Hi everyone, I am feeling sufficiently stronger after my recent Hospitalisation saga,s. To try and tackle the pred reduction plan.
After two years on pred mostly yo yoing between 10/15 mg (I did get down to 9 once but short lived) l am about to start the reduction plan.
Problem is I am taking so many tablets at present, which have various side effects including the dreaded brain fog (l sometimes stand there in the kitchen looking at rows of boxes lined up like a pharmacists shop and wander why on earth Do l have to take all of these)
However, that said, I am wandering if anyone has published a simple chart (well not that simple or l wouldn't be writing this) that gives you the actual dose you should take each day as I can see me standing there in the kitchen looking baffled each morning as to how many pred to take on that particular day and starring blankly at the reduction plan and not knowing what day it is let alone what my dose is on that day.
Has anyone produced a chart that shows, as an example one day new,six days old and starting at 15 mg andshown as.
14-15-15-15-15-15-15. 14-14-15-15-15-15-15. 14-14-14-15-15-15-15 Etc Etc.
Hope I have got this right as l find it all very confusing.
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Classicmichael
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I use a seven day pill box fill it Saturday afternoon ge hubby to check Have chart inside cupboard 28day made template on pc I have found getting some one to check things is the key
Get a diary or small calendar and sit down at the beginning of the month (or whenever and count out how you want to do your reduction. Or you could set up a spread sheet if that is what rocks your boat! A diary is good because you can note any symptoms/problems you may have and see if there is a relationship to your medication changes.
I would do it a bit differently to what you showed because I don't put consecutive days of the new dose in until after getting to alternate days of old/new and then building up to the all new dose. I'll put the link to the post on this forum with my reduction plan explained in at the end of the post.
Using it, you would take your new dose on the 1st, old dose for the next 6 days. On the 8th you would take the new dose, old dose for the next 5 days. new dose on the 14th, old dose for 4 days...
Google dosette box as well - having a dosette box, whether it is daily, weekly or monthly makes organising your poly pharmacy a lot easier and safer. By having one period, say a Sunday night, where you sit down alone with your calendar and your medications you can be more sure you haven't made a mistake by being disturbed or distracted.
Hi PMRpro thanks for your very informative reply I have just purchased a PillMate extra large 28 day pill chest on EBay for £10.95 it will take all my pills including the varying amounts needed to reduce.
I have also drawn out a simple graph to note Dailey doses and comments like NTB not too bad. GD good day. BD bad day etc.
It's going to take ages to fill the box but at least it is only every 28 days.
Dave, your example is exactly how I reduced my steroids to zero a few years ago, but I was lucky in not having to go quite as slowly as this until I got to the 5mg dose and then I had to do it at only half a mg at a time as I had been very sensitive to any reduction from 5mg previously. As well as my hubby providing a graph, I also kept a calendar on the wall with each day's planned dose marked for a month ahead, as follows:
One day 4.5mg
Six days 5mg
Two days 4.5mg
Five days 5mg
Three days 4.5mg
Four days 5mg
Four days 4.5mg
Three days 5mg
Five days 4.5mg
Two days 5mg
Six days 4.5mg
One day 5mg
Every day 4.5mg
Obviously, it should be easier to reduce in 1mg amounts when on the higher doses above 5-7.5mg. Others have since devised similar tapering patterns so you have a little choice, but the main theme with all of them is 'slowly slowly does work', and I hope it does for you too.
I do a spreadsheet of my planned reduction and then colour code green, yellow, red as to how I felt each day on the dosage. I have actually added a fourth option, a yellow star to the green which means I felt brilliant, although I have not had too many of those so far. I do find this system quite useful as I can see when things may go wrong or right even!
The most simple idea, as per most of other responses, it to do a spreadsheet to cover the reduction. I type days of week across top, and the starting date, and always start my reduction on a Monday (my plan takes about five & a half weeks). Very easy to amend for next reduction. As a check, I mark each dose on the page as I put in weekly pill box.
It's a bit of a chore doing a week at a time, but then you can forget about it.
I got into the habit of doing this when my late hubby was on 28 tablets a day (definitely couldn't have managed with my brain fog in those days). DL
Likewise Dorset lady, it's almost a full time job being ill, I take 18 tablets currently but thank goodness they are not all different.
Just realised that if l fill all 28 compartments of my new jumbo pill dispenser l will have to fill it with 504 tablets HELP!!!!!!!!!!!!!!!
Your spread sheet sounds similar to mine but Putting in each Dailey dose is quite laborious over 28 days if only you could buy a printed version of the tried and tested one day new six days old etc I would be willing to pay good money for that.
As regards filling my pill dispenser I am considering offering it as a part time job for somebody ( only joking)
It won't take that long if you make it a production line! Most of the drugs are the same dose every day so fill the suitcase one drug at a time, same dose every compartment. That way you can take a pile of boxes and sit them there, do one drug, take a break, go back and do the second and so on.
I'd do the pred first since they aren't always the same - and you can check if you get confused.
There would have to be various versions for "Dead slow and nearly stop" - less sensitive flowers start at 1 day new, 4 days old...
You can have tablets in any format you need from the pharmacy if you can't manage the blister packs! And you can get a gadget for opening blister packs if you can't swing getting the pharmacy to open the packs for you...
You are not alone. I realised I had got in a muddle at one stage. Too brain fogged to get my chart right I did at least notice that I had gone adrift somewhere.. I was keeping a diary of symptoms but then when the rheumy asked me what symptom developed at what lower dose, it was the one question I couldn't answer off hand I was reducing for the rheumy to see what I was like without meds. I think a maintenance dose was in the air but it did not materialise I think because I could not answer the question.
With hindsight, expecting me to put up with symptoms such as aching lower limbs, stiffness, bursitis sleepless nights etc. whilst I reduced down for a whole year so she could see me unmedicated is a bit unreasonable, bearing in mind that I have PD and should be exercising far more than at present .
I have now been on 2 mg for two months and with GP's agreement going on to 5 mg which I hope will be a maintenance dose in the absence of advice from the rheumy who is still barking up other trees as far as I can see regarding what the dx is despite the magic 24 hours response to 3x 5 mg prednisone I have had more than once. No elevated ESR levels you see!!. I was told I would be sent for an MRI scan and she has most recently described me in letter to GP as a lady not with PMR but with "proximal muscle weakness" which she suggest may be related to an observed raised TSH level . I already take thyroxine and the TSH is certainly much higher than even my normally erratic readings. However, in the absence of any other follow-up letter to the GP to the rheumy appointment 28th January, I am left wondering whether my other symptoms are being put to one side in favour of a thyroid theory of everything? There is a helpline but I was not impressed with their inability to grasp what I was asking when I tried them. I suppose I could ask when my next appointment and MRI scan are scheduled for . That might help me get my life in order. In an ideal world there would be much more time to consult with the specialist and more GP slots but...............
I am wondering whether it would be a good idea to go on to 15 mg for ? many days before dropping down to the trial maintenance dose of 5 mg . 5 mg was the level at which I started having trouble with getting up from any sort of chair and up the stairs at home. Judging by when I had my pred.temporarily increased a few months ago for a swollen foot which looked like it might be gout there shouldn't be any untoward reaction
One in 6 patients (approximately) with PMR and GCA "do not develop the acute phase reactants" - which in plain English means they do not have raised ESR and CRP. I don't - and I know quite a few people the same but we have all been adjudged by experienced rheumatologists to have PMR and/or GCA and all of us reacted typically to a moderate dose of pred (15mg).
There is a subtle difference between "proximal muscle weakness" and the stiffness and so on of PMR - as far as I know proximal muscle weakness doesn't hurt for a start. And whatever a proximal muscle weakness might be due to - I'd be very surprised if it went away with 15mg of pred and returned at 5mg pred.
In the present situation I'd have thought you might need a bit of time at a higher dose to get rid of the accumulated inflammation before a "maintenance" dose would keep you comfortable. In the absence of raised blood markers you can only go by signs and symptoms - which should always be king anyway, bloods are just another piece in the jigsaw and fairly immaterial IMHO (but I don't have them either so I would say that). Having been on a low dose you could go to 15mg and then reduce fairly speedily to 10mg and then a bit slower to find the new "lowest dose" - it might not be 5mg now having messed about with things as she has.
Where are you? Is there any chance of getting to see a less blinkered rheumatologist? I do realise there are difficulties with that unless you can afford a single private audience.
Having been on a low dose you could go to 15mg and then reduce fairly speedily to 10mg and then a bit slower to find the new "lowest dose" - it might not be 5mg now
Thanks for the speedy answer PMR pro My previous reply posted itself but was a quote!!!!! from your advice which is pretty much how I reduced, (thanks to advice on here and no thanks to the hospital helpline who didn't even take in the question) after the GP raised it temporarily for suspected gout. I do realise 5 mg is a bit ambitious as far as really dealing with the symptoms.
As I said to my GP its jam today at my age (75) . I did not so much ask his advice as "run this by you". I tend to dither but once I make up my mind that's it.
Hi Paddyfiels like you l get very muddled sometimes as to what dose of pred l am on and really worried about forgetting to take my tablets so now l write down the dose every day on a sheet which also notes how l am feeling on that day.
L too have an ESR which is within the normal levels and suffer mostly with hip,leg, and knee pains and also have neck pain but not in shoulders or arms, so as an atypical patient l have come up against a few patronising non believers insisting that l don't have PMR.
Regarding your 15 mg of pred then going down to 5mg again l think you should ask PMRpro about this, she is certainly the expert on this forum.
I actually wrote down a chart with the days of the week but as I foolishly started my week on Monday and the particular pillbox starts on Monday not to mention repeating some lines. I do have pillboxes where you can re-arrange the individual days to suit but they are for other pills. Actually I have only just realised how awkward I amm finding it it is not being quite sure what the dx is. The locum I saw in between times did put PMR. I get on fine with my GP (bonkers but clever) and I don't think he's worried about offending the rheumy.
I work on the assumption that it isn't that important to have a 100% correct diagnosis - if the pain is relieved quickly and effectively by any particular medication that is fine and if it happens to be pred rather than a DMARD (used for RA) then so be it. But while I'm at it, I want an adequate dose. As long as under 10mg is working fine I don't worry too much however long it takes - and if it is under 7.5mg-ish I don't worry.
Jam today definitely - it might be too mouldy in 10 years.
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