Concern over initial reduction when still symptomatic

I started 20 mg. pred in late sept. 2016, having been in severe pain since late July of that year.  I was on 20 mg. for a month.  My shoulders were the last to lose their pain and stiffness; in fact, I recall telling the rheumy that November that I still had pain in my left shoulder and upper arm.  It eventually got better but took a while longer, as I recall.  You may need to be in 20 mg. a bit longer to calm things down.  If you aren't sleeping, it's worth a try.  You said you still have inflammatory markers?  Your numbers are still high?  Mine went down almost immediately after starting pred.  

From what ive read here, 4:00 am is a good time to take pred...I don't myself because my sleep is very disturbed; many nights I just need to crash.  But if you're up anyway....

 

Ignore your rheumy's objection to taking your pred at 3am - just don't tell him!! Research found that 5mg at night suppressed adrenal function more than 15mg in the morning. That is a useful concept if you are going to be on pred for a couple of months - taking it at 8am, after the body has produced its spike of cortisol half an  hour after you wake. If you have PMR you are going to be on doses above 8mg for so long that you will have adrenal suppression anyway - so it makes sense to take the pred when it works best for you. And if you are awake at 3am that suggests there will be that spike before you even absorb the pred. And if you are awake at 3am - how is pred taken then going to cause insomnia the following night more than taking it at 8am? Another study found the optimal time to take pred to avoid morning stiffness is 2am - and a form of pred has been developed with that in mind. You take it at 10pm, it releases at 2am, the peak pred level is at 4am, before the inflammatory substances are released in the body, ready and waiting for them. And sorry - it isn't available in the UK on the NHS and there is limited availability in the USA (as it costs megabucks there).

I agree with Twopies - you need longer at 20mg. 

Karenfizz, I do not believe one should reduce their Prednisone if they are having any PMR pain. Also if you are getting less pain on your current dosage and get better then maybe you just need to stay on that dosage. If you are not getting less pain maybe an increase is needed. I split my dosage about 3/4 after breakfast and the rest at bedtime. I have no problem sleeping. Good luck on the rest of your journey. Stay positive and try to smile.☺️

To keep away the bad pain in the night I started to split my dose one third with bowl of natural yoghurt at teatime and the rest around 2am also after yogurt.  It worked like a miracle and I found that the pred actually helped me to sleep well. Not to sleep is the worst thing.  But you need to experiment what is best for you and do your own thing. I now take the smaller dose around 7.30pm after supper. I had to stay on 30mg for 6 weeks before reducing and that was before I knew about splitting from this valuable forum.  That was the very best advice which I didn't receive from rheumy or from GP.

I know Eileen got away with saying bullsh*t on here so I'll say it., too.

I was actually encouraged by my to take my Pred. at night when I complained that I didn't like the jazzed up feeling it gave me. Perhaps surprisingly it did not interfere with my sleep and when I reported that the change had worked for me the dear man said "I'll remember that for future reference."

So I'd second Eileen's suggestion.... just don't tell him.

Hey Karen,

I was worried about insomnia too but once I retired and cld allow myself to sleep in,  I tried a split dose: 3/4 at 4 am-ish and 1/4 after breakfast which is usually around 8:30 or 9 am. I get 2-3 hours sleep after 5 am and it’s that lovely deep sleep with lots of dreams. And I kinda like the 4:00 am head space too- good time to read, meditate, reflect. 

No problems falling back to sleep. No problems getting to  sleep  at 10 pm. Way less pain. Easier tapering. I was shocked but happy I gave it a shot.

Good luck! 

Hi

I found the first year difficult reducing the amount of pred. I also started on 20mgs, It takes time ,but you will eventually manage to reduce the amount, but do it at your own pace, it took me nearly a year to get down to10mgs after that I reduced slowly by 1mg per month and now I am off pred. 

It was really tough and at times I thought I would never get over this, I am still left with sore shoulders and legs are still a bit weak , I can cope with that during the day but sometimes need a couple of 

Paracetamol at bed time, I know everyone is different, but never give up , keep visiting your doctor if nothing is helping. 

Thanks everyone, I am finding this forum really helpful, as i think i will imminently be having the conversation with my GP over pace of reducing etc. Last night I tried the spit dose, 1/4 at 9pm and 3/4 at 4am; managed to sleep till 4am which is good at the moment and less pain when I woke so got back to sleep ok. Feel much more positive today 

 

That’s great Karen, now you are taking control of this horrible condition, it takes time and I think we all made the mistake at the beginning by trying to come of pred to quickly, good luck , keep fighting, you will beat this.