What exclusionary tests should I ask my doctor for? IL-6 inflammation tests? + other random PMR questions

[MizDiana]

I'm a 44-year old woman fairly confident I have PMR due to the symptoms I've experienced & the dramatic success of prednisone in treating them. (I put a longer backstory in my profile - which I'm assuming you can access.) I worry somewhat about GCA involvement because when my symptoms have been strong I sometimes get headaches vertically along my head in the temple area & jaw pain. That and pulsatile tinnitus. But I'm not sure how reasonable that worry is.

Unfortunately, my blood tests have always come back looking great! (And not explaining anything.) The one rheumatologist I've seen dismissed my symptoms on account of age and very low CRP/ESR. She suggested my debilitating symptoms were just me entering my 40s, which was insulting and ridiculous.

I have access to prednisone. That's been very successful in treating symptoms. Practically miraculous. I'm trying to taper - this forum has been helpful, and am down to 7.5mg a day (started at 20 before this taper), 5mg in the morning, 2.5 at night. Though I think I'm getting the light return of some symptoms and am considering going back up to 8.75 or 10mg a day.

That puts me in an okay position, as the treatment is working and I feel mostly healthy. But I continue to have doubts that I've excluded all the other potential explanations for my condition (though I do think it's reasonable that PMR is the most likely diagnosis). I have some symptoms unusual for PMR (like I had dramatic salt cravings most of last year, that suddenly reversed recently, making me worry about kidneys - though a torso CT scan showed nothing but a large benign cyst in one kidney). And I'd like some sort of test to come up that I can wave at doctors and use to get them to pay more attention.

My primary care doctor has tested for a variety of things that can cause fatigue and general malaise, without success. Dr. Google has suggested nothing that has a symptom list that fits the way PMR does. But myeloma does come kind of close, and apparently prednisone is used to help treat myeloma (though maybe wouldn't have had the dramatic success it's had for me?).

I'm hoping the experts on this forum can tell me what kind of testing I should ask my doctor for to rule out myeloma/similar issues.

I also read one article that suggested that in PMR cases where CRP/ESR is low to undetectable, other kinds of inflammatory markers may still show elevated levels. (???Related to IL-6-type inflammation??? - a bit out of my depth here). Are there other useful tests that can show inflammation of this or other PMR-relevant types? An SAA (serum amyloid A) test perhaps? (Again, fuzzy knowledge from Dr. Google - hoping for clarification).

So in addition to any tests I should ask about to rule out myeloma or other similar-to-PMR possibilities, are there tests other than CRP/ESR that can show inflammation and help a new spur rheumatologist to pay more attention? (I have an appointment with a new rheumatologist in a month).

Last random questions: I recently decided to not get a colonoscopy/upper endoscopy to rule out GI issues because of the high cost (I live in the U.S.). Instead, I'm going to get one of the poop-smear tests that can hopefully rule out colon cancer (not a specific/symptomatic concern, but I'm nid-40s and a grandfather died of colon cancer). Is there any reason a colonoscopy/upper endoscopy would be particularly useful re: PMR? (I'm assuming no.)

And is there any useful test other than a biopsy to rule to confirm a GCA danger (which I'm assuming is not the case, and that the answer to the question is no)? Edit: and is a a GCA biopsy something a rheumatologist should do, or could any primary care physician do that?

This turned into a wall of text! Thank you for reading.

[DorsetLady PMRGCAuk volunteer]

I worry somewhat about GCA involvement because when my symptoms have been strong I sometimes get headaches vertically along my head in the temple area & jaw pain. That and pulsatile tinnitus. But I'm not sure how reasonable that worry is.

That all does sound suspiciously like GCA- so as you already have PMR that should be first thing to be considered.

You do need a Rheumy input to get either a biopsy or imagery tests - ultrasound/ MRI -

ncbi.nlm.nih.gov/pmc/articl...

Re jaw pain - try this claudication chewing gum test -

sydney.edu.au/news-opinion/...

Any chance you can contact rheumatologist for an earlier appointment?

[MizDiana in reply to DorsetLady]

No. In fact, seeing one this "early" is because of a cancellation from someone else. Healthcare in the USA can be very slow, particularly for specialists. I do have spare prednisone stockpiled - I will self-increase the dose a lot if I get any vision issues.

From your response, I will certainly ask about a biopsy. I assume there's no real downside to getting one done?

[DorsetLady PMRGCAuk volunteer in reply to MizDiana]

Only problem is you may get a false negative result. If the tiny sample taken doesn't show any GCA affected cells then it’s considered negative -but that doesn’t mean GCA isn’t in some other part of that artery or in any other artery.

Whereas if you get a positive result -there’s no question,

But it’s usually the first option.. see what your Rheumy says.. and please let us know.

[MizDiana in reply to DorsetLady]

Thank you. I won't forget the false negative possibility. And I will update on how things go. I feel both lucky and cursed that I'm dealing with all this while relatively young and otherwise pretty healthy.

[PMRpro Ambassador]

The main downside to having a biopsy without a strong suspicion of GCA is that it is something that can only be done once - and may be negative, not because you didn't have GCA but because the lesions didn't happen to be in that bit of artery, either because they can skip sections of artery or the temporal artery which is used isn't actually affected. Ultrasound can be done many times and can also be done on the subclavian and brachial arteries which may be involved in large vessel or non-cranial vasculitis. It can also miss GCA if used on the temporal artery - for much the same reasons as the biopsy may miss it.

A biopsy would be done by a surgeon, preferably a vascular surgeon, but I don;t know if an internist could request one in the USA - your specialists do seem to be very precious about who deals with what so I imagine you would need a rheumatologist or ophthalmologist.

The first test to be done if symptoms suggest myeloma is a full blood count - the levels of various white cells change in the presence of myeloma. Myeloma usually causes bone pain - PMR causes muscle pain and pain in the soft-tissue attachments around joints.

Colon/endoscopy doesn't have a role to play in PMR.

I imagine your doctor has probably done the blood tests which would signal other potential causes of the symptoms and like me, they came back "normal". "Normal range" inflammatory markers are seen in up to 20% of patients according to the literature and it is more common to find low levels in younger patients. You really are reliant on meeting a broadminded rheumy I fear - and they are particularly rare in the wondrous US healthcare system.

[MizDiana in reply to PMRpro]

Our healthcare system here is wonderous indeed....

Thank you so much for the good information! I didn't know about the ultrasound tests for GCA, so that's pretty useful. As is the myeloma information. I don't think I have myeloma, it just seems like the only real alternative candidate I can think of to rule out so it would be nice to do so.

[PMRpro Ambassador in reply to MizDiana]

There are various other things and a few of the inflammatory arthritides can present initially identically to "just" PMR. There are doctors who will allege PMR can morph into seronegative arthritis - couldn't possibly admit it was a misdiagnosis could they, even if it isn't their fault!

[SheffieldJane]

I used to get Pulsatile Tinnitus when I was on high dose Prednisalone. It went as my dose lowered.

I got gut issues I believe, as a side effect of long term Pred and had a colonoscopy, an endoscopy, and a camera endoscopy Diverticulitis and a small hiatus hernia were diagnosed. I am aware of this every day. Pred is an effective drug prescribed correctly, but it is also a pretty serious drug. I was diagnosed due to my symptoms and high CRP levels for PMR and a Vascular ultrasound scan for non Cranial GCA. I went on to have a number of MRI scans as the years went on. I have my eyes checked every few months. At your age I would want to be very sure that my symptoms were PMR and or GCA ie every test I was offered. Pred needs the supervision of a wise doctor. Wishing you all the very best ( I am old enough to be your mum). Quite rightly everything else needs to be ruled out as well. Treat any eyesight issues as a real emergency. As you probably know untreated GCA can cause you to lose your sight. You have had very good comprehensive advice so I won’t repeat.

[MizDiana in reply to SheffieldJane]

That's good to know. It's nice to have an explanation for the Pulsatile Tinnitus.

[PMRCanada]

Of you’ve been on pred for awhile your CRP and ESR will likely not be elevated because it’s doing it’s job. I was tested for both BEFORE I started pred and both were high.

I’m not sure but I believe pred may also impact biopsy results. Others on here can confirm.

Unfortunately there is no one test to confirm PMR….but it sure would be nice if there was! I would say “symptoms rule” and are key to diagnosis. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to PMRCanada]

I’m not sure but I believe pred may also impact biopsy results. Others on here can confirm.

Yes it can, if it’s reduced the inflammation sufficiently- but as I’ve said elsewhere in the thread a biopsy does not always give an accurate result.

[MizDiana in reply to PMRCanada]

Thanks for double-checking on that! The first time I had CRP & ESR tested I had not been on prednisone yet - they were still very low.

[DorsetLady PMRGCAuk volunteer in reply to MizDiana]

Some people never have raised markers -studies quote up to 20% fall into that scenario.

[HeronNS in reply to DorsetLady]

Also, from my own experience, some doctors may dismiss what are actually raised markers as being "normal for one's age", although any elevated marker indicates there is inflammation somewhere, more likely as one ages, and should not be shrugged off.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Absolutely….

[PMRpro Ambassador in reply to HeronNS]

And there is the point they may be raised for YOU but lie within this magic "normal range", That happened to me, my ESR bumbled along at 16-18, well in normal range, but MY personal normal is in low single figures. By definition, "Normal range" is the range of results that is found in 95% of a large population of nominally healthy persons. 5% of patients will have results outside that range and still be perfectly healthy. It isn't a fixed entity.

[HeronNS in reply to PMRpro]

I actually can't remember what my ESR was, and part way through they switched to CRP, but I do remember looking it up at the time and it was definitely on the high side, although not extremely so. We don't yet have the ability to view our own test results so always had to remember to write down what I was told, if I was told!

[PMRpro Ambassador in reply to HeronNS]

My CRP was NEVER raised - except one day when I was having horrible atrial fibrillation. By the next week it was back to normal, Never budged with PMR.

[Lenore58]

Red blood cell distribution width and high neutrophils/low lymphocytes have been associated with inflammatory auto-immune illnesses, though not specific to PMR/GCA

dovepress.com/red-blood-cel...

patientpower.info/what-do-h...

ncbi.nlm.nih.gov/pmc/articl...

[MizDiana in reply to Lenore58]

Thank you for the links!

[AtopicGuy]

I've been surprised how many neurological diseases are autoimmune, and respond to steroids, without raising inflammatory markers: myasthenia gravis (MG), chronic inflammatory demyelinating neuropathy (CIDP) and multiple sclerosis (MS), to name but three. These are easily diagnosed once the symptoms become severe enough, but (as with PMR) there's a twilight zone where neurologists and rheumatologists will dump you in the fibromyalgia or CFS/ME bin.

You could read up on MG and, only if the symptoms ring a bell, ask for blood tests for anti-AChR and anti-MuSK antibodies. Healthy people should have none detectable (usually less than 0.05, or 0.02 nmol/L, depending on the lab test).

[MizDiana in reply to AtopicGuy]

Thank you. My mother had that problem with MS.

[cranberryt]

I have yet to find a rheumy in the US who will diagnose PMR in someone under 50, and sometimes refuse to even under the age of 60. They are also going to balk at you already being on prednisone because they cannot diagnose something they cannot see for themselves. They are then going to push you off prednisone asap especially since they are not prescribing it for you and insist you have sero negative RA.

While this is my experience, I have also seen many people report similar experiences in the US. Doctors here are taught it’s impossible to have PMR under 50 and will therefore go to great lengths to attribute your symptoms to almost anything else, though RA is the most common because it’s nebulous. One doctor also told me that an RA diagnosis allows him flexibility in trying other treatments whereas PMR has only one. They don’t care what doctors outside the US have to say about PMR Only US doctors can be trusted and they have to answer to the US medical boards so they cannot possibly think outside the box. (This was actually said to me though not quite in that tone lol)

As far as tests… because you are already taking prednisone some tests (like blood tests or ultrasound or biopsy) may not be accurate and they will argue that prednisone will ease many diseases, not just PMR. My PCP tested me for a ton of stuff, all of which were negative, prior to diagnosing PMR. Lyme, menopause, Rheumatoid arthritis, thyroid, xrays, sjogrens, ESR/CRP, cancer, typical bloodwork which tests all those other things like sugar, iron, cholesterol etc.

For me, absolutely everything came back normal except ESR/CRP and so I got a PMR diagnosis and a prednisone trial that began relieving my symptoms in 4 hours.

Despite this, 3 rheumatologists at different practices refuse to diagnose or treat me for PMR because I was 48 at time of symptoms and they could not visibly watch me in pain so bad that I couldn’t walk, raise my arms, dress myself, turn my neck, etc.

As far as GI tests, I didn’t have any GI issues at the time of my PMR onset, however I have since developed celiac and colitis which I chalk up to the “once you have one autoimmune it’s common to attract more of them” principle. I had a colonoscopy to diagnose those about two years into my PMR journey.

Be prepared for a fight and for a dismissive rheumatologist, and if they actually listen and don’t berate you for coming in already on prednisone, and are willing to treat you for PMR without insisting on methotrexate or a litany of other drugs to get you off prednisone, I would personally love to know who you saw! lol

I apologize for my jaded view but I want you to be prepared for the possible challenge ahead of you.

[PMRpro Ambassador in reply to cranberryt]

Jaded maybe - but absolutely in line with my experiences of US members over the years. I did manage to get Peter Merkel to think a bit differently but don't know if it lasted. My first encounter with him was a bit "combative". It was a mixed group at OMERACT, rheumies, physios, occupational therapists, all the usual suspects who might be involved with our treatment. A rheumy - could have been Peter - was holding forth about what patients "felt" about pred and a physio asked the obvious question: why not ask the patients? To which Peter asserted there were none present! I soon disillusioned him of that view! But that is exactly what you find again and again - they don't take any notice of us - what can we contribute?

[MizDiana in reply to cranberryt]

Yes, I'm more than aware of the pitfalls of U.S. medicine - and I suspect it's not just the medical boards they answer to, but insurance company formulas as well. But thankfully I'm not dependent on what the rheumatologist says. My attitude will be to explain where I'm at & see if they can do something useful for me. If they can give me a better explanation for my symptoms, great. I'm all ears. If they can't and are dismissive, well, I'll continue on managing without them.

I'm not going back to full-blown crisis for their peace of mind.

I do want to be tested to rule out cancer (just for peace of mind), so if they have a reasonable way of doing that, that's another potential benefit.

I will say that if I didn't know how to get medication from overseas pharmacies if I really need to, I'd be a lot more stressed about the responses from doctors of the upcoming appointments.

[HeronNS]

There used to be an excellent article on PMR, including a section on "differential diagnosis" but unfortunately it appears to have gone behind a paywall, or at least become inaccessible to laypeople like me ( uptodate.com/contents/clini... ). There is an article on Medscape ( you may have to register but still free) but it seems rather scary to me, the list including things which I'm sure would have been discovered long before PMR diagnosis would be settled on anyway. ( emedicine.medscape.com/arti... ).

[PMRpro Ambassador in reply to HeronNS]

What about this one?

ncbi.nlm.nih.gov/books/NBK5...

[HeronNS in reply to PMRpro]

Differential diagnosis about halfway down. Thanks, although it isn't as layreader friendly as the uptodate article was. Bookmarking for future reference.

[PMRpro Ambassador in reply to HeronNS]

No - really annoying the Uptodate stuff is suddenly behind the paywall. Especially since it is in real English!!

[MizDiana in reply to HeronNS]

Thank you for the articles.

[1951grumpa]

One my sons around your age called me one day asking me about my PMR and it’s symptoms. He had been to his GP a few times and was supposed to get a call from a rheumatologist but didn’t. I told him that he was young for PMR but said he should see my rheumatologist. He did and started him on prednisone and he went back in two weeks and got the results of the blood tests. He had a parvovirus. She said it would last a few months and go away and the prednisone would help with the inflammation. It did…… There’s plenty mimicking going on out there.

[MizDiana]

A few people who were following this threat asked me to update after my rheumatology appointment. The update is here: healthunlocked.com/pmrgcauk...