Fatigue

[Cashewnutty1962]

hi all

I’m have reduced the steroid dose from 5mgs to 4.5mgs now on day 4. Fatigue!!! My life!! I could happily go to bed at 7pm… This is my 3rd attempt at getting below 5mgs. I will persevere especially as the weather is getting warmer and I no longer have the stress and irritation from work.

[Phoebenooby]

try 4.75?

[Cashewnutty1962 in reply to Phoebenooby]

Hmm never thought of that!! If I’m still so tired, I will try that…thank you very much.

[Phoebenooby in reply to Cashewnutty1962]

If you feel really rubbish go back up to 5 for a few days then try 4.75mg, I ve done that and have now got down to 4mg (3 days! ) 🤞🏻

[Cashewnutty1962 in reply to Phoebenooby]

👌🏽

[PMRpro Ambassador]

This is a stage you have to weather to be able to get off pred - it can last a while or you might catch up after a few weeks but this is the point where you need tiny steps down and long gaps between. And sticking power.

[Cashewnutty1962 in reply to PMRpro]

I guess so.. Rheumatologist wants 1mg reduction every month!! He can wish!! It’s down at stages I decide😂

[DorsetLady PMRGCAuk volunteer]

Some info on adrenals -and the only way to get thought is very slow taper, small drops down , time , rest when you need to and patience, lots of patience….

healthunlocked.com/pmrgcauk...

Would also suggest you return to 5mg, stay there for a couple of months to give adrenals time to catch up, and then reduce very slowly.

[Cashewnutty1962 in reply to DorsetLady]

Hi, I was on 5mgs for about 2 months. Apart from fatigue on 4.5mgs, feel ok, not too much aching as I’m taking it easy… may go up to 4.75 if start to get discomfort.

Thank you

[Persevere99]

Hi

Try Devil’s Claw?

it’s a herbal anti inflammatory.

It lowered my Crp some years ago in just a week.

All the best

Persevere

[Cashewnutty1962 in reply to Persevere99]

Hi ok . My CPR has always been within normal limits. ESR was initially slightly raised but is normal now. Thank you.

[PMRpro Ambassador in reply to Persevere99]

Have you got shares in the stuff? It seems to be your answer to everything!!!

That your CRP fell in a week after taking it doesn't mean a lot - what were you taking it for?

[Bluebutterflygirl]

hi..your experience is a mirror image of my own journey to get off pred. I’m realising I have to follow advice very slow reduction..1/4 ml at a time in reducing is a good idea and try to be patient..very hard I know as I just want to get out and about but find myself in bed resting instead! Keep going as will I. Thanks to others for encouragement…your support and suggestions are so helpful ☺️

[Cashewnutty1962 in reply to Bluebutterflygirl]

Hi.. very true.. slow reduction is hard when you want to get off the steroids.. patience? What’s that then?!😂

[PMRpro Ambassador in reply to Cashewnutty1962]

It is not whether YOU want to get off steroids that is the primary factor - it is whether the disease activity of the PMR has decreased to let you get to a lower dose and, ultimately, stopped altogether so you not longer need the pred. Slow reduction just makes the process less uncomfortable in every way! If you rush, you will go too low too soon, the inflammation will build up again and you will have symptoms again. And when the adrenal function is involved at the lower doses - it can only return at its own pace.

[Cashewnutty1962 in reply to PMRpro]

Yes my head knows this.. my heart ignores it😂

[Bluebutterflygirl in reply to Cashewnutty1962]

Same!

[Cashewnutty1962 in reply to Bluebutterflygirl]

😂😂😂

[Louisa1840]

Happy to go to bed at 7 pm any night! I am on 2 mgs pred. I think this last stretch of the PMR journey is the tough bit but the ONLY way to encourage the adrenals to start up again is to NOT give them what they want ie more pred. Now you're not working just look after yourself, avoid stress (what, don't do LIFE , I know!) and rest as much as you can....