When will my stamina come back?

I cam off Prednisolone at the end of January after months of tapering and being on 1mg for weeks. I was scared to death... but it was ok. Strangely I missed the habit of taking the tablets every morning. 4 months on I’m not yet discharged as the mysterious numbers are still in normal range but higher than January. I have pain in my hands and across my shoulders still. My question though is when will my stamina return? I have limited amount of energy usually in the morning and then I’m done. I’m 58 and work part time (pre-lockdown) I have GCA and PMR. I struggle in the afternoon to muster any impetus.

Thanks in advance

[DorsetLady PMRGCAuk volunteer]

Hi,

“4 months on I’m not yet discharged as the mysterious numbers are still in normal range but higher than January. I have pain in my hands and across my shoulders still” -

makes me think your GCA is still active. You’re less than 3 years - so quite possible.

So why don’t you try 5mg a day for a week or so and see what happens - if no difference then stop. If a good reaction then maybe reduce to 2.5mg, and then try reducing again - 0.5mg a time.

You might not want to start Pred again, but if you’ve still got remains of GCA - there’s a chance of it flaring up again - and that’s not want you want or need.

Your stamina is mainly due to adrenal glands not up and running yet (it can take up to a year after coming off a Pred) - and maybe the fact that GCA is still lurking.

[Hidden in reply to DorsetLady]

Thanks. It had crossed my mind too x

[PMRpro Ambassador]

A couple of friends who have got off pred successfully for years now tell me that it took a good year for them to feel back to normal and able (in one case at least) to do the gardening properly. She has adapted the garden a bit since - but then, she is in her mid-80s now!

But do keep a close eye on those blood markers: if they are creeping up it suggests the underlying condition that causes the PMR is still active and creating inflammation, even if minimally so. Left it may build up until you see a proper return of symptoms. If it were me I'd go back to 1mg and see if that halts it - you wouldn't be the first to have celebrated after ages at 1mg, even 1/2mg and then discovered it was doing a lot more than you thought. You might need a few days of 5mg first and then go to 1mg - but it is worth the try, 1mg really is a negligible dose to stick at for years if need be.

[musicality in reply to PMRpro]

Blood markers can b high even if u have say, an infection e.g. UTI or cold, etc., so not always PMR. Good luck.

[PMRpro Ambassador in reply to musicality]

That is why I said keep an eye on them if they are creeping up. If it is due to an infection it will be higher but then fall again. No-one should raise their pred dose in response to a single raised ESR or CRP result - but if they then check it a week or two later and it is still rising that is a different matter. And you may also see it creeping up - just a few points at a time - but still lying within what is called the normal range. A single person doesn't have a range - a population of thousands is tested to find the normal range: the range of levels found in 95% of the population. The fact it is creeping up is a warning.

[SheffieldJane]

Is there any scope for a regular nap after lunch? This is a life saver for me. I agree with the advice you’ve had obviously. I wonder if a referral to an Endocrinologist would add value? My Adrenal function has wobbled and righted itself ( potentially) during the phase you are in and the Endocrinologist had some strategies for this. As you probably know your Cortisol production is flying solo now. This contributes to the lack of stamina hugely. Good luck!

[musicality in reply to SheffieldJane]

Yep a nap after lunch certainly helps. My husband needs one 2 so it helps, although he sleeps longer than me. Even if I don't drop off I feel much better. We just sleep in the lounge with tv on low and I switch it off as soon as our eyelids droop. Happy snoozing! 😴

[Thelmarina in reply to SheffieldJane]

I realise that my midday 'stop' is one I look forward to hugely. Lunch, watch Doctors (may pick up tips :)then lie back on my sofa, loose blanket, eyes shut, until 3pm. Bliss..

[Hidden in reply to SheffieldJane]

At the moment in lockdown yes. But I’m still working so once I go back no unfortunately not ...

[SheffieldJane in reply to Hidden]

GCA is a disability. You are covered by the Equalities Act. Your employer is obliged to make reasonable adjustments to enable you to stay in work. These may include an alteration to your working pattern to enable rest times to be built in. As an ex HR manager we would have striven to do that at least and we did try to be exemplary.

[Hidden in reply to SheffieldJane]

Not easy in a hairdressers.... x

[SheffieldJane in reply to Hidden]

My lovely hairdresser Laura has a plan. I expect that it involves less clients and other flexibility. You can’t stand.

[Mariemcdo]

I am now 2 years from taking my last pred tablet and I am still struggling with very low energy. I am great in the morning but by 2.00pm I hit a very low point so I have to rest. If I'm lucky by 5.00pm things are picking up again. I have found swimming very helpful and I do my 50 lengths between 5.00-6.00pm which seems to re-vitalise me. If not a swim then a 45 minute session (gentle) at the gym helps too. It seems that the right level of exercise helps me break through that awful period of daily fatigue.

[Seraphina56 in reply to Mariemcdo]

Hello. I’m replying to you because you mentioned swimming. I also do the same amount each day and I’m missing it hugely in the lockdown and getting stiffer and stiffer. Made worse because I was ill with shingles for Jan and Feb so haven’t swum for ages. How are you coping without it?

[Mariemcdo in reply to Seraphina56]

I’m incredibly, incredibly, incredibly lucky as I am in lockdown in France in a house with a pool! So I do get my daily swim which has been so healing.

[Seraphina56 in reply to Mariemcdo]

🏊🏼‍♂️🤢 Green with envy!

[Constance13 in reply to Mariemcdo]

You lucky thing!

[PMRpro Ambassador in reply to Mariemcdo]

Has your adrenal function ever been checked? It sounds as if you are producing cortisol - that would account for the revival in the late afternoon when the second shot of the day happens, but maybe the morning one is not all it might be.

[shazstep]

I am so glad I live by myself. I can get up when I want, housework when I have the energy, eat when I am hungry. Over the last 3 years I have had spurts of energy but never long lasting. Before Corona I was able to walk around our shopping centre. Not any more. I was attending exercise classes for the over 60's - not anymore.

I just go with the flow and if I want to vacuum at 2am or do dishes at 3am that is what I do. I can't wait to be off prednisolone - one day

[musicality]

I can't say when stamina will return as I am still on low dose but some people do get withdrawal pain for some time after. U cd try painkillers instead of restarting steroids. Ur body is ur best teacher. Take care