pain on awakening, subsides after 5-6 hrs
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i would like to know if anybody out there, that has been diagnosed with pmr, has this kind of day, first of all, started 40mg prd oct 12, prescibed by gp, prediagnosis , pmr, not baseline bloodwork done prior, then every 3 days til now, taper 5 mg at a time, now at 20 last 3 days. Some mornings still quite painful, shoulders, glutes hamstrings etc, awake at 4 am,(go to bed 11-12), pain subsides from 2- 5 hrs, then extreme fatigue, but later in day and evening, seem to be awake, although if i relax on couch watching tv, head is bobbing by 9:30-10, seems to be a pattern since tapering, is it because the prednisone is leaving my sysem by evening,? but then how to explain pain in am, and early wakening, so confusing, watching my diet, no extra salt or sugar, 6 small meals a day, protein, fibre, fat and carbs try to keep 300-400 calories, lots of water all day long, i feel like a zombie through the day as rule , not much energy
0 likes, 15 replies
robby6859 cheryl74384
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cheryl74384 robby6859
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robby6859 cheryl74384
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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.
cheryl74384 robby6859
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cheryl74384 robby6859
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robby6859 cheryl74384
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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.
cheryl74384 robby6859
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dboza cheryl74384
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I have had 2 major flare ups of PMR in 24 apart. I am now 59. My first attack my doctor or the rheumatologist I was referred neither knew what I had. They thought it could be a virus and would work its way out. I had no treatment except Asaids for the pain. The second time, my doctor knew it was PMR right off the bat after the prednisone test of 20mgs. dosage. I was immediately put on 40 mgs and weaned down to zero in about 10 months time. I did not have problems with pred., actually it helped with some foot problems I was having and stopped my Raynaud's syndrome. I gained weight, but took it off. I manage a restaurant, so I was working a lot and on my feet, so being tired is relative. I have general achiness at times, but my sed rates do not indicate PMR and taking naproxin sodium helps, whereas with PMR it was useless. The only common denominator with my pmr is both times I recently had recovered from strep throat. I have never been on any statins. I have had friends that took statins and had to change, because of the pain.
cheryl74384 dboza
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Anhaga cheryl74384
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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!
dboza cheryl74384
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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!
EileenH cheryl74384
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"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"
I bet if you look at the days you feel better - you did less the day before than the days you feel bad! If it is PMR then the pred doesn't cure anything - it manages the inflammation that is the cause of the pain and stiffness. Your muscles remain intolerant of acute exercise. If you over use them - they will hurt more the next day.
At the starting dose you were on you will have had a steroid-high which makes people wide awake and like the Duracell Bunny, thinking they can do everything, so they do! As you reduce the dose that effect fades and the fatigue of autoimmune disease takes over. Part of the secret with PMR is pacing - doing things in small bites and resting appropriately in between.
If you go to this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and scroll right to the bottom you will find a link to excellent articles about pacing and its importance in autoimmune fatigue.
The PMR symptoms are "topped up" every morning by a new dollop of inflammatory substances being shed in the body about 4am - re-triggering the pain and stiffness until the antiinflammatory effect of the pred kicks in, which takes 1 to 2 hours. The earlier you take it in the morning the faster the effect tends to be - the inflammation has had less time to build up.
cheryl74384 EileenH
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EileenH cheryl74384
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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.
FlipDover_Aust cheryl74384
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I've responded to another post of yours about the inflammation/pred cycle, but what you have to remember Cheryl is that you are SICK.
Pred doesn't cure you, it only relieves SOME of the symptoms. You can't take a pill for this one and think it will go away. Only time will teach you that you have to pace yourself. It's depressing, lawd I know that all too well, but there's nothing you can do about it. The good news is you WILL get better, it's not terminal, so things could be worse (that's what I keep telling myself and it usually works!).