Tiredness : I am so tired on pred well at least I... - PMRGCAuk

PMRGCAuk

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Tiredness

Uglow profile image
Uglow

I am so tired on pred well at least I think it’s that more like I feel stoned! I’m not any ideas please

46 Replies

I go through waves of tiredness, I try as much as possible to do a bit, then rest and get through the day that way. I think pacing myself is going to be a big struggle for me!

Uglow profile image
Uglow in reply to Gyspysmum

I can’t seem to shake it off

Gyspysmum profile image
Gyspysmum in reply to Uglow

Its hard when everything just gets zapped out of you, I told my husband that it was like my batteries are drained. Cuddle up in a duvet, book a film and I hope you feel better soon.

piglette profile image
piglette in reply to Uglow

Tiredness and foggy head is also a symptom of the illness that you have.

Uglow profile image
Uglow in reply to Gyspysmum

I take pred at 8 am I thought maybe try at night. Do I need to ask Gp or can I just try. It will mean no pred for 12 hours any advice. Will it stop this awful tiredness.

HeronNS profile image
HeronNS in reply to Uglow

When people switch over they don't skip a dose, they take their dose early. So if you usually take it in the morning, take your dose in the evening of that same day, then the evening of the next day. I haven't asked my GP as I also fiddle around with dose scheduling, but I have always had a GP who trusted me to do what was best for me.

Uglow profile image
Uglow in reply to HeronNS

Ahhh thank you

piglette profile image
piglette in reply to Uglow

I am sure your GP would be happy for you to try different times unless they have specifically said you must take it at a specific time and no other.

HeronNS profile image
HeronNS in reply to Uglow

On the other hand I don't know if this will help with fatigue. You can but try. I've been playing around with a split dose and it seems to be working with the pain at least but still feel incredibly "lazy".

Uglow profile image
Uglow in reply to HeronNS

😂😂😂it’s not lazy your feeling it’s tired. Mine is like hangover and o don’t drink. I can relate it to when I had chemo

HeronNS profile image
HeronNS in reply to Uglow

No, it definitely is laziness! The fatigue kicks in when I've been active, it's the getting up and doing which seems hard. Possibly not irrelevant that this is much much worse since pandemic.

PMRpro profile image
PMRproAmbassador in reply to Uglow

No guarantee it will stop the tiredness but some people do find taking pred in the evening means they sleep through the worst of the side effects they are trying to reduce.

As HeronNS says - when you switch you take the morning dose early, so only 15 or 16 hours after the last dose. It;s fine, usually you'll just get a good day as you switch over.

HeronNS profile image
HeronNS in reply to PMRpro

I should ask you what you think of what I'm doing because I have an uneasy feeling I should try to adjust things pretty soon. For some reason no matter how large my dose was, since the beginning of this year it no longer seemed to last longer than about 16 hours.

I started switch by taking whole dose (at that time 7 mg) at 2 a.m. which gave me a good morning but then by early evening I was not well at all, and this is actually a more important time of day for me, usually, than earlier. So after some adjustment I have been taking a dose at 2 am and another at about 2 pm. Today that will be 4 in the wee small hours and 2.5 when I tear myself away from this computer.

The question is, am I doing something really stupid to my poor adrenal glands by doing this? Looking at my calendar I see I did taper off the daytime dose a few weeks ago and induced another flare. But for some reason I think we aren't supposed to have a constant dose of pred in our bodies.... ??? This has been going on for approximately 2 months, until checking just now I'd no idea it had been so long!

Uglow profile image
Uglow in reply to HeronNS

I will speak to my Gp and pharmacist tomorrow see what they have to say. Thank you

HeronNS profile image
HeronNS in reply to Uglow

I hope they agree to let you try. A lot of people have done this and as we are on longterm pred and our adrenals have stopped producing cortisol anyway I don't think it matters so much at the dose you are on. When we get lower and want to prod the adrenals back into action I believe it is advised to return to morning only.

Uglow profile image
Uglow in reply to HeronNS

Thank you everyone you make me feel more secure knowing you are all there. Thank you again.

Actually it’s more like foggy head I’m here but I’m not

Uglow profile image
Uglow in reply to Uglow

I get it just don’t like my life passing by

SheffieldJane profile image
SheffieldJane in reply to Uglow

At the risk of sounding like Pollyanna. I do find that I notice more and especially appreciate nature, birds, flowers, trees etc. So perhaps life isn’t passing us by, perhaps it’s right here and now and occasionally has a sweetness that we’ve never had time for before. I for one, kind of regret the return of the noise. 🌷Sorry that you are feeling so tired and foggy headed. I have grown to love my 90 minute nap after lunch, it helps everything.

I am so with you on this Jane! I too look forward to a read after lunch morphing into an hour or so's sleep.. I also agree with you (boring isn't it?) about appreciating the natural things around us ; the light around 5 pm on our Island (Tasmania) right now in Autumnal mode is MAGIC. But I was born in Yorkshire (Strensall, near York) so I can relate to "Sheffield"! Your comments are always so positive and encouraging to the rest of us on this wonderful forum - keep them coming!

Just a lovely reply and so very true. Thank you. The ‘like’ button ❤️doesn’t seem to work!

HeronNS profile image
HeronNS in reply to autumnlass

I've been having that like button problem off and on for 2 days. Also at first it doesn't confirm who you've been relying to. Have to "refresh" the page.

Your really are an inspiration to us all, always a positive outlook with very good advice as well.🌹

I have actually quite enjoyed this last year being able not do anything and just relax and not to have to make an excuse because I “don’t feel well “

HeronNS profile image
HeronNS in reply to Uglow

Oh yes, definitely a pred side effect!

Joanbill13 profile image
Joanbill13 in reply to Uglow

Me too it’s horrible

I never felt well on Pred and needed a two hour sleep every afternoon to be able to function in the evening. Every day had to be planned around my sleep. I finally felt a bit better around 10mg.

Pred made me feel like a zombie at first.. I started on 15mg taken in the morning. Two hours later it kicked in and I felt really drugged. I changed to enteric coated pred and took it in the evening. It is absorbed more gradually and it didn’t matter so much if I felt tired at that time. I am now trying to reduce from 5.5mg to 5mg and am really fatigued at times but it is a different type of tiredness due to my adrenals having been asleep. Hope they wake up soon!

May be try a couple of short naps during the day?

PMRpro profile image
PMRproAmbassador

Have you read all of my fatigue post? Links as well ...

healthunlocked.com/pmrgcauk......

I must be unusual in that pred doesn’t make me feel tired - although the polymyalgia definitely does.

I’ve recently reduced my dose to 12.5mg/day but before that, after about 6 weeks at 15mg/day I felt better than I had in years. On 12mg/day I am once again feeling exhausted in the late afternoon, especially after a morning at work. I feel like the bunny without the Duracell batteries!

Time and task management really helps. I make sure that my days are organised so that I can sit quietly, reading a book or watching television, for an hour or so and my husband cooks supper on days that I know I’m likely to feel grotty eg the day after methotrexate.

Whilst there’s nothing wrong with Pollyanna, I think that my approach is more Mother Julian of Norwich/zen. Mother Julian said (amongst other things) ‘this too will pass’ so I try to accept that I can’t fight the tiredness. It’s not great but it is my life - I try to find the things that are positive as it seems a waste of my life not to enjoy it. Perhaps there is a little bit of Pollyanna too!

I hope that you start to feel better soon.

I love that.

My sister died when she was 41. I can’t claim that I’m trying to live for her too or that I live every day as if it were my last but I think that it has affected my appreciation of my life.

PMRpro profile image
PMRproAmbassador in reply to NorfolkEnchants

My husband had cancer at 42, he shouldn't have survived it. It has certainly put other subsequent things firmly into perspective!

I’m pleased that you have had extra time with your husband and hope that the knock-on effects of his cancer and treatment haven’t been too debilitating.

I’m on 17.5

PMRpro profile image
PMRproAmbassador in reply to NorfolkEnchants

Catching up now but inbetween it was pretty good. We have been very grateful.

It was when I hit 6mg when I did not know what had happened to me, I was just zonked out!

If the tiredness hit when reducing, I would suggest that it is an effect of reducing your steroids rather than a side-effect of the steroids themselves.

(Which may be what you were suggesting, but that for you it was at 6mg rather than my 12.5mg. I’m hopeful that as my body gets used to the lower dose I will once again feel as fantastic as I did on 15mg.)

No it was not the reducing, it lasted for weeks. I have never had fatigue like it. I am blaming the adrenal glands. I had fatigue problems with the PMR but not reducing pred. Also if I overdid things I could get knocked out with fatigue too.

Hi. If you are on higher doses of prednisone and have developed a “moon face” at all, consider sleep apnea as a cause of your fatigue. Are you snoring? Consider a sleep study. The treatment can be cumbersome, but if it works, it can be a game changer with respect to fatigue.

Uglow profile image
Uglow in reply to USAGCA

I sleep well as I use cbd too

I have found the fatigue to be one of the worst symptoms.

I always assumed it was the pmr that was making me feel tired rather than the steroids but a daily nap really worked for me. I found it hard at the beginning but guided meditations really helped

The overwhelming fatigue is truly a major problem ... isn't it? Lots of interesting comments. From my prospective of being off prednisone for a year, I can say it is gradually getting better.

I was a person who enjoyed "vigorous" exercise. The greater the challenge the more I enjoyed it. I have a problem with walking mostly because I would rather be running.

I still get a sense of accomplishment after completing a strenuous activity. However, strenuous is now only a fraction of what it used to be. I try to accept what little I do and try to build on it. My physical therapist, who has become more like a personal trainer, wanted me to try two sets of 20 push-ups as compared to the two sets of 15 push-ups that I was getting used to. I prevailed over the challenge but it wasn't easy. Afterwards I had an overwhelming need for sleep.

I'm pretty sure it is an adrenal problem even though my cortisol level is finally into the higher end of the normal range. It seems like my adrenals still aren't able to provide the surge of cortisol when I need it. My endocrinologist said my levels have been "adequate". My guess is that my cortisol level was adequate for minimal activity and low stress. Covid has certainly provided minimal activity and arguably lower stress as some have suggested.

I can recall the surge of energy when I first took prednisone. In my early days of PMR, I confess to increasing my prednisone dose in order to have more energy for hiking while on vacation. Over time, I think the body has a way of compensating for the excess cortisol floating around in our bloodstream. Then, a person loses that energized feeling.

The thing that I am certain about is that the adrenals don't recover quickly. After 12 years of prednisone, I'm told that I was lucky that my adrenals have recovered at all. To my knowledge, only prednisone could have caused adrenal insufficiency so I can't blame PMR.

Now, if I could figure out a good explanation for the shortness of breath. I think my heart has recovered from the left ventricular hypertrophy (LVH) as a result high blood pressure. I was told that my body would clean up the mess after the unprovoked multiple, bilateral and extensive pulmonary embolism. The only thing left to blame is deconditioning and that too seems to be improving as I lose the excess weight.

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