Hello, and thank you for being here. Your support and advice is very much appreciated.
Here’s a long post with a short question. Some background:- Having been diagnosed with PMR in late January, I have been taking Pred since then, starting with a daily dose at 15mg as advised by my GP.
I went from being very active (competitive Velodrome cycling twice a week) and healthy, to needing help from my wife to get dressed - the PMR was a complete surprise, mentally and physically. I’m responding well to the Pred, with no side-effects, and I am not on any other medication of any kind. I am trying hard not to overdo things, take the excellent advice which comes from this site, and to listen to my body and pace myself, - which is hard - but it seems to be working.
I got to 10mg in March, via 12.5mg, without problems, and I have followed Dorset Lady’s “Slow Taper” method as soon as I discovered it while on 10mg - thanks DL for putting it out there - and tomorrow I begin my last week at 8mg - all good so far, no relapses or flares, and no need to increase the dose. I have been reducing in 1mg steps from 10mg until now.
My Question: (at last) - as I plan the move from 8mg to 7.5mg, and half-mg steps from here downwards - is it “better” to use a “normal” 5mg and a “Coated” 2.5mg, (as I did at the 12.5mg dose, without any problems) or stay with “normal” 5mg plus two-and-a-half “normal” 1mg tablets? (I have a Pill-Cutter) for the 7.5mg dose?
From my experience at 12.5mg, also from what I have read on this site, and generally about Pred, my instinct tells me that the latter option is the better one, as taking a ”normal” 5mg and a ”Coated” 2.5mg together would give me two separate “hits” some hours apart - which didn’t seem to matter too much at 12.5mg - whereas using all “normal” 5mg and 1mg tablets would give a more consistent dose, and a “better” progression from 8mg to 7.5mg and beyond.
Does it matter? Your thoughts and comments would be welcome, and thanks again for the support and expertise you give.
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Retroguy
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It isn't always a long and more consistent level that matters - some need the higher spike in the blood you get with plain pred, others find the long drawn out prescence found with e/c pred helps 24 hour freedom from pain. The only way to find out which is better for you is to try them. But if all plain is working at present - why change it?
Why can’t you be prescribed all the same type rather than having coated and uncoated mixed together? You can get 1mg, 2.5mg and 5mg both coated and uncoated.
Hi piglette and thanks for your reply, I’ll check it out, as it would make sense. In my short experience, I’ve only ever been offered the 2.5mg Pred in the coated form, which I don’t really need.
Hi again and thanks again piglette. I was prescribed Lansoprazole 15mg, which I believe is a PPI, with my first batch of Preds. I deliberately haven’t taken any of the Lansoprazole, and I seem to be ok without them so far, fingers crossed. Thanks for the heads-up re the PPIs and coated Pred.
Wise not to take a PPI if not needed. It's one of the drugs which can lead to bone thinning (lead up to osteoporosis) so not really a good mix with pred! I think most of us find even a small amount of food, like a little yoghurt, if you aren't taking it with a meal, is sufficient to protect the stomach. And as the dose becomes lower the need for medical stomach protection becomes even lower.
At the very lowest doses (you aren't there yet) the ability to cut a 1 mg tablet in half becomes useful. 2.5 not available where I live (neither is enteric coated) so I cut leftover 5 mg to get 2.5; I know that is a very useful size.
Hello Retroguy - I’m just starting today reduction from 8 mgm - 7.5 mgm with the DSNS programme. My GP has given me e/c 2.5 mgm Pred which will go with the 5 mgm that I already use. Good Luck to you and me for a successful reduction! 🍀🍀
True, but you can’t cut enteric coated tablets thus preventing doing a 0.5 or even rounding to 0.25mg if strictly following the 10 percent rule which I did down to 1mg where I continued 0.25mg drops. For example if tapering from 3 mg the next new dose should be 2.75 mg. Thats a 2.5mg cut in half+1mg tablet+half a 1mg tablet. All cuts are on score marks. I’d rather have the dosage flexibility and lower steps because it is also more advantageous in aiding the adrenals regain function.
Thanks HeronNS for this info. My wife, aged 64, has Osteopenia, and doesn’t want it to become Osteoporosis, so we are well-read on that score, making sure of the right diet and a measure of weight bearing exercise for both of us to hopefully keep that at bay. I suspect my Pill-cutter will see increasing use as the Pred dosage goes downwards (fingers crossed again)…
Uncoated are plain white tablets … coated (or enteric) are usually different colours and have a slightly glossy covering and are better for people with gastric issues.
Difference in prednisolone and prednisone
Not that much - prednisone must be processed in the liver to produce prednisolone which is the active form of the drug and the dose is exactly the same, a 1:1 equivalent.
The only difference is that plain prednisolone is in the system and effective in an hour, prednisone takes a couple of hours to start working.
Note -in UK we are usually are prescribed Prednisolone.
I must say I would prefer different colours!!! Sometimes I look at what I’ve put out for the morning and wonder if the half tablet is half a 5? Or half a 1??? So little difference in size!
The advantage of keeping a dosette box even if only for the pred - sit down quietly once a week with clearly labelled packets and a pill cutter if necessary and set out each part of a dose separately.
So interested to see post this morning about burning in the night! I’ve had throbbing burning hips and feet for about 4 months now! Doctor said take 2 cocodomol before bed! That dues help for a few hours. Cranial osteopath put it down to osteoarthritis in lower back!
Careful with diet.. though must give up dark choc and ginger biscuits !!!!
If you cut them the day before who cares which pill fraction is what? You take what you put out.🤷🏼♂️ I have a 7 day AM/PM organizer. I preset my pills a week in advance. I know they are correct and just take them.
That depends upon dosage!😂When in the ER with 9-10/10 pain level they gave me 80mg Prednisone. In less than 30 min there was NO pain! They didn’t do me any favors as they followed with another 80 mg 12 hrs later and released me with a RX of 20mg tablets and to take 60mg/d. So, I had a long haul…
Short answer: EC didn’t do me any favours; quite a noticeable difference compared to plain uncoated. But you’re going to get a variety of answers when there’s no universal ‘best way’.
Precisely! It takes some experimentation to get a working solution. You walk into PMR without a clue, but with the help and knowledge here you begin to understand the disease, and importantly the best treatment, especially the tapering schedules, given that doctors have a habit of pushing patients too fast.
Hi Retroguy, I am in my 3rd week of the 5 week taper, going from 10 to 9.5. If I'd found this site much sooner I think I'd be off pred by now, 3 years in, I'm also on the site called Stuff that works, and have learned so much from sufferers on both sites. The slow taper on this forum is the only thing that has worked for me, reading a post from Stuff that works written by a Dr who has Polymialga himself, he is amazed how sensitive the body is to the smallest reduction of prednisone, he also posted a list of withdrawal symptoms and Poly symptoms (very similar) but after several months of debilitating symptoms 4 to 5 days after reducing, I'm convinced my problems are withdrawal from the steroids as my inflammation markers are now always normal. Now with the slow taper I seem to be getting on top of those symptoms. I wish you all the best in your taper, it's not easy, but as others have said, listen to your body and take it slow.Kiwi Jan
What you learn on this forum is a more efficient means to approach the unknown optimal dose per degree of PMR activity. It does not affect disease progression, but ables you to follow it with minimal flare (pain) as long as pay attention to where pain occurs and don’t try to push past it. Not smart.
Of course your inflammation markers are normal - you are on enough pred to suppress the inflammation which means the liver isn't triggered to produce the proteins that raise those markers. It doesn't mean the PMR is gone nor that any symptoms are only withdrawal - but a slower taper will minimise the withdrawal protests of you body.
Thanks for that advice Pmpro, I'll remember that when I get the symptoms and slow down on the taper. Hopefully I'll keep managing as I am now. It's so helpful to have your advice. My Rheumatologist is not that helpful, and I have struggled.
I’ll actually have to give kudos to my Rheumy on this one. While every quarter just prior to my scheduled visit he’d order blood workup for the inflammation markers, he told me he really didn’t expect to see them abnormal as long as my dosage was enough to manage the disease and since I was careful to keep my dose above a pain threshold made it very unlikely. He was correct. They’re always very low and well within normal.
care to tell us the list of pmr flare symptoms vs withdrawal symptoms? Thanks. I think I know, but when you’re going through them, you still wonder. Thanks
To each their own. I prefer non-coated as I have greater flexibility of magnitude of steps. If you take with food at that dosage I seriously doubt you’ll have any stomach issues. Switching to DL’s simple taper had the biggest positive impact I wouldn’t be too concerned about a time-release from an enteric coating which I seem to remember reading a paper where that actually resulted in a lower amount being metabolized. Remember what your attempting is to find the optimum dose to manage inflammation manifested by PMR, and trying not to overshoot. DL’s provides a slower smoother transition to aid you to do that. Most likely at some point you are going to reach that dose and be forced to hold at steady for while and then reattempting a lower dose, maybe even using 0.25 mg drops by cutting a 1 mg in quarters. If you can, also get some 2.5 mg tablets as that can allow you to round your 10 percent decrease to the nearest 0.25mg until you reach 1 mg/day.
I’ll give you a heads up. If you are using Sunday as day 1, it was on Thursday of week 3 when I’d notice a flare starting and quickly returned to current old dose and held for two weeks before trying again. Once you get that first flare you know where you are and then try to figure out if the disease is in some sort of steady rate of decline, or not. If you feel a hint of a flare don’t ignore it. Stop that taper and hold! Restarted again week 1 of that new dose after about 2 weeks. Don’t push it!
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