Tiredness

[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

[Gyspysmum]

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 in reply to Gyspysmum]

I can’t seem to shake it off

[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 in reply to Uglow]

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

[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 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 in reply to HeronNS]

Ahhh thank you

[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 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 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 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 Ambassador 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 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 in reply to HeronNS]

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

[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 in reply to HeronNS]

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

[Uglow]

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

[Uglow in reply to Uglow]

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

[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.

[Louisa1840 in reply to SheffieldJane]

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!

[autumnlass in reply to SheffieldJane]

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

[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.

[Hirwaen in reply to SheffieldJane]

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

[Joanbill13 in reply to SheffieldJane]

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 in reply to Uglow]

Oh yes, definitely a pred side effect!

[Joanbill13 in reply to Uglow]

Me too it’s horrible

[SnazzyD]

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.

[Rache]

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!

[Daffodilia]

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

[PMRpro Ambassador]

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

healthunlocked.com/pmrgcauk......

[Hidden]

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.

[SheffieldJane in reply to Hidden]

I love that.

[Hidden in reply to SheffieldJane]

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 Ambassador in reply to Hidden]

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

[Hidden in reply to PMRpro]

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.

[Uglow in reply to Hidden]

I’m on 17.5

[PMRpro Ambassador in reply to Hidden]

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

[piglette in reply to Hidden]

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

[Hidden in reply to piglette]

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.

[Hidden in reply to Hidden]

(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.)

[piglette in reply to Hidden]

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.

[USAGCA]

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 in reply to USAGCA]

I sleep well as I use cbd too

[Greensleeves]

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

[Arflane97G]

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