I'm down to 6 mg... Finally

I live in the US so I canget 1 mg tablets. But I don't see how I can go less than a .5 mg unless there is a .5 mg tablet available.

Amkoffee, I live in the US, one mg Prednisone is available. I have 1, 5 & 10 mg from my local pharmacist up here in the mountains. So you can get them. My question how am I going to get a 1/4 mg dose. I am cutting 1 mg to make 1/2, but I don't think I can cut them again. I think positive that I will have that problem, with a smile on my face. ??

I don't think Pred. is dispensed in smaller than 1 mg. and even the best pill chopper won't be very accurate below cutting in half. The way I got round it was to vary the dose on alternate days so that if, say, on Monday, I took 1.5 and so maybe wanted to take 1.25 on Tuesday then I'd take only 1 and then on Wed. take 1.5 and so on so Mon. and Tues  together would be 2.5 but divided by 2 ( ie Mondays and Tuesdays amalgamated  ) and then divided came to 1.25. Hope I'm clear. Please bear in mind I was an infants teacher..... didn't do advanced maths! I think further down the line it was spread over more than two days to achieve desired over all effect.

I do understand what your describing. I didn't even think of doing it that way. I'm going to give that a try.

The primary point of the Dead Slow approach was to deal with the problem of not being able to cut tablets to get tiny enough stages. You spread the smallest practical sized reduction over several days - and it affects you less.

I must have Pred Head..for the life of me I can’t work out how you drop .1 of a mg.....what am I missing? The lowest tablet I have is 1mg which I cut in half when I need .5 mg, but how do you get .1mg? Have I lost the plot or am I reading it wrong? I’m down to 5mg which I’ve been on for a month but am rather nervous to continue to 4.5mg as I have a few aches and pains, (nothing I can’t handle) and I’m very tired. I’m due to see the rheumy on Wednesday and he likes me dropping 1mg per month but I’d rather slow it down at this point till I get these adrenals working for themselves. 

4 days ago

I don't think Pred. is dispensed in smaller than 1 mg. and even the best pill chopper won't be very accurate below cutting in half. The way I got round it was to vary the dose on alternate days so that if, say, on Monday, I took 1.5 and so maybe wanted to take 1.25 on Tuesday then I'd take only 1 and then on Wed. take 1.5 and so on so Mon. and Tues  together would be 2.5 but divided by 2 ( ie Mondays and Tuesdays amalgamated  ) and then divided came to 1.25. Hope I'm clear. Please bear in mind I was an infants teacher..... didn't do advanced maths! I think further down the line it was spread over more than two days to achieve desired over all effect.

I posted this the other day for someone else with the same question. Hope it might help you, too.

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How are you doing such small increments of prednisone? Are you taking a liquid prednisone? How are you deciding what dose to go down each time? Your doses seems so random. What country do you live in?

I suspect that she's using liquid prednisone. If not I have no idea how she would be able to take doses that are as small as that.

If you are tired, never mind the niggles, you need to stay at 5 until your adrenals start to be a bit more active.  You could test the waters, so to speak, by occasionally having a 4.5 day, but with no intention of continuing, just going back to 5, until the time you take it and it doesn't make things worse, then you could begin the long (six week) version of the dead slow taper.  This is how I initiated a number of my tapers at low levels.  Just kicked the tires occasionally when I felt well enough, and eventually the taper would "take", and I'd be able to head down another .5 mg.  This is why it took me a whole year to get from 3 to 1.5, which in the end I blew by trying to get to 1 too quickly!  

Thank you BettyE, I did see your post the other day, I actually printed it out to keep and also ask my rheumatologist if I can use your method as I get lower. 

“Kick the tyres”....I love that! That makes a lot of sense actually, I do use the  DSNS method over the 26 days now and stay on the dose for a further 7 days before I try to go lower, and it’s been by 1mg so far as per the rheumatologist instructions (he wants me off it ASAP because of my osteoporosis) . I’ve coped with every side effect the pred can throw at me including the latest of losing my long thick hair (love hair extensions!) which only came on at 10mg and rushing to get off it at this stage isn’t going to improve my osteo, I have to take Prolia for that. 

Reeceregan, please don't rush take your time, a bad flare can send you back to the starting point. All Rheumies want you off Pred ASAP, that is what got me in trouble. Nice and easy does it everything else will work out and you may end up taking less Pred. Think positive and try to smile. ??

I use A$11 scales from eBay that weigh to the nearest 1 mg.  Since a 5 mg prednisolone tablet weighs a little over 50 mg, I can weigh fragments of these tablets to a precision of almost 0.1 mg of prednisolone: precise enough to taper down to zero in 0.2 mg intervals.

Until now, I have been splitting by hand 25 mg tablets, which are cheaper that the 5 mg, and using two weekly pill-boxes.

Thank you for explaining that, you had a few of us wondering what your secret was. I don’t think I’d be game, think I’ll just stick to .5mg a time using a slower DSNS method than I do now. BettyE alternates her dosage over a few days and that’s an option as well. 

You’re so right. I have been extremely fortunate to be able to get from 50mg to 5mg since June last year and not go backwards (except for a few little hiccups here and there) and I certainly don’t want to push my luck at this stage. I’m in no hurry....wish I could convince the rheumy. Once he saw my dexa scan results and now with with cataracts forming and pressure building behind the eyes he’s determined I should keep going with the taper. He’s happy with the DSNS method over a month that I have been using up till now but doesn’t worry about my aches and niggles.....I am though, I don’t want any!

You can use DSNS with the smallest bit of tablet you can cut - and that will be as slow as you can get, that was the idea of it in the first place. It doesn't really matter how accurately you can cut it - as long as it is smaller than the last bit you were using.

Stopping pred now won't stop the cataracts - and they are an easy problem anyway. I would like cataracts - so I could throw away my distance specs!!! Pressures can be managed - just the same as with glaucoma - and if they are only rising now it suggests it isn't entirely the pred. They would have risen more with higher doses.

Reducing further from 5mg won't change the amount of corticosteroid in the body either - your body must now top the dose up to be able to function. It is generally agreed that below 5mg of pred the effects are minimal OR more recent work shows they would have happened anyway, with or without pred:

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

And what is he going to do if reducing further from 5mg results in a flare? Then it seems to me he will have a problem on his hands that he could have avoided.

It’s a good article that one. I agree, rushing me to get off pred now isn’t going to achieve much. Cataracts as you say can be removed easily...I actually expected the ophthalmologist  to say he’d take it off but he said he wanted to get the pressure down first. Eye drops hopefully are doing that, I find out next week. As for the osteoporosis well..it’s so bad it obviously wasn’t caused by pred because I haven’t been on it long enough to do that amount of damage, so getting off pred won’t reverse it. Hair loss...well, hair extensions solved that, weight gain..nope, totally opposite, tiredness yep, but old age will do that to you anyway. Agree with you, can’t see any reason to rush down at 1mg a month from here until these muscle aches and joint pain go away. On saying that, it is winter here and I do have arthritis to a small degree so it’s hard to say what’s causing the aches. Just gives me a good excuse to stay snuggled up in bed that little bit later in the cold mornings. 🌬

I haven't considered DSNS because so far so good.  Moreover, weighing tablet fragments means a regular, small variation in the daily pred intake that may even be helpful: a bit like alternate dosing.

Since cataracts and glaucoma are a worry on pred, I too should see an optometrist soon. 

How long did it take you to drop from 50 mg pred?

I knew there was something wrong with my eyesight deteriorating...black threads in front of me eyes, feels like a smudge in my left eye that I want to wipe away. Was surprised to be told I had one in the right eye as well though. I started 50mg 31.5.17 for GCA as well as PMR so I’ve been very very fortunate to get to 5mg in just 13.5 months. I don’t want to rush it though, and I have had to do small increases twice along the way ( at 20mg and 11mg). I started the DNS  method at 11mg and it’s been the thing that’s allowed  me to continue as I found at that level that dropping 1mg each month had to be done as slow as possible, and as gently as possible. 

I am mathematically challenged.  Can't understand how scales which can measure by 1 mg can actually enable you to create fragments as small as .1 mg.  And if a 5 mg tablet, which is already only one fifth the size of the tablet you are starting out with, weighs a little over 50 mg, how on earth can you get .1 mg from that?  You must be measuring powder!  I think I need a YouTube video to explain!

My husband has glaucoma and he found out recently that since a cataract operation he no longer needs drops to relieve pressure in that eye, although of course he continues to be monitored regularly.  

Reeceregan, you are doing better than I, I am at 7 tapering to 6.5 on the 52 day DSNS cycle, after having a very bad flare my Rheumy is no longer rushing me. I am a 80 year long time type 2 Diabetic, who has worn glasses since I was 9. Yes, I have cataracts, have had them for a number of years, next eye exam is in September. If the cataracts are bad enough, I am ready. Thinking positive and smiling.☺️

Joydeck, I also am a pill cutter and would like to use that scale cannot find it on eBay can you please help me ? Thanks ☺️

Thanks Anhaga, I might ask him about that on Monday. The way I look at it

( no pun intended) surely removing the cataracts would allow me to see more clearly, with or without  the added pressure. The cataract on the left eye has developed quite quickly, and is much worse than the other, or at least my vision is much worse in that eye. Even my new glasses seem to be not as affective as they’d were just a few months ago. I don’t have other symptoms of returning GCA so he doesn’t think it’s that causing the vision loss, just the cataracts.

You’re still my hero Michdonn. Right from the onset of my finding this forum I looked up to you, you activity level and attitude, and you haven’t lost any of it despite your setbacks. I remember how you’d talk about your skiing, and always gave positive feedback and encouragement and I would think “blimey, if he can do that at  80 then be quiet girl, and keep going!” And I did, with your incentive, Eileen’s knowledge and everyone else’s contribution and help. This forum has been an absolute godsend, there is no way on this earth I would have been encouraged enough to even try to forge forward when I was initially diagnosed. But by George I threw everything I had into fighting it, and so far I’m still mastering it, despite every blooming side effect it can throw at me. Well, maybe I shouldn’t say that, as we all know this thing masters us, we don’t master  it. But I’ll tell you one thing Michdonn...I always have a smile on my face, thanks to you 😀

For my pred scale, search eBay for 20g * 0.001g Portable LCD Digital Scale.  Price is around $12 now.

Incidentally, all these scales struggle to register much below 10 mg, which means below 1 mg pred you may need to use 1 mg pred tablets.

Rather complicated, isn't it?

A 25 mg pred tablet weighs 190 mg.  (It used to weigh 300 mg).  Therefore a tenth of a tablet will weigh 19 mg and yield 2.5 mg pred.

A 5 mg pred tablet weighs 110 mg.  (It used to weigh 140 mg).  Therefore a tenth of a tablet will weigh 14 mg and yield 0.5 mg pred.

I have yet to consider a 1 mg pred tablet, and may never have to.

I simply break the pred tablets by hand and order the fragments by weight of pred.  (I have an A4 spreadsheet to this end.) 

Being innumerate my eyes have glazed over.   I admire you for your skill and thank the powers that be the most I have to do is slice a 1 mg tablet in half!

Thank you, Reeceregan. I do believe that think positive and a good attitude is a great help on this PMR journey. I try every day to do just a little bit more. Looking forward now to a great ski season. ☺️

Thank Joydeck, I am going to buy one hopefully I will use it soon. Got to think positively! ☺️

Anhaga, I cut my 1 mg tablet to get a half, but I hoping to get to the point where I want to use a 1/4 mg dose. At that time I think a scale would be the way to go. I just looking to the future with a positive attitude and a smile. ☺️

I don't know the weight of a 1 mg pred tablet but let's assume this tablet weighs 50 mg. 

My mg scale, which struggles at very low weights, will certainly weigh down to 10 mg.   Therefore, the scales will reliably weigh 0.2 mg pred fragments.  The scales may even weigh a little lower with perseverance.  Incidentally, I use a very short piece of coloured nylon cord, carefully weighed, as a check on the scale.  

All the same, I would have thought breaking this tablet in quarters, by hand, would suffice.  A weight somewhat low one day, high the next, wouldn't matter in the least.

Maybe my total confusion lies in the fact that there is a difference between a mg referring to the dose of the medication and a mg referring to the physical weight of the tablet?  Still won't get past my innumeracy, but now I think I understand what you were trying to tell me.  

Joydeck, I don't disagree I am cutting the 1 mg okay. When the time comes I will try and cut the 1/2 to a 1/4; I figured if I had problems it would be good to understand what you were doing. I thank you for the information and I will ready when I get to that level. Just came in from a bike ride, riding up and a couple of hill, working hard to get get back in shape. Think positive with a smile. ??

Anhaga, think of a tablet like a small cake. You can cut it in 1/2, 1/4 etc. But if the cake weighs 16 oz, you could weigh out piece 8 oz, 4 oz etc or 10 mg tablet weighs 20 mg, you could weigh out 10 mg piece, that is 5 mg of Prednisone or 5 mg piece, that is 2 1/2 mg of Prednisone etc. I hope that helps. ☺️

Yes. My problem was hearing that the scales could measure 10 mg, which meant you could figure out .1 mg.  I was't adding the important part, which would have been understood by anyone who doesn't need to use their fingers to count, which was we were talking about two different things.  

Anhaga, please don't feel bad, I am still trying to figure out how to spell. When I was working I had a couple of wonderful Ladies, who thank God edited my writings. I do not know what I would have done without them. Think positive with a smile. ??

I don't feel bad.  I never did well with math.  Oddly enough the only time I liked it was when we did something called "co-ordinate geometry" in high school.  Don't ask me today what that was, but it kind of opened up a new perspective for me, that numbers could become something you could plot on a graph and therefore be less abstract.  I have a vision where at the limits of the universe is nothing but pure mathematics, the place where numbers are born, and numbers become everything we know.  

Anhaga, I smile spelling is the same for me and always has been. ☺️