I have had a new rheumatologist for the last 18 months who on the first telephone consultation said that she was not concerned with me being on 2.5mgs. of prednisolone and that it was OK to stay below 5mgs. However over the last year she has now become hell bent on getting me off Pred. I would be delighted to oblige but after quite a few attempts of using the slow reduction method I still cannot achieve the half mgs. drop from 2.5mgs. to 2. When I take the 2.5 mgs. at 1am I normally sleep right through the night but not long into the drop to 2mgs I start waking around 5am with neck, bilateral shoulder pain and tingling cramp like pain down both my arms, wrists, hands and fingers. The wrist and hand pain does not improve over the day. My CRP done with other bloods last week at the surgery was 18. My GP advised me to return to 2.5mgs. which hasn't unfortunately resolved the problem. The rheumatologist is pressing me to start me on methotrexate and my next appointment is in August.- I am not overly keen to put two quite nasty drugs into my 79 year old body. I would really appreciate any thoughts on this.
Started on 20mgs. of prednisolone nearly 8 years ... - PMRGCAuk
Started on 20mgs. of prednisolone nearly 8 years ago for PMR. Still unable to drop to 2mgs.
Our resident patient-experts constantly point out that world-renowned experts in PMR are happy to keep their patients on a low dose longterm. Two mg is often given as the number but we have to remember that some people metabolise pred better than others. If 2.5 gives you the same benefits that 1.5 appears to give me, then you should be able to stay at 2.5 rather than repeatedly being forced to poke the sleeping PMR tiger. I agree with you that you're better off with a low dose of pred rather than introducing another med with its own suite of side effects and no guarantee it will even help.
Thank you Heron, I just hope that the rheumatologist agrees. I fear her wrath!!!
You are a patient, she is working for you. Do you need a rheumatologist? Can your GP take over as you are at such a low dose of pred? Or do you have other issues which require a rheumatologist?
I expect the return to 2.5 wasn't as successful as expected because you needed a higher dose in order to deal with the flare. Sometimes it's not just going too low (and you came off altogether) but the disease activity increases and you need a higher dose for a bit longer until things settle again. (Been there, done that.) Do you have enough pred to take maybe 5 mg more than usual? That's what is often recommended on here. One doesn't stay at the higher dose too long so it's easier to drop quite quickly back to just above where the flare occurred. You would have to be a bit careful in order to find your new "lowest best dose" without causing another flare.
And just recently there was a little conversation in another thread about how odd, yet true, it is that even half a mg can make a difference!
Thank you Heron, I can see that I will have to go back up to 5mgs temporarily and then try returning to 3mgs.. If I can get back to 2.5 mgs. I might try as PMR Newbie suggested and try an even slower reduction with 0.25 at a time.
Best of luck! Be aware, however, that if PMR still lurks no matter how slow the taper there will come a time when it simply won't work. My experience: after about five years of pred I spent a whole year tapering from 2 mg to zero. Having heard from others that they had a bit of symptom revival when they got to zero but after hanging in for a few weeks all was good, I tried same. Within 6 weeks I was back on pred. Initially the old 2-2.5 mg was fine, but after a few months I had a major flare, initially blamed on osteoarthritis. After getting more sensible (I hope) settled down with letting my body tell me if it's safe to proceed with further taper and not try to match any schedule. Always, always, introducing the new dose even more slowly than with dead slow taper plan. Last blood tests were about ten months ago and for the first time CRP was down to low single digit, so fingers crossed for success this time. 
As HeronNS says no matter what taper you use, you will not get below the level your illness needs … if you need 3mg today, tomorrow, next week, you need 3mg - end of..
… but that doesn’t mean you shouldn’t try to reduce in future - just don’t automatically assume to can step down just because you [or your doctor] wants you to.
Agree with everything that Heron has said and perhaps a few days at 5mg might get things under control again. If you are happy with your doctor perhaps you could ask him to take over your care and depart from the Rheumy, unless you need her for other reasons. If you do stay with her perhaps ask why the sudden change in her attitude when things were going well. Can't see any point in adding another drug, with all it's possible side effects/problems, when you are on duch a low dose.
Thank you Bcol. It was just a high CRP of over 300 that caused me to be referred to Rheumatology. There was a 8 month long waiting list so I paid for a private consultation, something I now regret as they then transferred me to a NHS clinic.. My surgery was very good but since Covid you are lucky to see the same GP twice.
You probably need more to clear out the inflammation that’s built up,- this link explains usual procedure for dealing with a flare - and then drop back down to 3 or 2.5mg
healthunlocked.com/pmrgcauk...
..and at such lose doses, really don’t see the point in adding in another drug.
Thank you Dorset Lady, I can see now that I will have to treat this as a flare, I was hoping to get away with a smaller increase.
it seems to me that the NHS has changed its protocol on steroids this last year or so and doctors are now pressing us to get off them asap
I couldn't agree more, SID3. Although I've only been on Pred for a year now, I can sense a change under the NHS. I say that because when I read a lot of these posts, I can see that where people stayed on low doses, possibly for life, and there didn't seem to be a problem, there appears now to be a real push to get PMR sufferers off Pred. I realise that this has probably been going on for some years, one way or another, but I sense a step up in pushing to get off Pred completely. E150 actually says 'over the last year she has become hell bent on getting me off Pred'.
At the moment, I am tapering v slowly from 8.5 to 8 mg but my rheumie has already suggested that I might need MTX to get me down further. I have other medical conditions and am averse to putting 'two quite nasty drugs', as E150 says, into my 75 year old body, especially with the contra-indications with my other drugs. If I taper v slowly as I am now, I don't see why the push.
So, I agree with you when you say that 'the NHS has changed its protocol on steroids' though we don't know that for certain. An aquaintance of mine, who has recently been diagnosed with PMR after months of being told it was the menopause (52 yrs of age), was told by the medical profession that 'they are seeing a steep rise in PMR' of late.
One more point, I agree with E150 when she says 'I fear her wrath' ie that of the Rheumie. I feel a bit like that too😒
The silly thing is that by adding MTX they are adding a LOT to the costs because of the monitoring - though they seem to have pretty much dispensed with that too, There IS a problem with long term use of many drugs costing the NHS a lot because patients weren't monitored properly and repeat prescriptions were sent out even when patients weren't using then up. There is also a lack of understanding that PMR can last a lot longer than they think. And that there is the adrenal insufficiency factor to consider in a good half of patients - taking a longer slower reduction is essential.
Thank you PMR pro, I think that this consultant is of the ilk that believes that PMR is short lived. It might not be her specialist subject but I had hoped that being newly appointed and perhaps younger that she would be up to speed on it.
Thank you tempusfugi. I think that you have a very wise attitude to reducing steroids as when you are pushed resulting in a flare it defeats the intended purpose and increases and not lowers your cumulative dose.
Think NHS is "asking" GPs to look at any medication that is prescribed long term - some obviously cannot be limited, but it appears that steroids can. Maybe because in many cases they are not considered "life saving" - such as heart meds etc...
I think SID3 that has to be true. I have just looked up a link that I saw on here a while ago -- re BMJ open 31/08/2022 - regarding a small and limited flawed research project that looked at the long term oral and inhaled steroid use from a mental health brain angle. Wonder if she has read this!!!
Agree whole heartedly with the other replies. Ten years ago I started on 60 mg (was in danger of developing GCA) and gradually came down to 2.5 after about six years. Could never go down another half mg without a flare. My Rheumatologist said I was obviously very sensitive to that reduction so should stay on 2.5 as a maintenance dose and that as it was such a low dose she was not concerned. I have since been discharged back to the GP and remain on that dose. Now realise how lucky I was to have a Rheumie that recognised the need to remain on pred.
have the same problem but with GP not Rheumatologist. Rheumatologist said ok to be on 2 but GO wants me off altogether. I have been on 1.5 for nearly 2 weeks. Don’t feel ready to drop to 1. GP thinks once I am on 1 I can just stop taking. Not sure I will be following that advice
Rheumatologist also wrote to GP to say dose was too low to be given MTX. 😊
Your rheumatologist wants her head read as my aunt would have said! There are no guarantees that it will get you off pred and while there is a role for it if you were stuck at 12.5 mg, there really isn't and good reason for introducing different and potentially unpleasant adverse effects at 2,5mg and she should stop playing around poking at the PMR,
Prof Dasgupta of Southend UK, a world name in the field, told us a few years ago he often keeps patients at 2-3mg long term as it reduces the risks of relapses. My own rheumy here in Italy, also a world name in the field, says he has many on pred for years but most are well under 5mg. I started on 15mg nearly 14 years ago - a year ago I was at nearly 20mg. It has taken Actemra to get me down below 10mg, I'm a bit stuck at 8mg pred but my doctor doesn't expect me to get below 5mg. I have tried 6mg, real flare after just a few days. 7mg was really wobbly. He was even fairly relaxed about me being at above 15mg. I did try MTX - it was a horrible experience for me.
I would sit down with your very sensible GP and ask them if they will take over your management. You don't HAVE to go to the rheumy.
I was able to keep to one very good GP until Covid arrived. Now you rarely see the same doctor twice. I will try to keep to the young GP that I have seen this week as she is also monitoring my systolic BP. I just hope that she is going to be a permanent fixture at the surgery.
I had a struggle getting below 2.5mg as well. Over the past 2years or so 2mg was my nemesis. After mini flares and bouts of AI ( adrenal insufficiency), i decided to stick to the 10% rule and double up on the weekly schedule ie, repeat the week again before the next downward reduction. So far it has worked and my next step is 1.75mg to 1.5mg.Once you're stable again, try 2.25mg ( half a 2.5mg plus 1mg). I know it's a fiddle but at these low doses I think it's worth the effort. Also with a CRP of 18 you are probably not yet in remission and need at least 2.5mg. For comparison, my symptoms track my blood results and my CRP is consistently below 5 despite being 185 on diagnosis!
Thank you for a very wise suggestion, I will have to follow the flare protocol first- I was hoping to get away with a smaller increase. I will then try a 0.25mgs.reduction which will be much quicker in the end if it succeeds.
Agree completely E150, why would you want to introduce a second set of side effects? My rheumy has just written to GP to say that as I'm down to 5mg Pred (plus Hydroxychloroquine) it's safer for me to stay on that rather than introduce another DMARD. Similar to PMRnewbie2017, I'm doing a super slow reduction from 5mg to 4mg. I repeat each weekly stage another three times before reducing any further. It will take 6 months to get there.
I haven't posted a reply here for perhaps over a year, but just to report back on my progress and also to address the OP's issue, allow me to give you the latest on how I have been dealing with PMR after nine years.
I take 1mg in the AM and 1mg at 6pm.
If (and only if) I am having noticeable symptoms mid-day, I take 1mg with lunch.
My symptoms are moderate, but include fatigue as well as pain in my feet, hands and hip joint areas.
I have noted great seasonal variability some years, and last year I actually went from February through July on zero pred, though with the help of my going out the door every morning for two hours of bike riding, running or walking.
My symptoms came back in August during a heat wave and also when I started doing some automotive work in lieu of my morning exercise. I maintained a very light, stable body weight through it all and to this day.
My rheumy has always been ok with my setting my own truly minimal dosage in real time in accordance with my symptoms, and I am allowed to refill my own 300mg prescription twice before again contacting them for a new 300x1mg prescription.
Also, for what it's worth, I'm male, in my early sixties and remain quite active. My original dosage from early 2014 was 15mg/day, and which was quite effective until I had too-quickly tapered below 10mg. It took me 2-3 years to ever test a dosage as low as 3mg. Again though, there has also bee a lot of seasonal variability to my dosage requirement (usually much better in winter).
Best of luck, El50!
Dan
Good to hear from you Dan - would you be so kind as to post this as a new thread as well? It is a really good post to encourage new people that life with PMR isn't alway bad and exercise is possible! More will see it as a new thread than here as part of one they may have already read.
Great post, Dan, thank you 😊
I am especially struck by what a difference it makes that your rheumatologist allows you to independently vary your dose, within limits guided by his expertise. Great progress x
I couldn't agree more.
Thank you Dan. I also hit a snag at the beginning of PMR when my GP was a bit too enthusiastic and dropped me from 20mgs. to 15mgs. of Pred .but was also very supportive until Corvid hit , I inherited a new Rheumatologist 18 months ago and on the first telephone consultation I was told that it would be OK to stay below 5mgs. I really am not sure why her attitude changed 6 months later. My life was good on 2.5 mgs. but not on the several attempts of dropping to 2mgs.
As long as there are very uncomfortable symptoms still lurking, I see no reason to ruin an almost perfectly good day by lowering the pred dose even further.
It seems that around 2.5mg of prednisone is a common landing spot for the later, more stable years of the illness. There are variables in the dosage requirement and for me it's plenty of daily exercise allowing me to test a zero dosage from time to time around this nine-year mark.
It helps that I have become better at recognizing changes in my symptoms, so that I can better adjust my dosage and better correlate my symptoms with variables in my life's activities.
Thanks Dan. I am nearly at the 8 year mark of PMR. and have been fine on 2.5 mgs for a long while. I must have had about x 5 attempts now at trying to lower the dose from there.. This time I kept going with the drop for over 3 weeks and ended up with difficulty even trying to lift a kettle. I just hope that this consultant will see that she is trying to flog a dead horse at present. I was also told that as my CRP has now been stable on 9 for around a year that I dont' need steroids -- but I wonder what it would without them as it has gone up to 18 since this drop.
Which bit of your inflammatory markers being normal is due to being on enough pred poses them such a problem?
I wish I knew but I will certainly ask the consultant at the next telephone appointment in August when she would like me to be down to 1mgs. I really would like to know how she explains the CRP rise after the last reduction. I am also due to have my ESR and CRP repeated by the GP at the end of June.
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