FATIGUE: Hi, I have been on prednisolone since just... - PMRGCAuk

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FATIGUE

dillydally1 profile image
6 Replies

Hi,

I have been on prednisolone since just before Christmas, for PMR. I got one week of extra energy on starting 20mg of prednisolone, now feel weak and very low energy levels. I am on 12.5mg prednisolone at the moment. Is this normal. The prednisolone certainly as reduced my pain. I do also have underactive thyroid which is treated with 75mg thyroxine. x

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dillydally1
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kingharold11 profile image
kingharold11

Hi there I have had PMR for three and a half years throughout that time the fatigue has been my biggest problem I am permanently knackered I don,t have a lot of pain haven't since going on steroids I am on 5mg at the moment but have had a flare due to a water infection I had to take 10 a day for 5 days to get me over the infection but since then I have been exhausted. Wendy

dillydally1 profile image
dillydally1 in reply to kingharold11

thank you x

suzieh profile image
suzieh

I have had PMR for just over 2 years now .....didn't start the pred until 6 mths in as PMR was not diagnosed at the beginning. Like you I felt great with no pain after taking 20mg. Again, like you, I have to take thyroxine - when I started pred I was on 150 mg thyroxine (I had been on this dose for several years) now I am only on 75mg!! I should ask your dr to check your thyroid readings every few months to keep an eye on dosage. The steroids definitely had an impact on my thyroid dose.

I have experienced quite a lot of days with tiredness and low energy along the way, also dizzy spells and faint feelings. Not well at all some days. Luckily for me I don't work any more and can take it easy when I have to. I have always wondered if it was a combination of thyroid issues and PMR or just the pred??

The good news is I have been following the very slow reduction plan, advised on here, and am now reducing to 3.5 mg currently. I have been feeling almost normal again and have also lost half a stone ! Have enough energy now to do aqua aerobics, Pilates and yoga as well as gardening etc without any trouble. I have learnt to rest when I need to. Hope this is helpful and encouraging to others. I have gained such a lot of support from this group along the way and am very grateful for all the advice and help - thanks!!!

dillydally1 profile image
dillydally1 in reply to suzieh

Hi, thanks for the positive advice, it is good to know there is light at the end of the tunnel. I to have put on weight (nearly 2 stone), I suppose I am not used to carrying a lot of weight, so that won't help. my doctor has just done a thyroid blood test, it takes 3 weeks for results, cant remember the name of it. Glad to know your almost feeling normal again. best wishes for the future. I agree this group offers brilliant support along our journey with pmr. and I am also grateful for all advice offered. x

PMRpro profile image
PMRproAmbassador

The energy boost may be your personal response to higher dose pred - some people it energises, others are desperately tired. You may need the thyroxine dose adjusted - the whole HPA set-up (hypothalamus, pituitary and adrenal) is linked and changing one bit may send the other bits haywire.

The fatigue in autoimmune illnesses doesn't respond much to the medication ever - and I bet you are trying to catch up all the things you couldn't do when you felt so sore????? REST and pacing yourself are essential from beginning to end of PMR - and learning to manage PMR is a combination of using the pred to relieve the pain and stiffness and learning to work around the fatigue. Having a rest at a time that works for you will give you more energy later too - and in the end you get more good hours in the day than trying to force yourself to keep going at all costs.

dillydally1 profile image
dillydally1 in reply to PMRpro

thank you

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