Extreme fatigue when tapering: At the weekend I... - PMRGCAuk

PMRGCAuk

14,109 members25,673 posts

Extreme fatigue when tapering

Marijo1951 profile image

At the weekend I followed my rheumy's instructions and reduced my 15 mg prednisolone to 12.5 mg. I was scared that after several months of being pain-free, I would start to experience pain again. This hasn't happened, but instead I have become incredibly fatigued - even more so than usual, which I thought was impossible. I just want to doze off all the time - I sat on the sofa at 10 this morning to listen to 'Woman's Hour' and woke up at 11.15. I put my head down on the table after lunch and slept for 45 minutes.

Please, has anybody else had a similar response when tapering and do you remember how long it lasted?

33 Replies

Hello I get this every time I reduce from about day 1-4 for about 3-5 days, to varying degrees. I have always had to sleep in the afternoon and 18 months since starting on 60mg and being down to 4/3.5mg I still do.

That happens to me all the time. I am listening to the radio and think I really want to hear that bit and the next thing I know I have missed it!! The same happens with TV.

Marijo1951 profile image
Marijo1951 in reply to piglette

I watched the last episode of 'Better Call Saul' on Netflix and was surprised to find out later that it was the final episode of the series. I watched it again and managed to stay awake, realising that I must have slept through much of it before.

piglette profile image
piglette in reply to Marijo1951

I tend to tape everything now except the news, so I can rerun the bits I miss, it can take ages trying to remember what I have seen though!!

Marijo1951 profile image
Marijo1951 in reply to piglette

I think you're wise. Mind you, I watch far too much TV so maybe I should just give up and be healthier.

piglette profile image
piglette in reply to Marijo1951

It is one way of watching less TV on the other hand, just sleep through it!

Hollyseden profile image
Hollyseden in reply to piglette

Snap! 😄

That is snap to falling asleep watching TV. Reply came up out of sequence, I think

I wrote the above about 5.30 pm yesterday. It's now 5.40 am and I've been awake since 1.18 and unable to get back to sleep - after yesterday hibernating on and off throughout the day. How strange to be so topsy-turvy. Still I watched two very interesting documentaries on You Tube - one about the first railway murder in 1864 and the other about Egyptian mummies that have been found to contain cocaine and nicotine, giving rise to speculation about trade between Egypt and South American before Columbus. With these wretched ailments one just have to go with the flow and accept whatever benefits arise. I've certainly improved my general knowledge with my nighttime telly watching.

bunnymom profile image
bunnymom in reply to Marijo1951

I switched to an early morning shift at work for a time as I was up at 4 am anyway! Go with the flow.

Marijo1951 profile image
Marijo1951 in reply to bunnymom

Yet another hero who works while suffering! At least you were able to match your shift to your body clock for a time.

bunnymom profile image
bunnymom in reply to Marijo1951

Yes but that was last year and now I'm retired. Reduced my hours and took sick time then left. My new normal is I can't work. I can be your retired hero lol!

Marijo1951 profile image
Marijo1951 in reply to bunnymom

I had 4 years of retirement before I was hit with GCA/PMR. If I'd known what was going to happen, I would have done far more in those 4 years!

Every time I reduced dosage I was exhausted. The last 10mg for me was like being hit by a truck extremely fatigued and sore. I hope you have a better experience. I think many people with this disease experience this. It can be disconcerting and scary, but a side effect from lowering Prednisone. Good wishes for you!

Marijo1951 profile image
Marijo1951 in reply to Dream21

Thank you. One of the benefits of this forum is finding out that one is not alone or a complete freak. Well, after dozing all day yesterday and then waking up at 1.30 this morning, I'm now ready to go back to bed....

Yes and lasts all day with the dozing off and absolutely dead and cannot be woken up

Marijo1951 profile image
Marijo1951 in reply to Suffererc

I've arranged to meet a friend for lunch tomorrow. She's a bit worried about having to carry me home, so we're finalising the arrangement in the morning. I'm determined to be okay as I'm so bloody fed up of being an invalid. It's 10.38 now and I've snoozed for an hour... oh dear. I'll force myself to stay awake for the rest of the day so I can sleep tonight.

I feel permanently exhausted. I am down to 5 mg and can fall asleep sitting up for a few minutes after work but often have trouble falling asleep at night and staying asleep. I never felt this tired before prednisone. I too hope it’s temporary.

Marijo1951 profile image
Marijo1951 in reply to Kath567

You're one of those admirable people who hold down a job while suffering. The only good thing I can say about having these ailments is that at least they didn't hit me until I was retired. I don't believe I could have managed to work with them. I felt extremely tired in the 4 months between getting the first symptoms and being diagnosed. The pred relieved me of the terrible pain and stiffness, but not the fatigue. Then of course when taking pred I was hit by insomnia. I do hope that it isn't back on a regular basis. I shall try to stay awake until 11 pm, take half a Nytol and hope to sleep through the night. Good luck to you and thank you for replying.

Kath567 profile image
Kath567 in reply to Marijo1951

Yes, the insomnia is brutal but thankfully not every night. Even if I do sleep I am still tired. But otherwise I feel great and so relieved to be out of pain. Hope you get a good nights sleep.

Marijo1951 profile image
Marijo1951 in reply to Kath567

Thanks Kath - well I did sleep well last night and feel a lot better this morning.

must admit don't do much that day, can't stay awake. But definitely don't drive. The only time I five in to PMR

Marijo1951 profile image
Marijo1951 in reply to Suffererc

I never learned to drive but, if I were a driver, I'm pretty sure I would have given it up by now.

Hi Marijo1951

I’m not surprised that you feel so fatigued. 15 to 12.5 is a big jump. I only ever reduce by .5 and even then get the fatigue. The DSNS method is brilliant (dead slow nearly stop), giving your body time to get used to the changes. I’m down to 5m, much to my GP’s delight. It means I’ve halved the cost of my medication. I take it in 5m phials which means if I’m taking 5.5m I have to use two phials. They are forever trying to get me to change to soluble tablets. I tried them for three weeks and all the symptoms were back; weak limbs, giddy head, foggy brain, pains in arms back and shoulders. The reason they want me to do that is because the soluble tablets are half the price. I’m afraid the NHS is being governed by the accountants and they only think of the bottom line. The GP did put me back on the Pred solution but would only give me 1 month’s supply. When I asked for it to be on a repeat prescription he said he wasn’t sure if he could because there is a body of people that make those decisions and they could tell him, ‘No’. Could these be the accountants do you think?

Well, it certainly won't be anybody who puts the patient's well-being first! My GP was quite sharp with me the last time I had antibiotics as I'm allergic to penicillin (not my fault!), and the alternative was more expensive. He's not usually unreasonable, so I can only assume that doctors are under great pressure to prescribe the cheapest options. But if it's correct as I've been told that each ordinary pred tablet costs 2p, then your equivalent costs 4p which is hardly going to bring the NHS to a halt. It's a bit sickening that you should be made to feel guilty for something you can do nothing about.

Yes, I know the slow methods are recommended by Professor Das Gupta and by knowledgeable people on this forum. My rheumy is nice but a bit more standard in her approach. For the first time I was given tablets with a gastro-resistant coating which can't be cut in a pill cutter. I think she suspected I'd try messing with the dosage. Certainly when I get to 10 mg per day I shall insist on lowering very gradually.

PMRpro profile image
PMRproAmbassador in reply to Gaycreasey

The figure I saw some time ago in a circular from one health board was a 30x differential in price for soluble pred tablets versus ordinary ones and in 2015 Barnsley said 40x:

barnsleyccg.nhs.uk/CCG%20Do...

The cost of liquid pred will be even higher. It was calculated that switching children from soluble pred to ground up tablets represented a saving of over £44,000 per year for a single Midlands hospital:

adc.bmj.com/content/101/Sup...

Yes, you have to do what’s best for you and your body. The problem is that you have to do all the fighting and struggling when you’re feeling weak and tired ( or should that be sick and tired?) I did tell the last person who rang me from the surgery that I was managing this condition, not them! Not a popular person down there at the moment I suspect!!

I know what you mean. You feel like reminding them to have a bit more respect as they wouldn't have a job if people like you weren't ill.

Yes, the fatigue seems to be part of it all. I too take a reading rest or snooze in the afternoons. It seems to help with giving more energy towards the evening.

I know. At 2.30 I had to give in and go to bed for a couple of hours...

Fatigue and Sleep-Less nights have been common for me over my 5 years of PMR.

Fortunately, I am retired, so my schedule is flexible...meaning I can take a nap and occasionally two naps during the days following no night time sleep.

When I lie down, I make it an practice to set my alarm clock for 1 hour. Then get up-and start my day again.

As for fatigue, .....I learned to stop and take a brief rest when fatigue hits. Often I only need a few minutes (15-30), to refresh, and be able to resume my activity.

Sometimes fatigue is so severe that I can do very little, so I just stop.., knowing it will pass, then life goes on.

It gets better... so your task is to learn how to cope with the topsy - turvy sleep needs.

Kind regards, Jerr

That sounds a lot like my daily life! You're wise to set your alarm when you have a sleep during the day. I forgot yesterday and slept for nearly 3 hours. I woke up feeling disoriented, unrefreshed and very brain fogged...

Ugh...I've done that also, and felt like chunk of wood the rest of the day. Thus, the alarm clock❣️

You may also like...