feeling run down

[Mandyq]

Hoping for a bit of advice please. I was diagnosed in April 2022 and started on 15mg Pred and now on 8.5mg. My tapering journey has been fairly straightforward (currently dropping by 0.5mg every 6 weeks or so ) and my GP has left me to my own devices ( don’t know if that’s good or Bad 🤣)

Pre PMR I was always really fit and healthy - Since I’ve had PMR I’ve had various minor infections In particular For the last 2-3 months I’ve been laid low by what seems like a constant stream of coughs and colds, culminating in a chest infection 2 weeks ago. In my pre PMR existence I would have carried on regardless and shaken things off in a couple of days. Since being diagnosed with PMR I seem to recover from things but find I’m lethargic, lack appetite, feel a bit light headed - generally feel unwell for a few weeks before I bounce back.

So my question - is this normal? Is it PMR itself or is it the side effects of Pred. Is it worth taking vitamin supplements to counteract this. I know I could go back to GP but trying to get an appointment is quite difficult.

Once again thanks to everyone on this site - it’s been a lifeline for me

Mandy Q

[SnazzyD]

It is normal to not be feeling like your former self with PMR while it is active since your immune system has gone haywire and will be doing so until it sorts itself out, even when on Pred. It’s a serious business. Pred has its drawbacks too (especially at higher doses) albeit giving you an improved quality of life by suppressing the inflammation. PMR does knock you for six for some time and whilst 2 years is a long time it is also not terribly long for PMR. If you try to lead a normal life and if that usually means pushing through, you will get kickback.

It is also quite possible that your infections have been Covid, even if you tested negative. There has been a a lot of it about in the Autumn with influenza really getting going in December according to gov reports (see link) so if you had either of these it is not surprising you are taking ages getting over them.

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Once you get below 10mg you also start to get to the level where the adrenal glands start to need to work and make cortisol to make up for the lack of Pred which is a more potent version. This can be slow to get going and in the meantime you can feel fatigued, empty and out of sorts. It is well worth reading in the FAQ’s all about adrenal glands; essential reading for sub-10mg’ers.

Have you had your vitamin D checked too as we are limping to the end of winter?

There’s plenty to be making you feel rough at the moment before even thinking about blaming Pred. It’s tough for sure when one feels one can’t make any headway.

[Mandyq in reply to SnazzyD]

Thank you -you’re right I have been trying to live a “normal” life and most of the time that’s ok. It’s so frustrating when you want to get on and do things and you find your poleaxed for seemingly no apparent reason.

Interesting what you say about Covid - I didn’t test but it seems to be on the up in my neighbourhood and people who’ve had it do say that it’s left them shattered.

I’m just going to have to learn to live with this - at least the cat will be happy if I spend more time lazing about on the sofa with her 🤣

[Paulagcl in reply to Mandyq]

Well, on the positive side, there's something to be said for having an excuse to be "lazy" -- which it isn't -- it' s your body telling you it needs to rest. I've always had a hard time giving myself permission for down time, but now that PMR forces me to take a break when I feel tired and not feel like a slacker, I am just doing things I enjoy that don't take that kind of energy. I paint, play the piano, write, read, trying to learn a little Spanish. So I think the trick is to find the bright side of slowing down while the PMR is active!

[Mandyq in reply to Paulagcl]

Having had limitless energy in the past it’s difficult to accept that you have to slow down. Still it’s a good excuse to limit the housework and concentrate on things which give pleasure

[DorsetLady PMRGCAuk volunteer]

The reason you are on Pred is to suppress your immune system, unfortunately that also means that you are more susceptible to any virus or infection. Your body cannot fight them are it did before the Pred. So yes it is normal for it to take longer to recover.

However would also say that at your current dose, your adrenals may be thinking about working again, having been asleep since you started Pred , and for some people that makes life even more difficult. .. and all the symptoms you mention are typical.

Have a look at this -

healthunlocked.com/pmrgcauk...

It might worth taking a multivitamin, but if it is adrenals, a very slow taper, small steps down, time, resting when you need, TLC as required- and most of all, patience will get you through.

[Mandyq in reply to DorsetLady]

Thank you for the prompt response. I’ve taken vitamin D on a regular basis for about the last 10 years so hopefully I should be ok with that.

It does sound as if the way I’m feeling is normal for PMR and I just need to be more patient and not expect to bounce back from every little set back. It’s such a frustrating condition to live with and as such can be quite depressing.

I’m going to check out the link now.

Thanks again for your ongoing support and advice

[DorsetLady PMRGCAuk volunteer in reply to Mandyq]

Very frustrating…

[Grammy80]

I have GCA, but I think our systems and our treatment often give us shared results. I can only share my truth....I used to be this 30-year-old, trapped in the body of what birthdays told me was a 78-year-old woman~! Then a gradual POW! I experienced exactly what you are describing...I could only drag around and do the essentials...the minimum.

I would let myself sleep when I was dragging, and if I had some energy, I'd eagerly do something enjoyable. But be assured, it passes; it does really get better. Now, I do pace myself- that just means life at my pace- but I feel really good and participate in the world out there. Keep the faith....💞

[Mandyq in reply to Grammy80]

Thank you for the reply - I’ve just got to learn to pace, and let some things go. In my case that’s going to be the house work 🤣

[DorsetLady PMRGCAuk volunteer in reply to Mandyq]

Moderate housework every time..😊

[PMRpro Ambassador in reply to DorsetLady]

Moderate????? Even that is a bit borderline ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well some is necessary - perhaps I should have said 'minimal' ..

[PMRpro Ambassador in reply to DorsetLady]

That minimum is what a cleaner is for. I don't count food or drink as housework ...

[Grammy80 in reply to Mandyq]

That a girl....it is all about choices and that is an excellent one.💞

[Mandyq in reply to Grammy80]

👍👍

[PMRpro Ambassador]

It isn't "normal" - but it is both common and usual to feel very different when you have PMR and when on pred. You have a "new normal" to use a rather hackneyed phrase. And both PMR and pred have an aging effect on us. Even papers in the medical literature about it: "I suddenly felt I'd aged" by Helen Twohig.

I am slightly younger than you, not 72 yet, but I have realised this winter what a massive effect the last 4 years have had on me. In my head I am still in my early 20s - unfortunately my body didn't get the memo. I haven't knowingly had Covid, not even minor sniffles that could be Covid, but that is always something to bear in mind at present - and testing doesn't always help as the quick tests are proving very unreliable with the latest iterations of Covid. And there is a lot out there ...

[Mandyq]

Thank you - you’re right I do have to get used to the “new normal”

When I was working in a staff management role I used to be quite scathing about people with long term health conditions - like ME and fibromyalgia - and if I’m honest I though they were malingerers. How things come back to haunt you! If I’d known then what I know now I’d have been much more sympathetic and much more proactive in devising programs to keep them in work.

As my mother used to say “ walk a mile in my shoes”

[PMRpro Ambassador in reply to Mandyq]

Indeed!