Tapering and pains

I managed to taper down from 20 mg to 2 and a half prenisolone then rheumatoid consultant said let's try 5mg see what happens. I went to her because I had pains everywhere whether I walked or sat down. Had trouble getting up from sofa. Felt lethargic but not enough to sleep. Worst was pains in knees and hips. Do feel 50% better on 5mg but still no energy. People says oh it old age which makes me angry I am 68 BTW. Does anyone else feel like this. I have a disabled husband and grandson to look after so I need my energy. Oh and I fall over a lot . Please feel free to reply I need it

[Kendrew]

Hi Oskamilo. It's a little difficult to answer your question completely as it would be helpful to know when you started on prednisolone. I'm assuming it was Dec 2020 when you joined the forum? If so, you've done incredibly well to reach 2.5mg in 6mths. If this is the case then two things may be happening.... either you've dropped below the dose of steroids required to keep the inflammation under control...hence the return of symptoms.....and/or you're now well into the area where the adrenals are attempting to fire up again in order to produce the shortfall of cortisol that the prednisolone is no longer providing. This can cause you to feel very fatigued.... as can the condition....as can prednisolone.

I'm afraid there's not much you can do except rest when you feel tired. Rest is extremely important, as pushing yourself to do more than you're capable of can almost certainly result in a re-emergence of symptoms (a flare) which would ultimately mean increasing your steroids again.

Hope this is helpful and I'm sure others more experienced will be along to add anything else you may need to know.

[piglette]

If you are like me it is your adrenal glands being forced to wake up and putting up a bit of a fight! At 6mg I was totally exhausted all the time. I was too tired to scratch my nose. It has got better at 2mg but I still feel a bit like a washed out rag.

[Hidden in reply to piglette]

Washed out bit of rag is exactly how I feel

[DorsetLady PMRGCAuk volunteer]

Would help to know what you were diagnosed with....and when.... and how you tapered. Bit difficult to answer unless we have some info as to what’s gone on before.

First guess would be

a. you’ve gone below dose you need for your illness, and

b. your Adrenals are struggling.

[PMRpro Ambassador]

It sounds as if your rheumy suspects you have gone too low on the pred dose you need to manage the PMR symptoms - which is why you feel some better at 5mg - and your adrenal glands hadn't returned to full function. Basically - you need enough pred to manage the PMR. If it is less than about 7mg you are possibly going to feel fatigued until you get lower AND your adrenal glands are working again. But the unmanaged PMR will cause both pain and fatigue and will continue to do so until the inflammation is under control.

[Canarylady]

O bless you oskamilo,I m the same as you,I ve got pains everywhere in my body!

I hate feeling and being in pain,I have pain when I breathe in too!nothing happens if I take painkillers either.

I keep down a job of just over 40 hrs,I count the hrs until I get to Friday at 4 pm then I know I can rest up.

It must be very difficult for you with having to care for your dear family,if you don t mind me asking where are you?

Anyway I ll close for now and I will be thinking of you.

Take care

Xx

[Hidden in reply to Canarylady]

For my sins I live in chadwell st mary. Feel like I have had enuf

[Hidden]

Like you reduced to 2.5 over 3 years but totally fatigued and in pain, especially hands and knees, have a difficult time ahead for a few days so have upped to 5mg pred. Nearly feel like my old self, now confused, was it the lack of cortisol or not enough pred that was making me feel so I'll? Good luck this is a horrible disease isn't it and not many people understand.

[ChrisinNam in reply to Hidden]

Yes, indeed, this IS a horrible disease, and definitely, not many people understand. Many people have said to me that it's just old age. IT ISN'T!!! It's wretched PMR. Old age does NOT come upon you within an hour or two. PMR came at me like that. Like a sledge hammer, while I was weeding. (And now the weeds have taken over The only people who really understand are fellow sufferers as on this site. Best of luck.

[Hidden in reply to ChrisinNam]

Thank you

[Hidden in reply to ChrisinNam]

Yes I went to bed a spritely 74 year old woke up feeling like100 , now 77 and still feel older than my years, trouble is some of it could be age!

[rosajur in reply to Hidden]

I went to bed 7.5 years ago, a fit & slim person of 53, & woke up like a 100 year old or worse. Still dragging the chain...

[Hidden in reply to rosajur]

At least I had 20 years of life longer so perhaps shouldn't moan ATB x

[Hidden in reply to Hidden]

I don't think they do understand consultants look at me as though I am lying. So glad to know others are like it. I know that sounds horrid but ........

[PMRpro Ambassador in reply to Hidden]

Show them this:

core.ac.uk/download/pdf/302...

[Nightingales]

So sorry you are going through this. I have experienced the horrific fatigue. It is just starting to lift after higher doses of pred. Is there any way you can get some help from caregivers for your husband and son. You have a serious illness and need some help.

[AmberAliona]

Oh I know how you feel. I was diagnosed in November 2017 and started at 25mgs. After a few weeks I started slowly tapering, and eventually got to 6mgs. I couldn’t move, I hurt everywhere. Saw my GP, back up to 15 for a month and felt pretty good. Then started tapering again, down by 1mg every 4 weeks. Not too bad, but I am down on 6 mgs again and it’s the same old story. I am so exhausted all the time, although I sleep quite well, even though I have a good doze every afternoon.

[PMRpro Ambassador in reply to AmberAliona]

At what dose did you still feel OK? You are never reducing relentlessly to zero - you are tapering the dose in a process called titration to find the lowest dose that gives the same effect as the starting dose. When you get symptoms back at the same level more than once it is usually your body telling you you have arrived at your destination for now - it doesn't mean you won't get lower, just not yet.

[AmberAliona in reply to PMRpro]

Yes, I’ve realised that. I felt ok on 8 so will go back on that for a while. Thank you

[PMRpro Ambassador in reply to AmberAliona]

When it happens, you don't usually need to go all the way back to the start, adding 5mg to the dose where you flared for a few days is enough for most. And after a week you can drop to the dose above where you flared without tapering. Good luck