So whats happening here???: My first week of... - PMRGCAuk

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So whats happening here???

jaycee444 profile image
14 Replies

My first week of treatment is like this:-

Monday - Dr prescribes 15 mg Prednisolone together with Omeprazole daily for 3 weeks initially. Take pills as soon as get home. Within hours am pain free.

Tuesday. Wake 5am with bit of soreness in shoulders but certainly nothing like the original. No real stiffness. Take pills after 7.30am breakfast and within a couple of hours am pain free again.

Wednesday - same as Tuesday with one exception. Tell Dr am having problems with the Omeprazole. She prescribes Gastro coated Prednisolone which I collect.

This (Thurs) morning.... my first morning with the coated tabs. Woke 4am with some shoulder pain again and thinking that the coated tabs would take longer to kick in decided to take them there and then together with some thick greek yoghurt. Went back to bed for couple of hours then up and about. Its now just over 6 hours later and I am still in pain. Should the coated pills have taken effect by now or do they take that much longer?

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jaycee444 profile image
jaycee444
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14 Replies

They do take longer but i have found them to be as effective. On the days when you felt good what did you do? I suspect you may have overdone it and have delayed onset muscle soreness (doms). You need to rest if you had a busy day. Otc pain killers will help doms.

You could try taking pred before you sleep or at 2am. That way when you get up they may have kicked in. Tbe main thing is they worked so if you PACE yourself and manage your spoons you.might find you reduce symptoms more.

Slowdown profile image
Slowdown

Hi jaycee444, I find the coated pred take between 6-7 hours to kick in so I split my dose to cover the whole 24 hours (theoretically). I'm on 8.5mg so take 6mg at 7.30 a.m. and 2.5mg around 9.30 p.m.which works for me. Everyone is a bit different, run it by your GP if you're anxious about splitting the dose.

SnazzyD profile image
SnazzyD

Hello, I just have GCA but did find that the absorption of coated Pred to be greatly affected by food, especially fatty food. For this reason I did not eat for at least 2 hours after taking the dose to give it a head start and no more more than a small snack an hour before, ideally 2.

Soraya_PMR profile image
Soraya_PMR

Coated takes me 4+ hours to get in my system. Therefore I take them at bedtime (10pm-12 midnight).

If I take them at 8am I’m still stiff at midday.

I do believe that you need the steroids IN YOUR SYSTEM before the morning rush of cytokines. So by taking them at 4am (already with shoulder pain) you missed that boat. Then IME the steroids have more work to do because the inflammation is grabbing hold again. Plus the coated pills are a more gradual release, being absorbed further down your gut, whereas plain is more ‘instantly’ released and blood levels have more of a peak than a gradual rise. You probably just need to fiddle around with your timings, but don’t fret, coated are effective when you get it right.

Plus as others have said, overactivity is a pitfall most of us experience! Even ‘normal’ activity is too much at the outset, our muscles need to rest, recoup and recover a bit first before exercise takes any place on the agenda. (Says me who tied bean poles the next day 😂 I could lift my arms and I was jolly well going to!!)

PMRpro profile image
PMRproAmbassador

In some people the gastro-resistant sort can take up to 7 hours to work - they are not absorbed from the stomach but further down the gastrointestinal tract and food of any sort can slow things down. The peak level achieved in the blood is also lower - so at first you may need a higher dose to get a high enough dose to relieve the inflammation.

If it were me, I would try ranitidine instead of the omeprazole with plain pred (do you really need it at all? Lots don't.) or taking the gastro-resistant before bed - others do and it is working by morning.

But as has been said - did you try to catch up because you felt so well the day before?

powerwalk profile image
powerwalk in reply to PMRpro

Would you mess up your adrenals more if you take the pred at night? Wouldnt mind trying it. But dont want to make a bigger mess of my, i suspect, struggling adrenals.

Soraya_PMR profile image
Soraya_PMR in reply to powerwalk

I believe endo’s have said to take it in the morning when you reach the low/stimulate adrenals phase. This is to replicate the normal cortisol release (but if we took that literally we’d take a smidgeon early pm too)

I did try to move to a morning dose as I approached 5, but it simply didn’t work for me, I don’t want to struggle all morning. Getting achey and stiff towards bedtime is more acceptable to me as if it’s bad I can just go to bed.

During the ‘5.9’ years though I don’t think it’s going to make a lot of difference. Our adrenals/HPA potentially stop working at dose one, although could probably pick up pretty quickly if pred was stopped. But from 3 months or even less, our adrenals are twiddling their thumbs and aren’t going to easily jump back into action. I think higher doses and longer terms will affect this more than lower doses over shorter terms, and then add in our individual peculiarities and no one can predict anything!

Soraya_PMR profile image
Soraya_PMR in reply to powerwalk

And..... I TAKE the pill at night, but it’s not RELEASED til early morning.

Had I stuck at a morning dose I would have had to increase it. Back to bedtime and was able to maintain on same dose.

PMRpro profile image
PMRproAmbassador in reply to powerwalk

Taking 5mg pred in the evening supposedly suppresses the adrenal function more than 15mg in the morning at 8.30am. However - that is only really relevant for someone who is taking pred for a short time, a month or so, as that theoretically means the adrenal glands should recover without any problem when they stop. But we are going to be on pred for more like years and there will undoubtedly be suppression anyway - so in the meantime it makes sense to take it when it works best for you. It also makes sense to switch back to morning dosing when you get to the realms of 5mg or so. Taking gastro-resistant just before bed means it won't be in the system before early morning - so the same as taking ordinary at about 4am.

powerwalk profile image
powerwalk in reply to PMRpro

Oh right. Thanks.

I am on 6mg at the moment. From 9 to 6mg's i have always used a 5mg coated and up to 4mg uncoated. I can tell at 6mg that mornings take longer for me to get going at moment. Perhaps as i am only getting tbe 1mg straightaway now. As i dont usually go out until lunchtime i will leave it that way. But hospital and dr appts before 11am have me frankenstein walking there. I think they should see what i'm like for part of the day at 6mg!

Linny3 profile image
Linny3

I have been on rayos for over a year. I tried all different times but what works for me is to take it all at bedtime. My mornings are so much better than taking it in the morning. The only time I change it up is when I need a 1/2mg. dose. I then take the 1/2mg of regular prednisone in the morning.

Good Luck

It takes a lot of trial and error before you get it right.

PMRpro profile image
PMRproAmbassador in reply to Linny3

There is no question with Rayos - it is designed to be taken at 10pm, it says that in the documentation very clearly. If you don't take it at 10pm with food for release at 2am you might as well save the considerable extra cost and use plain pred.

jaycee444 profile image
jaycee444

Thanks for replies. I guess I am lucky in as much as even though my pain lasted longer this morning it certainly wasnt the unmanageable pain that I had been in before and was easily copable. Was just surprised and a bit panicky thinking the coated pills were not going to work. Tab instructions say take after breakfast but I can see the reasoning for taking them at night. My one fear is that I wont be in the place Dr wants me to be in three weeks when she wants to start reducing gradually. I know Im not on a high dose but would still like to be able to bring it down. I suffer from Ulcerative Colitis as well so am dependent on time released maintenance medication for that too:( Not content with one Auto Immune problem my body has thrown another at me. Happy days!!!!

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