It’s 2 1/2 years since original onset and diagnosis of PMR with bilateral upper arm pain. I started on 15mg of Pred and have been reducing slowly using Dorset Lady’s plan of 1/2mg reduction every 5 weeks, since I got to 8mg. However since reducing from 4 to 3 1/2 mg I have pulsating pain in my right upper arm (left arm is ok) and Im wondering if it’s inflammatory, ie PMR. Paracetamol helps, as does Ibuprofen (I’m avoiding the latter as I’ve had a stent in one of my heart arteries). One of the GPs I’m seeing says PMR is bilateral so it’s unlikely and that I should continue reducing. I’ve been on 3 1/2 mg steady-state every day for 2 weeks, and 6 weeks since starting the 4 to 3 1/2 slow reduction. Reflecting back I think I became aware of minor discomfort when I hit 4mg but I continued. My wife has suggested returning to 4 mg, what do you good people think?
Many thanks for reading, looking forward to hearing from the members.
PS Blood results taken 16/5/22: CRP = 16 (a slight drop from 21 two months ago) and ESR = 35 (more or less constant at this level for 6 months or more).
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Bilateral- yes almost always. Plus if painkillers helped unlikely to be PMR Have you done anything different to cause an issue with your arm - pulled muscle, ligament? tendinitis. Rotator cuff? - or an issue with your neck? Even coronary related as you have stent?
I would be inclined to put a hold on taper for a while particularly as you felt a bit of discomfort at 4mg - was that just the arm or general? Agree with your wife a return to 4mg might be sensible.
Presumably GP didn’t suggest what it was if not PMR?
Agree may a call to 111 required, and probably back to GP next week for further investigation.
Hi there. I agree that PMR symptoms are usually bilateral but it's concerning that your GP hasn't referred you for investigations into the right arm pain: especially so considering your history.It won't do any harm to to return to 4mg Pred and perhaps a bit more but personally I would want to know what is going on with the arm pain and I feel this shouldn't be ignored. Your CRP shows that you have inflammation rumbling on and if you know for sure that you haven't undertaken any activity to cause a strained or pulled muscle a call to 111 is advisable and entirely appropriate. A second opinion is never a waste of time.
Wishing you well.
I have edited my reply to say that PMR symptoms are "usually" bilateral which is what I meant to write. There are, of course, exceptions to the 'rule' in many instances. A good example is that no one under fifty (used to be seventy, then sixty) can have PMR!!
It isn't ALWAYS bilateral - it can start on one side and only appear bilateral considerably later. But when it is unlateral it should first be considered whether it is something else - and even more so whan it resolves with paracetamol. PMR very rarely is helped with paracetamol, NSAIDs might help but mostly not.
I wouldn't continue reducing at present - there's no hurry at this level and adrenal function will probably thank you for a bit of a rest from tapering. The reason for the arm pain needs looking at. While right arm pain isn't really ever thought of as being cardiac in origin - it CAN be, there are no hard and fast rules. It just so happens I was watching an ambo service dcumentaary the other night where a gentleman had had right sided chest and arm pain for the previous 3 days. Only when he couldn't move at all did he seek medical help - and when the paramedic put the ECG machine on him it turned out to be a massive anterior wall heart attack. He was very lucky.
Right arm - I assume your dominant arm? What have you been doing?
Yes I’m right hand dominant and for the last few months we’ve been doing jobs around the house in preparation for sale (at last, it’s on the market).I awoke at 7am today answering the call of Mother Nature. After Omeprazole I took 3 1/2 mg uncoated Pred, having recently decided the 2 1/2 mg EC wasn’t helpful - it was taking too long to become effective (I read here, from you possibly, that EC takes 4 hrs to start having an effect).
So here I am typing the update, 3 1/2 plus paracetamol has diminished the pain to an acceptable background state.
In all probability upping to 4mg would be helpful, but it could then mask something. Talk to the Dr - if I can, that is. Otherwise I could use my own judgement with guidance from the forum, those with years of experience behind them.
Have you tried taking the EC before bed? It won't be released in the body until the early hours, about 4 or 5 hours after you take it, so shouldn't affect adrenal function or keep you awake but will make mornings better.
I haven’t tried Pred at bedtime tbh as I seem to accommodate Pred, even if I’m in a hurry and skip Omeprazole. I’m thinking of ‘ditching’ EC and stick to the ‘cooking’ version of Pred.
I did read somewhere that in fact enteric coated may not be as fully absorbed (at least by some people) as uncoated pred. I didn't make note of the source as it's not relevant to me (only UK has this version of pred), but I think it was an explanation about why it wasn't widely recommended.
There was a study on EC - but it was to be used for lower GI inflammation, Something made them think the fact it is absorbed closer to the problem area might help the situation. But obviously, if you look at absorption by already damaged endothelium, there may well be variations. That is the whole point for us of the titration process - it removes the variations in the individual patient.
Wouldn't that mean, however, that ppl on EC should be made aware that they might need to be taking slightly more than expected, which could affect how they taper?
If I were on EC and didn't know this effect I could be quite disappointed that I had to take whatever percentage more than I thought would show I was reducing successfully?
You are reducing successfully if you get to a lower dose than you were without the symptoms returning. The absolute numbers aren't meaningful - that's what I have been saying for the last 10 years!!!!
No - don't think that is what it means. Doctors like to have a standard dose, but that doesn't work with pred - they can measure the amount going in, but they can't predict the plasma level and nor can they say that this dose will work equally for everyone so fixing a standard dose. Some patients will get an improvement in symptoms at a lower dose than others - which is perceived as good but you can't compare two people directly.
In this particular study they stopped using e/c pred because the biochemists couldn't established a specific time to measure the blood levels that suited them - plain pred is absorbed in an hour, they identified e/c pred in 1.5 hours as the soonest but even that suggests to me that patient was suffering from intestinal hurry. There is a fundamental difference: plain pred is absorbed from the stomach. e/c pred is absorbed AFTER the stomach irrespective of what has been eaten/is present in the stomach. Snazzy has said that she noticed a difference depending on whether she had eaten with the e/c pred or not, Gut conditions slow things down or speed them up. But in the end a similar amount gets into the bloodstream.
I'm on 18mg but have very few adverse effects either. It hasn't been measured but maybe I'm only benefitting from half of that oral dose, so effectively I'm only getting 9mg. Someone else may be taking 10mg but benefitting from 90% of it - also getting 9mg. But the unitiated look and see I'm on twice as much as the other person and that must be bad.
"The apparent lack of correlation between peak plasma prednisolone levels and the control of disease activity in our patients is in agreement with a previous report. The concept of an optimum therapeutic range of plasma prednisolone concentrations for the treatment of rheumatic disease is not supported by our study. Corticosteroids in most chronic inflammatory diseases should be used in the lowest dose that produces symptomatic relief, and each individual has to be treated according to his personal needs."
and you establish the correct dose empirically by starting higher than you are likely to need and tapering down to find the right dose for this particular patient. Just because they need 5mg for symptomatic relief doesn't mean that the next to walk through the door will need the same low dose.
They also say "The peak plasma prednisolone levels, total and free, did not seem to have any bearing on the observed clinical response of the patients to steroid therapy. Thus, while in a majority of the responder subjects the plasma drug levels were between 55 5 and 124-8 nmoVlI, in 6 of the 7 'nonresponders' the corresponding values were also within or above this range. We conclude that in the latter patients absorption, metabolism, and excretion of prednisolone was normal. In only one of the 7 'nonresponders' was the peak plasma prednisolone level below the normal range, suggesting poor absorption."
i.e. - differences in absorption etc alone alone don't account for the effect - there is something else going on. Maybe it is the autoimmune disease activity or types of receptors, other medications or conditions. After all - some people are blind drunk on half a bottle of wine - others aren't.
I know what you are saying. All I mean is if, for example, I'm taking EC and appear to be stuck at 8 mg when the appropriate time has elapsed for me to expect to be closer to 5 mg., I might be disappointed. But if I understood this could be because I take EC and am not absorbing the medication efficiently, possibly I would consider looking for another way to deal with whatever the problem was which led me to take EC in the first place. And yes, I do understand that we all metabolize our medicines differently and there are other factors, some beyond our control, that can contribute to better or worse results.
But I don't think it matters - if you aren't absorbing it to get a greater effect - you also aren't absorbing as much to get the adverse effects either. And if it helps with another problem that would otherwise mean taking another drug it is definitely a win
It all makes sense this discussion. I’ve persuaded myself to ditch EC and stick with plain. It’s swings and roundabouts and having tried the swings, it’s time to give the roundabouts a turn.
Haha - I would only think about food accompaniment, behaviour after taking the dose (not lying down, for example). Of course EC's usefulness is in enabling people not to have to take another drug, (although sometimes apparently not without consequences). I don't know why I wrap myself up in these conversations about things which have nothing to do with my experience. Sorry!
Fascinating PMRpro! I asked the pharmacist here in Michigan about EC and maybe putting regular pred in those little tiny capsules so it would be absorbed later. He said nope, no EC here and no to my idea of the tiny capsules. He suggested Rayos (we do have here) but I won't use that as the cost is just unbelievably out of sight. So I just use regular prednisone. I'll ask my new rheumy when I see her about all this. (I'm at 9 now: 6 in morning 9am and 3 at bed usually 11pm-ish).
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