Was sort of diagnosed with PMR in March. Rheumy wasn't convinced due to my age. Went for an appointment a couple weeks ago because I was having a flare: tight and painful hips, low back and groin area). They still aren't convinced. They think I am too young (just turned 53) and I am only having symptoms in my hips. They were thinking maybe an RA. Blood tests came back normal. After the visit they were thinking a spondylosis. Had x-rays and MRI done. No sacroiliitis, some degeneration between SI and L1, some osteophytes showing on multiple levels. Of course, I've been on prednisone since March, so they think that is why they don't see inflammation on MRI. I had the HLA-B27 gene test done this week and she called today to say it was normal. I missed the call and I am to call tomorrow about the plan. Is it wrong of me to wish it was positive? I just want some real answers. I am starting to think that I am crazy. I am completely exhausted and just want to cry.
Feel like crying...: Was sort of diagnosed with PMR... - PMRGCAuk
Feel like crying...
You poor dear. I know all too well what a miserable time you are having. Have you taken prednisone and did it work? That is the key to diagnosis. Take care I am sure you will get it straightened out soon. Praying for You.
Hi Linny3. Yes, I am currently on 12.5 mg. Flared when we tried to go down to 10. It worked right away, but I started on a high dose as I was in the ER for horrible hip pain and when I told them I had a headache the week before with pain in front of my jaw they put me on 60 mg of prednisone just in case. I was able to see a rheumy in a couple of days. They decided it wasn't GCA. It does seem that some spondylitis has jaw pain. Who knows. I am so confused. Thank you for you prayers!
IF you went from 12.5 to 10 that was too fast and that equals a flare. I had all the same tests you mentioned. I have also had painful nerve tests. Luckily all comes back ok.
I have been in the emergency room twice for pain in ribs and hips. Once I found this site and understood better how to taper the pred. I flare much less. However, sometimes just going down 1/2mg creates a flare even on the super slow taper method. Luckily not bad enough for another trip to ER.
Sigh
I just keep trying to keep it all under as much control as I can and live as normal a life as I can manage.
Take Care
I agree that it was too fast. For some reason they don't like to go down by 1 mg until you are at 10mg. Do you know of anyone that has had just hip involvement? I am glad you are staying out of the ER!
TApering prednisone is extremely individual. It depends on the dose you are on, the doses you have been on, how long you have been on prednisone, etc. But generally speaking, its very common to drop from 12.5 to 10mg. Very common, very normal. You don't generaly need to slow down until you get to 10mg. And then even slower once you get to 5mg. But its individual, only your doctor can tell you what an appropriate taper is.
Sorry - have to disagree: only YOU can assess what size of reduction YOU can cope with. Doctors mostly assume that because Mrs A can manage 2.5mg at a time, and some can, then so so can MrsB. If your doctor tries to tell you to reduce more than you know from experience you can manage - open up a discussion with them.
Oh dear yellowdog, the one thing I will say is they are so wrong that you are too young. Lots of us were early or mid 50s when symptoms started, some in their 40s! I personally started symptoms at 54, perhaps 53. In the UK the National Institute for Health and Care Excellence has the year published documents that marked out 40yrs onwards at treatment "group" for PMR.
As Linny3 says the main thing is that you reduced VERY slowly ...no more than 10percent at a time and once at PMR doses (15-20mg). Then no more than 1mg every month to 6 weeks at 15 downwards. Some, including me, even need to drop by 0.5mg every month. If the pred worked at 15mg that is suggestive of PMR, especially if they excluded everything else in the meantime. Sadly PMR is a DX of exclusion.
I really hope you get proper help. Please keep us up to date and you need to go back to the dose that helped....Dr should know that. Good luck and feel better. 🌻
I’ve been in this sort of position a couple of times in my life for other things; it’s hideous. They are fixed in their view which seems like a blind one because it is based on a premise that isn’t based on what’s actually in front of them. Most of the tests can be falsely negative anyway. They are so certain so the next assumption, yours or theirs, is that it’s all your head blah blah or that you are awkward for not accepting whichever stab in the dark they are currently settling on. They might be right, it could be spondylitis but the main fact is that Steroids help so to my logic and for want of a positive diagnosis it’s worth keeping on them and slowly reducing as if it is PMR. What is there to lose? You could bargain that.
This is the part where you have to decide whether to become part of the diagnosis decision or sit there like a lab rat discussion piece. Have you done step one which is reading as much as you can about PMR, spondylitis, RA etc? You shouldn’t have to, you feel awful and it’s not your job, but becoming expert is a good thing whatever. Print off good info to show them eg, PMR is in over 50’s and even then not exclusively.
Step 2 is find a good advocate if possible, ideally somebody who isn’t aggressive but takes no crap. The job of both of you is to use the knowledge you have to get the docs to properly think it through with a bit of logic and/or common sense. At times you have to knock through the crust of assumptions like, “the odds are small so it isn’t happening”, I will hang on to and clinging on to investigations that are very fallible instead of looking at irrefutable evidence.
Step 3, be prepared to get a second opinion.
Step 4, be prepared for them being right but hopefully you’ll know enough about all the other possible diagnoses to settle. If you can’t, you have to go with it but document everything you experience for when you go back again. Be sure you are not trying to shoehorn your own theory into a diagnosis that doesn’t fit eg overlooking other facts that don’t fit. Or, ask them to consider more than one issue.
As I said, for now I’d be trying to bargain to keep on steroids since they treat other things too, slowly (you’ve got a life to lead) reduce and see what happens.
I do understand wanting something to be positive, it’s crazy isn’t it?
That’s only my opinion and you may have done all that anyway, so stand by for more thoughts from others!
Thank you so much for all the info SnazzyD. I feel like that's all I do in my spare time, but it sure is interesting to say the least. It would be much nicer if I was reading it for someone else 
I'm not sure if you saw my update at the bottom, but my Dr. called saying they want me to get a second opinion because they don't know what to think since all the tests have come back normal. I think an advocate would be a good idea too, especially because I tend to be on the quiet side. Yes, I am sure the tests will be falsely negative too because I've been on prednisone which is great but stinky at the same time because it's probably covering up the clues. Thank you again and I hope you are feeling well!
It is perfectly normal to look for a definitive diagnosis. I felt exactly the same. Until then you feel as if you are somehow fraudulent. What dose of Pred are you on?
If you are suffering from PMR and are on a sufficient dose, I think you could expect to feel much better than you do.
I have Cervical Spondylosis and PMR was actively much worse from the start. I felt really ill in addition to the pain - this didn’t happen with my fairly extensive Osteoarthritis. I started on 20 mgs of Pred and obtained relief ( almost total) in 48 hours. My response to Pred was the key diagnostic factor. 53 is not too young for PMR. There are a number of people in this age group on the forum and some who are in their 40’s.
That is exactly how I feel Sheffieldjane. Fraudulent. In fact when I first saw them they already didn't think that it was PMR and were watching to see what would happen when they started to taper. I don't remember the jump, it might of been from 20 to 15mg and they would wait to see if I would call with a flare. I did flare and she said hmm, it probably is PMR then, we didn't really think it was.
You’re not the first to have had to go through a rapid taper while the docs look on to see the result because they can’t decide what’s going on. Must be a better way but I don’t know what.
I got PMR at 52 and it took 2 years to get a definite diagnosis.i was told I was too young and didn’t have stiffness in the morning so it couldn’t be PMR! It was a real relief as once you have a diagnosis, then any problems are seen in this context. Before that, my Rheumy just kept throwing me new drugs for every pain I had. I changed Rheumy at that time because it really wasn’t helpful.
Being well informed especially through this forum, has made all the difference since then.
Two years is a long time. I've only done this since March and it is an exhausting road to travel! I hope you are doing well!
I’m actually 7.5 years in now- keep hoping it will go soon!
Wow! I hope so too!
Hello yellow dogs. I am going thru a similar situation. Here’s my take: continue treating with prednisone and assume it is pmr particularly if the meds are working. But don’t sit on your honchos, keep learning about it. Since you are young, there’s a good chance you will burn out quickly. If it rears it’s ugly head again, be prepared for a deeper dive into determining what is causing your condition. But being barely above fifty and the first time with pmr, I would continue with prednisone and use the tapering programs outlined from the pmr folks on this site. As pmr pro says, symptoms rule
PMRpro also says - being young isn't any guarantee it will go away quicker ...
I wish my rheumy would let me follow my own prednisone taper, but it doesn't work that way. She sets the dose and I call back if I'm having a flare and we discuss about where to go from there.
She may be like my new Rheumatologist. She may be trying to find the cause and focusing on the cause. Not the result, PMR.... They don't seem too concerned about flares.. basically, they seem more focused on finding the problems. Not sure if this is more prevalent in US than UK, but there may be some different strategies from doctor to doctor.
Check if she is doing research then ask for a consent form! She needs to have a more humane way of treating you. Ask her if she would like to be zapped with a cattle prod everytime you flare.⚡
LOL!! I love this!
At least you are on pred and I assume it is making a difference. There are people ten years younger than you who have been diagnosed with PMR. Some doctors seem to think you must be in your dotage to get it.
The HLA-B27 Test being positive means you have a higher than average risk of certain auto-immune diseases. A negative result means you can still get them though. Whether it is positive or negative does not mean that much I would have thought. Looks like they may be clutching at straws.
Taking pred reduces the inflammation, so you would expect tests to be normal if the pred is working.
I do hope you can get things sorted out with your doctors.
Yes, the prednisone is definitely helping. For some reason she is very much in the thinking that I shouldn't be on it for longer than a year which is why she tried to jump from 12.5 to 10mg. I think in the end you will be on it longer when you flare because you have to go back up. I agree with your thoughts about the blood tests. Isn't that why they came up with axial spondyloarthritis? Thank you piglette for your response.
A lot of doctors have this hang up with steroids. As you say by reducing too much and then having to increase again is actually much worse than reducing slowly. I do wonder about their common sense sometimes.
Exactly too faster taper is an indicator of relapse.
Poor you, it sound as though you have been through the ringer. Don't let them tell you you are too young. I'm 48 and there are lots of people on this forum who are younger than me. The age thing is only a generalisation of age not an absolute, there will always be those of us who fall outside of the norms of any condition.
I agree with all the advice already given. Hopefully there will be light at the end of the tunnel for you if its PMR or something else. Good luck!!
Thank you Libra-girl. It's nice to be thought of as young, but not when they don't seem to want to listen. I hope you are doing well on your PMR journey. May I ask what your symptoms were?
Looking back I started to get stiffness in my hamstrings for about a month or even 2 before it was so bad that I went to the doctor. My symptoms started slowly but I attributed the pain and stiffness to other things (I do have severe arthritis in my foot (hallux rigidus) which will require surgery). It was only when I got to the point that I couldn't lift my arms to wash my hair or get dressed and walking the dogs ending with me in tears. The worst of it di come on very rapidly though, a week maybe, from just feeling very stiff and sore to not being able to get out of the car, looking at a pencil on the floor and deciding to leave it there rather than trying to pick it up. Generally feeling 1000 years old.
My GP was great and said PMR right away follow by 'but your far to young for that'. She then did a series of BT which showed very low vit D along with very high inflammatory markers. I was put on 20mg Pred as an 'experiment' and within 48 hrs I could touch my toes again and was pretty much back to normal BUT I do get very tired still. I try to listen to my body and rest when I need to but I have mostly resumed my life from before.
My GP has basically left things up to me. I email her updates and she requests BTs to double check things as and when she thinks they are necessary. I am pain/stiffness free. I swim 1-2 weekly, pilates once a week and walk my 2 labs twice daily. I'm down to 10mg now having dropped 20mg to 15mg after 3 months then 1mg every 3 weeks. By all accounts my journey has been very quick (started on pred in Feb) and easy compared to some.
Sorry I did go on a bit but I hope that helps in some way.
xx
Thank you that was very helpful. Interesting, mine started with a hamstring pull that would not go away and then low back before the hips. Thank you again!
Check out some of the links on this page, particularly the Bristol paper.
patient.info/forums/discuss...
There's a lot of information in some of those links.
Thank you HeronNS. There is a lot of great info there. I will read definitely read the Bristol paper.
Sounds like my rheumy - I was 56 by the time I saw him, after 5 years of PMR symptoms. He wanted it to be anything but PMR - but a different GP in the practice agreed it was PMR. Some think it is beneath them to diagnose, as if it weren't real rheumatology ...
Very interesting PMRpro. You might be on to something!
After discussing my condition with the 2nd rheumy, I feel the first one was somewhat lazy. His idea was, "You have PMR and take these pills and you will feel better" without getting to the root cause. The new Rheumy i am seeing really wants to get to the root. We are investigating possibility of a fungus in my lungs that started the whole process both times. When the fungus burns out, so does the PMR.. If this is true, I can alleviate the potential of PMR the rest of my life.... fingers crossed...
I.e. he isn't assuming this is PMR - he is looking for other underlying causes of the symptoms...
How can a fungal infection "burn out"? (If indeed they find you have one.)
I hope you realize there is no definite answer to " root cause" of PMR... It is unknown. While the other condition can cause similar symptoms and the diagnostic process should have eliminated those, making connection between possible fungus in your lungs and PMR is a stretch at best. Sure, other illnesses can tip the immune system into "overdrive", but many other factors can contribute. I am saying this , to save you a disappointment, which may happen at the end of the search for "root cause". Just be careful...
Not sure if I could trust my new dr on my 2nd referral, but he was quite positive I was over this bout and insisted on tapering quickly off steroids cause he though I no longer needed it. Well, I started quickly tapering and went down to 5 mg on Wednesday... No PMR pain, yet.. fingers crossed. So he may be onto something.. not sure what he's getting at yet, but he sure was interested in some of the nasty places i have to go for inspections from time to time. I think my PMR, or whatever it is, has burned out already. This lines up with my bout 6 years ago. Symptoms lasted about 6 months - a year.
inflammation is like drip system, it takes a long time to overflow(flare). Pay attention to change in symptoms in about 2-3 weeks.
Ok. You may be correct. My crp level is 40. So there is definitely inflammation active. But then again I have a bad cold. On the other side, I don’t think s cold without fever would cause such a high crp level. If pmr is active, I believe you, it will soon reveal it’s ugly head. Thanks for your insights
Update: The Dr. called me back and said that they want me to get a second opinion. They think I should be looked at with fresh eyes because my tests come back normal, but my symptoms are saying something else. And so it continues... It looks like I will continue on the 12.5 mg of prednisone and 200 mg twice a day of Plaquenil. Usually I call with 1 week to go and she drops me down. After 1 week back up to 12.5 from 10 mg I am feeling better with less stiffness and aches. I'm hopeful that the exhaustion will be gone too. That is a hard one to deal with when you can't go on without a 2 hour nap. I start back to teaching next week and I'm a little worried about that. Thank you for all your support. It is amazing how much better you feel when you know you aren't lost in the woods alone. Thanks for coming out from behind the trees to say you're right here with me
One thing you have to work out in this game is what is withdrawal and what is flare. Withdrawal can be quite achey painy and tiring and if you don’t get time to level out it can cloud the issue. I’d get on to your employers ASAP and start getting measures in place.
Yes, I believe this is why my Dr. said she wasn't so concerned about the tiredness. It did go on for about 3 weeks (2 weeks on 10 mg) until all the tests were over and I was able to go back up to 12.5. Still having some hip and groin area achiness, but overall much better.
Sorry that you are so upset and confused ,l hope you get some answers ,sending caring thoughts and prayers that you will feel much better soon x
Thank you so much Grants148
Yes - my PMR pain is only in my low back/buttocks / hip area. I briefly experienced neck pain prior to starting on prednisone. I’m glad to hear there’s someone else out there like me and hope you get answers soon- hang in there!
I too am only afflicted in the lower half of my body. That is why it was hard to diagnose. Most difficulty sitting as bones lower pelvis the worst. I couldn’t dress myself. Lifting legs, rolling over in bed, etc. Next to impossible. Started 20 pred and back to close to normal very quickly. However weaned too fast and when I had a flare I had arm and back problems. This meant to me that the PMR had spread. Back under control and down to 8 using the DSNS method. We should be greatful as imagine having it in arms as well. This is all I can handle. Good luck!!
I'm sorry you are going through this, but thank you for letting me know I am not crazy and alone!
Thank you AnitaB for letting me know that you are going through the same thing. I hope you are doing better.
I too am crying today. It is so frustrating when Drs won’t listen. I am being told by a second rheumy that there is no way I have PMR because I am 48. It must be seronegative RA because all my bloodwork is normal except for sed rate. And he said steroid will make anything feel better so the fact that my pain is 95% gone on 20mg is not proof of anything. They are making me taper from 20 to 17.5 for a week, to 15 for a week to 12.5 for a week to 10 for a week and follow up in a month. I am so scared my pain is going to come right back and I won’t be able to dress or walk or climb in bed again. My symptoms are textbook PMR and barely have anything in common with seronegative RA. Why do these drs. have to be so shortsighted and obsessed with my age. Plus if the pain does come back he said it’s just because coming off a steroid is going to make you feel awful regardless. He even said let’s not argue about naming the disease. the most impressive thing is getting off the steroid. So basically I have to completely give up the one thing that has actually helped me. I know none of this helps your situation other than to say I am crying with you today. And sending a virtual hug and wish for some definitive answers.
My new rheumy is also very hesitant about calling it pmr. Even if walks talks smells like a duck. Really resistant and don’t give a rats arse about putting you in a flare to try and prove the point
Ugh! cranberryt, this sounds horrible. Why do they do this. Please keep me posted on how you are doing. Very similar to what my Dr. said. If she was on prednisone and came off she would feel tired and not great either. I'm not sure how that helps! If they could only walk in PMR shoes for a little while!
You are so right- Dr's are sooooo stubborn. I look back and know I had this for many years. I try to tell the Dr. something that is a fact and he says no -can not be. They need much more education on PMR.
Yes, I think they think it is not very important. Quality of life is so very important!
It's not weird to want a name and recognised illness that can be treated. After almost 5 years of trying I finally got a DX of fibromyalgia. You know when you feel right. Get yourself. Then it's great if it works?!?!👅
I'm over two years into PMR and my Rheumy still records 'Probable PMR' at the top of his reports to my GP. This is despite high inflammatory markers when diagnosed, the miracle of pred experienced 24hours after taking pred and my Rheumy telling me I had / have it and treating me for it for two years! Maybe they just don't like to commit????
Sorry to hear you are suffering like this and hope you get the correct diagnosis soon!
I fully understand the frustration and concern about not knowing what is wrong.
Hopefully you will soon get a diagosis and treatment.
Keep us all updated and hope you are soon feeling a bit better. X
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