I saw the rheumatologist on Wednesday. All was pretty straightforward. My blood test results are consistently fine and she's happy for me to reduce gradually at my own pace. However she suggested reducing from 6 mg pred to 5 mg by having a spell of alternating days, one day at 6 mg, one day at 5. I was envisaging taking 5.5 mg per day for a few weeks, using a pill cutter to cut a 1 mg tablet, as this is what I've done up to now when necessary. In a way I'd prefer her method as it's rather difficult to cut a tablet exactly in half. On the other hand, I know I'd have to keep a strict record of the doses as I'd get very confused about which day it was. Presumably at such a low dosage the body wouldn't have any problem coping. Has anybody else alternated doses in this way and was it successful?
Reducing from 6 mg to 5 mg: I saw the... - PMRGCAuk
Reducing from 6 mg to 5 mg
Yes I did from 5 to 4. It was suggested that it might help the Adrenal function to wake up. I have to say that I could tell that I was on a low dose day, symptom-wise. I prefer going down by 0.5 mgs too. My pill cutter is pretty sharp and I feel that it is usually a correct half.
I think the problem often lies with the tablets rather than the cutter itself as some brands can be very crumbly. The brand of 1 mg tablets I'm using now is Teva UK and they are more solid, but the ones dispensed on Wednesday by the hospital pharmacy are Co-pharma and I know from previous experience that they sometimes crumble before they're even out of the blister pack.
I have trouble with other tablets I take in that suddenly they are blue which confuses them with other meds. I am easily thrown, when sizes and colours are changed. It takes me an hour to carefully put all the doses in their dispensing box. I just don’t know how folk with visual impairment cope.
They can ask their pharmacy to provide their medications already in dosette boxes.
Whether it is accurate or not is hardly a problem since over 2 days you will take the entire dose and the important factor is is it less than the old dose - being 0.45mg or 0.55mg is immaterial.
At this level I think asking your body to swing between doses that at 20% different is a bit much - and it was exactly to accommodate the problem without being too much of a change for the body that the DSNS taper was developed - at the time enteric coated tablets didn't come in 1mg, reductions had to be 2.5mg or use plain pred.
Easy to keep a record - either on a good old fashioned piece of paper or on an excel spreadsheet. That’s one of the reasons I devised my slow taper plan on computer - helps with the Pred head.
I always think the alternating dates is harder on the body.
I do that, I go to steroidtaper.azurewebsites.... and get my next months plan - then I take a screenshot of the plan and upload it to my phone - since this is a reply to a post I can't upload the pic. Works well for me though and the tapering site is great!
Yes, that’s just a tool which covers all the tapers we talk about - the official BSR ones as well as DSNS and mine. But it wasn’t in being when I devised mine, which was why I did it!
Oh I wasn't trying to diss your plan DorsetLady , just showing that Sandra has got a lot of plans too.
No I know you weren’t - just saying it wasn’t available when I did mine- and did collaborate with Sandra when she was putting her site together.
I’m using your spreadsheet and find it wonderful. I started this method at 10mg and I’m currently reducing from 6.5 to 6mg over 7 weeks. So far it works well. I print it out so I can manually keep track, avoiding pred induced confusion. My GP and rheumatologist have left me to it and keep an eye on the monthly blood tests. So far so good.
I just wish I felt better on the lower doses but it seems lower doses don’t necessarily also ease up on the muscle and joint pain or fatigue.
Hi,
Did reply to this yesterday - but it seems to have slipped off somewhere! So I’ll try again.
Glad taper plan is helping....but if you are getting muscle/joint pain perhaps you are too low? Take more notice of symptoms than blood tests - they do have a habit of lagging behind.
PMR doesn't give joint pain as such, but in the muscles surrounding joints, so have you considered arthritis in joints?
Fatigue may well be due to fact that your adrenals should be trying to wake up around now - not a lot you can do about that except small slow steps - which you are already.
Thanks DL. I’ve had the muscle/joint pain and fatigue for at least a year, despite consistently low CRP. I’ve always considered these symptoms to be side effects of prednisone. Maybe I should hold the pred dose for a while before going down again. I’m reluctant to go up again but perhaps should give it a try???
Fatigue is certainly a side effect of Pred as well as being part of PMR - so that I would expect.
I would be looking elsewhere re the muscle/joint pain. You could try a couple of things- -
a. ordinary pain killers regularly for a few days - if they help - it's likely to be something other than PMR,
b. try upping to 10mg for 5 -7 days - then drop back down. if the increase helps, it's probably PMR, if it doesn't it's probably not!
But don't do both at once.
Thanks everybody. I have at least another month on 6 mg and then I'll decide. I know one of the slow taper plans is the way to go and I'm very grateful for the work of those who devised the various plans. I haven't got that sort of brain and would never have worked out something similar for myself.
Alternating by that much can be hard on the body. That said, if you decide to an easy way to be track is odd dose on odd calendar days and even dose on even days. Don’t have to worry much about 31 day months or leap year, just take the odd dose twice.
Good luck!
Thanks for the tip.
HI Marijo1951 I am currently doing alternate days from 6mg to 5mg on my rheumys advice, I went from 7 to 6 doing this and was ok but at the mo am feeling very tired. I also split my dose 2mg at night and the rest in the morn, I have always split my dose between eve and morn as this worked best for me. Have a rheumy appointment in Feb and would like to reduce to 4mg if possible!!! Hoping my adrenals wake up!! Good luck with your reduction.
Forgot to say I keep track of dose in my diary! 
Thank you for letting me know. I've just gone down to 6 mg after a number of weeks on 6.5. I didn't do any alternating and it seemed to be okay. It makes more sense to do so at such a low dose, so I'll probably try alternating 6 with 5.5 next. I've also never split my dose but always take mine at breakfast time which seems to suit me. I'd be a bit worried that taking some at night as I still get pred-induced insomnia from time to time and I suspect it might be made worse.
It does seem somewhat contradictory to be told in one sentence to reduce in your own way then in the next breath to have suggested a method
I was told by my GP to reduce at my own rate and so did using the tried and tested dead slow method, going from 5 to 4 would be 1 day at 4, followed by 6days at 5. Do that for two or three weeks, or more if necessary, then gave the next group of weeks at 2 days at 4 and 5 days at 5, not having consecutive 2 days, so day Sunday and Wednesday at 4 other days at 5. When you get used to that,then 3 days at 4 and the rest at 5, and so on until you get to,7 days at 4.
She was very fair actually. Re-reading my original post I can see that I might have given a different impression. She was just saying that was one way of doing it and it made me wonder. She was perfectly happy for me to reduce in a way that suits me. I know from what I read on here that some doctors are a bit dictatorial but I feel lucky because the rheumatology team at the Royal Free treat their patients as intelligent people.
I have used the alternate days going from 6 to 5. I also did two 6 per week in the last two weeks before going to 5. No problem with that transition at all. I think a lot of it has to do with whether you are ready to reduce. I had the same success going from 5 to 4, for a while. Then, other factors entered in and I went back to 5 to be sure that was not part of the problem. Perfectly stable at 5 and will stay there until I feel I am ready to reduce again. Maybe starting a reduction at the onset of winter in Minnesota was a huge mistake. Should have listened to that small voice that said, "Just be patient and wait for optimum conditions." I didn't. I will consider getting 2.5 size to go to 4.5 next time. Easier in some ways.
It's all trial and error and learning from our mistakes. I agree that it's essential to be ready to reduce and to be ready to increase again if necessary. It's no use trying to fight these ailments...
I only know about Minnesota winters by proxy. My grandson is in his second year of a soccer scholarship at a college near Minneapolis. He'd been warned about the cold but it still shocked him the first winter he was there. He was a bit more prepared this time. He was home in London for Christmas and New Year. Our weather was mild and damp but felt positively warm to him, but he did miss the blue sky of Minnesota. Our grey skies can be depressing.
We can be brutal, weather-wise. If it is warm, good chance it will snow. The sun accompanies the drops in temperature, but, with no wind it can be very pleasant. A very good climate for those who appreciate hibernation and for those who like to shovel snow. Soccer practice, hmmm, bet it is a bit later to get outdoors than at home.
What a nice surprise connection!
Yes, it's a big frustration to him that so much training has to take place indoors.
By the way I read somewhere that Minnesota and neighbouring states have the highest rates of GCA and PMR in the US, probably because of the large number of Scandinavian immigrants in the 19th and 20th centuries. Pesky vikings!
Indeed! Two grandparents born in Norway and two in Germany. Mine was diagnosed on the spot by an ER doc in a northern small town. He heard the symptoms I'd had for two weeks, asked for labs, and I was out of there feeling better already on 60 mg of prednisone within the hour. That knowledge extends to the eye professionals as well. I still know of only one other person who has actually had PMR, though, and no one with GCA, so this forum has been wonderful.
I waited for 4 months after my GP finally referred me to a rheumatologist to find out what was wrong with me. I'm so lucky that my sight wasn't affected.
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