Exhaustion: Is it normal to be exhausted & shaky... - PMRGCAuk

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Exhaustion

Summerrental profile image
24 Replies

Is it normal to be exhausted & shaky when reducing Prednisone from 11 to 10 MG? Just walking a short distance tires me out.

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Summerrental profile image
Summerrental
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24 Replies

Hi

11mg-10mg was always my sticking point, time after time.

How long were you on 11mg? An option is to use one of the slow reducing Methods (see under Pinned Posts) and/or you could always try reducing by 0.5mg

MrsN

Summerrental profile image
Summerrental in reply to

Thanks Mrs Nails,

About 6 weeks on 11 mg & I am doing the slow taper.

in reply toSummerrental

Maybe try dropping by 0.5mg or you may have reached the lowest dose for you at this time, so you could stay on 11mg an extra couple of weeks then try again but by 0.5mg

Good Luck 🍀

HeronNS profile image
HeronNS

I think a lot of people get this fatigue stage. In my case I was at 4 mg, so it is different for all of us, but much the same effect. I just kept on chugging and in the end I got through it, didn't need to slow my taper (but I was doing dead slow taper .5 mg at a time and had been for months). You might want to check with your doctor that all your electrolytes are at a healthy level, and other things which can cause fatigue, like low iron for example and I think there are a couple of other things they check for. Pred taper could be the trigger, but there may be other factors at play. I was getting very tired again a few months ago and had these things checked and my iron was low, so back to the (tolerable liquid) supplement, and much better now.

Summerrental profile image
Summerrental in reply toHeronNS

Thanks HeronNS,

I am having bloodwork done on Tuesday. My bloodwork is all over the place since I have been on Pred.

PMRpro profile image
PMRproAmbassador in reply toSummerrental

Are you only on pred?

Summerrental profile image
Summerrental in reply toPMRpro

My GP put me on Crestor a few days ago due to high cholesterol.

Summerrental profile image
Summerrental in reply toPMRpro

I am only on 5mg of Crestor

PMRpro profile image
PMRproAmbassador in reply toSummerrental

I was on a half dose (alternate days) of Lipitor (supposedly less of a problem) and it took 10 days for me to be almost unable to walk 50m up a slight slope to get into the hospital. It was fatigue and weakness combined. So do be wary. It may improve and I hope it does.

Christophene profile image
Christophene in reply toHeronNS

Low iron and anemia is associated with PMR per a pamphlet in my rheumy's office. I am anemic, and have been taking an iron supplement. I am anxious for a new round of blood work to see if it has improved. I got down to 4 mg, but felt miserable the whole time; I was just being stubborn about raising my dose b/c it seemed like a lot of effort to get there, but I eventually told myself it was ridiculous to suffer. I went back up to 8 mg, and what a relief.

Now I am getting my depotmethylprednisisolone by injection every 3 weeks; I brought my GP an article by Dr. Das Gupta asserting that injected depotmethylprednisisolone produces less steroid side effects, like moon face, less weight gain, only 1 fracture in his study, and less other side effects from oral Pred. It was a double blind study. Luckily, my GP was very open to the idea. It takes the yo-yoing out of my hands.

It may be too late for me since I had been on oral Pred almost 3 years. But at least it's out of my hands. I didn't think my rheumy would be that open minded.

PMRpro profile image
PMRproAmbassador in reply toChristophene

Anaemia is associated with many autoimmune and chronic disorders but it is not treated with iron supplements but by addressing the underlying disorder:

irondisorders.org/anemia-of...

Your doctor needs to be sure that this is true iron-deficiency anaemia.

HeronNS profile image
HeronNS in reply toPMRpro

That must explain why my doctor checks my ferritin then? I'd read that high ferritin was one of the symptoms of inflammation or autoimmune disease, but mine was practically nonexistent.

Noosat profile image
Noosat in reply toHeronNS

Yes, at 4.5mg doctor put me on iron supplement for a month. I still get tired, but if I can force myself to go to chair yoga, did yesterday, I seem to gain some energy

Jackoh profile image
Jackoh

I had a lot of problems reducing from 11 mg to 10mg the first time around. Unfortunately after then I went on to develop GCA so haven’t yet got to that point again. But while on 11mg I tried going down to 10mg. I felt exhausted and in pain. I therefore tried 10.5 mg. On both occasions I followed the DSNS method. Maybe as Mrs Nails suggested try .5 mg at this point or go back to 11mg for a couple of weeks where you felt comfortable and try again. I would really recommend though the .5gm drop at this point if it’s been a sticking point before. I’m at present reducing from 12mg to 11.5mg. 11mg was a step too far for me.

in reply toJackoh

Hi Jacky

We are at a similar place 12mg->11.5mg Fingers Crossed 🤞🏻

Angela xx

Jackoh profile image
Jackoh in reply to

Yes❤️

Mellow-Yellow profile image
Mellow-Yellow

I had overwhelming exhaustion at I think around 6 mg much earlier this year..Slept most afternoons and still felt zombiefied.I wondered if it was an adrenal thing,it lasted a good month.

I use the DSNS method,1/2 a mg a time,and have now reduced to 4 mg without further problems🤞(so far!)

PMRpro profile image
PMRproAmbassador in reply toMellow-Yellow

Probably was if you are doing OK at the lower doses. I think once the adrenals get the message it improves quickly but some adrenal glands are slow on the uptake!

Mellow-Yellow profile image
Mellow-Yellow in reply toPMRpro

Thank you !😊

Noosat profile image
Noosat

I know this sounds counterintuitive, but I found that over time exercising helps me combat the fatigue, which I still get, but is not as debilitating. I've just had lunch after exercising this morning and doing other stuff around the house and am ready for a lie down, Will probably get "second wind" later this afternoon. Good Luck.

Christophene profile image
Christophene in reply toNoosat

I am not as fatigued as I used to be. In fact, I almost never nap. and sometimes stay until midnight. That is an improvement; that is my one major improvement.

HeronNS profile image
HeronNS in reply toNoosat

I don't think that is counterintuitive at all. When you exercise you are getting your blood flowing, which means more oxygen (and other nutrients) being delivered to all your cells. Of course with our condition we do need to have our rest periods too!

PMRpro profile image
PMRproAmbassador in reply toHeronNS

Certainly isn't. Just been checking a scientific paper that shows that improving skeletal muscle condition also improves other things such as cardiac function. Other papers talk about improved brain function.

Noosat profile image
Noosat in reply toPMRpro

As I said in another post since I have been doing the exercises at the gym, my heart rate has dropped. This morning is a rest morning for me. This afternoon I work at the library bookstore. I am going to 4 classes a week and also have a workout especially for me by a trainer, if I choose to go additional days or stay longer. So far the old body is standing up to the regime. However, I don't want it to interfere with the volunteer work I do. :)

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