Just been diagnosed

[160916]

Hello i have been diagnosed in jan this year with gca. I started on 60mg of pred but been tapering down currently on 12.5mg .feeling alright except for tiredness and being up most of night and dozing during day.

[SnazzyD]

Hello,

You'll get more replies but I expect someone will ask what time in the day you take your Pred.

[SheffieldJane]

Hi and welcome to the site if this is your first post. Wow that was a fast reduction and you're ok!!!!

Snazzy is right, altering the time you are taking Pred. May solve the wakefulness. Or you could keep company with my newly born grandson who also believes that night is day.

I have found 10 mgs of Amitriptyline an hour before bedtime improved my sleep at night, I still get up a couple of times mind you.

I would be pretty pleased with myself if I were you. Long may it continue. I feel a bit stuck between 10 and 9 mgs in my reduction. It has taken me the best part of a year to get here from 20 mg. mind you, life has thrown a few curve balls and PMR loves stress.

[160916 in reply to SheffieldJane]

I take medication in the morning but will try taking later in day see if that helps. I think i have been very lucky that my doc caught my gca at the early stage although when diagnosed was in middle of daughters wedding and builders in. My doc said reducing quickly may not be ideal but any symptoms go straight back to him. And have regular check up at hospital and waiting for bone density test plus had eyes checked.

[SheffieldJane]

I think the earlier in the morning that you take Prednisalone the better according to the collective wisdom on here, but who am I to advise you? You're doing very well on your own. 😊

[160916]

I take early in morning round bout 6am as i am on other medication which i have to take thoughtout the day (heart medidication had heart attack 4yrs ago) was advised to leave large time gaps between dosages.

[Akino]

Welcome and 'congratulation' to the really speedy tapering process. It's good to read about the different experiences we all have to go through. I also was diagnosed with GCA mid January this year and I'm still on 60 mg and have the occasional temple ache and headache. Right now I'm pondering about how to proceed from here...see my Rheumy to up the dosage, or just go on with 60 mg. I'm going to have another CRP count today and will make my decision afterwards.

I take the Prednison early morning as soon as I'm up. My sleeping pattern is changing. Often I wake up between 2-3 am and stay up for 2-3 hours. A good night is the one I wake up around 5 am and get up and stay up, napping during the day of course. Fatigue is still my bodies biggest enemy. It creeps up in my legs and makes me lay down, hours and hours. But I can accept it better now.

Hope you're doing well and better every day. Keep us posted.

[PMRpro Ambassador]

Someone else found she couldn't keep awake in the daytime and bounced around all night. She switched her pred dose to late evening - all problems solved, good night's sleep and awake during the day which is helpful!!!

[160916]

Fatigue is the main thing with me too. I do get temple ache but not severe so will discùss with doc next appointment. Aches and pains but can live with them plus i feel well enough to try and get back to what i was before diagnosis. Sometimes i am not sure if aches pains are just my age (54) or gca or effects of medicines i am taking.

[Akino]

Me again. My CRP is down to 27. I'm glad. Another test in three weeks and hopefully further down.

PMRPro I wonder if I could change my timing for the Prednisone? Could I not take it early morning and instead lets say around 7 pm? Just to see if my sleep gets better? Would it be advisable?

What is your opinion? Thank you.

[Koalajane in reply to Akino]

I am only on 10mg for PMR but take my prednisolone with lunch and find I stay awake all day and sleep well.

[PMRpro Ambassador in reply to Akino]

No reason why not - the time to take pred is the time that works best for you. Others have taken their pred at night - sleeping no problem, side effects happened overnight, daytime sleepiness banished. Try it - you can always go back if it doesn't work.

And it is easy to start - take your morning dose one day, take the next day's dose that same evening at the time you fancy trying. See what happens. It might take a couple of days to settle down.

[Akino]

I'll open a new thread about timing. It's very interesting to hear about the different experiences.

[Roy46]

That's a very, very fast taper. Perhaps too fast, but if it works for you...

I started on 50mgs and it took seven months to get down to 12.5mgs, but with hindsight even that was too quick.

The perceived wisdom is that reductions should not be more than 10% at a time.