I posted a while ago that I had been to the hospital rheumatology dept & was told by the senior houseman who saw me that he wanted me off prednisolone ASAP. I was then on 1.75 with little or no discomfort. Blood tests were taken. I got down to 1.25 mg about a month or so later & received a letter to say that my ESR levels were still high at 35 (diagnosis at 45) & to up my dose of pred to 5mg for the foreseeable future. I wasn’t happy about this & had another blood test at my GP but the rate was only down to 34, even though I wasn’t in much discomfort. However the report says no action required. I have upped my dose to 5mg but am wondering if I should start tapering very slowly again? Any advice/help would be much appreciated as I’m at a loss what to do next. Sorry for this long post but I feel so alone
PMR condition & ESR blood test results: I posted a... - PMRGCAuk
PMR condition & ESR blood test results
If you have upped to 5mg in less than a couple of weeks, you can go straight back. Otherwise you will need to taper. In my experience if you feel OK and your inflammation markers are high there is no reason to up the dose. My inflammation markers often go over 100 for no apparent reason but my PMR is stable.
Thank you so much. Feel reassured now
I'm a bit confused here. So you were told to increase your dose to 5 which you did, but this doesn't seem to have affected the ESR level much, and you felt OK at a lower dose. As ESR is a very general indicator, it seems the doctors are not concerned. You seem to have been left in limbo and now need to go back to your doctor, either GP or rheumatologist to ask what to do next.
thanks. Yes that’s how I feel & I have actually sent a letter to the rheumatology dept but doubt I will get a reply. I shall wait a couple of weeks then contact my GP
As stated ESR levels can be affected by many things-not just PMR (or in my case GCA) -see this from ages ago -
The senior houseperson was seriously out of order. It isn't what THEY want but what the PMR and your adrenal function will allow. What did he have against you being on pred anyway?
However - if your ESR is raised but you have no symptoms it shouldn't result in a kneejerk raising of the dose. ESR and CRP are such non-specific markers they can go up with all sorts of things - a cold or even a really bad bruise/sprained ankle or something with raise the ESR. So will stress. CRP will go into the stratosphere after an accident or op damaging muscle or a chest infection.
Symptoms rule!!!!
I have bbeen in your place many times before. Just chlll take the 5mg for the next month then very slowly .5mg per month reduce. You may never get off of Pred but if you can get back 1.75mg without symptoms just enjoy life and leave the medical opinions to them and lsten to you own body. For some reason wenpts and doctors are helhelo bent on getgetting off pred the 5mg dose is negligible and 1.75mg even more.
Good luck
you’re not alone…… there must be more than one hull city supporter 🤣😂🤣 hope this gives you a good laugh at least 😂
no it didn’t actually.
Thanks for asking. My knowledge and experience of Prednisolone mostly comes from this forum and the replies from others probably gives better answers than me. You are far from being alone. Everyone is going through the same and we are all learning and supporting each other.
I think I’d be guided more by your symptoms than the ESR. If you are well and remain so when you reduce the dose, all good.
thank you
I am so fed up with my symptoms I am up and down like a yo yo.
I have lost count of the years I have had Polymyalgia and I can't get rid of it and don't think ever will. I am taking 2mg now and am getting a phone call from Rheumy next week. I am 80
Have to say, love my doctor in this regard, she told me to go by how I was feeling and that she does not put total faith in the numbers, they can be affected by stress and as far as inflammation goes, your body could be fine. Hope that helps. My number were far higher than 35, brought on by stress, but felt fine and so kept on my regine of lowering the pred.
thank you very much. That helps so much x
I got the best advice from my GP and now I've been off them completely for four weeks. So far so good👍. I had Covid and my vasculitis flared up along with a 'Covid rash', which astounded me and my.dosage was upped to 25mg decreasing weekly by 5mg. Good luck with whatever you decide to try.
I took a reducing dosage of Prednisolone for 18 months. PMR symptoms disappeared but returned after a few months without medication. Re-started @ 15mg p/d, symptoms disappeared and now tapered down to 9 mg. Throughout, my inflammation markers have been quite low. I’ve experienced no I’ll effects from these moderately prolonged courses of Prednisolone but am unable to comment on why your GP was so keen to get you off the drug. Hope this helps.
Shame - sounds as if the underlying cause of he PMR had not entirely gone away - a few months is a common timescale for symptoms to reappear as a very low level of activity drips inflammation until it reaches a level that you ca feel. Possibly had you stayed at 1mg pred indefinitely you'd not have had the trip back to 15mg/day. We see it quite often.
I’ve only gone up to 5mg at his advice until my next appointment, which of course could be many months.
he wants me off the prednisone because of the damage they can do to your body but when my blood showed a higher than normal reading he wanted me to up my dose until my next appointment at the hospital.
I am afraid I am at a loss to give you a helpful answer. I recently had to go up to 5mg again and am tapering off and now down to 2 mg daily. Recent blood tests showed abnormal liver function, but like yours, said no action needed. As the senior houseman seemed to want you off prednisolone ASAP, I suggest you ring either his secretary or your GP for advice. So sorry not to be more helpful, but I don't want to give unsafe advice.
thank you
yes it happened to me too, took me off 5 months later was told my crp was high, but as i am already fat i did not go back onto it. I feel that the side affects, moon face lack of sleep hallucinations hot sweats waight gain and generally feeling unwell are worse that the pain that i can live with.
I hope you are functioning well, even with some pain. For many of us good health, taken for granted in our youth, seems a distant memory and we have to compromise between symptoms knowing that it will probably be for life. Life’s a lottery and I am well aware that there are many worse off than me but we all need some hope to keep us moving forward. One thing is certain, change is inevitable and the natural state of things. Let’s hope it’s change for the better.
If it was me, I would go back down to where I was prior to going to 5mg and if I was symptom free; but that is my personal opinion. Alternatively you could wait for your next blood test to see if it has brought your markers down, but then you would have to start tapering to get back down. As you are symptom free your ESR may be raised for some other reason other than PMR. Infections such as chest infections or throat infections.
have to say I'm at a loss as to where these Dr's get their ideas from. We know our own bodies don't we? We know when we are in pain and uncomfortable completing day to day tasks don't we? We know when things are good. And then...
We then go to clinic, have a blood test, see a consultant or a Dr or a specialist nurse and your life turns upside down....
You must go up, you must come down, you must go up again, we feel its not pmr it something else. We want you to take this, no don't take that it's no good for you it's pmr start reducing your Pred.
My Same Day Emergency Clinic consultant is now telling me I've had Adrenalin Crisis and am taking meds for that......
Driving me crazy.
listen to your body and say it like it is, you know you.
My rant is over 💕
yes I do know me & I shall start tapering again next week & see how it goes. Thanks for the rant
sorry feeling better today 😏
that’s ok. It’s a very frustrating condition & the medical profession, in my opinion, don’t seem to have much idea & seem to treat this condition as a poor relation compared to other autoimmune conditions.
sorry I cant help you I have been off prednisolone for over a year now.
It would appear that you need advice from either your consultant or GP. I have been working with my GP since April on reducing my Prednisolone: at first, he asked me to reduce it too quickly, and I was soon in a lot of pain and high inflammation markers. Since then I have cut back gradually and now take 15mg one day, 10mg the next, to come down again in October. At last I am beginning to feel much better, although of course I would prefer to stop the Pred all together. I am lucky that my GP keeps in touch and if I have any worries I can leave a message and he will ring me back. We all need reassurance, and as you say we can feel very alone when trying to do the right thing with regards to medication. I hope you will now get advice and as a result feel better physically and mentally. Good luck!
Glad this seems to be working for you, but in the interests of informing newbies who may read this reply, in general a large daily alternating dose does not work well for PMR. From 15 to 10 is 33%, a large dose change, and usually when tapering 10% is suggested, using a slow taper method if an overnight drop is difficult.
thank you very much
One thing we learn when we have PMR is we are all different. Medical providers are not used to treating such an idiosyncratic disease. Once I got a diagnosis I've been very lucky in that my doctors have allowed me to taper at my own pace. Just to relate to what you've posted, we started measuring CRP rather than ESR about two years in, and for the most part it was always higher than I think is considered normal. Nevertheless I was successfully tapering to a very low maintenance dose with very good control of PMR symptoms. About 20 months ago I had a major flare with the highest CRP ever. I also was in pain, so did take a higher dose than I had for years, although not back to the start (took 10 instead of 15). I've been back close to my former usual low maintenance dose (around 2-2.5) for a few months now, and tapering very slowly. The odd thing is my CRP is now the very lowest it has ever been.. The main change in my physical life has been a succession of vaccinations, and I tend to credit ShingrixX2 and second booster (Moderna after PfizerX3) for doing something positive to my immune system and maybe knocking out whatever had been causing the PMR-related inflammation to continue for so long (since at least 2014, although on pred since '15). Hoping the effects continue and don't wear off....
thanks that was so interesting & certainly good for thought. Of course we know ourselves better than any medic can & this condition seems to affect everyone in a different way as does prednisolone
hello Hullcitysupporter! I have read through all your replies and can see that you have been given lots of very helpful advice and tips. I don’t think I can really add anything useful to what others have said, only repeat that PMR is a real minefield to navigate and mostly we have to make our own decisions at the end of the day based largely on fellow sufferers experiences! All I can tell you is that it is possible to overcome PMR and completely come off Prednisone. I was taking it for 6 years and have now been in remission for 6 years. So I guess my best advice would be not to despair and stay focused! All the best, Maureen 😊
thanks Maureen x
Like you I find the increasing/decreasing confusing, especially when I get differing advice from various health professionals. I find this site so helpful though as there are many more long term members who are willing to share their wealth of information and experience with us. Good luck on your journey x
thank you
cut back
Hi there I am also on the tapering journey but only down to 3mgs taking it very slowly.I do gather from other sufferers that when you get to a low dose it does become more tricky. My blood tests so far have been ok but what lies ahead I can not predict and so of no real help to you. I just wish you good luck and keep me posted on your progress.
thank you. Yes, tapering isn’t easy as, for me, fatigue was a problem, but I would have carried on tapering had I not been told that the inflammation levels been fairly high. I will keep posting when I begin tapering again. I am quite wary at the moment
Sorry Hullcitysupporter, I have been away, at one of those nice NHS hotels for a while with pulmonary embolism. Gettin' old is not for sissies.
But you have had plenty of sound advice from the very experienced folk on the blog. Me? I've had PMR now for 7 years and counting, for some, it is over very quickly, but for a few of us, it clings on, and we live for our next pred dose. Hope you are one of the gang who get over it quickly.
Well recovered though I hope? What caused it?
I also have sleep apnoea, and I have my suspicions. The CPAP ventilators have very high pressure, and as an engineer, I am just a bit uneasy that blowing high pressure air into your lungs for 6-8 hours every night, might just help clots to form. And I do have multiple clots. So it's blood thinners for 6 months at least then further checks.
Thanks for asking, you are always thoughtful.
Blood thinners aren't the end of the world - been on mine for about 6 years now, no problems.
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