pain on awakening, subsides after 5-6 hrs

hi robby, yes i have a rheumatologist, saw her first time oct 25th, but because gp didn,t do bloodwork before prescribing pred, high dose 40 mg. and i have other issues, back etc, she is doing more bloodwork, and getting my history, previous reports, bone density, lung xra6-7y fromphysical in jan, etc, she could not confirm diagnosis yet, i see gp tomorrow, then, rheumy gave me requisition get more bloodwork done, after 4-5 days of being on 20 mg, but what is odd, is some days, i get  up hardly have any pain,? been on 20 for 4 days now, and had more pain this am, subsided after many hrs, like it,s strange, anyway, i,ll be glad if and when she can confirm a diagnosis, whatever this is, 

I see.  I am sure this will be a bit more complicated for the Rheumy to sift through since you have already been on a hefty dose of pred.   Sure would have been good to have had some preliminary blood work before starting, but that is hindsight.  Is this the same pain you were having before starting on pred?   I do know that pred withdrawal can mimick PMR pain making it hard to know if you are having a flare or reducing to quickly.  I sure hope your Rheumy can get this figured out quickly.  Let your body guide your activity for now.  Don't over do it, so you can get the inflammation down.

actually yes robbie, this morning felt like the pain i had prior to thanksgiving wkend, when it became intolerable, but as i said, as day went on, it has subsided, just dont know, very strange, i haven,t been doing too much, just little daily activities, groceries, doesn,t take much too tire me though, but i put that down to very little sleep at night, yes, i am hoping she,ll be able to put it all together, figure out what,s going on,i am upset that bloodwork was not done before high dose of pred,but my dr wouldn,t appreciate me bring that up now,see what he has to say tomorrow i guess, makes you kind of nervous going to bed, don,t know how you are going to feel when early hrs come around and you waken, well thanks for you input

also, i,m curious how this disease is triggered, i was convinced after i read up on crestor, powerful statin, that is was the main factor, was on it since last january, i stopped on my own when i started these symptons, although they say trauma, stress can trigger, we all have that i guess, it,s very strange 

I am sure something triggers it, but it could be many different things.  It is different for everyone.  I have been on statins for more than 5 years.  I read somewhere today about the statins helping reduce when you get down below 10.   I sure wish my brain would retain all this info.  There is a really great support group on facebook, if you are on there.  They are all very knowledgeable and soooooo helpful.   Many have been dealing with PMR for a while.  Some are off of pred. And some never would take it.  You can get a lot of info from people who have experienced the different aspects off PMR.  Always remember that just because it went one way for someone doesn't mean that is how it will be for you.  We are all different and we all handle things differently.  And then we all have different Dr.'s who handle things differently.  

ok, thanks robby

well that,s interesting dboza, so more evidence to indicate statins can trigger this disease, also, what was the 20 mg test in beginning you refer to, ? and most people, even my rheumy said pmr is usually started with a 15 mg dose, and it usually controls, if pmr, also, you didn,t mention if you had any insomnia, as i said, have been waking wee hrs, 4am , 5am, going to bed at 11:30, so only 4-5 hrs sleep, and being burnt out and extremely fatigued by noon, i see my gp today, and have more bloodwork tomorrow, my sed rate on last 2 didn,t show raised either, but wbc, platelets, neutrophils etc were all flagged, and of course with chronic back issues, and no bloodwork done for baseline before pred, makes it hard for rheumy confirm pmr diagnosis, she has to rule out a host of other diseases apparently,but good to hear you are off pred now, and feeling ok, thank you 

Yes the 40 mg is high, and some people have a lot more trouble with reduction after starting with the high dose.  Others, like Dboza, it's the opposite.  No wonder doctors are so confused by this disease, every patient presenting a little differently, and reacting to treatment differently!

the 20 mgs. test is a dose of prednisone at 20 mgs. If the result is no pain that is the strongest indicator it is pmr. My legs hurt first, so I went to my ortho and they saw a touch of arthritis in my knees (I had physical therapy for my flat feet that were causing knee problems and my toes were beginning to go numb and the ligaments were getting messed up. The therapy and orthotics solved the knee and feet issues). The dr. gave me celebrex, which did nothing for the pain. A good friend, who is a neurologist told me to go to my regular physician. She looked at my sed rates and gave me prednisone and then started my treatment. I would take it  in the morning by 9 a.m. if I forgot, I knew it. I would start to feel woozy, probably because my adrenal glands had shut down. I slept well, but woke up early and after that I was up for the day. As I weaned down, my blood was always checked for sed rate. Only once did it go up a little and that was around the 10 to 7.5 mgs. my doctor said that is a tricky point in treatment. My blood pressure did not go up, I am blessed w/ low blood pressure and low cholesterol. I did get a little irritable, but I knew what it was and tried to hold back. There may have been confusion about the statins, my friend who had a reaction does not have pmr. I did get a bit of a sweet tooth, more so than usual. I decided to quit drinking while on prednisone and that helped my weight loss too, I think. The first time I had a flare up, I was 35 and the mother of two young children. It was rough and I did not do prednisone, no one knew what it was that gave me pain. I was tested for lupus, lyme's disease and a host of other diseases. The only common denominator is my strep both times. After my first bout, I did develop bad allergies, hay fever and asthma. They are under control, I take a allergy decongestant every day and other sprays and drops during peak allergy time. My allergist said that I probably harboured these allergies all my life, but the trauma of pmr brought them all forward. They are all auto immune diseases. My cousin has Hashimoto and her brother, my cousin has Crohn's disease. My mother has just been diagnosed w/ Skogjen's (sp?). All auto immune and all on my maternal side. Gotta love your genes!

thanks eileen, that all makes sense, ive learned it only stays in system for 24 hrs though, i will go to that link have a look at that then

As Flip says - we can't emphasise enough that pred is NOT a "cure". You have to keep taking the tablets every 24 hours to keep the symptoms managed and under control. And that's the same for years - not just weeks or months. 

Very few drugs "stay in the system" for much more than 24 hours - they are developed that way so you don't overdose because there are left-overs of yesterday's dose or you only take them at longer intervals, there are coricosteroids that have an effect for a couple of days but they aren't used for PMR.

But as she says too - you WILL get better. Not necessarily better and off pred for some time, but better in that you learn what you can and can't do without ending up feeling awful and able to manage a fairly normal way of life with minimal pain. And pacing is ESSENTIAL. You can't fight PMR to get rid of it - that really doesn't work.