Help with diagnosis

[Cjbe]

Good morning, sorry for the long post.

Has anyone else been in the same situation / can advise of their story.

I had bloods taken in April my Esr was 41, Crp 12 (slightly raised). These were repeated 2 weeks later they were more or less the same.

Mid June I had bloods taken again Esr was 12, Crp 2.2 (normal). I have been suffering with symptoms of PMR since Feb, saw a rheumatologist earlier this week they advised to have X-rays and scans. They also suggested its unlikely PMR due to bloods initially showing slight inflammation and these now being normal. She said if bloods had always been normal then It could be PMR but because they were raised and now normal PMR is not the case? Has anyone else been in this situation.

I’m 50 years old and was advised I must have had an infection or something that triggered inflammation which is now resolved in blood work, and the pain/stiffness should settle- but to have x rays/ scans and be reviewed again when these results are back.

Thanks for reading.

[DorsetLady PMRGCAuk volunteer]

hi,

Rheumy is not totally correct- various studies have shown that between 7 to 20% of patients do not have raised markers with PMR.

However as mentioned both CRP and ESR can be raised by many things …anything from a stubbed toe, to a virus, operation, accident, even mental stress?

[Cjbe in reply to DorsetLady]

Hi yes she did say that you can have PMR with no inflammatory markers, but said because mine were slightly raised and now normal that is unlikely to be PMR but that it reactive to something. So wondering has anyone else been advised of this?

[DorsetLady PMRGCAuk volunteer in reply to Cjbe]

Not sure I can recall exactly the same - but hang in there hopefully will be more replies.

Unfortunately it’s can sometimes be a long process to diagnose PMR - other things have to be ruled out ..so it can be frustrating. See this for other diseases that may mimic PMR - but obviously if you do get the typical symptoms then that strengthens the diagnosis. You do know why to look for don’t you?

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[123-go]

Hello, Cjbe. We know only too well the concern and frustration when waiting for diagnoses: you have my sympathy. It would be of great help if you would fill in your bio giving details of symptoms and how this is affecting your everyday life. Also helpful is to know where you are in the world- country/general area.

You may well have had an infection which would have shown inflammation in blood tests but if you are still experiencing pain and stiffness there is something going on.

[Lenore58]

What are your symptoms and when did they start?

My inflammatory markers were always in “normal range.” But I definitely had PMR, and now GCA (one did go up when the GCA struck.)

[Cjbe in reply to Lenore58]

I’m aware that inflammatory markers can be always be in normal range and still have PMR. I’m trying to establish if anyone has been told the same / in the same situation as me.

Bloods slightly raised and now normal - hence being told is unlikely PMR but reactive to something and symptoms should calm down.

Symptoms started Feb, bilateral shoulder, neck, top of arm pain. Hips pain, some stiffness in a morning, hard to get in car/ up from chair. Waiting to have a USS scan.

[Gimme in reply to Cjbe]

My inflammatory markers have never been raised right from the beginning. I was diagnosed by the GP; I have all the classic PMR symptoms and had the usual miraculous response to pred. I had never heard of PMR, but as soon as I read about it, everything started to fall into place, and finding this forum with a whole community of people just the same as I am, left me in no doubt that I have it. I saw the rheumatologist after 6 months on pred and he declared that my PMR had gone and that I need to stop taking prednisolone. I tried to taper very slowly , but ended up in a flare I think, and I am now back on a slightly higher dose than I was before I tried to taper. Certainly, my PMR is every bit as active as it has ever been. But still normal range inflammatory markers. My current GP seems to be pretty adept at helping me manage the PMR and seems to really understand what we go through, so I have every confidence in him. Especially, when I have received such contradictory advice from other doctors that I have seen, and quite a lot of it being actually incorrect, but that doesn't seem to be an uncommon experience with PMR. Thank goodness for this forum is all I can say.

[Flivoless in reply to Cjbe]

This certainly sounds like PMR. Are you taking prednisolone? If so, is it relieving the pain? If not, why not?

[Cjbe in reply to Flivoless]

Not on pred, I mentioned It being PMR to her and she was like I doubt it because of bloods now being normal and said pain was from inflammation being reactive to something and said have x rays and scans to see what they show, and that pain would go in time. To continue with ibuprofen. It was a private consultant I saw, I have a NHS first appointment end of the month so will see what they say. Doubt I’ll have the scan done before then. I just know I can’t carry on like I am.

[PMRpro Ambassador in reply to Cjbe]

Does the ibuprofen help at all?

[Cjbe in reply to PMRpro]

It taken the edge off. She also told me to take amitriptyaline on a night to help with sleep as I was in discomfort when turning over in bed. That has helped me sleep but still can feel the aches.

[Flivoless in reply to Cjbe]

Personally, I would insist on at least trying Prednisolone. If it relieves the pain you have your answer. If it doesn't, keep checking other possibilities.

[Pol53 in reply to Cjbe]

hi Cjbe , I was in a similar situation whilst waiting for a refferal to rhuematology (which took 16months)altho at this point I wasn’t given my results in number terms so I didn’t know at the time what they were - one physician I was seeing at my gps thought I had Pmr right from the start -but Gp wouldn’t diagnose me -they sent me down the route of X-rays Bloods I had only diagnosed Osteoarthritis - X-rays confirmed this I also had an mri on neck which showed some damage but nothing severe to operate On yet still I was in so much pain that I couldn’t dress properly or do daily tasks when I finally got into rhuematology he didn’t even wait for blood tests he diagnosed me by the amount of pain I was in the prior tests and my symptoms within half hour of being in there put me on Prednisolone 30mg and well the difference was unbelievable- so my advice is to push for the referral and in the meantime go for all the X-rays mris whatever u can get to prove or disprove , as commented above you could ask for the gp for the prednisolone - and see what they(

I recently saw another gp at my surgery and she gasped and said who’s diagnosed u with Pmr saying I was too young at 53 so I think sometimes they think that it affects 65 and over more

good luck

[PMRpro Ambassador]

She is assuming that the raised markers were due to PMR - they could have been raised for some other reason which may or may not be related. I think you have to let her exhaust the alternative diagnoses - and I suspect she is looking for a reactive arthritis. But if it is muscles - don't see how she reconciles that.

[AtopicGuy]

It's not possible to "help with diagnosis", because you haven't given enough detail about your general health, what all your symptoms are, and how they developed over time.

PMR is one of many autoimmune diseases, which means the inflammation has no detectable cause, except that the body must have turned against itself. That's why it's crucial to rule out other diseases (including neurological ones) before trialling steroids.

[Cjbe in reply to AtopicGuy]

As I said in an earlier post - Symptoms started Feb, bilateral shoulder, neck, top of arm pain. Hip pain, some stiffness in a morning, hard to get in car/ up from chair.

Was fit and well prior to this symptoms - woke up feeling like I’d been hit by a bus. Symptoms gradually got worse over a few weeks .

[AtopicGuy in reply to Cjbe]

Sometimes it's the little things people don't bother mentioning that clinch matters.

[HeronNS]

It sounds like you should be a candidate for a pred trial. If you succeed in getting that and you do have a much better response than it appears you've been getting from the alternative painkillers so far, then do your best to be able to continue with the pred and not have to come off for a time. It can be much harder to control the symptoms if they make you induce a flare by stopping the pred.

I, too, found aspirin "took the edge off" and was sometimes actually almost pleased when I had a headache so I could take some aspirin which I knew would also "take the edge off" the fairly disabling, constant, pain prior to diagnosis and pred. When I finally was diagnosed and given a week's worth of pred at 15 mg per day, within a few hours I could feel an improvement and within two or three days complete relief of all pain.

Because this rapid relief of pain from a relatively low dose of pred is unique to PMR it's a very useful diagnostic tool to confirm diagnosis if all other investigations have turned up nothing else to explain the symptoms.

[sidra1968]

If I were you I would basically beg for a 2 to 3 week pred trial, I had to.. saying that you simply cannot go on like this. I mean, of course let them rule everything else out also, but I think when one is in their 50s like you and I, they tend to dismiss the PMR possibility more often. Please keep us all informed and updated. You are definitely not alone.