Frustrated PMR vs RA: I saw the rheumatologist... - PMRGCAuk

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Frustrated PMR vs RA

I saw the rheumatologist yesterday fully expecting her to agree with my PCP’s dx of PMR, increase my pred dose slightly since I still have 1-2 days of mild pain on 20mg and do some testing for GCA since I have had and continue to have headaches and pressure at my temples. Instead she said I was only 48 so it cannot be PMR. And if it was PMR I would be pain free after 3 weeks on 20mg. She wants to dx me with RA and taper me off pred and put me on methotrexate. All my previous bloodwork, including tests for RA, showed normal except high sed rate. She took 6 vials of blood and hopefully is repeating the rh factor and sed rate tests. I guess I will wait to see if the bloodwork changes her mind at all but I am gearing up for a second opinion from another dr. Even though I have a couple days of mild pain a week it is nothing like I was 3 weeks ago before pred... couldn’t get in/out of bed, walk, get dressed, etc. The prednisone helped dramatically within 2 days. To me that is a clear indication that this is PMR, yes at 48 (49 next month) and plenty of people have to start higher than 20mg before the taper especially with GCA. I am stunned and frustrated and disappointed that I didn’t get the help I was positive I was going to get yesterday. Hoping my bloodwork comes back today. Thanks for listening!

38 Replies
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I would definitely get a second opinion. Sounds like PMR to me. I do not have experience with GCA but many do. Good luck. Sorry I am useless with advice but am with you in virtual spirit!!

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Thank you! I appreciate the listening ear and support!

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Wrong, wrong, wrong ...

But there are so many doctors who think PMR obeys birthdays (none of the guidelines say you can't have PMR or GCA under 50, just that it is less common) and who haven't bothered to keep up to date with recommended starting doses (12.5-25mg/day which suggests that 20mg isn;t enough for some people).

Do you know if your PCP did the anti-CCP test?

rheumatoidarthritis.org/ra/...

Though if it is negative she may well insist you are sero-negative. I'm sorry - but for some reason US rheumatologists seem to think PMR is beneath them ...

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I had a CCPA test in February which was normal but before my PMR symtpoms started. (15.6) And the only other anomaly was CPK which was low. <21 with normal being 30-165. I did read that can flag RA over PMR but that is really the only thing that leans that way. And I only found one mention of that.

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It can be low in other things too - and in low physical activity and when on pred. Why were such tests being done before the PMR symptoms appeared?

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I had a pinky finger that was giving me trouble so they were ruling out arthritis. all xrays and blood tests were normal at that time and it went away.

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Yes, unfortunately!

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Oh dear! Pred will have normalised your CRP. You are not too young unfortunately, not even the baby on here. Glad you are seeking another opinion.

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It was CPK (creatine phosphokinase), not CRP (c-reactive protein)

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I wondered, amongst the copious bloods taken, whether normal CRP would count as further proof that PMR was not present.

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Mine was never raised except on a day when I had what in retrospect was a major episode of atrial fibrillation. By the next week it was back to low normal.

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I know but some doctors still lean on these blood test results. ( rapidly out of my depth in Chemistry).

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They are important as part of an overall picture - but some doctors want to have detail that isn't meaningful. Mostly because they don't understand maths: ranges, medians, averages ...

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It's the reliance on that terrible age related cut off point they all use that causes alot of trouble .

No matter what the symptoms or test results they often won't believe what they are looking at because they are taught to look for " horses not zebras" .

If they see a zebra , of any condition , they will do everything in their power to ignore it until they can find a way to make it appear like a horse again, even if it means dressing the patient up in a torturous, ill fitting horse costume for years until they finally reach the " norm" in the guidelines.

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Oh yes - and if they read the literature it says quite clearly that PMR and GCA do occur in younger patients, just it is less common. There is even at least one paper warning against missing the diagnosis in younger patients.

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What a wonderful metaphor!

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It's actually extending one of the slogans of the Ehlers Danlos Society and Hypermobility groups .

It's based upon the actual instructions that Medical Students in the US are meant to be given as part of their introductionary lectures to becoming a doctor.

I thought it was apt to start using it not just for my EDS but in thinking about my different Chronic Conditions , all of them are Zebras treated like horses , including PMR/ GCA.

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Just as an aside, and I'm not an expert, but PMR and LORA (Late Onset Rheumatoid Arthritis) can present with nearly identical symptoms, not necessarily show up in blood tests, and both respond to Pred therapy.

It wasn't until a year had gone by and xrays showed no changes in any joints that my rheumy finally gave up on the LORA theory.

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Thank you I think I have decided that I want to avoid methotrexate if at all possible. Would 48 be late onset?

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You'd be on the upper end of he average onset age - which falls between 30 and 50.

I had the same arguments, and just flat out refused to take MTX or be treated for RA. The thing is, it's a risk.

You have to be really, really sure that you have PMR. Delaying RA treatment can leave permanent damage. Generally, PMR does not cause permanent damage (as long as it doesn't progress to GCA).

I knew that none of my joints were effected. None of my joints anywhere in my body hurt, were swollen or red, or showed any change in the ability to move normally, but my muscles sure did. I had no doubt I had PMR.

The RA factor may not show up in bloodwork for years after other symptoms begin. In some folks, it never shows up at all.

Sometimes, RA can show up in xrays - especially of the hands and feet - where blood tests can't make the differentiation between RA, PMR, OA, etc... Maybe you should ask for xrays.

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Thank you. That may be a wise discussion to have with the dr. While my pain started in my pelvic hip joints, it moved into my muscles and has been in my muscles since. Not the joints. I did have hip xrays that were negative for arthritis in June. But if negative xrays could help differentiate I am certainly willing to have those done.

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RA usually shows up in the hands and feet first, but like every other autoimmune condition, everyone is different.

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You only have to look at the numbers of people on this forum whom have PMR or GCA who had it well before the cut off age of 50 in the official guidelines to know that although it may not be common , it isn't as rare as they are prone to believe.

The RA tests will be useful because there is always the possibility that all of your pain was not coming from PMR and that is partly why you were still suffering from more pain than you would expect after beginning steroids.

If the RA Factors come back firmly negative , it would probably benefit you to have tests to check and see if there may be other connective tissue , Auto Immune , Auto Inflammatory or nerve related issues like Fibro or Neuralgia adding to your pain.

But even if other conditions are at play it does not necessarily mean you don't have PMR too .

That Rheumatologist clearly isn't a PMR/ GCA specialist , or a specialist whom works with alot of sufferers and does appropriate research on their patients conditions. They are just following the , " PMR for Dummies Playbook" , and you may well need to ask for a second opinion on the PMR diagnosis , even if other conditions are found and need treating too, to be absolutely sure you are getting all the medical help you need.

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Thank you. I am curious to see exactly what they tested for. No results call so I guess I wait another day! My neck and shoulder flare up is much improved today so I am still leaning on the side of having aggravated it with our travel but I am trying not to jump to conclusions and at least hear out the tests results and see what she says. If I am still unconvinced I will try another rheumy. At least one who is willing to consider PMR!

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If you don't hear back , it is worth going and asking for a full print out of all the test results you had done from the GP. They will have access to the same information and you can request them as your right from the surgery , filling out a form at reception.

It's good to get this to add in your records , but also it means you can then properly check what the results were and get some idea of what they were testing for by being able to look up the tests and why they are done.

It's often helpful as well if your results are stated as normal in an appointment but you see that results are borderline normal , not to get anxious about , but it helps you take preventative measures early in diet or lifestyle if certain tests show that you could have a nutrient issue or allows you to question how your test results may link together with your symptoms to get a better answer.

Sometimes , Specialists see the word Normal then read no further and miss the odd dot .

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My health system has a website that allows me to access all my test results so thankfully I can see them all as soon as the dr reviews them and even compare over time. It is very helpful!

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To add to Bee's reply: a normal ESR can fall anywhere between 1 and 20 but that is a figure determined for a large population of patients, usually 10,000 or more. Some have low levels, some have higher levels and the majority have levels around the middle. If you are someone with a naturally low level, you could have a significantly raised level that is still "within normal range". That is what happened to me. MY normal is low single figures - it ran at 16-18 for weeks at one point but no-one remarked on it because it was still in normal range according to the books.

And too many doctors missed that bit in their lectures!

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Exactly x

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You are exactly the same age as me and I've received that diagnosis in the last couple of months, with what sound like the same markers in my blood test (ESR up, everything else normal). I have responded pretty well to Prednisolone at 20mg, still a bit achey in the mornings, but nothing compared to my illness and complete inability to get out of bed prior to starting the meds. As others on here have said, it does happen to us 'youngsters' and in my case seems inextricably linked to menopause. As someone explained to me, the PMR diagnosis really describes the symptoms, so I am guessing there may be several triggers and I would be interested to know if the hormonal changes associated with menopause might be one...

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I have wondered that as well!

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The triggers in autoimmune disorders are a piling up of insults to the immune system over a long period. There is no single trigger nor is there a single final trigger. Eventually something is the proverbial straw to break the camel's back, There is probably also no single underlying mechanism - hence the tremendous variability of presentation,

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This NICE brief on management of PMR revised in January 2019 deserves a management scenario of age 40 onwards. Not always a big fan but may as well use their brief when drs are saying 48 is too young.

cks.nice.org.uk/polymyalgia...

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Can you copy and past the relevant paragraphs for me? NICE is xenophobic - only available in the UK ;)

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Will do.

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They have included all the too fast taper = relapse which I can't remember being flagged up a couple of years ago but I could be wrong. It's got most of the "right" names on it.

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And when you see that - how come they still say 1-2 years? In their dreams ...

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I don't know why they still have that. It's a guarantee for too faster taper for a lot of us so basically contradicting their own management scenario.

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Exactly - cruising holidays in Egypt come to mind ...

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