Exhaustion

[Ashington52]

I was diagnosed with PMR in October 2020 due to the excruciating pain in my shoulders and neck and difficulty walking . Blood tests revealed only slightly raised inflammatory levels. I was prescribed 15mg of Prednisolone and within 3 days I was free of pain. I have always been extremely active, director of a charity and literally work from 8.00 in the morning until 8.00 in the evening. I was delighted at how well I thought I was managing with PMR and steroids which I have now managed to reduce to 7mg a day. For some unknown reason for the past week I have come crashing down and feel awful - absolute and complete utter exhaustion - it takes me hours to get going in a morning - I spend most of my day in tears - I get out of breath when I walk and have put on weight despite carefully watching my diet. Is this all part and parcel of PMR? Would be so grateful for any comments.

[DorsetLady PMRGCAuk volunteer]

Too fast a taper overall - and although you may not have noticed, your inflammation was probably slowly building up again - until as PMRPro often quotes “the bucket under the dripping tap was full and overflowed”.

You are also in the region where your Adrenal glands need to start thinking about sparking again - and many find that a difficult time.

You need to slow down - with your lifestyle (as much as is possible) and your tapering.

You cannot gallop through PMR - you are only about 5-6 months in -and unless you are very lucky it’s likely to last a lot longer.

Try an extra mg or two now before it gets any worse, get really stabilised, and then reduce by 0.5mg a time... but only when your body lets you...

[Ashington52 in reply to DorsetLady]

Thank you so much for your reassurance - I am so grateful to you. I have been in tears all morning wondering what on earth was wrong with me as I thought I was doing so well. It took a lot for me to write on this forum but I’m so pleased that I have.

[YuliK]

Good Afternoon DL

That’s really sound advice you have given to Ashington 52..

That certainly was a very quick reduction indeed ..

I arrived to 3:5mg and that’s after two and a half years of PMR ..

I was feeling completely incapacitated at 3:5mg ..I thought that I will never get back on my feet again.

thank goodness I listened to PMRpro’s advice and increased my dosage to 5mg. Not feeling quite so exhausted.

It was my adrenal not kicking in and too little cortisol.

I was like a ‘sleeping geriatric beauty’ I couldn’t keep my eyes open ...

I will now reduce slowly slowly. I think I’ll try even less than half a mg. I remember reading it’s possible to reduce by a quarter of a mg.

YuliK 😷

Have a nice weekend everyone. 🌻🌻🌻

[Koalajane]

I had a day like that yesterday and I often feel tired but don’t have the fatigue I had yesterday. A slight increase in dose really does help. Hope the extra pred helps. I have had PMR for nearly 4 years and only down to 4.25mg. I lost some weight by going the low carb way. I was obese before PMR and with the low carb diet I have lost about 4 stones.

[PMRpro Ambassador]

It is part and parcel of poorly managed PMR yes - that is a far faster taper than is sensible, especially if you are trying to carry on as you did pre-PMR. The median time to get to 5mg for 6 month without a flare is 18 months - you are way ahead of that curve and if you were good at 8mg, that is probably where you still need to be at present. You aren't tapering relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. PMR lasts upwards of a couple of years for most people - only 1 in 5 gets of pred in a year and a lot of those may well ot have had PMR in the first place. There is no hurry - because PMR takes ITS time, it is a law unto itself.

[Ashington52 in reply to PMRpro]

Thank you so much for your very helpful advice. This is all so very new to me and I have to say quite scary.