What is considered a safe amount

[Captinron]

What is considered a safe amount of prednisolone long term , I’m down to twelve but finding it hard to go any lower

[DorsetLady PMRGCAuk volunteer]

We usually quote that anything under 5mg is not producing any side effects - so in that aspect I suppose it could be considered “safe”.

But really you need what you need - so there is little point in trying to achieve a lower dose if it’s not controlling your symptoms.

Looking at your previous post I would say you have gone below the level you actually need - a tapering regime of 1mg a week is much too fast! You are never 100% sure that each dose is controlling your symptoms before you reduce again.

Can you remember at what level you felt really okay? If so, go back to that, stay for at least 2 weeks and then reduce every 3 or 4 weeks- not every week!

[Koalajane in reply to DorsetLady]

I have to say that even on 4.5 mg my blood sugars are still spiking. I know this from testing my blood which spikes between 1200 and 1600. It is not food spiking it because I miss out lunch.

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

Okay, thanks for that - as HeronNS said we are all different - so I think you may be one of the unlucky ones that still have problems under 5mg. Most patients don’t seem to.

[Koalajane in reply to DorsetLady]

Yes hope fully when I get down to 4 mg it will be better.

This is life

[pugrescue in reply to Koalajane]

are you sure blood glucose at 12-1500? Me thinks that is a mistake. Either in metric or american numbers this is impossible.

[Hidden in reply to pugrescue]

I think it was time....I think 12 to 4pm. I am probably wrong but you are right makes no sense otherwise.

[pugrescue in reply to Hidden]

soooo funny, of course you are right LOL. Gave me a good laugh anyway. I am testing blood glucose levels all the time as several of my pugs are diabetic. soooo funny

[Koalajane in reply to pugrescue]

Blood glucose rises between 12 o’clock and 4 o’clock in the apyernoon. It goes up to about 8 and then is back down to the 5 s by the time I eat my dinner

[Hidden in reply to Koalajane]

When do you take pred?

[Koalajane in reply to Hidden]

I take Pred at 8 a.m. with breakfast

[Hidden in reply to Koalajane]

That fits with the spikes that can be random and food can take 2 to 4 hours to spike depending on what you eat.

[Koalajane in reply to Hidden]

I eat a low carb high fat diet so at 11.30 my sugars are back to normal and then start to go up even though I haven’t eaten since 8 a.m. so I know it is the prednisolone. Starting to taper to 4 mg so might do the trick.

[Hidden in reply to Koalajane]

Me too but my blood glucose still has a high point at 12ish if I have breakfast between 8 and 9. It surprises me as I am on insulin. I have to test my bg to drive so have tracked it for a while. After a stroll for an hour or two I have to test to drive home and it's just dropping then.

[Koalajane in reply to Hidden]

It is strange isn’t it. How high does yours go?

Mine goes up to about 7.5 when I don’t have lunch. I stopped having lunch because the ophthalmologist said my macular oedema was a bit worse because of the sugar spikes. My hba1c is 40. That was before dropping the lunch so not sure what it is now as next appointment with diabetic nurse is not until November.

[Hidden in reply to Koalajane]

Mine can go into the 9s my fasting BG can vary too. 2 days ago 9.5, today 4.7. stress, heat, infections...I have learned over the years that various things can make it low one time and high the next. My hba1c is 55 which is considered good for circs. I was DX with diabetes in 2001. I was at 114 when I was at 15mg of pred.

[PMRpro Ambassador in reply to Koalajane]

More to the point to eat a non-carb snack surely?

[Koalajane in reply to PMRpro]

It is strange how your body gets used to missing a meal, I am quite happy not to have lunch as even with a non carb snack your sugars go up a bit.

[PMRpro Ambassador in reply to Koalajane]

Oh yes - I only eat lunch and dinner too.

[Constance13 in reply to PMRpro]

I only eat breakfast and lunch (which is actually 'dinner').

[PMRpro Ambassador in reply to Constance13]

Don't you eat Abendbrot at all?

[Purplecrow in reply to PMRpro]

Thanks for giving me a new word. Abendbrot. This pathetically mono-lingual American is learning lots of new words from all you folks across the pond.

💜🙏🏽

[PMRpro Ambassador in reply to Purplecrow]

You'd be in stiches in our household - we tend to use the first word that comes to mind which may be English or German! Our girls were the same so it isn't a sign of old age either ...

[bunnymom in reply to Purplecrow]

Yes I frequently say"sort out' which I picked up here.

[Constance13 in reply to PMRpro]

No! Well - 5 prunes and a handful of nuts.😀

[Lee1945 in reply to Koalajane]

Then again, it may be worth having a small lunch to see if it helps

[Koalajane in reply to Lee1945]

I have discovered that my blood sugars are lowering as I am dropping my steroids, just started tapering from 4.5 to 4 mg so if this carries on I will have a very light lunch, but my body is now used to not eating lunch so it would have to be light!

[HeronNS]

I see from your earlier post that you started taking pred in May of this year. In that earlier post you said you started at 30 mg (which is high) and have been dropping by 1 mg per week. Several things might have happened most of which were suggested in replies to that earlier post. In light of what's happened to you I suggest you were tapering much too fast. It didn't help that your doctor started you at a slightly high dose, but you did drop quickly to a more reasonable PMR starting level. Unfortunately it appears that the subsequent tapers should indeed have been much slower, and you would have done better staying at each level a bit longer. At this point patience is the key. I agree with what DorsetLady said. Once you've got the inflammation under control again you could consider one of the slow taper methods we recommend and only reduce by about 1 mg per month.

You need what you need. When inflammation is causing you pain the safe dose of prednisone is the dose which keeps that pain at bay. No painkiller will work. As the inflammation and disease activity lessens you'll find it easier to taper lower, but at the moment you really can't. And as DorsetLady says 5 mg is considered the level at which most if not all side effects are pretty much gone or insignificant. But we are all different and it does depend on so many factors, including our own particular efficiency or otherwise in metabolising pred, things going on in our lives which may contribute to stress, or, conversely, to recovery. It's quite complex.

The two slow tapers we often recommend on this site are DorsetLady 's simple taper and Dead Slow Nearly Stop. healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

That depends on who you are talking to I suspect!

But if you are talking about daily dose then it is immaterial if the dose isn't enough to manage your symptoms. And in that respect I can add nothing to what has already been said by others.

[luv2read]

I started at 65 mg and I am now down to 7 mg. My doctor put me on Actemra which allows you to go down to a lower dose of prednisone and will keep your symptoms at bay, (hopefully). I was told about Actemra from the Mayo Clinic in Rochester Minnesota. I'm not sure if you are in the states or if it is available across the pond, but you might want to ask your doctor about it. It is an injection that I give myself once a week. If that scares you, your doctor or PA would do it for you. It is used mainly for people with RA, but studies have shown that it works to get you to a safer, more comfortable dosage of prednisone due to GCA or any other illness that requires long term usage.

[PMRpro Ambassador in reply to luv2read]

It is not available for PMR in the UK and Europe as it hasn't been approved and no clinical trials have been done. In the UK it is only available for 1 year for difficult cases of GCA.

The studies weren't for reduction of pred in "any other disease" requiring pred - they were specifically for GCA as it works via the IL-6 pathway so will only work where IL-6 is involved.