Good morning
I realise opinions differ but I would be grateful for any input on my question which is this: I have reduced P from 15 to 7.5 in 6 months. Would it be reasonable to allow up to another 12 months (or more) to reduce a quarter of a mg every 2-3 weeks and possibly take another year or more to get to low levels? Just wondering as my GP seems a bit tired of my questions 🙄
Reasonable in what way? If it keeps you on the straight and narrow it’s not too slow. 0.5mg per month sounds like a steady pace to me. Due to my low adrenal gland response, under 5mg I had to go slower than that. You can’t know for you until you get there. What are you feeling like at the moment? It might be less of a jolt to add the new dose in gradually rather than step down to 100% new dose from day 1. Have you ever tried the Dead Slow Nearly Stop approach? It’s in the FAQ’s.
How is the GP showing they are fed up with your questions? What have you been asking?
Hi Snazzy, just thinking out loud really. I've read some inspiring posts from members who have taken a long time to reduce to a low level. My GP and my endo seem to want me to do a rush job and I never went back to the rheumatologist who wanted a 2.5 reduction every fortnight 😯I'm actually feeling quite good thanks since going from 7.5 to 7.25, so long as I pace myself. I know when I've overdone things 🥴
Yes I've seen the DSNS but not tried it so far. Would you recommend it?
I do want to get off P, when the time is right. One of the GPs (not my regular GP) implied I was being uncooperative when I didn't want to drop 1mg every 2 weeks, a sort of 'don't you want to get off Prednisolone?' approach that reminded me of my mother's reprimands 😒
My best wishes to you, GG x
That was just showing their ignorance about PMR!!!
Well, you’ve come leaps and bounds along the PMR learning road from the sounds of it. Whenever I got a telling off I said that my dose trajectory was always down so that had to be good and better than yo-yoing.
It probably isn't worth asking the GP - few doctors really understand the need for slow tapering. You can taper at the rate YOU can taper - and if that works for you, she should be satisfied. From 10mg it should be 1mg/month maximum, 10% of the current dose. As you get towards 5mg it becomes a greater % but most people do OK. At 5mg dose, 10% is 1/2mg/
As Snazzy says, 1/2mg per month at this stage is perfectly reasonable - how you arrange it is up to you and what works for you. You don't have to keep asking for permission - just do it.
I realise this Pro but my inner child still expects a reprimand if I don't toe the line. It's not logical, it just kicks in if I am challenged by authority. It makes me sad 🙁
'You don't have to keep asking for permission - just do it.'. Ok 😉
Try to understand our info will rarely change and we also won't tell you off for trying something different. All sorts of thing change when put into a different context - and that GP was wrong in THIS context, So - the easy answer is not to ask them in the first place!
Ok 🙂, thank you everyone 🌸
Fortunately I have a wonderful health practitioner at my practice who really understands PMR and its unpredictability! She has her group of pmr patients and I have been taken under her wing.. previously I was sort of doing things myself as GP hadn’t a clue about reducing dosage! As a result I feel more relaxed about the rate of reduction and ignore the idea of getting down to zero. Just want to be painfree. Problem is finding correct dose!
But the problem is the GP controls the Pred prescription so you HAVE to do it their way, even though they are often wrong. The best way I've read about others doing is to print off the slow reduction plan and tell teh docotrs it comes from the charity so it has credibility and then they might lilsten to us patients. Or be lucky enough as I am to be under a good rheumie who understands how PMR works and trusts me to know what's best.
I was given a STUPID reduction plan some time ago which involved alternate days without any pred! I wrote directly to the doctor explaining my concerns and suggesting my own plan which was accepted.
Unfortunately this appears in 2009 guidelines- on the charity’s website -
This is tapering regime from guidelines -
The suggested regimen is:
. Daily prednisolone 15 mg for 3 weeks
. Then 12.5mg for 3 weeks
. Then 10mg for 4–6 weeks
. Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg alternate days, etc.)
So what hope do we have!
That's what I was given last August and again from the Rheumatologist in November 🙄It's not what I'm doing now but I'm going to stop updating them unless they ask 🤐
Agree! Barely marginally better than what was suggested for me:
Ugh, what planet are they on? The schedule DL shared above made me ill and had to be revised, yours would as well as I am very sensitive to meds and have to tread carefully. My endo wrote to my GP about this but I think the letter must have conveniently got lost 🙄 I dread to think how I could have ended up if not for this forum 🫂
Does make you wonder if there’s a planet far, far away where all these “Professionals” are squirrelled away and bent on making life difficult for us. This forum has given me confidence to advocate for myself on the two or three occasions I’ve needed to and I don’t begrudge a penny of the membership fee that is vital in keeping PMRGCAuk running for us.
Did you receive a copy of the Endo's letter as well? If so I would take a copy of it and give by hand to the surgery.
No, not a lot…
Yes, I was given this and when I asked about monitoring (I meant by the GP I was talking to) she said you’ve got that indicating the plan. I took that to mean I can organise things myself and so, with the help of this wonderful website I have slowed down my reducing rate. And the plan is very vague when it talks of 4-6 or 4-8 weeks which puts the power in the hands of the patient. I’m also lucky that I’m able to order my Preds online without seeing the GP which has enabled me to build up a good stock for holidays, disasters etc
Oh goodness . I can’t quite believe the craziness of all this around tapering !
One of the main points to remember is that we are all different and that tapering is individual: what suits one may very well not suit another and symptoms are a good indication of what is working well and what isn’t. However, missing doses by way of the plan given to me would have been very risky and there’s no way I would have followed that having learned from the wise folk on this forum.
They do alternate days steroids for some other conditions, its meant to reduce side effects .... I guess the adrenal glands have to work properly on alternate days but the inflammation is also reduced . As I understand it from advice here, not recommended for pmr.
No not recommended for PMR -and certainly not GCA…
The person I knew having alternate days was on dexamethasone for brain swelling .... completely different scenario
But dexamethasone is a long acting steroid - which is why only alternate days. Pred is medium acting - fits neatly with daily singles dosing.
i did see a paper about trying alternate days for autoimmune conditions with pred. Rationale was side effects.
It doesn't work with pred for PMR and GCA. It can be used in some others.
I'm fortunate in that I have pred 5, 2.5 & 1mg on repeat. So long as I don't over order I just request what I need when I need it.
I would suggest putting in your scrip regularly once a month so you can build up a little stash, just in case. Your body will tell you straight away if you taper too fast. I am down at 3 ¾ and currently having a sleepy/achey week which I put down to steroid withdrawal symptoms rather than a mild flare. Hopefully next week l will be back to normal and be able to reduce by another ¼ mg.
I’m going ftom 12.5 for 0.5 reduction per month That’s interesting I asked for 2.5 mg and was told pred didn’t exist but to buy a splitter ! It’s intersting as I have been on 12.5 since January so I I am now wondering what dose I have been using :)) my brain feels foggy enough without being told a dose I’ve been taking doesn’t exist … trying to track back on the nhs app to see if I can see a record of previous prescription requests.
It does exist -print off the relevant info from this and take to surgery/pharmacy
2.5 mg certainly does exist, I was given it with a batch of 5s and 1s when I was first put on 15mg. I have since requested a second box of 2.5 with no problems but I believe they are more pricey for the practice. Shame as they come in very handy now I am on 7.25mg (5, 1, and half a 2.5). I am dropping by a quarter of a mg at a time.
Is there a charity concerned with PMR? Never heard of it. Would be interested in details please.
See this -
.. and have you not seen one of these monthly welcome posts-
healthunlocked.com/pmrgcauk...
… and please pass this information on to your GP she can get membership as a professional at no cost.
PS - there are local support groups as well… see on charity’s pages.
I don’t have a problem with getting prescriptions. Never been refused so now have a good stash!
I think it depends upon what your PMR thinks. GPs, Rheumatologists and others may want you get to off prednisolone quickly (and yourself to be sure), but most of us have found out the PMR has a mind of its own. If you do try to speed matters up with tapering down, PMR is very likely to come back and bite. Try not to have expectations about when you may get to zero! Chances are you would be disappointed.
I, for one, strongly recommend the DSNS reduction method, which certainly worked for me.
Good luck.
Thanks Charlie, for your wise response. I don't was my PMR to bite me.I will look as DSNS. GG.
👍
Come to think of it 💡my aunty was ill for about 2 years when she had PMR and recovered completely and went on to become a renowned archaeologist and lectured across the world.
If it was me, I think if I was asked to drop 1mg every two weeks, I would bring the semi-official rheumatology society guidelines my GP is using .... 1mg every 4 to 8 weeks and ask why they want it so much quicker and what the risks are. And advice from the forum too. My GP told me about the charity pmrgcauk so I feel they should be willing to listen to it.
I have always been ok reducing by 0.5 at a time down to 4mg.
A lot of us where brought up in the age when adults ruled and we did as we were told. I’ve lived long enough to know there is no such thing as an infallible expert. All I would say is experiment and then listen to your body.
Wouldn't it be great if you could check whether you were taking enough prednisolone, or whether the inflammation was increasing?
Yes - you know subjectively how you feel. In my journey, however, I found that my temperature gave a useful warning. If my average temperature was increasing, the inflammation was returning because I had decreased my prednisolone dose too quickly. And the rise in temperature generally preceded a noticable increase in aches - or the time when I 'flirted' with GCA.
If you want to, get a digital thermometer, measure your temperature under your tongue at three regular points in the day (say 1 hour after getting out of bed, mid day and at bed-time), collect a record of your results (Excel or similar), calculate a moving average (over the most recent 5 or 7 results) and plot it on a graph.
You will need to get to know your usual temperature while your PMR is well controlled. But, then, significant upward drift could indicate that your prednisolone dose is too low.
It will also show up other infections etc. so you need to 'interpret' what you see in relation to other things. But, it will provide you a continuous record of your progress. It can be collected more frequently (as is less painful) than bloods for analysis, but I found a reasonable correlation between my temperature and the usual inflammation markers (CRP and ESR).
I can thoroughly recommend the DSNS method of reducing pred. I've been on pred for almost 8 years with a GP who issued them with joyous abandon and virtually no guidance. Then I found this website and slowly but surely reduced to 2mg per day, very few hiccups. GP continued issuing pred (I didn't ask for them) and I stockpiled quite a supply of pred! He told me to be careful of those sort of websites - they can be very misleading! Thank goodness I didn't listen to him. Eventually changed Health Centre in January of last year with great success and am now down to half a mg every other day, still using stockpiled pred. The day of reckoning is soon to come as I am now down to my last little box of 1mg so I am about to request a new prescription - it will be interesting to see what the new GP has to say when my request goes through! I am intending/hoping to remain at current half a mg every other day for life. I'm 80 so presumably this is going to be limited anyway!
OH,don’t say that,you could become the next Methuselah!💐💐😜
I'd really rather not!
Maybe you are right on that,the way our poor world is going.!But on a happier note,the blue tits are in and out of our nest boxes,we could all learn a lot from nature couldn’t we?xx😜💐🐦⬛🐦⬛( sorry,couldn’t find a bluetit!) Stsy well.xx
What seems important to me is communication between doctor and patient, the guidelines say adapt the schedule to the individual but they do need to listen to do that. And patients need to know to go back if things arent working. My surgery was good for that, saw me in person a week after starting pred, and texted me to check all still ok a week after each of the first two reductions Now whenever I get a new prescription I get a text saying please contact us if symptoms return or for any other questions
Holey cow! in my opinion you have accomplished something pretty phenomenal and successful to date. I'm not sure if during this successful process, you have also been attending to how (or noticed) some subtle physiological have occurred. It is possible that you had seamless success(yea 
) I say that because it may be helpful as you more forward with your plan. You have received many insightful replies for sure.
My contribution is "knowledge of the path, is not a substitute for walking it" , congratulations so far. As you continue with your physiological journey, be attendant to any emergent symptoms (if they manifest). Personally I use a quick journal entry of dose and....hmmm any "changes" that are " telling you something". I won't elaborate ;-). That way i didn't have to "remember" anything, but had info to refer to if a "niggle" emerges. Success breeds success.
My experience with taper were initially to reduce prednisone to try to get off it. Well my body had a vote. Multiple tapers with a host of "prednisone sparing" prescriptions ( and combinations) were unsuccessful until my Rheumatologist and I found what I am on now. In my case, I would say over a 1/2 dozen different attempts, each taking 6 months or so with different tapering approaches, augmented with "prednisone sparing" meds and combinations, I learned tons about how my physiology responded ie dosing, and timing stepdown tapers etc.
My apologies if this is too wordy or "nerdy". Congratulations , all my best for your success!
Sincerely
Jeff
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