Under 50: dx with PMR
Posted , 15 users are following.
I am a 47 year old female who was dx with PMR in February 2018, but I’ve suffered from all of the S&S of this since my 30’s. I have been an RN for 10 years. With that said, I’ve thought the worst about what I’ve been going through: malaise, joint and muscle pain, pain during sleep so bad it wakes me up, hard to turn over in bed, so painful to walk when I finally roll out of the bed, blah, blah, blah! I could go on and on😳 So paranoid about my symptoms that I could really have bone cancer instead of PMR.
PMH: Type 2 diabetes, HTN, osteoporosis/arthritis, Hypothyroidism just to name a few🙄. I’m too young to feel this darn old! Which brings me to this question..... typically PMR affects older people right? Why is that? And how likely could I have been misdiagnosed?
I was put on a tapering dose of prednisone yesterday, and ofcorse after one dose, I already feel a little bit better! I have read others horror stories about taking prednisone. It has been dubbed “Demon drug”. As a nurse, I already know all of the horrific side effects. I already have DM so high glucose will not be a shocker to me. But I can tell you, as for me, living the way I have is next to death, and if I could dig my own grave and roll over in it, I would. So I pray that the prednisone works, and I can manage the side effects. I do plan on weaning off of the prednisone, but I’m doubtful😕
i would love love to hear from others that are young as I am with PMR!
0 likes, 18 replies
EileenH Guest
Posted
Try reading this:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
Pred is NOT the demon drug that so many doctors will try to tell you.
And you will get off pred - 75% of patients do so in up to 6 years - anything from 2 years up.
There aren't many under 50 - plenty of us who were 50/51 when it started though.
Have you seen this page?
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Guest EileenH
Posted
is there any info on why PMR is only considered to be a true dx for the elderly? I read a case study on someone who actually had leukemia instead of PMR and that what worries me....Hope I’m not misdiagnosed!
Thank you,
Necie
EileenH Guest
Posted
PMR is only the label for the set of symptoms, many painful muscles - there are several underlying causes. In our case it is an unidentified autoimmune problem causing our immune systems to attack our bodies in error. In the differential diagnosis the doctor should have done various basic tests which would/should show there was something else amiss. Leukaemia should be picked up from full blood count results suggesting that further tests were required. Doctors who DON'T do these basic tests are failing their patients. You rule out all the nastier options and once that is done, you can say that this is probably the PMR we talk about causing the symptoms - but even then, it does depend on symptoms and the response to pred fitting.
Since there is no definitive way of diagnosing PMR - the nearest is maybe a PET-MRI which will show characteristic inflamed areas and even that isn't definitive, particularly once the patient is on pred at any dose - then it is up to the doctors to rule out the other things accurately.
Rheumatologists experience is that it is older people who develop it. My personal opinion is that that is because they don't look for it in under 50s - it is difficult enough to get a diagnosis in your 50s sometimes - and they don't find what they don't look for. Actually the guidelines and other literature say "mostly", "predominantly", "almost exclusively" - none of which mean it CAN'T happen in under 50s. And there are quite a few papers that specifically warn against saying it can't be PMR/GCA because the patient is too young and so missing the diagnosis. There IS a form of arteritis called Takayasu's arteritis which "only happens" in under 40s - because of their definition. It is histologically identical to GCA - and is probably just part of a continuation of the spectrum of the disease process. I know someone who had Takaysu's as the diagnosis on her notes - until she turned 50 when it was changed to GCA. PMR and GCA are different points on the spectrum with LVV (large vessel vasculitis) being in the middle:
https://academic.oup.com/rheumatology/article/56/4/506/2631560
Which all says to me that if there is a spectrum like that - the age range must also be wider. Their thought isn't that far yet. It will come...
But just because you feel better - DON'T do the cleaning! Especially if you have to work - save your spoons for that:
https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...
Read all the links - they are all relevant to you.
beev Guest
Posted
Hi Necie1970
I am older than you but started with PMR mid 50s. I weaned off the prednisolone very slowly, especially the last couple. I've been pred free for around 6 months now. Recently I've had some shoulder/ neck/ upper arm soreness but think it's related to statins. Anyway, there is a light at the end of the tunnel...just appreciate feeling better and don't worry about the prednisolone. It's not that bad.
Beev
Guest beev
Posted
My main question is “Why is this dx only pinned on older adults”? Makes no since for sure.
Thanks for the encouragement!
Necie
Anhaga Guest
Posted
It does affect mainly people over fifty, but there are plenty of outliers, people who have had to fight to have their diagnosis recognized in their forties and even younger. It is an autoinflammatory disease on a spectrum of similar diseases. PMR symptoms are similar to a disease recognized to occur in younger patients. It's got a Japanese name but I'm afraid I don't remember the spelling well enough to look it up. The point is, of all the autoinflammatory diseases we could get, PMR is probably the best of a bad lot. It is treatable and it nearly always goes into remission after a few years. The pred dose starts a bit high but with a careful taper by the end of the first year your dose should be quite low and less likely to cause any important side effects. Look after yourself, get plenty of rest, and allow your body to start to heal.
Guest Anhaga
Posted
Is it Hashimotos? I do have thyroid problems but I thinks my docs have ruled that out. But I will definitely bring it up again! Just ready to be somewhat normal again. Sick and tired of being sick and tired😔
I’ve taken one dose of Prednisone 40 yesterday and 30 today and was able to clean house a little bit. Got to pull a 12 hour shift tomorrow so I hope I feel like super woman tomorrow!
Anhaga Guest
Posted
Not Hashimoto's. I knew it begins with T. It's very rare, apparently, and not something we want to have. I think this is it: Takayasu's arteritis. It is much more likely your diagnosis really is PMR as Takayasu's afflicts mostly people under 35 and descriptions sound like it can be much more damaging that PMR.
You are going to have to let some things go. If you need to work twelve hour shifts, maybe give the housework a promise that you'll get to it later, but you really really do have to give yourself rest. Better to walk in the fresh air than vacuum!
peggy_56092 Anhaga
Posted
Tietze's disease.
Anhaga peggy_56092
Posted
Hadn't heard of that one. But dr google says it responds to nsaids, which I guess is a good thing!
AlVB Guest
Posted
Hi Necie,
I was diagnosed 2 1/2 years ago. I am 53 now. So I probably fit into your category age-wise. I responded well to Prednisolone. Minimal side effects, just a stupid head and some understandable depression which Citalopram has sorted out.
Now I am on 3mg tapering to 21/2mg. It's not the most fun I've had but it's not the end of the world for me. I have had to take a step back manage my day to day a bit differently. With some understanding of the disease and the right type and amount of exercise regularly you can live a fairly active life. I play a lot of music and gig regularly, I walk and swim regularly etc.,
A positive and determined outlook can go a long way, and this forum and the other one (am I allowed to add links here?) very often has positive and helpful posts about understanding PMR and tips and strategies.
Also, I suggest against going to Facebook groups, they seem really depressing and uninformed to me.....
Guest AlVB
Posted
Thanks for the encouraging response! I’m going to a rhumetologist soon to put my mind at ease. I’ve spoke to my sister today that is also a musician and has all the symptoms that I do. She has to put her life on hold when she has an episode. My NP called today with my SED rate result of 19 which is not extremely high, but high. My immature granulocytes are still high too😬 which makes me worry. But a trip to the Rheumatologist should put my worries to rest!
karenjaninaz Guest
Posted
EileenH Guest
Posted
That sed rate is officially "in normal range" but that is fairly meaningless - my normal for me is 4, upper teens is high, and 20% of patients don't have sed rates outside normal range. If you are on pred - it SHOULD be lowered, that's the pred doing its job relieving inflammation so the markers are not raised. But the PMR may still be active.
As for exercise when you ahve PMR - everyone is different and you may or may not be able to exercise without penalty or even at all.
Michdonn Guest
Posted
Hi Necie, been up and down on the devil's tic tacs, but with PMR I don't think you can live a normal life without them. I know the side effects are horrible, but far better than the pain and stiffness of the PMR. I have been so bad need a wheelchair. Worked this past season as a ski instructor and went skiing on days off. This time of the year I ride my bicycle to stay active. You can not jump right into activities we must start slowly and try to increase the active the best you can always listening to your body. I started 1/6 mile walk a rest another 1/6 mile mile. Seems hard to believe, but I was in bad shape with a doctor who was no help. The forum's help especially EileenH got me moving and my head straight. Think positive and try to get a smile on your face, I firmly believe it helps! Smiling ??
Guest Michdonn
Posted
Thank you! I have more of a smile on my face today that’s for sure. Cleaned living room and kitchen (took me All day). Still moving like a snail because of pain. Ready to go to the Rheumatologist to get a definitive dx.
Necie smiling😁
Michdonn Guest
Posted
Good for you Necie, keep moving don't let the inflammation stop you. Keep those positive thoughts and your smile. Smiling ??