Is it a flare if my SED rate and CRP are normal?

I am and have been having a considerable amount of pain in my shoulders and lower back. Sometimes sharp pains I have had two flares in the past. I am on 10 mg pred. First was diagnosed March of 2015. Last flare was also at 10 mg.  have been under a lot of stress lately and this started about a week ago.  My SED rate and CRP are normal.

Audrey

I think SED rate can often be normal.  CRP is a good indicator but have read many many articles sayiig that not all patients have SED and CRP as indicator.  You and how you feel are the best indicator.

Audrey, if you are someone who had raised markers of inflammation at diagnosis, repeating the blood tests can often provide the answer.  Certainly they proved a useful guide for me as I was someone whose blood markers would alway increase in line with flaring inflammation.  BUT, the blood tests can sometimes lag behind the symptoms.  PMR loves stress and, as you mention having been under a lot of stress lately, it is quite possible that it has precipitated a flare.  Perhaps increasing to 12.5 for a week or so will provide an answer.  I do hope things soon improve all round for you.

Thanks Mrs O,

My SED rate and CRP were quite high when I was first diagnosed.  

I had it tested again last week and it was normal.  Since then is when the pain started.  After the first two flares the doctor did not order blood tests.

this time I went to the GP and she ordered it.  I'm giving up my rheumy and my GP agreed to treat me.  Neither of them know much about PMR but my GP is easier to deal with.

It depends how you define "flare!"  As Eileen has often mentioned, for some people the blood tests do not track changes in symptoms.

I define it based on my symptoms.  Anytime the pain comes back or increases, I consider that a flare. If the pain is "considerable," I'd definitely call it a flare.

As MrsO says, when I have a mild flare, I adjust my dose slightly upward for a few days, then go back to the lower dose and see what happens.  My doctor agrees with varying the dose in response to symptoms.  Unlike many docs, he trusts my common sense!

Audrey, unfortunately it seems too common to find GPs who don't "know much about PMR".  I remained undiagnosed for a year by three GPs and even a rheumatologist - it was eventually a pharmacist who put two and two together and suggested PMR/GCA!  However, after diagnosis I found a wonderful rheumy and remained under his care throughout my PMR/GCA 'journey'.  It does make a world of difference to this 'journey' if we have confidence in those treating us.

​If you have decided to increase your dose back up to, say, 12.5mg, I hope it resolves your increasing pain.  When you reduce back down again, don't go back to where you were but stop at a dose just above for much longer, making it your 'maintenance' dose for a while to try and get on top of the inflammation that makes itself known at the 10mg point.  Like the 5mg dose, 10mg can often prove a sticking point so a longer period spent there followed by very slow tapering via 0.5mg decrements may prove more successful.

A flare can precede the inflammatory markers increasing - and symptoms are always king. The blood markers sometimes don't rise again when you are still on pred but everybody is different, there is no hard and fast rule. But if you had them checked BEFORE the "flare" - who knows what they are now anyway. They are the result of a flare, not the cause.

However - you say the pain is mainly shoulders and low back - which suggests to me it may not the the PMR per se but possibly something that is commonly found alongside PMR called myofascial pain syndrome. It leads to the formation of so-called trigger points which are concentrations of the same cytokines that cause the inflammation and pain in PMR - which are located in pairs on either side of the spine, in the shoulders, about rib level and in the low back where the dimples are on a baby's bottom. These can irritate/pinch nerves nearby and lead to referred pain - into the arms and neck, around into the ribs and into the buttocks and thighs depending on which area is affected.

I used Bowen therapy to deal with it in the 5 years before I started taking pred - it is relatively easy to access, depending on where you live, and doesn't require begging a GP to refer you. My osteopath was also quite helpful - though I regard Bowen as osteopathy for soft tissue (muscles and tendons) and it was better. A good physiotherapist (especially in private practice) should also be able to identify the knots in the muscle and use their finger to do manual mobilisation. I have had cortisone shots into the affected muscles and trigger spots - but tht requires a doctor, I have one here in northern Italy and gPs do it in mainland Europe - different matter altogether in the UK. Though you say sed rate - do I gather you are in the US? Sorry can't remember if you have said before.

Google myofascial trigger points for illustrations and a lot of info on various sites. Going to the site Bowen4life will tell you about Bowen and what it can do. And believe me, He doesn't exaggerate - for some things it can provide a dramatic improvement.

Thank you Eileen and everyone who responded.

i increased to 13 mg this morning and will see if it makes a difference.

i was great at 11 but as soon as I went to 10 the pain started creeping in.  It too several weeks to get to this point.

i will also set up an appointment with our Bowen therapist here in the US.  She is quite good and trained and comes from the UK.  I went to her once and should have returned but right after the treatment I developed a neck pain that vas very uncomfortable for a long time and attributed it to the treatment.  

Pits very possible that my pain could be caused by TP.  For several days I can have a horrible pain in my groin and suddenly it is gone and appears in two other areas.  I'm Not mentioning it anymore to those around me because I know it sounds crazy. For several days every time I moved my leg in a certain direction I would scream out in pain and all of a sudden I woke op one day and it was gone. Right before that it was my left hand but that only lasted a day.  Today it is my shoulders and my left knee with some pain in my butt.  Hopefully tomorrow will be better.

Again, thank you.

Audrey

Sorry for the spelling errors.  If I backspace to correct my iPad freezes

Audrey

Audrey, my iPad does that too sometimes, it even repeats partial words as beginning of sentence. Kind of frustrating,

I've been confused by flares too. Doctor said let them know if I flare. Huh?

My pains are pretty consistent in pain, just not that 100% like in beginning. 

But here year later my big toe started hurting. And my fingers, I happened to have doctors appointment and the PA said that was a flare, but my SED and CRP levels are in normal range, though higher than last visit.

but they didn't say to increase Pred. 

But fortunely like you my toe and finger pains subsided. I was also breaking my rules and eating flour/gluten so I'm betting that was it, 

Bowen did help my back pains,  but not all my other areas.  But I love my Bowen gal so much for helping me relax, so I continue to go to her. 

She also taught me better than my physical therapist the proper posture! 

 

Sounds like 10.5 might be your dose for now - and really, half a mg will make that much difference. 10-ish often poses a problem for some reason.

After a Bowen treatment you could get a change in problems as the muscles get used to where they are now - and other muscles still aren't right - does that make sense? I know what I mean winkrolleyes

TP?

Yes, I understand what you mean.

TP=Trigger Points

Audrey

Audrey, My SED & CRP pretty okay too but recently feeling all the PMR symptoms coming back. Started at 15mg. Prednisone this past July & my Dr. increased to 17.5mg 3.5-months ago. Maybe time for another increase, calling my specialist P A. today. Was feeling so good, so quickly, for a while, but wow when PMR symotoms return, you know how bad PMR really can be. Any input appreciated. Thanks Reggie

Is it certain it is PMR? That is the wrong way round - you start at 15-20mg and then you should be able to reduce slowly to a longer term lower dose. This sounds more like another inflammatory arthritis - and they can present very similarly. One version can also happen for a short time then quieten down before reappearing and would also respond quite well to pred initially.

When first diagnosed I had all the symptoms of PMR.  Elevated CRP and SED rate.  Severe pain in shoulders lower back and thighs.  I could barely walk especially first thing in the morning, could not bend over, extreme fatigue and weight loss.  As soon as I started on Predisome I could have climbed a mountain.  I have always had arthritis in my right hand but now that day of it in my left hand is something new.

now you have me wondering and Indont know where to go with it.

Yes I was diagnosed with PMR by one of the top, best of the best, rheumatologist in the country. I read allot about others going to higher doses than 15,17.5, 20mg's, before tapering down. It seems as though, as with many diseases, the treatment varies among the specialists treating the illness. I do have a lymphoma, very rare, Waldenstrom's Macroglobulianemia. I'm on an oral chemo. med. which keeps all my numbers where they need to be. It has been highly successful. There are many similar symptoms to PMR, but my oncologist was certain something else was going on, thus referring me to the rheumatologist finding the PMR. I'll have an answer today as to an increase or not will be ordered. Thanks

My question wasn't to you Audrey - it was to reggie. You definitely sound a PMR candidate!!

This "new, improved" layout is a menace!!!!! People don't get who a post was a reply to - it's rubbish!

Eileen,

i thought you were responding to me and now I see it was Reggie.

i initially started at 20 and a month or so later at 13 I had a very bad flare. Went back to 20 and a couple months later at 10 I had another bad flare.

they put me on 25 and this past week or so ago I started to flare again.  I tried to live with it but each day it had gotten worse.  It had taken me 6 months to get from 25 to 10. I just raised it to 13?today and if that works after a couple of weeks go down to 11 which is where I last felt comfortable.

i do not have a doctor who understands the condition which is upsetting.

Hi Reggie,

where do u live, is in the US?  If it's anywhere near Florida I'd like to go to that Doctor.