Reducing tip to try?: Was feeling quite lacking in... - PMRGCAuk

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Reducing tip to try?

suzieh profile image
16 Replies

Was feeling quite lacking in energy and not great first thing in the morning.... Had to take my dose of pred and then stay in bed laying down for at least 45 mins. before I could get up and feel ok. Noted on here a few people wake at 4am to take pills so they avoided the am slump. Didn't want to wake in the night for this, in case it became a habit, so decided instead to try taking 1 mg of pred before bed, and the rest when I woke in the morning. Seems to be working well for me so far as I am feeling much better on waking and certainly less wobbly. Haven't noticed any difference in how I feel later either. Now only on 4.5 mg in total, - reducing very very slowly is still going well. Hope this might help others who don't feel great in the morning.

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suzieh profile image
suzieh
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16 Replies
Loco99 profile image
Loco99

Thank you suzieh, I will give it a try, I've been experimenting with dosage times because I keep waking up in pain at about 2am and then I can't get back to sleep. I'm on 6mg which I usually take at 7am. I also take Arcoxia, Crestor, an acid reflux tablet and vitamin D. I wish I didn't have to take so many tablets.

suzieh profile image
suzieh in reply to Loco99

Definitely worth trying! Some people report steroids taken late in the day keep them awake so keep the bedtime dose small. I don't like taking tablets either but much better than feeling ill or in pain. We have to be grateful we have access to them as what would we feel like without? My PMR pains were dreadful pre diagnosis - as soon as I started the pred the pains diminished and I could cope again.

trish29 profile image
trish29

Hi suzieh ..Happy Easter . thank you for the tip of a 1mg of steroid before bed . I will certainly give this a try . May I ask what would be the latest time you would take your steroid . I go to bed around 10pm and wonder if that would be a suitable time.. Anything to stop this sluggishness in the mornings and then I get it again at lunchtime . It certainly spoils the day and my families when they want to visit. Thanks trish29

suzieh profile image
suzieh in reply to trish29

Happy Easter to you too. We had family here and I was very busy cooking etc - felt fine, even though I am reducing ( did take a couple of doses of paracetamol when I felt a bit achey). Trying to put up with the low grade aches and pains to see how I go. Have lost my chubby cheeks look and don't want to go backwards now!

I think 10 pm would be fine to take a little of your dose. I take my 1 mg about 11 pm and then 3.5 mg when I wake up about 7.30am. Usually stay in bed for 45mins before getting up. Seems to be working for me at present? Let us know how you get on

pennyw profile image
pennywAdministratorPMRGCAuk team member

Hi Suzie - I have been splitting my dose since on 5 mg (now on 4.5 mg - and 4 mg once a week) 2.5 in the morning and then 2 mg late in the day. This also works better for me and helps me have a much better sleep. In Kate Gilbert's book she talks about how splitting her dose made it better for her too.

Good luck everyone.

Penny

suzieh profile image
suzieh in reply to pennyw

Have downloaded Kate's book but haven't read all of it yet - pleased she suggests splitting the dose as it certainly seems to be working for me at present. Have meant to let you that I have also been following the anti inflammatory diet you sent me. I was very strict for the first 2 weeks and felt good - bonus I lost 4 lb too! Since then I have been following it for most of the time...... Sometimes eg on Hol and when eating at friends I have waived some of the rules; at home I can do it easily. I am lucky as I like a lot of the permitted foods and am quite inventive. Have just bought myself a Thermomix machine which makes great fruit / veg drinks which I like for breakfast, lovely almond butter ( just pulverised nuts) and also fabulous soup in about 20 mins. I am so pleased with it! Was very expensive but I think I will use it every day. Goggle it if interested - they are not sold through shops in the uk- I bought mine after arranging a dem for myself and 4 friends.

pennyw profile image
pennywAdministratorPMRGCAuk team member in reply to suzieh

Hi Suzie .. Sounds really interesting and I will definitely take a look at the Thermomix machine. Great you have also lost 4lbs. I find it strange as I eat as much as ever but it does work when you stick to it.

Whittlesey profile image
Whittlesey in reply to pennyw

Yes, thanks Pennyw. and I also want to thank you for your recipes. They help tremendously and I think this diet, really helps. Thank you and Happy Easter ! wishing you health, Whittlesey

pennyw profile image
pennywAdministratorPMRGCAuk team member in reply to Whittlesey

really pleased to hear that Whittlesey. Happy Easter to you too.

Zane1 profile image
Zane1

I have been on PMR for about two months & had a devil of a time with side effects. Am now taking 17.5 mg & I take at about 4:30 pm with early dinner. For me it has been working well. No pain in the morning & the side effects either happen when I am sleeping or watching tv. Feel good & in the morning. I tried many other options, but so far this has worked best for me.

suzieh profile image
suzieh

Good to hear you have worked out a solution for yourself that works. Lucky that you are not kept awake at night as others who take an afternoon/ eve dose have reported. This time last year I was on about 12 mg.... Started on 20 mg the previous Dec down to 15 mg in 5 days ( Dr approved as I was feeling hyper on 20mg). Lucky for me no pain returned. Since then I have been reducing using the very slow method reported on here. Have only had one blip - flare just after Xmas. Looking back ... Not a good time to reduce when there is a lot going on! Only reduce when you feel good and you have blocks of time with no stress! Keep in touch!

dillydally1 profile image
dillydally1

I have started taking magnesium/calcium/vit d3,i take it about 6pm, it seems to help me sleep, worth a try

polkadotcom profile image
polkadotcom

Dillydally, you should have been prescribed Vit D/Calcium tabs when you were started on steroids. Prednisolone makes it harder for the body to absorb calcium and calcium also needs VitD to aid it. Most of us have been given Adcal or Calcichew and they should not be taken at the same time as Pred. (i.e. Pred for breakfast, calcium for lunch and tea).

If you are able to take these supplements during the evening you are lucky. I find if I take them too late in the day they leave me twitchy and unable to sleep, so mine are taken earlier on. I do also take magnesium following a routine blood test which showed I had low magnesium and potassium - the potassium is taken care of with extra bananas and apricots.

angalex54 profile image
angalex54 in reply to polkadotcom

Thanks for the info in your post-I have not been advised to take my Calceos at a different time from my Pred-so am currently taking both together. Also will ask my GP regarding splitting my pred, to take small dose at night as I'm finding I have to take my dose around 4.30 am, as I start work at 5.30 and am really not mobile until around 7am! I'm fairly new to this-was diagnosed June last year, put on just pred. Since Dec I was prescribed Calceos, and Alendronic Acid. I have 1 Zantac in the evening

Whittlesey profile image
Whittlesey

agreed. This sounds like a good way to take the prednisone. will try it. Thanks.

suzieh profile image
suzieh

It seems to be working for me - let us know how you get on

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