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PMRGCAuk
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Measuring Inflammation

Hello All. I haven't posted for awhile but have a question regarding ESR level. I was diagnosed with PMR January 2015 and other than a few nasty flareups have slowly reduced my Pred from 20 down to 5, never actually pain free but tolerable. I have been, for the last 2-3 months, experiencing an increase in that awful, heavy and "hit with a board" feeling across my upper back and the other generalized dull pain. My Dr ordered an ESR which was nearly normal so she said she doesn't think it's the PMR because of the lack of evidence of inflammation. I think it is a flare but hate to increase my prednisone and start on another rollercoaster ride.

Can you have PMR pain with little or no elevation of ESR? At diagnosis my level was 98! Is it an indication that indicates remission?

Thanks for any opinions.

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Here is a current high quality medical review of PMR GCA that I thought would be worthwhile to share with the group: uptodate.com/contents/clini...

Apparently some individuals have relatively unremarkable ESR but significantly elevated CRP. The two tests don’t necessarily run in tandem. Maybe your CRP is elevated? Btw, I’m in that group with normal ESR but high CRP.

Our colleagues in this forum have enormous experience, I would say in many ways superior to that which can be found in the medical literature, especially as concerns unordinary presentations and the odd twists and turns of the disease’s course. I’ll look forward to seeing their replies to you.

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Thanks for the link ARNEMRRM, an interesting article and somewhat technical for some of us. However I found it enlightening which would have been very useful when my symptoms first developed.

Pete 🙂

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Actually, my CRP isn't high either?

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Thanks for the link ARNEMRRM

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Thank you for posting this article Arnie. I wish our primary healthcare doctors were familiar with its contents! It would have saved many of us from a lot of pain and uncertainty.

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Thanks so much for posting this link. ARNEMRRM, you are now a contributing 'colleague' as well as asking questions! Please post this link as a separate post, because it will be 'lost' as a reply in PMRpixie's post.

Same as Pastit Pete, I would have liked to have read this before my bursitis flare and therefore not have waited 2 months before increasing my dose of pred. That's life.....

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It will still get lost - I speak from bitter personal experience!!! Bookmark it...

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Thanks, will do.

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Thank you. This is a very helpful article.

I will make sure my GP husband reads it, we are going on a cruise on Saturday to Florida. It will make a nice change from all the novels he things he is going to enjoy.

GCA since April 2014 TA + 4.5 mgms Prednisone

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What am I missing ARNEMRRM. Does one have to buy a prescription to Uptodate?

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I had no trouble opening the link without a subscription nor, apparently, did others...not sure what might be the issue

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Tried again and it worked. Weird huh😉 Thanks

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I find it quite moody - and sometimes you get to read half the page and then it gets stuffy...

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Thanks! I have printed this out and will share with my Rheumatologist. She seems to keep herself up to date on the latest studies, but perhaps she has not seen this recent review. I had pain and effusions in both knees post PMR, and this mentions them as a possibility. She had never seen patients with effusions of the knees associated with PMR and especially not "post PMR". But others on this forum have mentioned that same issue.

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Yes you can, but remember the Adrenal Glands having to kick into to life as well. See how you go for a bit, if it starts to feel like your early days of PMR, then you may have to support it with a bit more. The blood tests can often bear no relation to how we feel. I imagine that there will be a craving for Pred because for a while the body feels short of adrenaline having been saturated with the stuff for ages.

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Just to answer your question " can you have PMR without elavated CRP or ESR ?" From my experience- yes. I believe that 20% of folk do not have elavated levels. I have both cranial GCA and PMR. My ESR on diagnosis was 16 and is now 8. My CRP has always been around -1 to 1. This week it is 5 - which is high for me and I will get it retested.

Me- PMR since Nov 2014

GCA since Jan 2016 on 18/17 mg of pred.

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Jackoh, you are a case in point showing that the combined experiences of the members of this group offer something that the medical literature cannot. Pixie and her physician are in a bit of a quandary now, aren't they...I hope they find their way through this dilemma safely and in comfort...

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Thanks Janicoh. Don't we all wish our doctors knew half as much as our fellow sufferers?

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Thank you for the article too Arnemrrm. Have only just skimmed it really and will go back and digest some more. Tried to access other references like to GCA but obviously not able to do that. I suppose the one thing that stood out for me was the unlikelihood of a diagnosis of GCA or PMR being given if both CRP and ESR were low. This is/ was certainly the case for me and I know others on this site. I certainly would have been stuffed if this recommendation had been followed to the letter. Apart from that some very good information that hopefully GPs will read.

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Yes - see my big post. I had an ESR of 4 and normal CRP for the whole 5 years I wasn't diagnosed despite being in constant pain and having textbook PMR symptoms.

Though some of it is because a lot of doctors don't understand what a normal range is. It is based on readings taken from thousands of (apparently) normal healthy patients. You create your beloved bell-shaped curve and take the figures that apply to 95% of the population. The other 5% are part of the abnormal range - even if it is normal for them. And if YOUR normal is at the bottom end of the range and then you get a result that is within the top end of the range - it is significantly elevated for YOU but to many doctors it is "normal". The normal range doesn't apply to one single person.

The main reason for the belief that ESR increases with age was because in the original population there were older people who had undiagnosed inflammation due to various things and, although classed as healthy, they had raised markers. Any person with an ESR above 20, not the 40 that was accepted for so long as normal, probably has a raised level. That is now more likely to be recognised.

My husband has said for years that ESR testing shouldn't be allowed!!!!! It is pretty useless in diagnosis. It might be some use for monitoring a patient for whom it works. Or it should have been checked annually since birth - and trends could be established. And that is perhaps all it should be used for - identifying trends.

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Hi,

Unfortunately ESR reading are not as reliable at confirming a flare as some believe, they can be affected by many things other than your PMR. Mine suddenly started to rise during my GCA, with no symptoms whatsoever. In hindsight I now know it was due to stress - my hubby was in and out of hospital and very poorly at the time.

Once you are on Pred the readings should be around the ‘normal” range (whatever that is), but you should be more concerned if they are rising week on week. That’s why it’s quite good to have them done on a regular basis so you know what is usual for you.

Although the reading may not have risen this time, I would have another test in a couple of weeks if you still feel the same, they may have gone up by then, they do have a tendency to lag behind symptoms.

Plus as SJ says your body may be struggling because of your adrenal glands. Stick with 5mg if you can, or until you have another blood test. You can always take OTC painkillers and see if they help, if they do it may prove it’s not a flare. If they don’t help then unfortunately you may need to increase your dose of Pred.

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Thank you for the link, interesting and made me think back to when my AI may have started. Age 6 or 7 juvenile migraines, age 9 Juvenile arthritis right big toe. Over the next few years allergies to foods, fabrics and the sun. Age 50ish pains in both hands diagnosed mixed connective tissue disorder. Age 59 hypothyroidism, no family history, but no longer have the sun problems??? Now have PMR and GCA b****y Vikings.

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I think it indicates that your dose is just enough - or almost enough - to keep the inflammation almost under control. Some people may have elevated ESR/CRP at diagnosis but then not see it in the early stages of flares later. I suspect it is because at diagnosis the inflammation is all stacked up and there is a lot of the proteins made in response to inflammation around - enough to raise the markers. While patients are on enough pred they SHOULD be normal and it doesn't mean the PMR is in remission as some doctors will try to tell you, only drug-induced remission if remission is defined as absence of symptoms - but it can take a long time when you have slightly overshot the mark for them to build up to give a measurable reading - especially if you are a "normal CRP" person.

I think that uptodate article is one of the best on the internet - I've quoted it quite a bit and it doesn't have this insistence that ESR/CRP must be raised which is a scunner. There are quite a few papers in the literature warning against assuming normal range ESR/CRP mean no GCA - and they back it up with biopsy proven cases with normal bloods. Some people just don't mount the acute inflammatory response. My CRP has been raised once - on a day when I was having a atrial fibrillation episode that wasn't recognised and by the following week when it was checked it was back to normal. My ESR is usually 4 and has on occasional hit the dizzy heights of 7 - even when I couldn't moce for pain and stiffness, symptoms that went in under 6 hours with 15mg pred! So "nearly normal" doesn't cut any ice with me!

And as SJ has suggested - there is the adrenal factor to bear in mind.

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My levels are both 'normal'.My GP is very good at sending me for blood tests.

So this week she says I haven't got PMR anymore!! So I say''why do I feel so ill,fatigued,aching arms and legs again,general zombie feeling'? .....She's sending me to a Rheumie.

I've been taking 2mg of Pred since 1st Aug and was diagnosed Jan 16.

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You need a bit more - the symptoms are ALWAYS king. Plus your adrenal gland function may be lagging behind.

Where do they get this idea?

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My levels have never been raised but my Lovely GP sleep ways says treat the patient not the blood results x

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Clone them!!!!

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I seem to have an opposite problem. My CRP has been creeping up, although I increased pred and have been feeling quite well lately. Doctor says go by symptoms. It's not seriously high but went up from 15, where a locum was concerned (said it should be under 9), to 19 after an increase in pred, to 23 after increasing pred one more time, and being there for several weeks. Initially, before pred, I think my CRP was in somewhere in 30s.

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If you have no PMR symptoms it does suggest there may be something else going on.

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Thank you, my thoughts exactly, but suggesting this to Dr I'm Not Worried About That elicited no response. Physio appointment next week and magic physiotherapist should be able to help. I'm going to go by PMR symptoms as that's what the pred is for and continue cautious taper.

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Sounds like her middle name is "I'mNotCurious either"

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Well, in her defence, she did take me on as a patient even when all the doctors in the practice had no space for anyone, and generally speaking she's been pretty good with my PMR management. There's a sign now at the receptionist where one of the other doctors has declared she will only deal with one issue at an appointment. If you have any other questions you have to make another appointment. This is a result of the payment system, fee for service, not a salary, coupled with rather bad treatment of the doctors, especially family doctors, by the government the last few years.

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So you go and ask for a triple appointment, at the end of the day!!!!

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I've asked for a double appointment in the past and they don't do it!

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Then how can they deal with the complex patient whose medical conditions are BOUND to result in more than one question?

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Good question. This is the new normal here, I guess. But my doctor hasn't posted such a sign. It's really me who feels guilty that I got onto her list when she was adamantly, like all the other doctors in the practice, not taking "new" patients, and I don't want to take up too much time. I know there are people much worse off than I am. For example, I looked up"ganglion" and now I think she's right and there we go. But she could have said a sentence or two to tell me what it was.

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Probably assumed that you were likley to go and look it up. When mine developed on the front of my foot I had done that before asking the GP - who agreed it was a good idea to do an u/s scan to be sure that was what it was. Took about 5 minutes a few weeks later, including the report being written, and we knew it could be ignored safely. Cost me 18 euros i think.

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There's absolutely no point trying to get anything like that kind of investigation here unless you are obviously in need. I have to say emergency care is excellent. But if you have these little annoyances you're likely to have to wait for investigation so long either the condition has resolved or you're in much worse shape. Sometimes all we need is reassurance, and my former GP could give me that without sounding dismissive. But he knew us well, and we'd first started going to the practice when we were working in a university and they provided the student health services so that is the context in which we were known. To my current GP I'm just some random old woman. Although she does treat me kindly in a disinterested sort of way, she can't know me as well as someone I'd seen for over thirty years. How people are managing with the drop in clinics I dread to think. I do have to count my blessings, it could be much worse!

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But the point is that it COULD be a tumour and only an u/s can tell the difference. I have to say - preventative medicine is is good. An ovarian cyst was found at my pap smear appointment a couple of years ago - it is monitored "just in case". Cost a few euros - but the peace of mind makes it worth it. Wonder if it is free like everything else now I am 65?

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Well, there you go. But I don't suppose a tumour would blow up so quickly would it? If it did I think I might as well just get quality of life and go out quickly! ;)

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Without any precise documentation I have read about PMR pain without elevated SED rates.... this being said ....active PMR indicates inflammation and inflammation without an elevated esr is difficult to accept.... I have found that when my my PMR symptoms recur it usually involves the same muscle groups which were involved in my initial presentation.... unfortunately I have not had a sed rate with each recurrence .....but I can say that each recurrence is usually associated with a decrease in my prednisone... my muscle tenderness recurs at 2 mg of prednisone with symptoms probably abating when I bring the dose back up to 3.5 to 4 mg. The important point here is that it is always recurring in the same original muscle groups which in my case is the gluteal and hamstring muscles... I could tolerate the discomfort at 2 mg of prednisone... but I also may have subjective symptoms of adrenal deficiency as I drop the prednisone levels down to 2 mg.... not certain about this, and I may need the input from an endocrinologist in order to determine whether I am adrenal deficient. One other point to be made is using an objective parameter such as morning oral temperatures.... as my prednisone dose goes down it seems that my morning oral temperatures also fall below 98.0 degrees and never seem to reach 98.6 degrees during the evening as it normally should in my case... I can't be certain that this objective measurement applies to everyone... the bottom line is to determine what your Baseline temperature is when you are on higher doses of Prednisone and what happens to your temp. as you reduce your Prednisone dose.... bottom line, I do not believe that you can have recurring PMR pain without some evidence of inflamation such as an elevated sed rate, despite poorly documented reports claiming otherwise.

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Up to 20% of PMR/GCA patients do not have elevated blood markers - some people simply do not "mount the acute phase response" to put it in medic-speak. No-one knows why, it is just so.

And since the reports come from a few of the top experts in the field - I'm happy they have an answer for my symptoms with no elevated ESR/CRP that responded to 15mg pred in less than 6 hours. I DO, however, have a raised ferritin - also an indicator of inflammation.

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