I am new to this site. I am a 47 year old male and started feeling the leg, buttocks and hip pain about 4 months ago. At one point the hip pain was unbearable. Now the lower body pain has subided somewhat but the muscle tightness is still there. About 4 weeks ago my shoulders started hurting and now I can't lift my arms in bed in the morning, put on a shirt or towel dry my back without extreme pain. My GP referred me to a rhuematologist who is awaiting my blood test results as I write. When I askd her if I could have PMR, without any pause she told me I was too young. Medical websites state the average age for PMR is 70 with it occuring to people as young as 50. I am only three years from 50, yet she was quick too put the idea of PMR down. My question is, how many of you reading this are under 50 and have been diagnosed with PMR?
Hi Pota!
I am male and 70. During the past two years we have had the discussion of age a few times. Only a year ago, most medical sites mentioned 60 as the lowest age, but (maybe through this board) now most mentioin 50 +, so there has been a change
netdoctor.co.uk says It affects around 4 per 1000 people over the age of 50 but is rare under this age. The peak age PMR occurs tends to be between 40 and 59. Symptoms can start abruptly, or can come on over a week or two.
clevelandclinic.org says People over 50 years old are typically affected with PMR and GCA. The average age of patients is 74. One-third of patients with GCA also have PMR.
medicinenet.com says Patients with polymyalgia rheumatica are typically over the age of 50 years.
There have also been people much younger on the board or similar boards. If you have pmr, prednisone will give you fast relief and usually with the relief, you know that you have pmr. You have to be patient when reducing the dosage and when you have your diagnosis you should study what has been said here about taperinbg too fast.
Ragnar
Pota, as Ragnar said, there are several earlier threads on this site about age.
Welcome, Pota. As the data Ragnar and Pgr555 discuss, the age at which PMR starts probably resembles a bell curve. The peak of that curve is unsure, but as with any bell curve, there are possiblilities way beyond the peak (in either direction) that PMR can be encountered. In other words, it's possible that someone even in their 30's or 40's could be so diagnosed, and also possible that someone in their 80's or 90's could be.
Your doctor can pretty well diagnose PMR with the prednisone test. If no relief after several days on 15 to 20 mg, she can start looking elsewhere. But it sure sounds like you'll be in the same boat with us. Good luck!
DO the newbies have to row harder than us?Hi Porta,
Glad to meet you, but wish it were on a poker forum instead of finding another who very well could have PMR.
I'm 52, diagnosed with PMR and GCA. Symptoms for PMR started when I was 51, but advanced to the symptoms you are describing. I would get tangled in my bedsheets, and had difficulty putting on a shirt or jacket.
Sedrate was high 83. Relief from Medrol (pred) within three days of starting medication. Age should not be a reference. Not all of our bodies read the literature on a disease that is still be researched and studied. Not all of our bodies are alike and respond the same way to medication or medical treatments.
Please hook up with a rheumatologist and ask your doctor to try you on predisone before nixing the idea you have PMR. Why have to continue on with these severe symptoms for longer than necessary.
There are no-cure-all's for this disease, but it should be at least manageable. Some have symptom's worse than other's but we can come here to the forum to run ideas past each other, and look for support when we are not feeling our best.
Bob, did you assign him a place to sit on our water craft? Hope your doctor becomes more open minded about your diagnosis. If not, find doctor who will listen to you.
Donna, NY
Pgr555, No sweat on the bourbon or cigar. We've got plenty of good British Navy Rum, and a new box of cheap cigars. And to answer your question regarding newbies....no, we are an equal opportunity outfit. All rowers should get beaten the same amount for the same amount of work. Unfortunately, PGR, lately you've been beating the portside rowers more than the starboard side group. As a result, we've been going around in circles. You need to straighten up!
Donna, Pota will be up on the aft deck with the guys (along with the whip cracker and the drum banger) until properly diagnosed. If he doesn't have PMR, he'll exit the boat via a short walk down a long plank. If he joins us, we'll give him a short orientation tour with the rowers and then bring him up on the aft deck to supervise PGR.
I was 49 and thank god I found a doc who believed me. If your doc cannot get over the age factor find another!EXCUSE ME!!!! I need NO supervision! Its all the substances you are pouringMarianne, You've made a great point. There are too many doctors who think it's all mental. I'd like for some on them to feel the same pain we experienced before the relief of prednisone and see how mental they think it is now.
As for you, pgr555 (can't you give us a name that doesn't sound like a robot on Star Wars?) Never think of turning the whip on the Captain (even if he is self-appointed). That's a hanging offense! But as long as you stay gentle and loving, what the hell?
And if Pota qualifies for our boat, I'll reassign him as assistant navigator to Ragnar.
Bob,Bob
I will be a good navigator after havning bought a Garmin GPS navigator that I tried out in Portugal a weeg ago. We saw the big navigator´s monument - Vasco da Gama.
Ragnar
Thanx for the replies everyone. I don’t own a computer, so I can’t respond as quickly as I would like. Like I said, my lab results are on the way, so I don’t know my results yet. I will report on my sed rate when I find out. I am discouraged to learn that one can have a normal sed rate and still have PMR. This rheumatologist I am seeing is very thorough and analytical. The way she dismissed the possibility of my having PMR, makes me think without lab results to bear it out, she won’t be convinced. Yesterday and today my shoulder pain/stiffness has been pretty much unbearable. I must admit to being sheepish about complaining here because I am sure there are many who have it worse. I just want some resolution without traipsing from doctor to doctor begging for medication. My next doctor appointment is this coming Thursday. I am taking a friend with me so I can remember most of what I’m told. I seem to have a habit of thinking I am listening to the doctor and then going into brainlock when I walk out the door. Wish me luck.
One more question (for now)… Has anyone on this site recovered without meds? My leg pain several months ago was as unbearable as my shoulders are now. I labored ignorantly through that phase and now they don’t hurt nearly as much. They are just very tight/stiff.
Once again, thanks for all your insight. I will post any info I get when I can. Let me know when it’s my turn to row!
Still learning the ropes...
...found the edit button!
I think you are right. Thanx.
Pota,
I didn't have to get so close to the computer to read your post. That was nice.
Hi Pota, Just remember that there is no test for polymyalgia. A good doctor will test you for lots of other things to rule them out of the diagnosis. The only tests that may indicate PMR are the ESR and C Reactive Protein (CRP), They are both inflammatory markers and may or may not be elevated in ANY condition that causes inflammation, including the common cold, and even in a healthy person, so although an elevated sed rate may help with diagnosis when seen in context with the clinical signs, it will not necessarily be specifically diagnostic. Don't let your doctor use a normal sed rate (if yours is), to tell you you don't have PMR. Up to 20% of people with PMR have normal ESR and CRP. If this happens to you, google "polymyalgia rheumatica normal ESR" and you will find all the literature on this. I am interested in your results when they come, as you are a younger male (and we need one on this boat!).
Polymyalgia is a clinical diagnosis of elimination. One of the major diagnostic tools for this disease is a trial of prednisone. My doctor put me on pred straight away, not waiting for blood results.
Pota, don't give in. If you have to find another dr that is ok. I always take a list of things to ask when I go to the Dr. Write it down and make your Dr listen to you. Good luck and keep us posted.
Hey all,
I do appreciate all the responses and support. I received a phone call today informing me that my rheumy (I understand now why it’s shortened for blog purposes) needed to reschedule my appointment due to personal business. It was moved out another 15 days. AAARGH!! I ended up talking with a Medical Assistant and was informed that my ESR is 17. The MA told me that normal is 0-15. He also informed me after I asked him to make the request, that my rheumy would not be willing to prescribe prednisone. She instead wants me to get an MRI for my shoulder pain and a nerve conduction test for my hip/buttocks pain. Apparently my age AND that ESR result were enough to convince her that I couldn’t be any sort of PMR anomaly.
So, with the help of a friend and her computer I was able to get an appointment with a different rheumy for this Wednesday. This new doctor happens to be the same doctor who treated a co-worker of mine for PMR. It was this co-worker who first alerted me to the term “PMR”. And, this doctor treated my co-worker with prednisone right away as part of the testing process. So, I can only hope the new rheumy is willing to test me with prednisone as well.
My lower extremity pain/stiffness is much less than it was when this whole experience started. In fact, I actually went a short time without any real pain/stiffness anywhere before my shoulders exploded. Now my shoulders are incredibly painful every morning and throughout the day and my hip/buttocks area is almost always stiff, but the pain below is day to day.
Before I went on prednisone (even now, to a lesser extent), the stiffness is worse in the mornings. When I was first "afflicted" (Feb 2006), the pain & stiffness started in my hamstrings, then went to my hips. It wasn't until a few weeks later that my upper arms & shoulders started to get stiff and hurt. Even 10 mg of prednisone provided almost immediate relief. Went from 15 to 4 mg. by Nov. 2006, then had to go back up. Some flares in Jan-Feb 2007 were mainly in my shoulders (a couple of episodes of frozen shoulders), then I started to get inflammation (& serious pain!) in my wrists and finger joints, so had to increase my prednisone dosage to 15 again for a while. I'm back to 9 mg now. So, yes, the inflammation seems to move around! Well, I start tomorrow! I had an appointment with a second rheumy today. At the end of the exam he said he didn’t think I had PMR…too young, and my ESR was only slightly elevated. He wants me to get an MRI on my hips to eliminate the possibility of Spondylitis. (since then, I read the symptoms and usual age group of Spondylitis and it really doesn’t fit my symptoms) But, he did tell me he wanted to remain open minded and he prescribed Methylprednisolone. Twenty-one, 4mg tablets. 6 spread through the first day, 5 the next and so on over six days. That’s really all I wanted, the chance to try the medicine to see if it will have a quick effect. I presume that enough prednisone over time would probably make me feel better so I hope the effect is quick so the result can be used as a diagnostic tool. I would like to know what really is causing my symptoms. They so closely match PMR that it is hard to think it’s not. But since he is willing to work with me, I will work with him. I have the MRI scheduled for next Wednesday with a return rheumy visit on the 31st. By then I will have finished the pred trial. I’m trying to not get too optimistic for relief, but that is much easier to type than do…and I’m a crappy typist. Here goes!!!! My Medrol dosages are now three times a day, because of a really bad flare involving not only the normal PMR areas, but hands and both ankle joints. My normal dosage is taken twice a day to even out the effects over the evening. In between I have to fit in the "golden" meds of Lipitor and Cozaar and Voltarian. Utram for pain. I starting to taper down from 24 mg. Can wait to see what starts hurting next. Scalp still not hurting. I wonder why their is such a difference in the way the Medrol and Predisone is given. Donna, NY Donna, You are aware that Lipitor can cause muscle damage, transglobal amnesia and there is some indication that it might also be the cause of PMR and temporal arteritis. Did they tell you that you should be taking CoQ10 along with the Lipitor if you feel you really need the statin drugs? The drug companies are not our friends, believe me! Hey all! Two days into taking prednisone and I am almost completely PAIN FREE! The prescription I received is a ‘self dosing’ blister pack. There are six rows of pills; six in the first row, five in the second, you get the idea. The first day, I take 24mg and the sixth day just 4mg. I guess you hit it hard and taper. Anyways… After the first two doses taken the first day (just 12mg), I could tell I didn’t feel as much pain. I tried to not get excited, but I have to admit I kept lying in my bed to raise my arms and getting out of bed using my arms. Those two arm activities had been absent from my repertoire in the past six weeks. Well, today I got excited! I still have some pain in my shoulders when I raise them directly overhead. Other than that, NO PAIN. I have four more days of this prescription to go. What will happen after that is a mystery since I haven’t been diagnosed yet. I don’t see the doc again until Oct. 31st. I do want to thank you for the advice to push for the pred, because it was your words that stuck in my head at the end of my appointment and made me mention it one more time. All I wanted was a chance to try it and so far I am damn glad I tried it. Now to figure out what is causing it. I'll keep ya posted! Pota, Sounds like you've got PMR from your reaction to the prednisone. I'd suggest calling your doctor and asking him to phone a prescription to your pharmacy...maybe 10 or 15 mg per day until your appointment. Tell him what a difference it made and how your symptoms are coming back. If he has any mercy in his soul, he'll give you what you want instead of leaving you to suffer for another week. Hang in there! Pota, Good going! I hope that 7.5 mg a day will do the job for you. Let us know how it works. When I found this site I was on a mission to see if I could have PMR at the 'young' age of 47. Two rheumys told me I was too young to be afflicted. Well, yesterday the second rheumy (the one who told me he wanted to keep an open mind) diagnosed me with PMR at age 47. I am thankful for this and for his open mind. He upped my pred to 10 mgs for 14 days then back to 7.5 until I see him in December. He also started me on Hydroxychloroquine, a drug he hopes to replace the pred with. He likened the drug therapy to rebooting a computer, trying to get my body's natural processes to do what they're supposed to do once the meds stop. We discussed the possible end of pred and the fact that I might have to continue or resume depending on my condition at the time. So, for the record, if any one else is looking for the answer to the age question, I hope they eventually find this thread and read these blogs, so they seek help, get diagnosed and get help sooner than I did, to avoid undo suffering. And of course, they will get to meet all of you and receive the helpful support I did! Thanks to all. Hi Pota Not been on for a while so I missed your initial post. I was 47 when I was diagnosed last October. I was put on 20mg and within 2 hours I could bend my knees and the pain in my thighs disappeared. A year later I am down to 1mg/day, joint pain is back but mercifully the horrendous pain in my thighs and upper arms have gone. I'm as stiff as a board getting out of bed but I can cope with that. I wish I had a rheumy that would put me on antimalarials so I can kick the steroids for ever. Hope you are doing well. Love Judi xx Somehow I missed his initial post, too. Welcome POTA!
Now Judi25...what's this about antimalarials??? Haven't heard a thing about their usefulness in treating PMR. Tell us everything you know!!!
my father was taking an anti-maleria drug for rheumatoid arthritis 30 years
Margaret and Knitwit...Yes, I did a little reading and saw where several of the antimalarials had been successful in treatment of Lupus and RA...no mention of PMR. I just found it very interesting that it had such diverse uses.
Love the user name "Knitwit"! Wish I'd been clever enough to have snagged it!
I was very pleased to have been diagnosed and head in some
direction with some sort of plan. I wanted to blog it so someone else wondering
if they were too young to have PMR might happen on my entry for some backup. I
was also excited to let you all know that I was receiving treatment. But when
no one responded, I figured I'd been thrown off the boat. I haven't been
here in a while. I am on Hydroxychloroquine. My rheumy told me it was a malaria
treatment and he wanted to see if eventually I could go off pred. I am taking
7.5 mg of pred once per day as well as the Hydroxychloroquine twice a day. I don't
recall the Hydroxychloroquine dose. He bumped me up to 10 mg of pred for 14
days, but I'm back to the 7.5 now. No noticeable negative effects from the Hydroxychloroquine,
although my digestive system hasn't been the same since I started pred, so if
the Hydroxychloroquine is being nasty, I may not be noticing it. All I know is I
have most of my life back for now. I still am stiff and sore in the shoulders
in the morning, but it goes away soon enough to deal with it. At 7.5 and 10 mg
per day I seem to have lost some of my appetite although I feel as though I
have gained weight. I am trying to return to my previous schedule of workouts to
help prevent the weight gain. Hi Pota, Margaret, it is good to hear from you. I remember that you were a frequent poster when I first found this board. We both came down with PMR about the same time. I notice that now I am still more tired. I'm glad to hear that the sweating will go away.
For me, and many other on this forum, it worked in a matter of a few hours.
I have never heard of the pred being spread over the day as you describe. In
fact, I have always heard the recommendation is to take it in the morning
unless splitting some for the night. (Our captain, Bob, and myself both take
our major dose in the am with a small dose to get us through the night) I am
curious if anyone else has ever had their dose split through the day?
Let us know how it goes , Pota.
pgrGood tohear you are making progress.
Like pgr, I've never heard of pred being spread through the day, although I
know some people split it into 2 doses.
Good luck
Margarethi pota and others
seems I had a remission over the past 4 months, off pred, just on aleve but yesterday IT seems to be back, in my back, knees, hands, hips, thought pain management was helping but who knows???have dr. appt. next week for flu shot....scared to get it might set things hurting worse than I already am.
went to visit the nursing home the other day and a cutie 94 year old lady told me the only thing about the GOLDEN age is that you pee golden...sweet old thing..
I'm 75 pota................who knows????
Let us know how you get on Pota. I can't understand how a doctor can decide one could have spondylitis in the hips, when the upper body is sore as well! Like my rheumy went on and on about shoulder rotator cuffs (which were fine), when I had pain in the hips and thighs as well. And an MRI is expensive too. Pred is a cheaper diagnostic tool, lol.
And I continue to be amazed at the huge variety of ways and dosages pred is prescribed! Hope it does the trick for you, you need a diagnosis!,
push hard for this, but now you know it works.
best wishes
MargaretGreat news , Pota! Let us know when you fiih your dosing. I have never heard
of that sequence before. I will be curious to hear what happens when you
finish the packet.
I have had 2 incredibly busy weeks with only about 4 hours of sleep a night.
On top of that I finally reduced my pred a little (only from 20 - 17,5).
Yesterday was the 3rd day on 17.5 and on top of that it poured all day... I
couldn't move from both exhaustion and achiness. But I slept 10 hours last
night and so far today I am much better... we'll see in a few hours!
Have a good weekend all!
pgrNot much time right now for a full disclosure. Took my last 4mgs of pred yesterday morning. All day yesterday I was still feeling good. This morning, some pain-stiffness and as the day has progressed, worse by the hour. Unbelievable. I had mentally gone to the 'I am cured' place. Now feeling the crush of reality.
ago. Can't remember the name of it - but it was reasonably effective.
Margaret
ps just remembered - I think it was chloroquine
After I had been on pred for a year, my rheumy switched me to plaquenil (hydroxychloroquin), which was originally used to treat malaria until the medical field found it worked well for rheumatoid arthritis. Not sure if it works that well for PMR (I had almost the same pain level on it as without, tho I think it did help some), but they sometimes prescribe it so you can wean off pred. It does take several weeks to kick in before it works.
Reni
Good to hear that you are feeling as if you have got your life back - I
remember that feeling well from last December - such a relief to realise I
wasn't going to be virtually immobile for ever.
I've not heard of anyone else on the ant-malerials, so it will be
interesting to hear how you get on.
Sorry you felt that no-one responded to you before - it must have felt
like being shut out. We do care - we are just a bit slow sometimes.
MargaretHi Pota, good to hear you have got your life back! And good also to have another nail in the coffin of the old chestnut "you are too young to have PMR"! I'm not sure where your post is that you thought wasn't being responded to, I thought this thread was your main one? Anyhow, do forgive us if we sometimes seem absent, we are often fatigued or depressed, OR, (on the positive side) we are sometimes feeling so incredibly well, we just don't even turn on the puter! Hmmmmmmm
I haven't been in here for months. I suppose that happens a lot when people get a little better. Just to update, I am on 2 mg/day of pred. I go to 1 mg/day in 2 weeks, then to ZERO I hope! I have very little to no pain or discomfort anymore. I'm so thankful that the pred worked. I am hopeful that when I stop completely, I stay pain free. I stopped taking the Hydroxychloroquine without my rhuemy's consent. He may not be happy when I see him in 6 weeks, but I couldn't stomach my stomach while on it...
I turned 48 between last post and now so I may have suffered and gotten past PMR all before 50.
Keep the faith all and I'll post if there are any changes -pota
I'm like you, I show up every now and then. I don't have too much new to add so I don't say much. My PMR started in August 2006 and I was diagnosed in December and could only take Prednisone until June because it did raise the pressure in my eyes.
Margaret
All you men out there - there is an International Survey and we need MEN to fill it in.
the website link is http://www.quantisurve.com/cgi-bin/pmr.asp
Get cracking - we the patients know that these two diseases are showing up in younger and younger people - we need the survey to tell the medics - your statistics are a bit out of date and also those statistics will aid reserach into cause and cure.
Another good website is (Ok OK so its located in the UK
http://www.pmr-gca.org.uk - well worth a visit.
New diagnostics in the process of being cleared in the UK.. Will update and disseminate once clearance given from NICE (National Institute of Clincal Excellence).
Help yourselves to help yourself.
mrs UK
VIV - there have been other people here in their late 30' to early 40's. Don't let the averages throw you off
MORE IMPortant -- That cut in pred from 15 mg to 5 is MURDER!!! I don't know anyone who could handle that. Read some of the old posts from people about how to reduce. From 15 I went ot 12.5 then 10,25 then 9, 8, 7.5 and 1/2 mg thereafter. Even with those low drops, I only am successful in keeping pain and exhaustion under control when I alt days of dosage from old to new for a week or 2 before settling into the lower dose.
Mot recently, I went from 6.5 to 6 mg by taking 6 for 1 day 6.5 for 2 days for a week, then every other day then 6 for 2 days and 6.5 for 1. Now I am finally at 6. Hope to stay here for 1 or 2 weeks and then starting the process down to 5.5.
Good luck!pgr555 thank you SO much for your reply. I was beginning to think I was going round the bend.
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