Duration of PMR before it burns itself out

Lol.  That's what I think based on everything I have read everywhere.  It takes a bunch longer than 9 months.  However, if he diagnoses them incorrectly maybe it is nine month average because they never had PMR to begin with.  I do know two older women who each were diagnosed with PMR in two different states here in US and both have gotten off within a year.  So I went by that holding out hope until I started to search the net.  Now I think under a year is the exception and that most of us have this for many years if not forever.  I wonder if there is a variable on the strength.  It certainly seems like patients in the EU are on higher doses than here but I don't have a representative sample so it just may be the people who have turned to this site.  I, too, think limiting the carbs and certainly the refined sugars will help squelch a bit of the inflammation but I don't think it, in and of itself, will put PMR into remission.

And no - I know a lot of US members who are on similar doses. People who are early in the journey are on higher doses usually and there are fewer who have had it a long time I think - lots of people disappear once they have the hang of reducing and know their own bodies.

Thanks.  Good information.

it's too bad that once people get the hang of reducing that more don't hang around to do what they can to help others.  Thank goodness you are still here.  This is such a tough journey to do without support.  I can't find a support group where I live.  Bummer.  Oh well, this is more immediately accessible anyway and on bad days can do it from bed.  Is anyone doing research on the causes?

There isn't really one - there are no genes that are specifically linked to PMR/GCA. The genetic link is more that they believe people with a Scandinavian heritage are more likely to develop it. 

I've thought hard about this question. The problem is that I first got this in my 78th year. My Mother died in her 77th year. She had sore knees but never had real treatment for this problem..the literature r it is genetic but I've not been able to find a link of this in my immediate family. A fist cousin to my mother had severe rheumatism and I believe she was in a wheel chair. Her grandmother and my great grandmother lived to a ripe old age but of course

I don't know how she was! Have you ever heard of a correlation with eczema

and PMR? I did have a small case of this on my legs last year, which after the Prednisone disappeared. My Rheumy said of course you have always suffered from this since childhood, but that was certainly not the case, this was my first case of the thing. Actually, I had visited a dermatologist who prescribed  5 percent hydrocortisone and when I started to get very tight legs at the back I believed I was having an allergic reaction to the medicine. I stopped it immediately and waited for this tightness to go, but it just got worse and started in upper Arms, I couldn't brush my hair etc. and the rest is history. Be happy to read of any connection you may have! Thanks 

Jeannae, I'm inclined to think there is some sort of familial link but whether it's genetic or something connected with shared early life experiences or environmental exposures, I don't know.  I have a family of cousins whom I lived with for several years when we were small children.  I'm the oldest and have sarcoidosis and PMR, the cousin closest in age to me has rheumatoid arthritis, another cousin has osteoarthritis, the third one I was told first has fibromyalgia, but later someone said it's polymyalgia (she's never told me anything) and the youngest has schizophrenia, also considered part of the whole auto immune inflammatory spectrum.  There is also an adopted son in that family, and as far as I know he has none of these or related disorders.   

It has been found that schizophrenia isn't a typical autoimmune disorder:

Last year, "Is schizophrenia a disorder of the immune system?" in SCience Daily reported

"The international team led by Dr Jennie Pouget from the University of Toronto and Dr Jo Knight from Lancaster University have found strong evidence that schizophrenia is different.

They tested the idea that genetic variants influencing immune function contribute to the disease but they found that the pattern in schizophrenia is not the same as in classic autoimmune disorders.

Among 108 regions of the genome previously linked to the schizophrenia, they found only six which act on both the immune system and the brain.

Jennie Pouget said: "This doesn't mean that the immune system isn't involved at all but it could be involved in a completely different way."

Hospital.  Maybe he only has a couple of patients.  Hope not but time I ask!

As time goes by, I tend to think of pred as far more than a pain reliever, and consider pred to get pretty far back towards the root cause of the illness.

I think that this is the reason that flares from taking insufficient pred tend to be so volatile and self-energizing, because the mechanism of symptom expression fuels the cause nearly at it's source, such that over-use of affected tissues actually brings on flu-like symptoms and burning sensations, not just soreness.

I took an advil capsule yesterday following my periodic hours-long, vigorous yard-work episode, and similarly it seems to have completely blocked the reaction that I expected to be feeling this morning.  I feel better than usual even.

So much more than a pain-killer, more of an inflammation interruptor at some level, much like pred. I must also mention that I've been taking an increased dose of 3mg pred per day over the last few days so can't really say which med is doing how much for my symptoms, but they appear to be working synergistically.:-)

I did find the Advil to be all but useless early on, before pmr diagnosis.

But this was recommended in a different thread here for the case where one is doing some very strenuous activity, so I gave it a try as I said I would, and so far so good.

My worst problems of late have been in my shoulders, slightly different on each side, but I even did three sets of 11 pull-ups yesterday, before the 2-1/2 hours of lawn-mowing in steep, rough terrain, and today no soreness to speak of. I'm amazed, and will repeat this experiment with Advil again.

I don't worry much about the two meds causing stomach problems these days at my very low dose, and the only reason I've heard of for avoiding this combination. 

Thanks, Pam.  I'm taking cal, mag, zinc because my calcium low and now showing degenerative changes in spine.  Taking 50,000 iu's of vitamin D once a week for two months then hopefully once a month. I'm in year three.

There is evidence that neutrophils are implicated in some way in GCA at least - a study showed their prescence in GCA and other large vessels vasculitides even after 6 months of high dose (above 20mg) pred. It is known that neutrophils are involved in some way in how pred exerts its antiinflammatory effect but I don't think they know how. It occurred to me a few years ago when this stuff was published that there must be a link somewhere.

Dan, I'll be very interested to hear how your Advil experiment goes in the future.  After a 10 months of PMR I'm only down to 15 mg of pred (hopefully dropping to 12.5 next week) but I've gotten nailed hard by pain a few times recently after a day of heavy physical labor at my job.  Always shows up about 2:00 am and lasts until my next pred dose.  If combining pred with advil helps prevent I'd sure try it.

PMR seems to be hard to predict how it reacts to different circumstances.  I just got over a cold that hung on for 3 weeks.  11 of those 21 nights were hellish for pain.  Now the cold is gone and yesterday I worked outside on my yard raking, shoveling, on the rider mower for 4 hours and other work.  I figured I'd flare up last night for sure.  Instead all was well for the first time in many nights!  Go figure.  With all these recent episodes my hands and toes have gotten swollen and painful.  I hope that isn't permanent.  The hands have been tender all thru my pmr "life" but the swollen toes are a new issue that really concerns me.  I see my rheumy specialist in 5 days - that'll be my 1st question for him.

Eileen, the Rheumy specialist seemed confident.  When I first started having pain issues last summer they thought it was Lymes Disease which is a tick-borne illness that runs rampant in our region.  However, both treatment (minocycline) and tests yielded negative results.  After a battery of tests, everything came back normal except an ESR test that showed 38 mm/hour.  Evidently the normal range is 0-15 mm/hour.  This was in late October.   That's when they pegged it as PMR, along with the supporting result of another test that I can't recall or spot in my lab notes.  The hand/foot inflammation is very new.  Otherwise, the pain has been in the predictable places - shoulders, knees, thighs, biceps.  Actually, the original tests were done by my CNP (certified nurse practitioner) and she put me on Prednisone a week or two before my appointment with the rheumy specialist (I'd been waiting 2 months to see him!) as she thought it was the PMR because of the tests.  The specialist looked at those tests and after examining me and a few other tests, agreed.  He was a bit irritated that I was already on Prednisone prior to seeing him but I didn't give a damn at that point - I was just happy to be pain free.  

I'm interested that they tried you unsuccessfully on minocycline as someone is claiming they have "cured" PMR by using longterm minocycline. I also know someone who had PMR symptoms for which pred worked well but she couldn't tolerate the side effects so her husband (a medical scientist) and her rheumies agreed to try the antibiotic approach which also apparently worked. Of course the problem is that looking at a series of 1 with no controlled conditions you can't say it was the treatment or the PMR just went into remission!

I had hand and foot problems at the start - but it went after a few months on pred. It is possible though for late onset RA to present as typical PMR and only turn into more obvious RA much later. Which was why I asked.

The tests of ESR and CRP (c-reactive protein, was that the other perhaps?) are just general indicators of inflammation - they aren't specific to PMR and would be raised in RA too. Rheumatoid factor doesn't HAVE to be raised, especially in the early stages but also ever. It is called sero-negative but there are rheumies who don't believe in it.

The minocycline was used for targeting what they originally thought was Lymes Disease.  It and another antibiotic are the main drugs used for Lymes which hits just about every family up here in "deer tick territory".  It was when I had no improvement after 3 weeks of the medication and when the Lymes testing came back negative (although the test is notoriously inaccurate) that they started looking elsewhere.   The rheumy specialist does say that prednisone is the only consistantly effective drug to use on PMR so at least he's accurate on that.  

I think you are correct, the other test was the c-reactive protein.  

Saturday afternoon, evening and all of Sunday were absolutely perfect for me with zero pain and feeling great but about 4:30 this morning I started to feel the pain ratcheting up again until the next prednisone dose kicked in about 7:30.  Now its 12:30 and I'm about 75% of what I was yesterday.  Can't wait for the work day to be done.  Why it goes like a yoyo currently is just beyond me.

Thursdays appointment should yield an interesting conversation to say the least. 

The morning pain is "normal" with PMR - about 4.30am is the time at which the daily batch of inflammatory substances is released in the body and go to work to cause inflammation and pain and stiffness, The sooner after that time you can take the pred, the less work it has to do and the sooner the symptoms will improve. Splitting the dose, say 2/3 in the morning and the rest later in the day may work to carry over to the next morning - no pain...

The other cause of yoyoing symptoms is you have a good day and do too much - and the next day is a bad day so you do less. Which often means the next day is a good day - rinse and repeat.

Interesting point about the daily release of inflammation - hadn't thought of it that way.  

I have been splitting the dose pretty much as you mentioned, mostly successfully until recently.  Right now I take 10 mg about 6 am when I get up and then 5 mg about 7:30 pm.  I was taking it at 6 pm but decided to back it off a bit later to see if that'd help with the early morning pains.  Jury is out on that one.  

Some days I'd agree with you that the pain matches up to how much work I did the day before.  However, it really seems more random for me - not matching to the work load.  For example, Monday was a very busy, stressful day in general and also had lots of physical work making a couple deliveries and unloading the trucks by hand.  Tuesday (this morning) I feel really great except for tender hands (they're always that way nowdays) and feeling a bit tired which, after yesterday, isn't a surprise.    If I were to track it I bet "rinse and repeat" would match only half the time.  

I did finally test the use of Advil as I had been intending, but took one capsule immediately following the 2 hours of hard work pushing the mower over the "technical" terrain on a large hillside.

I ate only a light meal after re-hydrating,and slept unusually well that night. I awoke with less pain than on a normal day and was able to do some work and some jogging that same day.

I normally sleep better and feel better when I eat less during the second half of the day, but I was surprised by how well I felt the day after mowing the lawn.

Much of the soreness that I expected the yard work to cause would be present even without my pmr, so the Advil was perhaps addressing more of the normal over-use issue and less of the pmr issue.

Again, I am sticking with a higher 3mg pred dose for now during this season of frequent heavy yard work.

My running comfort, speed and duration continue to improve at a slow and steady rate at this time. I started running again after the first two years with pmr had passed, so have been at this for about 14 months, now up to 6.5 miles or about 10k, and at 5+mph or under 12 minutes for each mile.

Interesting that you've found advil so helpful.  I've inadvertently tested aspirin the same way - but by taking it for headache, not for potential overexertion - and invariably find I feel better the next day with not just the headache relieved but also other aches and pains.  But I resist the temptation to take it other than for headache, and I don't seem to get many of those these days, thankfully.  

Yeah, I'd have to agree that  it sounds like the Advil isn't really dealing with the PMR so much as it's handling the more normal aches and pains.  Sounds like you've got things leveled out quite well.  Hopefully it continues that way.  

Calcium and Vitamin D3 are only half the recipe for bone health. They can't grow new bone without Vitamin K2 and magnesium.