PMR Ok so on advice from doc reducing Peds . No rush 10 then after 3 weeks 10/9 then after 3 weeks 9/8. Then the pain comes back shoulders bicep muscles forearms lower back. I’m thinking have I injured myself at work but don’t think so however I’m thinking this is a muscular problem from an injury not PMR. I have had more blood tests and my inflammatory markers are normal which is why I wasn’t thinking it was the PMR but I’m now starting to think that it is !!!! I’m getting frustrated, feeling like a fraud!! And 😡 angry. Any one else in a similar position.
Martin
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A significant percentage of PMR patients (20%) I think, never have abnormal, inflammatory markers showing up in their blood tests. This is particularly frustrating as some doctors are fixated by them to guide diagnosis and treatment. Symptoms rule in these diseases and if yours are a good fit and you respond well to Pred. the chances are that you have PMR.
One in 5 PMR/GCA patients never have blood markers that go above the normal range - although that doesn't mean they are not raised for them. The normal range is 1-20, my personal normal is low single figures so if it is at 18 it is significantly raised.
And of COURSE your blood markers are in normal range if you are on enough pred - and 8-10mg/day pred is a significant dose in PMR. Pred doesn't cure anything - it manages the inflammation ongoing and as long as you are on enough there may not be enough inflammatory response to raise the blood marker which requires proteins to be produced by the liver, CRP is one and it contributes to the increase in the ESR. So a lot of people on pred may have a return of symptoms when they get below the dose they need but the blood markers lag a long way behind - for a few people as much as months behind. That means symptoms rule - they always trump blood markers. Treat the patient, not the lab numbers.
Why do you feel a fraud? It isn't your fault - though it might be your doctor's if he is pushing you to reduce nevertheless. When you get a return of symptoms at a given dose a few times - it is your body telling you to stop reducing - or at least slow down.
It sounds like PMR to me. It's possible to have PMR without any inflammation markers in the blood. I've learnt the hard way that symptoms trump blood results every time. A 1mg drop every three weeks sounds fastish to me.
What dose did you start on Martin? And how long ago? As it is difficult for people to advise without much background.
If your pain gets better with over the counter remedies...paracetamol / ibuprofen, it is unlikely to be PMR. So that might be worth a try, in case you have any related injury.
But it may be you have gone below the dose you need. How many days have you been reducing from 9 to 8? If it is within first few days it may be withdrawals which usually go within 5 days. Have you looked at the slow tapers on here, which make for a smoother ride.
Blood results sometimes lag behind symptoms I believe, and sometimes the results are not raised even when PMR symptoms are present.
One thing you could try is whether you feel better at the last dose you felt good at. ...maybe 9 or 10? Then come down more slowly. Good luck
Certainly sounds like PMR to me. As others have said just because your bloods markers aren’t high doesn’t mean it isn’t- for reasons given.
Not sure what dose you started at - might be useful to put that on your profile and date diagnosed - but as you only came on the site in April this year if you started at 15mg (normal dose) then getting to 8mg by now is very quick.
If you started at 10mg, then probably not enough to get the built-up inflammation under proper control before starting to reduce. And every 3 weeks might be a bit optimistic.
You also work so that needs to be taken into account. Methinks you are trying to do too much, too soon - and I can understand that as you run your own business, but you do have a serious illness which needs to be managed.
You are not a fraud, and getting angry won’t help either - we’ve all been there, just makes things worse!. If you haven’t read this, maybe it might help -
A year ago i was on hols, doing well, and fairly ok on 10. As I continued to reduce pain returned with a vengeance. Different dr agreed for me to go back up (To 8 from 7). Long story short PMRpro advice was 10 for three days and then slower reduction. THAT worked! A year on I have SLOWLY got to 6. About to go to 6/5.5 alternate days but just waiting to ensure I'm really feeling ready for next taper. And if it gets a bit rocky I will adopt DSNS plan. My bloods have never shown any problem since the initial pre diagnosis raised figures. (And I have a sister, 12 years on steroids with same, whose blood work never shows raised markers either). All the best to you.
Six weeks to get from 10mg to 8mg seems pretty quick to me. I found that under 10mg it worked best dropping 0.5mg every four weeks. As the others say ignore the blood tests it is how you feel that is the best measurement. Go back to where you felt comfortable, get stable, and then reduce slowly.
Hi there , I have never had hugely raised markers but my GP was convinced I had PMR and gave me A trial of pred and that's how I got my diagnosis, I'm now 22 months down the line and on 9mg daily just about to start my reduction to 8.5 and yes some days are A struggle but I'm getting there X
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INFLAMMATORY MARKERS
