I have been tapering down the prednisolone now for quite a few weeks. Going down 1mg every 2 weeks, now on 4mg.
My doctor has ran some tests as I have bee having a few bowel problems (mentioned on a previous post). It is thought that after several months on Lansoprazole I may have developed side-effects. Now off them for 4 days and although bowel seems to have settled a bit I am still having a few 'loose motions' with a little mucus.
My doc has said my blood count is normal but my ESR is at 21 (was 67 when diagnosed with Polymyalgia back in May this year). The result he says is "abnormal but expected with no further action", I find this a bit strange after all 'it's a abnormal". I am a worrier, anyone here got any advice or experienced something similar?
I have been having a bit more pain in the neck and shoulder blade area
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Karendeena
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I am concerned that you are tapering your steroids very fast. I am having trouble going down far slower than that. I was diagnosed in June and am finding 9mg and a 1mg per month taper problematic. Maybe you should increase your dose a bit to help sort out your neck and shoulders and then decrease more slowly?
I have been completely off Lansoprazole for 2 weeks now after 2 weeks of alternation of 1 day off and 1 day on and am just starting to experience some real improvement. I believe that it takes at least 2 weeks for your stomach acid to start to normalise. It might even have gone up too far as a rebound reaction to stopping.
Thanks Seacat30 really appreciated and yes I think I am reducing too quickly... I think it's because my doctor wants me off them as I can't take the PPI and being on anticoagulants adds to the problem.I wondered if it would take more than a few days to normalise stomach acid, my bowels are still not right. I will wait and see if there is any improvement in a week or so. Did PPIs not suit you either?
I’m sorry to hear of your difficulties. Sometimes doctors communicate in a way that makes sense to them, not to us, I think! Re your ESR, yes it’s a little high (“abnormal”) but as far as the doc is concerned, not high enough to warrant any action. So I’d try to take some comfort from that, if you can x
Re your pred reduction and increase in pain, I agree with Seacat, 1mg per fortnight seems very fast. I’m relatively new to this forum, but have absorbed from advice given on here that 1mg per month is plenty fast enough, and 0.5mg might be better……basically don’t reduce by more than 10% of your current dose.
It seems likely that your higher ESR and increase in pain may be due to reducing too quickly.
I’m sure someone else will be along soon who has more experience than me, but in the meantime, take it easy and don’t push yourself too hard! And go back to the doc if you don’t improve and are still worried. All the best to you.
Hi Karendeena. My ESR went from 21 in June ( which GP passed as normal) to 27 in July (also passed as normal) and I was told to carry on with next taper to 7.5 mgs Prednisolone. I had faith, but then a major flare followed and I've ended up going back up to 20 mgs - over a few weeks because pains would not subside. Just started my first reduction by 1 mg per month, so it will take me forever to get back where I was. My Rheumatologist could not understand why the GP ignored the steady rise. I'm very angry with them. So now at least I have access to my own results and will make my own decisions with the help of HU who at least give sensible advice. Hope things turn out ok for you.
I agree with your rheumy - I can't understand why the GP ignored a rising trend other than total ignorance of the way a "normal range" works. It isn't a range that is acceptable in a single person - it is a range that applies for a large population, 10,000 subjects is typical, and each person within that group has their own personal "normal". The whole point of checking it is to see trends - and act on them, not ignore what is obvious.
Did you really need to go back to 20mg and start over again? If a flare happens, using a higher dose for a short time and then dropping back to the previous dose that worked is usually enough, up to 2 weeks you could have dropped back to 10mg, saving a LOT of time and pred.
Again, I went to the GP to ask what I should do when I'd upped the Pred to 15mgs but was still having pains after 2 weeks in the pelvic area, buttocks and knees. He said to raise again to 20 mgs, so I did. Wish I'd pushed for another blood test. If the ESR was ok I need not have increased. Now, a new taper plan of 1mg a month has been sanctioned by the GP and Rheumatology won't challenge that. My ESR on 21st September was only 2 and CRP was 0.6 I've learned who not to trust. By the way, my complaint to the practice regarding loads of issues of 23rd August has still not been answered, though I did receive an acknowledgement. I hope they're struggling to find a satisfactory response.
Pelvic area, buttocks and knees is often due to myofascial pain syndrome or what is now called greater trochanteric pain syndrome - it probably wouldn't raise the ESR. But don't be misled like a lot of doctors - if you are on pred the inflammation response doesn't always develop because there isn't enough inflammation for long enough to trigger the liver to make the proteins.
I am beginning to wonder what is going on with GPs. Re my recent post stressed. My recent call re Lanzaprole has left me stressed. Not a call with a GP but a pharmacist. Not very clear about instructions. If GPs haven’t time to speak to patients then they shouldn’t ask someone else to do it.
He is probably going by symptoms rather than numbers. It is only just out of range - the usual top end of normal range is 21 and some people have slightly higher ones without there being anything wrong. But have you made it clear to the doctor that you are having symptoms so the inflammation may be flaring? That is a VERY fast reduction and it sounds as if you are round about the borderline of being OK and not. It is said that a reduction rate of more than 1mg per month is predictive of relapse.
Your doctor may well want you off pred - but all that will happen is that all the symptoms of PMR will return. You don't have to take a PPI, many of us don't, but if the doctor is so concerned about your stomach and acid production, he could put you on to an H2 antagonist which will do exactly the same job. Examples are famotidine and cimetidine. Good marketing for the PPIs has convinced them they are far superior - there isn't that much difference and they have different adverse effects
Thanks PMRpro, I agree shoulders and neck becoming more painful with limited movement. Never did go completely but getting more problematic as I reduce the pred. It's my heart consultant as well that wants me off them, apparently no good for afib.I get scared as 1 tablet affects another problem, never had all these problems until I started taking prescription meds!
Just another question, my doc has agreed to provide famotidine but says the side effects can be the same with stomach/bowel problems, what are your thoughts? Been off the PPI now since Friday and I hope things are now beginning to settle, fingers crossed 🤞
The side effects with famotidine are usually different because the mechanism is different. My husband cannot cope with a PPI at all, he practically explodes, but is absolutely fine with famotidine.
Your cardiologist may be quoting the official line - but my a fib is linked to the vasculitis and if I flare, it gets worse. Part of the reason for being on the dose I am is to help calm the a fib down - and my cardiologist has been fine about it. She can't offer any more for the a fib, if the pred helps, she's happy.
At this low level you seem to be tapering very fast. I am now at 4.5, after tapering .5 after I hit the 9mg. mark. always feel the rusty robot legs, but keep on going
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