"I'm 49, could this be PMR" follow up
Posted , 11 users are following.
I went to the doctor on Tuesday and described all my symptoms. He seemed to think it was PMR he wanted to draw labs before he ordered the prednisone to see what my baseline was. Well my labs were completely normal. So I got a message from him that since my imflatory markers were normal and my age that that ruled out PMR. I sent him back a message asking if we could try the prednisone anyway. He said that it wouldn't do any good. He would order labs to rule out RA and order x-rays of my hips and shoulders. The xrays are normal except for some "degenerative changes" and calcification in the right shoulder. I haven't seen anything about the lab reseults yet. He said a rheumatologist won't even look at me till labs and xrays are done. The closest rhematologist is 3 hours away. I usually don't have a problem with my doctor and I differing on what treatment I should try for something. All I know is I am miserable.
0 likes, 37 replies
ptolemy Snoopboxermidge
Posted
Did you mention to your doctor that around 20% of people find that their inflammation markers do not rise and stay normal? You may be one of them. Could you push a bit more for just a week's supply of pred as a trial say 15mg a day? I am not sure PMR checks the age of people, as people in their 40s do get it!
Snoopboxermidge
Posted
I didn't think that I needed to because he even said that he had seen paintents sometimes with their markers sky high and then some as being "almost non existant". I think the big hang up is the combination of my age, being under 50, and the lack of imflatory marker. I see him again on Nov. 15th. I'm hoping by then I can find an article or something about something similar to my situation. If anyone knows of places that I might look let me know.
Danrower Snoopboxermidge
Posted
Strongly suggest you google Seronegative PMR and RS3PE to find the articles you can use to help your self diagnosis.
Anhaga Snoopboxermidge
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Small consolation I know but it may be a good thing that you are having everything else checked. Often someone is given pred very quickly, and maybe it works well, but there are other issues so they have to be seen by a rheumatologist or other specialist and then have the added complication that pred is now possibly masking other things. I really really hope that it doesn't take long to have all these things checked out, and that the right treatment, whether it's pred or not, works quickly once you get it. Hang in there!
P.S., if you show any of the signs of GCA, especially vision changes, please get thee to an emergency department as your sight could be at risk. Giant Cell Arteritis is a medical emergency as serious as a heart attack or stroke.
Snoopboxermidge
Posted
I forgot to mention that in the message that my dr sent me telling me it could not be PMR he suggested that it could possibly be a fibromyalgia flare. When I explained the pain to him I told him that it was different from my fibro pain and that my fibro pain was under control.
If I have signs of GCA I will go to the ER. It is a rural hospital. Hopefully they won't blow it off as a migraine. I have been to the local ER before for migraines beforr snd one of my main symptoms is that I lose vision in my right eye. How can I tell if it is GCA related? Is there more than the vision loss to look for?
Danrower Snoopboxermidge
Posted
I am one of the sero-negative PMR people, and it took 8 weeks to persuade my physician that I had PMR. I think that 20-30 % is a more likely ratio of PMR sufferers who are sero-negative. I happen to have a sister symptoms called RS3PE (Remitting Seronegative Symmetrical Synovitis With Pitting Edema). I had it first when I was 52.
Sero-negative is in the title!
These are complex conditions, not fully understood. Many physicians , including rheumatologists, here in the US, are poorly informed about normal inflammatory markers in PMR patients.
One of the diagnostic confirmation tools used is a low dose pred (around 15 mg/day) for a week, and those with PMR/RS3PE will often have miraculous results within 12 to 24 hours of first dose.
Good luck,
Dan
chrissy_311068 Snoopboxermidge
Posted
I was 48 when all my pains began, it gradualy got worse that I felt crippled. My GP was reluctant to diagnose me with PMR because of my age and my blood tests were normal, however, he did agree to let me try preds. Well, within 2 days I was a new woman, I could run up the stairs etc. My GP then referred me to the hospital for further tests. They made me come off the preds slowly to see what happened, sure enough the pains returned with a vengeance so they have now been able to formerly diagnose me with PMR. Ask your doc if you can try preds for a week,if it doesn't help then its not PMR, such a simple way of finding out, I don't understand why Docs have to be so awkward. I always say at the age of 48, I am not stupid, I have common sense and know not to abuse the drugs, I am not a silly teenager! Good luck
celia14153 Snoopboxermidge
Posted
So frustrating! I would tell him the truth. Go back and tell him how miserable you are and ask him if it would do you any harm to have a short term course to test your response and see it it helped. He's doing the right thing by you in ordering the tests but PMG is unpredictable and hard to diagnose. My GP put me on pred before the tests! Rheumatologist came six months later. Good luck and let us know how you get on.
Vicki200252 Snoopboxermidge
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Has your Doctor suggested any pain relief at all?
One thing I do know is the levels can go up and down as in my case.
If your in pain go back and ask for the test again, and talk about a suitable pain relief as you shouldn't have to suffer.
Snoopboxermidge Vicki200252
Posted
I already take percocet 4 times a day for arthritis and gabapentin 3 a day, duloxetine 1 time a day for fibromyalgia. But none of these take care of the pain that I have now.
EileenH Vicki200252
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If it is PMR - there are no painkillers that work. Just pred which attacks the cause of the pain - but not the underlying cause of the illness.
Vicki200252 EileenH
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exactly right
EileenH Snoopboxermidge
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I'm not surprised and he is wrong! Like Dan I am seronegative, have mild RS3PE and definitely PMR which bordered on GCA so is probably large vessel vasculitis - it took 5 years to get to try pred which had a miracle effect in under 6 hours!! Initially though my ESR hovered around 16-18 which no doctor is likely to pick up as being high - but my personal normal is more like 4-7, so 18 is pretty raised for me. So what ARE your figures?
Is there any chance of seeing a different doctor? I know it is difficult in rural areas. How does HE know it will do no good? At least if he TRIED it he could then say "I told you so..." if it didn't work and a week won't do any harm...
If you can't find stuff with google tell me and I'll find some for you but it is a pain trying to post links at the moment.
Snoopboxermidge EileenH
Posted
My ESR is 19, CRP 0.30. The waiting list to get into another doctor is about 6 months. Plus I have a good relationship with him on all my other multiple health problems.
I am going to push for a trial week of steroids when I see him.
I'll keep looking on google and let you know if I don't find anyhing.
ptolemy Snoopboxermidge
Posted
Go for it and stand your ground. You are only asking for a week's worth of tablets and you may have a favorable result before that. If it does not work at least then your doctor can discount PMR. It is fantastic that you have a good relationship with your doctor, some people have real fights it seems and trying to find a second opinion in a rural area can be difficult, I know!
Anhaga Snoopboxermidge
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I know there are different ways of measuring CRP but I think yours is actually an elevated reading no matter which system is used.
ptolemy Anhaga
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I CRP of .3 or some people say 3 is fine for CRP isn't it? An ESR of 19 is fine too.
Anhaga ptolemy
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I think where I am the level for a good CRP is down around 10. Mine finally got to something like 9 after about 2 years whereupon my doctor said I didn't need to see her again for any tests for a year! They only allow testing either ESR or CRP, not both. We switched about halfway through those couple of years. I think I should suggest that she give me two forms at the end of the year, one with CRP and the other tests on it and another, which I'll have done a couple of weeks later, for ESR. I think it makes sense to see how far I've come (or not) since the beginning.
lynda62707 Anhaga
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I'm trying to remember what my sed rate was...I'm sure it's in one of my posts but I can't find it. I know it was Very high (I want to say around 90...YIKES)😱.
that's SO much higher than what I'm reading!
what are the ramifications?
ptolemy Anhaga
Posted
If you are allowed a choice I have heard that CRP is the better test of the two. On the other hand both would be even better! My CRP has never been in the normal range nor my ESR. My highest CRP was 415 and it is currently 29. The doctors just shrug and say that must be my normal. Presumably because they haven't a clue!!
ptolemy lynda62707
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Lynda I replied to Anhaga by mistake, sorry about that.
Snoopboxermidge EileenH
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I'm having a hard time finding anything on seronegative that does not say that to be diagnosed you have to be over 50. If you have any info and can't post it here you can email it to me. Just be sure to put in th subject what it us so I am sure to open it. Thanks for your help.
Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
EileenH Anhaga
Posted
It varies from lab to lab and you always have to check the figure YOUR lab quotes. And anyway - there are 2.5% of patients at each end who have normal results for them that are not "within normal range" - though obviously when the range starts at zero that is less likely...
EileenH lynda62707
Posted
None really - you can have high levels with PMR or low levels with GCA, it is only a guide. Some people produce more of the protein that makes it high than other and other things contribute too. Just because the level is a big number doesn't mean you necessarily need a higher dose or have a worse case - the response to pred means more.
EileenH Snoopboxermidge
Posted
I doubt you will find much that doesn't include the 50 age criterion. Sense however says it doesn't wait for a birthday!! You will probably need to look for both separately. It is quite difficult to find age-related stuff for PMR, cases of GCA in younger patients are acknowledged and warned about. And somewhere there is an article saying normal blood markers are more likely in atypical cases - which includes the young
However - this is a new one even for me:
https://www.ncbi.nlm.nih.gov/pubmed/28324118
where the abstract says "Since PMR can develop in mid 40s..." and I imagine the original has a reference to back that up - I can't get at it.
But more common is rubbish like this claiming it is "rare under the age of 70":
https://www.gmjournal.co.uk/polymyalgia-rheumatica-in-the-older-patient
GCA and PMR are the same disease but at different points on a spectrum - and there are documented cases of GCA in people in their 30s. So why not PMR?
This
https://www.ncbi.nlm.nih.gov/pubmed/9673611
reports on a 24 year old with what was finally accepted to be PMR - and they do comment on missing cases because of age. It is infuriating, when I first found this paper the journal was free to read - now you have to pay a subscription to something to get at it. If only I had printed them off and filed them - I'd need a bigger home though!
Almost all the articles will say it is "rare" in under 50s - rare does NOT mean it doesn't happen and we have had a few young patients on the HealthUnlocked forum. The criteria are more for inclusion in studies - not for diagnosis. In the Oxford Rheumatology Library pocketbook on PMR and GCA, they say "(PMR) occurs more commonly in individuals aged 50 years and over", again, acknowledging it happens younger too.
The problem is that PMR can be the symptoms of underlying malignancies - so if your GP is being silly and refusing to consider PMR for you, he SHOULD be investigating all the potential nasties urgently. Like mine didn't for me. But I didn't know any better then... The usual is "fibromyalgia", depression, "your age", somatism etc etc. Fibro is easy to rule out - if it responds to pred it isn't. Depression is part of PMR for many people. But there are a few cancers and other inflammatory arthritides that are options.
Anhaga EileenH
Posted
The references are listed on the Springer site, although the full text article behind paywall
EileenH Anhaga
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It is listed on 3 sites - all paywalled. It wasn't originally.
Anhaga EileenH
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For people who live near a university they may be able to access these journals through the university library. I was able to access a couple because I'm allowed to use the medical school library and they have electronic subscriptions to these journals. I know not all places, even big institutions, will be as free with allowing access to the public. We are really lucky here that the public libraries and academic libraries have some sort of agreement to allow free use by the public. We just have to sign up, a very simple procedure if you are already a member of one of the institutions, in my case the public library.
EileenH Anhaga
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I used to use the uni library in the UK. Bit different here though. The nearest medical school is Innsbruck - in Austria ...
Anhaga EileenH
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I wonder if you could get a long distance membership?
EileenH Anhaga
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I think my husband did register with the Uni library here - an outpost of the one in Bozen and quite small. To read the scientific stuff he would have had to go to Bozen since here didn't have the facilities - don't ask me details!
Anhaga EileenH
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I was just thinking that nowadays everything is on line, or at least recent things are. A day will come when people like you and me will have access to whatever we want through our devices no matter where we live. Probably for a fee.
EileenH Anhaga
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No "probably for a fee" - many things that were previously available are far more difficult if not impossible to find without paying already. And unless you are a member of a uni or the like the chances are you can't afford it. Plus the fees go to the publisher - the book my husband edits each year makes a fortune for Springer, the scientific community that gets that work together gets barely a cent.
But either way, it is not a good thing. Much funding is being wasted because new researchers assume everything of value is online and don't look at older research that isn't. My husband's own research has been "replicated" because the researcher hadn't looked at his work. One group even presented a mathematical model to predict something he'd already measured the best part of 30 years ago - and their model was utter rubbish!
celia14153 EileenH
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The point about people not checking older research that is not online is such a good one, and I never thought of it. Teachers should warn their pupils of the wealth of information that isn't on the net still available to them from Libraries!
Anhaga EileenH
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This is very interesting and disturbing.
EileenH Anhaga
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We think so too - but we have vested interests!