I was diagnosed with PMR on March 13, 2017. I did 2weeks at 20 mg prednisone, felt like a new person, but worried about side effects and what the prednisone is masking, i.e. Too confident and not careful enough in pushing my body to the physical limits. DEXA scan shortly after revealed that I have advanced osteoporosis. Wanting to taper prednisone more quickly than rheumatologist recommended, at week 3 (15mg pred), I consulted with an acupuncturist/herbalist, who has been giving me 3-4 acupuncture treatments per week and am on a regular regimen of pain and anti-sweating herbs. I self-tapered prednisone down to 6mg within a week 's time after that initial consultation, but couldn't manage the pain that returned, even with huge, frequent herb doses. Acupuncture took care of bulk of gnawing pains for about 24 hours following each visit.
My question: if Chinese medicine is only addressing the pain through acup and herbs, where does that leave the inflammation getting addressed? Prednisone seems to make the actual inflammation go down. I have been staying away from caffeine, sugar and alcohol, and eating super healthy "anti-inflammatory " foods and supplements. Is this enough?
Also, when is someone in a "flare" versus just experiencing ongoing symptoms, like difficulty walking after sitting in a chair etc? Would that returning horrible pain at 6 mg prednisone be a "flare" ? Did I screw up my chances for healing because I self-tapered too quickly? And flared?
BTW, I am now taking 11mg prednisone-- since my 6mg "crash"--and this seems to be a stable dose for now --keeping the bulk of pain at bay.
My rheumatologist wanted me back on 20 mg for 2 weeks, then 15 for 2 weeks (basically to start the whole thing over) because of my returning pain, but I resist doing that to my body if not necessary. 11mgs gets me through the day. If someone out there had insights to help, please write! Thanks for listening.
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JoanJo
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As far as I know, prednisone doesn't actually "cure" PMR. It settles and controls the symptoms, which is why we do our best to find the lowest possible dose which will work for us. I haven't had a flare such as you describe but a lot of people have and they will be along to offer their advice and share experience. What I do understand is that the best way to handle a flare is to go to the dose where you last felt well, stay there until the symptoms are under control again, and then reduce very slowly. In the long run you'll end up taking less prednisone if you taper this way.
In the meantime, get your diet sorted, lots of leafy greens, take supplements, including VITAMIN K2 which is often forgotten but which we really need, and get as much appropriate weight bearing exercise as you can. (walking, Nordic walking, tai chi, wearing a weighted walking vest, some kinds of yoga and zumba - not all)
I was on prednisone at a dose above 5 mg for seven months of the year between my first and second DXA scans, yet solely through natural means I was able to improve my t-score from -2 to -1.6. Even if your score is worse than that, which it will be if you have osteoporosis, you should still be able to start on the same healing journey. Another thing is to learn strategies for protecting your spine and strengthening the supporting muscles. And tai chi is great for improving balance, thus avoiding falls which are the biggest cause of fracture in anybody, no matter their bone density!
It is a flare in the sense you have reduced the pred dose too far and allowed the symptoms to break through.
As Heron has said already, pred does not cure anything. You start at a dose that is enough to clean out all the existing inflammation - which is what causes swelling and as a result pain and stiffness and then you reduce that dose, preferably slowly, to find the right dose to combat the dose of inflammation which is caused each day as long as the underlying cause of the symptoms we call PMR is active, an autoimmune disorder that causes your immune system to attack your body by mistake. In 75% of patients this autoimmune part remains active for anything from 2 to 6 years. For the rest of us it may be even longer.
As long as it is active you need pred to combat the inflammation - or you try to ride it out. I had it for 5 years without pred, not out of choice I hasten to add, and was relatively disabled as well as being in constant pain. Nothing would induce me to try to live without pred now!! But it isn't a case of "pred is bad, no pred is good" - that leaves unmanaged inflammation coursing around your body and that in itself can lead to longer term problems such as cardiovascular disease and peripheral vascular disease and even cancer.
You really would be better taking perhaps 15mg for a few days and try to clear out the inflammation you have let in - 11mg without that may be enough. Even if the 11mg is only slightly too little eventually it will all build up again and you will have the same situation as you had to start with. There is no virtue in taking too little - you have the downsides of pred without any benefits to make up for them and run the risk of really having a flare that will need even more to sort it out again.
I couldn't agree more with PMRpro that taking too little gives you the downsides without the benefits. In my early stages, when I had reduced too much, I initially increased my dose by just a little. It didn't help much with the pain, and eventually I had to acknowledge the need to go back to my original starting point. Next time I began to reduce I was much more aware of the need to go slowly and gently, and above all to listen to what my body was telling me.
Going back to the start was a depressing thing for me; but happily I've managed my reductions much better since that time, and haven't had to yo-yo at all. It's taken me about 4 months to get from 15 to 10.5mg, and though that may feel a bit slow (because I'm impatient!), it's sure. The next stages are likely to be even slower but I don't mind because I just want to be going in the right direction. In the meantime, I'm doing all I can to protect bones (right kind of exercise & diet).
It's such a balancing act, and we're all different. Hope you find the best balance that works for you.
Thanks Patience 1-- I understand your reasoning (and your blog name!) and PMRpro (thank you too for your thoughtful reply) --I ask you both the following question: I'm functioning pretty well at 11 mg right now. Wake up with sore/stiff legs and shoulders, but that quickly dissipates as morning goes on (had acupuncture yesterday as well which helps). I can't bend down to pick things up until about 3 or 4:00 pm each day, when I start to be at my best. Neck stiffness is with me all day, but not debilitating, and occasional low back aches/shoulder aches, but it's very minor right now and disappears with acupuncture treatments. Are you saying that if I jump back up to 15 mg prednisone, I would wake up with zero stiffness/aching? Do you think I would lose this all-day neck stiffness and be able to bend down to the ground at 8 a.m? I hesitate to jump up 4mgs because of all the prednisone side effects and how well I'm doing at 11 (comparatively speaking). Herron says I should find the lowest dose that keeps me functioning/sane, but you think i may somehow pay for this if there's another flare, i.e. the flare would be much worse? I'm confused! If you have time, appreciate your input. Thank you.
Not everybody gets 100% relief on even the correct dose of Pred, but you certainly should expect more than you seem to have at the moment. I wouldn't have said you were "functioning pretty well" if you can't do certain things until the afternoon.
If you don't want to go right back to 15mg, then why not try 13mg; those extra 2mg may be enough, although you won't know until you try, and unfortunately they may not be.
I know your Rheumy suggested 20mg, then down to 15mg, which is obviously what he/she suggests to most patients in his care with the same scenario. The idea being that although it is high (and probably too much) it does at least get the inflammation under control quickly.
I also understand you not wishing to increase Pred, but the longer you don't take an adequate amount the worse things will get. You need to get things under control, and at the moment I would suggest they are not.
As has been said many times, you need as much Pred as you need! That varies from person to person, and depending on circumstances can vary day to day.
People do worry about the side effects (know, been there), but there is little point in taking too little - no relief from pain, but still susceptible to them (side effects). It's a no win situation!
No, a higher dose might not produce a 100% result - few of us have that! But I think you need to experiment a bit.
I would suggest you need to try taking your pred earlier - and possibly splitting the dose somehow. You don't have to take the other part shortly before bed, some people can take it mid afternoon and still have a good start to the day.
I would also suggest that MAYBE you have something more than "just" PMR going on - myofascial pain syndrome or some other back muscle problem. Maybe a sports massage therapist or physio could shed some light on that?
During the 5 years I managed PMR without pred I did Pilates, initially just that, but later after an aquafit class in a warm pool. The class I did was a flowing sequence of Pilates moves and at the beginning of the class I could barely bend at all, by the end I could touch the floor! And half an hour in the sauna and steam room beforehand also made a big difference - although aquafit was better.
Hello again. It may also help to factor in the timing of your dose. Many here recommend early dosage, even in the early hours, to counteract the upsurge in inflammation that apparently takes place every day from around 2am onwards. The thinking is to get on top of the surge asap. I have tried it, but sadly it doesn't work for me. I don't cope well with disrupted sleep, and the effects of the pred begin to wear off late afternoon and I'm fit for nothing in the evening. I know I could then try splitting the dose, to get some relief later in the day, but I just find it difficult to get the timing right (don't have an orderly routine!), so for me it's preferable to manage with the extra stiffness (stiffness, though, not real pain) in the mornings when I'm fairly fresh. I take my pred late morning and find that sees me through the day and I sleep ok.
I think it's really a case of trial and error, to see what suits each of us best. From what you say it sounds to me like you're having too much pain at the moment. I think the danger is that if you only increase the dose say 1 or even 0.5mg, it's not enough to get on top of the flare. Near the start of my journey I had to go right back to 15mg, but even that didn't give the same benefit as I'd felt when I was first prescribed. However, it enabled me to get things back under control and I've since then been able to decrease steadily. I completely understand your worry about the risks to bone health, but my worry would be that if I did not get on top of the flare it would prolong the journey. I think it's called "the lesser of evils"! Hope this is helpful.
Morning stiffness is partly a sign the PMR is still there - the pro-inflammatory substances are shed in the body every morning about 4.30am and the longer you wait after that before taking the pred, the more inflammation and stiffness develops. The dose of pred you are looking for is the one that manages that daily top-up best. Timing may also be significant - some people find taking their pred before bed or at a suitable time during the night stops the morning stiffness ever developing.
Thanks to everyone who responded to my last entry. This forum has been extremely helpful to me in many ways, not the least of which is emotionally-- not feeling quite so alone in my pain, and very supported.
DorsetLady-I may just try the 13 at first to see if mornings improve. If I were to wake up with no pain, could bend easily in the a.m. and don't experience the aches I described, does that mean the flare is gone? I feel like I need a concrete definition of the word "flare" and what sets it apart from "normal" PMR discomforts.
I appreciate PMRpro's food, vit K and exercise ideas. I currently do a lot of walking, have done Tai Chi --good idea to get my balance back-- and am considering swimming. If I jumped back up to 15, as you suggest, do I keep that steady for 2 weeks? Or longer? ( Why does Dorset's 13 sound less threatening? Most likely my advanced osteoporosis diagnosis and fear of diabetes (runs in the family too) If I try 13, would I do the same amount of time --2 weeks before taper-- or longer perhaps?
Whether 13,14 or 15, perhaps I will split up dosages as a couple of you recommended --try starting different morning times as well.
So mind boggling to me is this notion that PMR is not cured by prednisone, yet we need "the full amount" (15 for some? 20 for others?) to get inflammation under control.
I appreciate Patience frankly telling me I have too much pain for what it should be at this point in time. I guess I needed to hear that opinion, though not happy at all about it! Does the presence of ANY AMOUNT of pain/ stiffness always equal "a flare"? I wonder : Do all of you who've contributed to this conversation experience any stiffness or pain at all? If you do have aches , pains or stiffness, obviously PMR RELATED, are these an automatic red flag for you that something is wrong, and do you consult your rheumy immediately and/or up your dosage?
Appreciate all of your input. Thank you for listening to my long- winded mulling-over every detail, and forbaddressing so many of my questions related to this uncharted territory which has become my existence.
Looking back through this thread I thought I should reply and give you some support although UK and Europe should be asleep right now (only 10:30 pm in my time zone). I detect a theme. You have some other health issues which make you particularly afraid of being on prednisone for long. But you need what you need. One thing PMR/prednisone, a double-headed dragon as I visualize them, have taught me is patience. If you now, from this very day, take what you need right now to control that inflammation, and at the same time continue to do what you can to improve your health, you should soon be able to start to S L O W L Y reduce your pred dose. Improving your health status isn't just about the alternative treatments although I think they can be helpful and have used some myself, but more basically caring for yourself through plenty of rest, exercise in the open air if possible, actively avoiding stress, eating the purest food you can find/afford. Self care at this point in your journey is so very important. Look on pred as one of the tools which is moving you towards a better place, not an enemy to shed as quickly as possible. Gently tapering your dose to the lowest amount that works to control your symptoms may take many months, but you won't fall apart from pred side effects in the meantime. Take it from me - I ended up with bone thinning (dealt with by nutrition and exercise) near diabetes (dealt with through diet) high ocular pressure, near glaucoma, and a few other less serious ones. All gone now although I'm still on a low dose of pred and expect to be taking it for some time yet. If you allow pred to help you, you will avoid flares. If you ease away from pred slowly enough to avoid most of the pred withdrawal symptoms you should have a much more comfortable journey. ❤
I don't write funny things about prednisone, like MarkBenjamin does, but I did compose a little story about my ambivalent feelings about pred. Enjoy! Then try to relax and get a good night's sleep, or a have a good day if you are in the antipodes!
(Still awake in the States) Quite a story! Definitely gets the pred point across. An idea: Could you maybe add a couple more (kinder, gentler) characters along the way who help out too, in sync with your wholistic approach of taking care of ourselves through rest, diet, exercise? I definitely like what you had to say about that. Makes total sense when you look at the big picture.
Also I love metaphor, humor, satire--anything to brighten the scene, or see a new perspective when dealing with PMR and having to carry on with life's responsibilities (which don't seem to go away just because we're not feeling well). You are a good writer. Thanks for sharing.
You are welcome to write your own little chapter. Dorset Lady did! This was my take on the situation on a particular day during my particular journey, and to be quite truthful the other things you mention haven't personified themselves in my imagination the way pred has. I'd love to read what you, or anyone else, has to add or change. We are all different!
Thanks for taking time to write, with baby in tow. Liked hearing your story. I'm stuck on knowing levels too. ESR was 82 when PMR was discovered on March 13. CRP LEVEL WAS 11.4 (normal being 0.0-0.7) So promptly started on 20 mg and yes, like you, all pain (including neck) greatly diminished by day 3. After 2 weeks at 20 and feeling fine, rheumatologist reduced me to 15. Symptoms started returning so sought help from Chinese doc who worked to alleviate pain for short intervals. Completely overwhelmed by my newly discovered advanced osteoporosis, I then self-reduced to 6, fearing any more pred would take me out. On April 13 my ESR was 45 (no reading on CRP). I was pleased with that drop, but my rheumy wasn't, and that's when she told me to go back to 20 mg. Bucking her plans in fear for my bones and possible diabetes, I tried upping from 6 to 8 mg for a week, with Chinese herbs and acupuncture, but moved up to 11 mg now for the last week. Sore but functional. By 3 or 4:00 pm each day (when I begin my receptionist job) I am feeling more mobile, yet tire easily.
So why do you think, Eliz, that you contracted GCA? From tapering too quickly? How long were you on the 60 mg?? What was tapering off of 60 like? Was the neck pain a warning for GCA? I do have pretty constant neck pain unless I've recently seen my acupuncturist. Thank God you came out of that horrible GCA experience with your vision intact! What an absolute scare!! I'm glad your osteoporosis was not as affected as it could have been too.
Hope I'm not overwhelming you with information and questions. No worries about quick replies with your child care demands, but again, I appreciate hearing your story and insights.(and everyone else's too).
PMR can be the symptom of GCA - you don't contract it, it isn't an infection, your immune system goes haywire and it happens. Tapering too quickly won't cause it - it just unmasks it. Neck pain MAY be part of GCA - but equally it may be due to muscle problems, particularly myofascial pain syndrome which is common alongside PMR and can lead to spasmed muscles. Spasmed muscles can cause all sorts of pain and symptoms - neck and shoulder problems, low back pain, rib pain. It can be a whole mish-mash and many doctors are unaware of what it can entail. Myofasical pain syndrome responds well to physical therapies such as massage and myofascial release - and a speedy result can be gained from steroid injections that place the steroid exactly where it is needed. I have had both.
I had thigh pain - it started being unable to do a simple step class and really was obvious when I wanted to use the cross-trainer to get ready for the skiing season, I couldn't do more than a couple of minutes without awful claudication in my quads. I briefly had scalp pain and jaw claudication for a few months. I have never been diagnosed with GCA - and 15mg pred wrought a miracle in 6 hours. My bloods were never even marginally raised (ESR never got above 7).
You were never diagnosed with GCA, but do you think that it was GCA? Glad it was such a good outcome, especially after hearing Eliz and others talk about their experiences. , I've asked another question in my reply below regarding the slow inch-up to inflammation erased versus a sudden quick heavy dose. Wonder if you have info on that.
I'm glad you made me more aware of signs of GCA. I watched a news video shared by someone in this blog too. They focused on symptoms of jaw and neck pain and headaches, if I remember correctly.
I have neck stiffness, leg pain (not just thighs) and groin pain. Will definitely stay on top of this.
I have the same temptation--to up dose for a day or two to see if all pain is erased. Like you said, we don't take note of some symptoms unless they infringe on our lifestyle. I'm remembering difficulties at 15 mg, but wish I would've been doing a health journal then to recall the details.
Right now, I will probably inch up to the (hopeful) point of feeling"normal". Today I moved from 11to 12 mg. I want to ask PMR pro if this slow move up to the "inflammation erased" point is as effective as a quick jump up (5 mg or more).
Glad your daughter is ok. You've had a few scares in the past few years. Stress definitely contributes to All of this. January was a terribly stressful month for me --symptoms started then and were full blown by end of February, then diagnosed mid march.
Glad to be functioning --even if it's at a very slowed down pace. Would we all have curled up and died 100 years ago? Or been in wheel chairs? When was prednisone invented? I've never had to ask for so much help from others! I've always been the super caretaker of everyone else!. Grateful I'm alive right now and have so many I can call on for help. Thank you for yours!
I was never asked about it - and in those days I didn't know any better. The rheumatologist team were fixated on headache and visual symptoms, which I didn't have. Anything I tried to tell them - including the 6 hour response to 15mg pred - was ignored and he wanted it to be anything but PMR, as if it was beneath him. He wanted me to take sulphasalazine but I was about to move to Italy and couldn't start it until I had found a local rheumatologist to monitor me. Luckily, no-one here thinks it is anything but PMR - nor do they get edgy about the time it has gone on. Pred works, I'm well, that's fine.
Some people just do not "mount the acute phase response" to use the technical term. No-one really knows WHY, it is just so.
"I want to ask PMR pro if this slow move up to the "inflammation erased" point is as effective as a quick jump up (5 mg or more)"
I doubt it to be honest. If you add 5mg for 2 or 3 days and it DOESN'T help there is nothing to stop you going straight back to where you were.
100 years ago we would probably have been accepted as normal elderly people. Both my grandfather and a great aunt almost certainly had PMR in the 1950s. Both were accepted as having "rheumatics" and the aunt as having a heart complaint because she couldn't lift her arms to do her hair without pain (sound familiar?). GCA patients who lost vision after a headache were assumed to have had a stroke.
Pred was invented in 1950 and was hailed as a miracle drug because they gave high doses to arthritic patients in wheelchairs - who got up and walked. It wasn't until later that the long term consequences of high dose pred were observed - and greeted by a knee jerk response of terror on the part of many people which has persisted.
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too much going on - how much to taper after last flare?
Too soon to celebrate?
How soon can I start the slow taper?
Counted my chickens too soon...!
