 1/2 mg cause bad fatigue & Weakness

[Woodsey1]

Hi I have tapered from 5mg to 4 1/2 mg over the last month , but am suffering from really bad fatigue & Weakness. Pain is manageable but the weakness is so hard to cope with Also bad anxiety set in.Was due to see my rheumatologist tomorrow but he has cancelled due to covid. Been waiting a year to see him . Please can anyone advice if this is normal & weather it will wear off. Thanks

[SnazzyD]

I certainly felt every 0.5mg in the ways you describe. However, one has to put these things in context. How did your other reductions go? Are you on 4.5mg 100% of the time now? Have you had any changes in activity or stress? Don’t forget, every 0.5mg is a bigger percentage of the previous dose so the impact can be felt more as you go down if your adrenals aren’t very frisky.

[Woodsey1 in reply to SnazzyD]

Hi SnazzyD thanks for your reply. I didn’t have to many problems till I got to 6mg then stayed at each taper for at least 2 months. But this time I feel like I have been hit by a truck. I also have osteoarthritis in a lot of my joints. And disc compression in my spine which causes a lot of nerve pain . I was due to have injection in my spine just before Xmas but it was cancelled due to covid , back on the waiting list. I have been trying to get down as low as possible as have now been told I have osteoporosis. Thanks again

[SnazzyD in reply to Woodsey1]

If you have chronic pain, I expect your cortisol requirements are greater than normal, so if your cortisone drops and your adrenal glands are still napping I’m not surprised you feel flat. I didn’t feel great throughout until I got to 3mg and my adrenals clearly were doing something. It wasn’t plain sailing from there but not as bad as before by a long way.

[Woodsey1 in reply to SnazzyD]

Thank you that makes sense. So glad you are managing now xxx

[PMRpro Ambassador]

Half a mg can be the difference between being fine and not ... I wrote a post about it about 10 years ago!!

It does sound as if your adrenal function is lagging behind your reduction of the dose of pred. It doesn't return in leaps - it creeps up slowly and may swing around a bit as well. So after each reduction, you have a period of feeling rubbish. If you are lucky it will adjust soon.

If not, speak to your GP about maybe seeing an endocrinologist. The only thing that encourages the adrenal function to return is a low level of pred in the body but sometimes they use hydrocortisone which stays in the body for less time and that helps encourage the adrenal function return.

[Woodsey1 in reply to PMRpro]

Thank you for advice x

[piglette]

You are in the clutches of your adrenal glands having to start working again, so the deathly fatigue raises its ugly head. I must admit I did go back to 6mg. I know that one doctor recommends staying at 5mg for several months if you have problems.

[Woodsey1 in reply to piglette]

Hi think I might do the same & try 6mg thanks x

[MrsNails]

I’m at 10mg & even 0.5mg can rock the boat for me 😞 l want to try n reduce but 10mg is holding me - 9mg is too low - so taking it steady at 10mg until l see my latest set of blood results before l gave another try…..

[Maudie19 in reply to MrsNails]

Same as me - on my third attempt to reduce from 10 but this time just going to 9.5. Trouble is my ESR has always been negative!

[MrsNails in reply to Maudie19]

I’m waiting on my latest blood results - symptoms always trump blood results but invariably for me they match!I’m struggling a bit at the moment but l can chill the next few days so hopefully l can stay in 10mg & not increase! 🙏🏼

[Maudie19 in reply to MrsNails]

I haven't had a blood test since I started Feb 2021. GP has just left me to get on with it.

[MrsNails in reply to Maudie19]

I’m on MTX so l have regular blood tests……

[Woodsey1 in reply to MrsNails]

Hope you get the results you want will keep everything crossed for you xxx

[MrsNails in reply to Woodsey1]

Thanks 🙏🏼

[123mossie]

I found 1/2 mgm made a lot of difference, my adrenals were so sluggish& the fatigue was awful. For me the only answer was to go really slowly& pause the taper so your body can catch up. Same from 4.5 to 4, had to be careful about exercise, get plenty of rest when you need to, and listen your body. You’ll get there but patience, patience.

[SweetwaterRoad]

I cannot seem to taper below 3mgs (my current dose) without that unbearable fatigue and muscle weakness which for me then leads to discouragement and depression. When I bump it back up, energy returns and my spirits brighten. I’ve been on pred since 2016 and would dearly love to be off altogether but it’s a tough road. My rheumy said I might have to be at this dose indefinitely.

[DorsetLady PMRGCAuk volunteer in reply to SweetwaterRoad]

Well if you do have to be at 3mg indefinitely but you feel okay on it then take it and run!

It may be disappointing but at such a low dose the side effects of Pred are minimal.

As I replied to another thread yesterday being in constant pain is debilitating mentally as well as physically - and we don’t always realise how much when going through that, so if 3mg gives you good quality of life - accept that.

One day you may get to zero, but it’s not the end of the world if you don’t.

[PMRpro Ambassador in reply to SweetwaterRoad]

Prof Dasgupta often keeps patients at that sort of dose longterm as he finds it reduces the risk of relapse. If it is good enough for him ...

[borednow]

Did for me. Went from 2mg to 1.5mg, all OK for a start and then it all went pear shaped. Retreated hurriedly to 5mg, then reduced slowly to 2mg and there I have stayed. Quite happily. If I have to stay at 2mg indefinitely then so be it. I must admit I find it difficult to understand the "must get to the end of the race as fast as possible" challenge. At my age (late seventies) quality of life is by far the most important thing to me. Whatever you decide, I wish you well.

[PMRpro Ambassador in reply to borednow]

Couldn't agree more - but QOL has been my aim all along. Even at much higher doses,

[Theziggy in reply to PMRpro]

I really don't understand a lot of ACNs (acronyms) lol

[PMRpro Ambassador in reply to Theziggy]

Quality Of Life ...

[discoballs]

I am about to taper from 8mg to 7.5 and am dreading it.

[borednow in reply to discoballs]

Have you tried tapering before and, if so, was it successful?

[discoballs in reply to borednow]

Yes. I went from 80mg to 5mg then Consultant put me up to 20mg for asthma exacerbation and now back to 8mg. I shouldn't have listened to the chest consultant as I was doing OK on 5mg

[borednow in reply to discoballs]

I do so agree with Dorset Lady's comment. It's your illness and, in my opinion, you've proved you can handle it beautifully. You know what your body can or cannot cope with. Go for it and good luck!! And, above all else, be kind to yourself.

[DorsetLady PMRGCAuk volunteer in reply to discoballs]

Why are you dreading it? You’ve done it before, just try when you feel up to it - and don’t put pressure on yourself.

[Woodsey1 in reply to discoballs]

Good luck David hope all goes well for you x

[Bcol]

I'm just in the process of going from 6mg to 5mg, about half way there (hopefully). I've not had any problems with tapering so far, but the last 2 to 3 days I've noticed that I have become short of breath, more achy and having to stop for a rest whilst walking the beastie. I'll see how the next three weeks go but will probably be a good lad and go to .5mg reductions from then on. Or, if neccessary, stay at 5mg for another month or so until things settle down.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Might be wise to stop the reduction where you are and just repeat the last week’s doses for the next couple of weeks - if that helps you can then pick up where you left off… nothing is set in stone- you can adjust any slower taper to what suits you. And, yes next taper, provided this one is successful only 0.5mg a time..

[Bcol in reply to DorsetLady]

Suspect, as always, oh wise one, that you are correct and will do as suggested. 🙂🙂

[Hankb]

I've suffered from the dreaded fatigue for months. I'm now down to 8.5mg pred per day after starting at 20mg 14 months ago. I don't know whether I should up my doseage or not, I wouldn't really want to as I've come down pain free thus far. BTW I'm using DL's tapering guide which works for me.I'm fairly hyper and have difficulty in sitting around so I usually potter about finding things to do. I'm also in a band which involves practising once a week; maybe I'm doing too much ?? In addition my dear wife's health is not too good at the moment so I have to do more than usual about the house.

Any advise would be appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Hankb]

Honestly-yes you are probably doing too much - but some of it obviously out of necessity- your wife’s health for example.

Your band practice is something you enjoy, so I wouldn’t suggest you cut back on that- but perhaps you could ease up on the “pottering about” a little - try being a bit more proactive about resting - if that’s not an oxymoron!

Can you not consciously sit down for an hour or so and listen to music (obviously something you like) or listen to a podcast or audio book - without doing anything else at the same time - except relaxing.,

You won’t help yourself or your wife if you think you have to keep going…

Nag over 😉

[Hankb in reply to DorsetLady]

Than for your reply, I think you've summed up my situation vryvwell. I will have to start including an enforced rest period each day. I'm still finding it difficult to accept the situation but I will have for both our sakes. Many thanks once again.

[DorsetLady PMRGCAuk volunteer in reply to Hankb]

Well been there - fortunately through GCA now, but osteoarthritis has its limits as well…and whether we think it or not, we do need a bit down time to to keep us going.

[Hankb in reply to DorsetLady]

Hi DL. I started this afternoon, I had an hours cat nap and feel somewhat refreshed already.🙂 I'll continue with it. The weather here is extremely hot 34 deg today which tends to sap ones energy. Best wishes.

[DorsetLady PMRGCAuk volunteer in reply to Hankb]

Good….And yes heat can be very draining for someone in good health, never mind with illness..

There’s a good reason why hot countries have a siesta after lunch…💤

[Hankb in reply to DorsetLady]

So true 👍🙂

[PMRpro Ambassador in reply to Hankb]

Fatigue is an integral part of autoimmune disease so what you have had for months is part of the illness. You are still a bit high for real adrenal problems although the stress of your wife's state of health won't be helping. It has been part of the reason for me needing 15mg for the last couple of years and towards the end I was up to 19mg to function. I have been able to taper down to 12/13mg since OH died - but 12mg is a tiny bit low though.

And you have to choose your battles - you are almost certainly doing too much so you must try to prioritise activities or farm a few out so you can save yourself for the essentials (or the things you like doing best). If you break - who will look after the Mrs?

[Hankb in reply to PMRpro]

Thank you PMRpro. The advice I am getting from you ladies is very similar, I must pace myself and take rest periods during the day. Many of you have gone through and maybe still going through what I am experiencing now. I was hoping my case would be different but that's not so, I must accept the situation and reduce my lifestyle accordingly. Many thanks for your advice. Best wishes

[discoballs in reply to Hankb]

Take a nap Hankb when you feel a little tired. I do and it's wondrous. I have a white noise machine or use an Alexa speaker to gently play relaxing music. Love naps!

[Hankb in reply to discoballs]

I used to nap years ago after a round of golf but I've now got out of the habit. I'm going to start again after the advice I've been given by the iknd and understanding forum membermembers Many thanks.

[PMRpro Ambassador in reply to Hankb]

Everyone hopes they will be the exception - needless to say they almost never are

Both DL and I have been there as the carer, together with GCA and PMR respectively.

[Hankb in reply to PMRpro]

Your advice together with that the other ladies in the group is a great help, you've been there and your guidance is invaluable to us relatively new comers to PMR. I was hoping as was going to be the exception but it appears there is no quick fix I will have to ride it out with patience.Best wishes.

[tangocharlie]

Just to add to all the excellent answers above - some people do get increased anxiety and depression from Pred, and on reducing Pred - it is a listed possible side effect. And as Dr Mackie once said in a talk, withdrawal effects from Pred are also a real thing.

[Hankb in reply to tangocharlie]

Thanks tangocharlie. I'm beginning to realise that this is a long journey. Thank goodness for this forum, the knowledge here is invaluable. I have a good caring doctor but PMR in SA is rare and hence there is not much experience available this forum is a great help.

[tangocharlie in reply to Hankb]

We're all one big international family/club that no one planned to join!

[Hankb in reply to tangocharlie]

Your words are so true. 🙂👍

[Woodsey1 in reply to tangocharlie]

Thank you for that I’m sure some of my family think I am putting it on. Xx

[tangocharlie in reply to Woodsey1]

I think only people with a long-term chronic illness can really understand how it actually is for us every day. I had to show my family this:

huffingtonpost.co.uk/entry/...

[Woodsey1 in reply to tangocharlie]

Thanks so much for that post , I will definitely show my family , it made me cry as it is so true. Thanks all of you for being there . You all make such a difference when it all gets hard to deal with knowing you are not alone with this xx

[tgca]

Just begun the DSNS from 2 to 1 1/2 very cautiously as I’ve tried before without success.. I’ll let you know how it goes

[Woodsey1]

Hope all goes well xx

[Bedwell]

Yes I’m jealous too about 8 hours being normal! 6/7 if I’m lucky! And a little zizz after lunch! I’m struggling a bit as down from 12.5 to 12 this week! Rheumy very indignant that I hadn’t done Img monthly since I saw him in November!Said fatigue and dizziness was long Covid!!!Covers a lot when they dont

[Bedwell in reply to Bedwell]

Me again! Bedwell! Contd..from above! When they don’t know!!Looking back at my diary of 2017 which is when I last had PMR.. it took me 6 months altogether to reduce to zero! But I was having 2 hip replacements at the same time!!!!!constant fatigue and bleary eyed! Am I surprised??? And also the headache on top of my head… which I don’t remember having had before!! Ok I know I’m 83!!! But!

Onwards all!!! During this strange unsettled time.. and A Big Thankyou for helping to keep me standing.. ( as well of course as new great grandaughter Elise.. magic!)