Possibly true, although this is the fellow who as a little boy was the one who used to break out in a terrible rash from exposure to things like bubble bath.
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.
Bonjour, merci oui, je l'espère, il pourrait disparaître en un an. Je prends les choses un jour à la fois. En lisant tous les commentaires sur ce forum, je me rends compte que les choses peuvent changer très rapidement. La diminution se passe bien jusqu'à présent, mais je suis conscient que des poussées peuvent survenir à tout moment. Je passe à 6 mg demain, on verra comment ça se passe, ;
prenez soin de vous et merci encore.
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.
I was very bad for first 3 months, a little bit better for next 3 months, was diagnosted in 9 months, was one month on prednison, and had to quit due to stomac issues, then started taking intiflammtory supplement based on Turmeric and chinese herb and progrssevely got better, not good, but much better, and then my doctor decided it's not a PMR but Fibromyalgia. I was taking Tramadol 50 mg for pain, and was taking just one per day and that kept me going.I'm in much worse shape that I was 4 years before when I was doing yoga, many things I cannot do now - bent my knees, sitdown on the floor, my arms/shoulder kind lost streng as they were the worst affected by PMR, I'm stiff, but I'm now back working on my fitness level - started walking, stretching. My family doctor told PMR can go away in some people without medication, and I'm not sure if I'm one of them as I do not take prednison. If I would continue be sick as I was in first 3 months, I would probably need to stay on prednisone or other medication. since lately any medications side effects worse then original probel, I'm trying stay away as much as possible from taking medication.
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.
Eileen,
How do I know I have PMR and not RA. I had positive ANA titre speckled pattern. Thx
I think I'm right in saying that ANA is usually normal - medscape thinks so anyway:
"Antinuclear antibodies, complements , rheumatoid factor, and anti-CCP levels are usually normal. Serum interleukin-6 (IL-6) level is elevated and often closely parallel the inflammatory activity of the disease; however, the test is not readily available in most laboratories."
If ANA is done in a query PMR patient it is to rule out other potential causes of the symptoms - there are several illnesses that produce polymyalgic symptoms. The Royal College of Irish Physicians says:
"Antinuclear antibodies are autoantibodies directed against a variety of components of the cell nucleus. Most healthy people have a low ANA titre (defined as < 1:80 in Irish laboratories). ... The most common autoimmune disease associated with a positive ANA is connective tissue disease (CTD)."
It depends on the titre of the result - but usually they don't do the further analysis unless the titre is high. But I do have to say - if I had been given a result for ANA I would be asking the rheumatologist why he thinks you have PMR and not one of the connective tissue diseases. While pred will help the symptoms it is rarely the best approach.
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.
J'ai finalement testé l'utilisation d'Advil comme je l'avais prévu, mais j'ai pris une capsule immédiatement après les 2 heures de travail intense pour pousser la tondeuse sur le terrain "technique" d'une grande colline.
J'ai mangé un repas léger après m'être réhydraté, et j'ai dormi exceptionnellement bien cette nuit-là. Je me suis réveillé avec moins de douleur qu'un jour normal et j'ai pu faire un peu de travail et un peu de jogging le même jour.
Je dors normalement mieux et je me sens mieux lorsque je mange moins pendant la deuxième moitié de la journée, mais j'ai été surpris de me sentir aussi bien le jour après avoir tondu la pelouse.
Une grande partie des courbatures que je m'attendais à avoir à cause du travail dans le jardin seraient présentes même sans mon pmr, donc l'Advil a peut-être traité davantage le problème normal de surutilisation et moins le problème du pmr.
Encore une fois, je maintiens une dose plus élevée de 3 mg de pred pour l'instant pendant cette saison de travail intense dans le jardin.
Mon confort, ma vitesse et ma durée de course continuent de s'améliorer à un rythme lent et régulier en ce moment. J'ai recommencé à courir après les deux premières années avec le pmr, donc j'ai été à cela pendant environ 14 mois, maintenant jusqu'à 6,5 miles ou environ 10 km, et à 5+mph ou moins de 12 minutes par 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.
Today, I go to Yale to an integrative health doctor to see what the latest research is over here on adjuncts to prednisone. Hopefully they have some more ideas in addition to the curcuminoids which help some. I'll keep you posted when I get back. This practice is respected so hopefully they can bring me up to speed on the latest do's and don't's.
Merci de nous tenir informés !
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.
Thanks for the lengthy informative response. My titre was 1:160 speckled pattern. If this is connective tissue disease how would they treat it?
ill drive my poor rheumatologist crazy. He called today and was so happy I was doing better back on the methylprednisolone.
Corticosteroids work there too - but there are other drugs that help that doctors get less iffy about you being on long term! It is really worth him considering that as different connective tissue diseases respond to different drugs and in some cases it is important because they can cause organ damage when not well managed. That is a weak borderline positive ana result and maybe your doctor thinks it is too borderline to be concerned about but he should repeat it to see if it changes, which does happen.
Ok, thanks. I'll ask him if he can repeat it. Worth looking at. Also wonder if a differential diagnosis could be adult growth hormone deficiency since I was on it for many years and went off cold turkey?
Absolutely no idea at all - but I'm assuming your rheumy does know all about that? I really don't know if there are any long term risks of GH therapy that might be relevant. Out of my field I'm afraid.
Rheumymdoesn't know. Endocrinologist here doesn't either. Was treated 2000 miles from here. May need to go back to that endo to get some answers.