PMR with low sed rate

[fishingnut]

I have had three different doctors for PMR, all with a different idea on Prednisone dosage and tapering. My most frustrating issue is that I have had near normal SED rates, the highest being 35 when I was nearly paralyzed with pain. I have read many studies and articles that state up to 20% of PMR patients have normal sed rates, but my rheumatologist dropped me from 10 to 5 overnight because my sed rate was in the normal range. Then a week later said to drop to 2.5. Big flare up. Anyone else have sed rates with little elevation?

[Hidden]

People with low sed rate will be along I am sure. Mine has matched symptoms.

But I wanted to say.....when will drs realise that a reduced sed rate merely tells you pred is working...it's doing its job of reducing inflammation and therefore sed rate. Yet they insist on banging the dose down by 5mg and then 2.5mg. I am sure you weren't surprised you flared.

[Soraya_PMR]

Do ask your rheumi whether he was asleep during that particular lecture? Frightening isn’t it!

I’m one of many on the forum who have ‘normal bloods’, my ESR climbed to the lofty heights of 11 pre pred and I have no idea if this was possibly high for ME. (To my knowledge I’d never had an ESR previously).

This for my GP was a clear indication that I did not have PMR, and then I quoted the 20% thing to him, and when pushed he finally admitted he had another lady with PMR and normal bloods. I was referred to a rheumi who said “It happens sometimes, no one knows why”

So your SED rate dropped to normal levels. Wow! That’s what is supposed to happen! That’s what pred does. It may well stay low now and never rise even though you have an increase in symptoms. A decent doctor will look at his patient and hear what the patient says, and not contradict with nonsense about normal bloods.

Get yourself back to 10, maybe a quick blast at 15, and stay there a while before you drop to 9.

[fishingnut in reply to Soraya_PMR]

Thanks, it’s frustrating to try to convince a dr that you really are in pain. My first rheumy spent no more than 10 minutes the first visit, 5 the next. He wanted only to see the blood levels.

[Soraya_PMR in reply to fishingnut]

It makes me so cross! In some ways, I have it ‘lucky’. They have to listen to me as blood levels tell them nothing.

Where are you? Maybe someone can recommend a rheumi that listens.

[fishingnut in reply to Soraya_PMR]

I’m in Honolulu, but will be moving back to Idaho soon, IF area.

[Soraya_PMR in reply to fishingnut]

As & when/if you decide you want to find a better rheumi, put up a new thread. (This will get lost in here)

[Yellowbluebell]

My rates were elevated but not hugely but my gp still treat my pmr based on symptoms and instant result from taking pred. There are lots of people with no raised markers but that still have pmr. Dropping a lot in one go is not recommended and no wonder you had a flare. How long have you been taking pred?

[fishingnut in reply to Yellowbluebell]

I acquired PMR overnight like most of you in Apr 2018 but it was a couple of months before I was properly diagnosed. Was on 10 mg for 4 months, then 5 for 3 months, but lots of pain. A new rheumy said PMR shouldn’t last more than 9 months, so took me down to 4. Yikes! I went back to my GP who has told me to take what I need and listens, so went to 15 for a few weeks and have gradually tapered to 8 and doing better. Pain is not bad but my legs have always had a heaviness even on the higher dose.

[PMRpro Ambassador in reply to fishingnut]

Good lord - what on earth gave him THAT idea? What a clown - needs to do some serious reading methinks...

[Yellowbluebell in reply to fishingnut]

Sorry but hes an idiot!. Both my gp and rheumy both said a slow taper is more successful and that it would hopefully avoid a flare. Your gp sounds sensible.

[Soraya_PMR in reply to fishingnut]

I suggested above maybe finding another rheumie, but ignore that, stick with your GP. A competent GP can manage PMR.

[SheffieldJane]

You are so right and your doctor’s knee jerk response is causing you to suffer. It’s like Paracetamol working for a headache so the doctor bonks you on the head. I’d return to 10 mgs or at least ensure that the Rheumatologist knows that there was an immediate acceleration of pain. They are still so afraid of the co-morbidities that can come with Pred. However, recent studies dispute this at PMR doses.

[PMRpro Ambassador]

An ESR of 35 is NOT near normal!!! Anything over 20 is a sign there is something going on and up-to-date thought is that it should be looked into whatever age you are. My sed rate was never above 20 even when I could barely move - my personal normal is low single figures.

And gosh - if the sed rate DIDN'T fall to a much lower level it would be a sign the pred wasn't doing what it was supposed to be. It doesn't mean the underlying cause of the PMR has gone away - it means the pred is still enough. Symptoms ALWAYS trump blood markers - lab values often lag behind when you are on pred. And when you aren't if it comes to that.

[fishingnut in reply to PMRpro]

My 35 was pre-Pred, but dropped to 8 with only 10 mg, so pretty dramatic drop on even that low dose. I think I must have a very low ESR normally. I did eventually go back up to 15 and have tapered to 8 over the past few months, now in my13th month of PMR and am managing it pretty well.

[GOOD_GRIEF]

Jeezaloo these doctors seem to be barmy.

It's like giving aspirin to a patient with a fever, seeing the fever so down withing an hour, not giving another dose in 4 hours, and wondering why the fever us raging again 7 hours later.

Don't they understand that medicine works when it's present, and unless the condition is gone, the symptoms return?