Posted , 10 users are following.
Cross posted - I am new and I am sorry if I am doing this wrong - I responded to a message on a board about the age of diagnosis (<50) of PMR .. . probably better starting my own thread . . .
For the past 6 months I have had a moderately elevated CRP level and ESR, pain and stiffness in hips, feet, neck and sometimes elbows - some days it is hard for me to get down the stairs in the morning and I am frequently tired. I have been tested for Lyme, RA, Hashimotos, Lupus and Vascultis and menopause (all my ovarian function was tested). Thyroid has been tested several times. GP sent me to a rheumy. The rheumy he referred to retired. Found one through insurance who did a CBC, ANCA Panel and UA (all totally normal) and told me there was no rheumatological reason for my elevations and to get a chest, abdominal and pelvic CT to rule out malignancy and a pair of Birkenstocks. My ESR was in the 49-55 range (so not terribly elevated - CRP 9-10) (tested three times) and my CBC and UA was totally and completely normal. Anyhow, I just turned 46 and he told me I can't have PMR because I am not 50. My GP initially suspected PMR (found out after I shared my CT referral) and I am now seeking a consult at Johns Hopkins before I undergo the CT. Besides the notion of a screening for malignancy being scary - the CT seems sort of unnecessary at this point - given the fact that I show no other signs of malignancy at this point. It is very frustrating and I can't help but to think that the percentage chance of me having PMR, despite my age, is greater than the chance of having an underlying malignancy. I am just concerned I am going to have to deal with this for the next four years UGH! How much damage does the actual inflammation do to your body in the long term? I am not even sure Hopkins will see me - you have to send your records before you can get an appointment. GP said he is not comfortable diagnosing me because he does not see enough PMR cases. Sorry for the rambling - just wanted to share with people who may have been through this.
0 likes, 17 replies
Danrower pamela19292
Posted
Pam,
I had my first bout with PMR at 53, so it is not rare to fall outside the guidlines. Lots of tests to go through to find that a relatively simple "diagnostic tool" is low dose prednisone for a short time. Usually, the results are immediate and miraculous,if your symptoms are PMR. There is a wealth of info here, and better tham many uninformed USA Doctors and Rheumys.
Danrower pamela19292
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amkoffee pamela19292
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For over a year before I knew what was going on. I also had a low-grade fever during that time but only in the morning.
All of my aches and pains were being blamed for other things for example tennis elbow bad knee holding my phone too
much when my hands hurt. But it was when I had pain all over that I saw my GP about it and ran all the tests like your GP
did. So you just need a new rheumatologist not a CT. The age thing is fiction. Old information. The rheumatologist you saw
Is out of date on PMR.
robby6859 pamela19292
Posted
There are many who are under 50 and have PMR. That being said, testing for things they can test for is the way they rule everything else out. Maybe, since your Dr. has said is isn't familiar enough with PMR you could print some info on how a short diagnostic tool of prednisone would help diagnose if it is.
susan29426 pamela19292
Posted
I just had a CT scan today so my rheumatologist could rule out tumors. The last scan I had saved my life - some of the inflammation was caused by a perforation in my colon which would have killed me within 48 hours, I'm told.I've had all the blood tests you mentioned, too, and I believe I have PMR, but the new Dr. needs to see for herself, I guess. Btw, I'm 69 years old, but was told it's most common in women over 50 - that's just a trend, though, shouldn't be applied to you as a diagnostic, imo. I'd suggest getting the scan, unless it's a financial hardship. I'm on Medicare, which covers it.
Anhaga pamela19292
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I chuckled when I saw your latest specialist prescribed all those tests including a CT scan - and told you to get a pair of Birkenstocks! Guess he's really trying to cover all the bases! On a more serious note, you do need to deal with the inflammation, no matter the cause, as long term chronic inflammation can (don't say it will) lead to further illness, including possibly even cancer. Long term prednisone comes with its own delightful collection of side effects but they can usually be managed very well by living as healthily as possible, and a low dose of prednisone which most people with PMR are on for at least a year as they taper, sometimes much longer, is usually little cause for concern.
Maybe your GP would appreciate having a look at the Bristol paper which you can access through this site:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
pamela19292 Anhaga
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Anhaga - thank you! I have downloaded the paper and will share it with my GP. As for the Birkenstocks, I will definitely hold off until after age 50 for those (despite having plenty in my 20's)!
pamela19292
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Thank you - everyone. Your input so far has really helped me. I think my main issue with was the rheumy - he seemed sort of dismissive. The radiation dose with a CT of that size for someone my age is not insignficant. If my "second opinion" tells me is medically necessary and that the benefits outweigh the risks - I will do it for sure - scary or not, I am grateful that my GP admits what he doesn't know but definitely see the value in providing him with additional information as you all suggested. I guess we are sort of at a weird crossroad where today's patient is better informed than ever before and not all doctors are keen on that fact. Thank you, all, for reminding me that I am my own best advocate. I am very glad I found you.
FlipDover_Aust pamela19292
Posted
You did the right thing starting a new post - your other one will get lost. I had only just turned 51 when I developed PMR.
If it looks like a pig, smells like a pig and behaves like a pig, it's probably a pig. lol
Read everything you can on here - you will go into your Dr most probably knowing more than they do!
The only thing that really bothers me in your post is the:
"I am just concerned I am going to have to deal with this for the next four years UGH! "
This is a contrary disease - you may have a 'mild case' which disappears never to be seen again in a year or two, or you may have a more serious case which hangs around for 10 years or more (ask EileenH about that!). Studies and anecdotal evidence suggest that it will last at minimum two years and most likely hang about for up to 6 years. It also suggests that trying to reduce prednisone too quickly in the first year or so can actually delay remission - and remember, that remission is just that - PMR will probably never leave you entirely. Not the best news, but not the worst - I would suggest that some cancer diagnosis would be much, much worse!
pamela19292 FlipDover_Aust
Posted
Thank you for all the information! I was being a bit cheeky when I said I was fearing having to deal with "this" for the next four years . . . I should clarify - the "this" was being "too young" to be considered for a PMR diagnosis as it seems 50 is the magical age according to so much literature I have seen,
FlipDover_Aust pamela19292
Posted
Ahhh, right ! sorry! :-)
Yeah, even at 51 I felt a bit ripped off - this disease was for 'old people'!!! just my luck to get it at the very bottom of the age-scale.
FlipDover_Aust pamela19292
Posted
This is cut and past from a post by EileenH (thanks Eileen!!) from the "age of diagnosis' post to which you refer:
If you suffer from an autoimmune disorder then the propensity for it to reappear is always there for the rest of your life. PMR is only the name given to the symptoms of an underlying autoimmune disorder and for 75% of the population who develop it it lasts for between 2 and 6 years before the activity of the immune problem burns out - and you go into remission. There are different ways of achieving remission, the state of having no signs or symptoms of the disease as measured by accepted means - it can be drug-induced, as while we are taking pred, or it can be what I would call "real" - the disease has burnt out, for the moment at least.
But you appear to accept that it hasn't necessarily gone away when you say "with a more than average chance of getting it back." . Some experts are of the opinion that when it burns out in under 2 years then there is a higher risk of a relapse at some later date. I know a few people who have had it twice - and all of them say the second episode was totally different to the first in every sense, presentation and response to and journey with pred.
Other experts are beginning to realise that PMR probably does not come in just one version - and that would probably account for the 3 fairly clear groups: short term sufferers for up to 2 years, medium term sufferers for 4-6 years and longterm sufferers for much longer, even sometime pretty much for life. It would be very helpful if doctors cold get their heads round that - then they might be less insistant on getting patients off pred before they are ready and able
nick67069 pamela19292
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pamela19292 nick67069
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pamela19292
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Hi folks - thanks again for all your feedback. I have decided to go through with the CT scan, in an abundance of caution, and after calling JH. They told me there would likely be a delay in ordering and obtaining tests and to go ahead and get the scan. I neglected to mention that my Lyme AB IgM panel was equivocal/high for the initial test with a subsequent negative Western Blot (one positive WB band - IgG 41). GP is concerned about going down the Lyme "rabbit hole" as he called it as he feels there is more of a connective tissue or rheumatological explanation. Rheumy told me this was a false positive and inconsequential. Rheumy also did a CMP which was normal.
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