Timing for Prednisone

[Plantingwithfaith]

I have been taking my Prednisone in the morning and would like to switch to bedtime if it won’t interfere with sleep. I now take 10mg and I am using 15mg Melatonin before bed. This is for GCA. Any advice?

[DorsetLady PMRGCAuk volunteer]

Hi,

Not sure you should be taking melatonin with prednisone - see this excerpt from mountsinai.org

"Steroids and immunosuppressant medications. Melatonin may cause these medication to lose their effectiveness. DO NOT take melatonin with corticosteroids or other medications used to suppress the immune system."

Have you checked with your medical team?

Why do you want to change timings, Pred can cause more issues sleep-wise taken at night.. certainly for some people.

[Plantingwithfaith in reply to DorsetLady]

Wow thank you my dr never said anything!

[DorsetLady PMRGCAuk volunteer in reply to Plantingwithfaith]

Many doctors aren’t very good with supplements-always best to check for yourself …

You didn’t say why you wanted to change times though…

[Plantingwithfaith in reply to DorsetLady]

Just to reduce the time I feel the dizziness and nausea from the Prednisone. How about Tylenol PM for sleep?

[DorsetLady PMRGCAuk volunteer in reply to Plantingwithfaith]

ok dizziness and nausea good reason…is this something new though, or have you had it all the way through?

Tylenol is okay….

[Plantingwithfaith in reply to DorsetLady]

all the way nothing new just very sensitive to prednisone good Tylenol it is . Thanks

[Plantingwithfaith in reply to DorsetLady]

If my blood work has been good do you think I have done much damage with the melatonin?

[DorsetLady PMRGCAuk volunteer in reply to Plantingwithfaith]

I really don’t know -but I doubt it. It’s just that it affects how well the Pred works - and since that varies from person to person very often it’s probably difficult to quantify. But if you have felt okay -and bloods haven’t been an issue, then the Pred has been keeping the inflammation under control.

[Joseph14612 in reply to Plantingwithfaith]

I had help with sleep with Trazadone, or Benadryl....I also use THC/CBD gummy bears 10 mg at bedtime.....Doc said don't use Benadryl too much because it can cause memory loss....every one reacts differently, but this has worked for me most of the time....I have been on 60 mg pred., for 5 months, currently on 40 mg with Actemra started 2 days ago....I'm in the US. I take the pred., first thing in the morning because at night, I doubt if anything would help me sleep.

[Plantingwithfaith in reply to Joseph14612]

Thank you all so much it just proves you have to be your own advocate. So glad you guys are there.

[Jane424 in reply to Plantingwithfaith]

I take mine - 7 mg - at abut 3 am. It doesn't affect my sleep. I have it in a piece of banana together with a pepcid beside my pillow and when I turn over at around that time, I just take it. It works really well for me. Hope you find a solution.

[piglette in reply to Plantingwithfaith]

Pharmacists are infinitely better at drugs and supplements than doctors. I heard that on average a GP prescribes around 20 favourite drugs! Pharmaceutucal companies assume the GPs read the literature about drugs, I am coming to the conclusion a lot of them have lost the ability to read!!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

…and speak in some instances 🤔

[piglette in reply to DorsetLady]

🤓🤓🤓

[PMRpro Ambassador in reply to piglette]

And are hallucinating if todays news is anything to go by. Doctors say there is loads of penicillin, the pharmacists have looked on their shelves and say no there isn't ...

[PMRpro Ambassador]

First of all - it isn't recommended to take melatonin when on pred because it can reduce the effectiveness of the pred

mountsinai.org/health-libra...

which means you possibly have had to take more pred than you really need to control symptoms but it will all even out in the long run

[pata63 in reply to PMRpro]

Well that's interesting about the Melatonin. I was doing a second gut microbiome adjustment protocol for two months which included Melatonin. I started in Mid August, and it included 6mg of Melatonin each night. Before the protocol I had been on my steady 5 mg of Pred for 2022. But I had a flare which had started a few days before the protocol. I had raised my pred to 10 mg and then 20mg after a GP consultation. Maybe that's why I had to go back up to 20mg which is where I started in April 2019! My GP had me start tapering from 20mg after just a week on that high dose as my symptoms were gone and my bloods were good (CRP 3). I finished the protocol Mid October and stopped Melatonin. Since mid October managed to be on 5mg with no problems. I've even started a DSNS taper to 4.5mg

I've finished 1 day old dose, 3 days new dose

and tomorrow I move on to

1 day old dose, 4 days new dose

So far so good. I'm monitoring my symptoms very carefully as I've come unstuck trying to get to 4.5 in previous years (2020 and 2021).

[tempusfugi in reply to pata63]

It's an interesting point about other drugs affecting the effectiveness of Pred. I take 300 mg of Epanutin (Phenytoin) and 150 mcg of Thyroxine, daily. I am sure I read somewhere that Epanutin can reduce effectiveness and have mentioned to my local surgery and to the Rheumy, both of whom seemed to dismiss the idea.

Meanwhile, I have been finding it difficult to reduce from 10 mg Pred. I had tapered to 8 mg recently but, in discussion with Physician's Associate (or whatever), have been put up to 10 mg again, owing to pain increasing at back of knees (synovial fluid?) plus hands, wrists and arms experiencing pins and needles and pain, particularly in wrists. Today I am starting to taper again to 9 mg, following a month on 10 mg where pains etc have lessened. I don't want to be in a position where I am 'upping and downing' the Pred like this because I know it's not a good idea.

Just to add that my surgery is referring me to Rheumy again because of the above. Also CRP is at level 8 - V slowly decreasing.

[PMRpro Ambassador in reply to tempusfugi]

I have no objection to them not knowing - what I do hate is their refusal to acknowledge realities and look it up. This is only a very small study - but the rate pred is cleared from the body is almost doubled - therefore you need more pred to get the desired effect.

pubmed.ncbi.nlm.nih.gov/923...

That is what is said on most of the drug interaction checking sites ...

[tempusfugi in reply to PMRpro]

Thanks for your comments, PMRpro. This has really made me think. I remember reading on the Package Leaflet for Pred when first diagnosed, that you should consult your Doctor if taking Phenytoin - it was fairly high on the list relating to other medicines and Pred. As mentioned above I spoke to the clinician, the Rheumy and eventually the pharmacist, none of whom seemed concerned. Throughout my life on medication, I have often found this to be the case. To be fair, on this occasion, the pharmacist did tell me to take the Phenytoin 4 hours after the Pred.

The usual starting dose of 15 mg had no effect on the original grinding pain of PMR, thus I started on 25 mg, however reducing below 10 mg seems hard. I guess I didn't feel like fighting my corner with experts at the beginning of my PMR journey a) because I felt too ill at the time and b) because I respected their judgement and, frankly, was nervous to do so.

As so many have commented, this forum is a godsend to sufferers of PMR. I have found that it gives me the confidence to be proactive when discussing the condition. It's thanks to you and others with so much experience that makes that possible.

[PMRpro Ambassador in reply to tempusfugi]

You needed a greater dose to get an effect in the first place - and your 10mg baseline is more like 5 or 6mg for others. It is the reason the dose needs to be titrated - but they are so fixated on absolute numbers and so ignorant of the potential interactions.

[Miacaro45 in reply to pata63]

My doctor said never to take more than 1 mg of Melatonin for longer than 2 weeks because it messes up with your body. He also said not with steroids. The effectiveness of the steroids is reduced.

[Hidden]

Hello,

I found that taking my steroids in the evening interfered with my sleep. Reactions may be different so you may be alright. The best thing is to try it.

[micpenn222]

Prednisone should ideally be taken in the morning as this mimics the bodies natural peak release of cortisol. Split doses tends to cause what they call " adrenal suppression " where by the adrenals are not waken up to start producing cortisol naturally again. At initial higher doses it may be ok, but later on at, after weaning to lower doses, it would matter more.

[PMRpro Ambassador in reply to micpenn222]

Not until you are down well below 10mg, above that longterm the adrenals are suppressed anyway, and then it depends n what time the second dose is. The crucial point is the level of steroid in the blood at about midnight so if you take the bulk of the dose, about 2/3 in the morning and the rest late enough to extend the effect to the next morning - taking 2-3mg at lunchtime or soon after often works and will result in a very low amount by midnight. The ideal time to take pred in PMR is 2-3 am - it is in the system by 4am which is when the inflammatory substances are released on the body so they never get a hold.

Doctors go on about "mimicking natural peak release" and taking pred at 8-9am - which is rubbish. The peak is about an hour after waking, 7-8am. If you don't take it until 8am, the peak in the blood is 2 hours later in the case of prednisone, a bit earlier in the case of prednisolone as it doesn't have to be processed by the liver. And taking pred at 9am means there is 4+ hours of inflammation to deal with there need not be and you don't feel human until lunchtime.

[Plantingwithfaith in reply to PMRpro]

Thanks great information you would think we would be told some of these things by our Drs mine was not even worried about the Melatonin! But good news from blood test and now on to 9 mg and no melatonin!

[PMRpro Ambassador in reply to Plantingwithfaith]

They don't know ...