I am hoping to ask a very simple question now that I've been diagnosed with PMR by my GP back in June 2021 (after getting slammed with this and feeling like I was 120 years old instead of 60) and have dropped from 40 mg of prednisone to currently taking 12 mg of daily prednisone with hopes of slowly dropping by 0.5 mg per week. I have had two flare-ups that caused me to elevate my pred temporarily, but I think I've gutted things out as best I could.
I was under the impression when first diagnosed and prescribed prednisone, that I would be tapering the dosage while remaining relatively pain free. But the reality is that I still have muscle pain, tightness, and significant deficit in the arms, shoulders, thighs and sometimes even the calves. It's as if the PMR never actually leaves but the prednisone cuts the inflammation down enough so that I can function. I suppose I've been conflicted with that dilemma of side-effects of the pred vs the difficulties of tapering to fast.
So here's my question: For those of you who are trying to go through the tapering process, are those three symptoms in reality still there (that is, the muscle pain, tightness, and deficit) or are you feeling like your normal selves as you taper down?
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Sagebrush1
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Hello there, when you say PMR never leaves and Pred cuts down the inflammation you’re almost correct. The Pred does only cover the inflammation but PMR does go away eventually. This is usually a few years not a few months. The idea is that you reduce the Pred to the lowest dose that keeps your personal inflammation level controlled. You keep at a reasonably high starting dose (40mg is much higher than the usual 15-25mg for PMR) for a few weeks and then drop slowly. If you go too fast you’ll overshoot your lowest dose but don’t know when that was. It can take time for the pain to build up so you don’t necessarily know a dose is too low until you give it time. If you have pain that is affecting your function then you shouldn’t reduce and maybe need to go back to the dose where you were comfortable. Side effects can be a nuisance but it is better to stick them out then try to go too low too fast and end up on a higher dose again. For a start, eat a very low carb diet with a good protein level and fats and you’ll avoid weight gain and potential diabetes. It’s very effective.
Thanks for your excellent insights especially the notion of cumulative pain over a period of time long enough to decide the level of prednisone. I think I am beginning to understand the idea that there is a cumulative build-up of both the pred and the pain in my muscles and I need to go longer at each level than just four or five days. But I guess I'm too impatient thinking that I can get over the need for medication in a time frame that isn't realistic.
I didn't effectively communicate in the original post that the doctor had me at 40 mg for just five days and asked that I ratchet down to 20 mg afterwards. I felt like a totally new person at 40 mg within about 12 hours, but had a flare-up when I started down the 20 mg path. So I negotiated with the doc to get me up temporarily to 30 mg and to start dropping by 5 mg maybe every week or so. Eventually I ended up as low as 10 mg per day but it was at that point that the PMR came roaring back so I went back up to 15 mg and this was about six weeks ago.
Since that time, I've read enough on these posts to realize that I was probably tapering too fast and have tried to adopt the 10% rule. I'm also splitting my 1 mg tablets into 0.5 mg so I can taper a less aggressive pace.
My prednisone side effects seem to be accelerated heart rate (about 20 bpm higher than normal) a little sleep deprivation each night, bags under the eyes, and unfortunately for my wife: major snoring at night (which I never had an issue with all these years until now). Fortunately I haven't experienced any weight gain at all and in fact ended up losing five pounds thus far which I think is partially due to vanishing muscle mass.
So, thanks again SnazzyD for excellent advice. I'll try to be more patient, watch my diet, and especially be careful to not taper too quickly.
Snoring…although you haven’t put on weight as such, you may find that there is more adipose fat around your neck …..that should reduce as you lower the steroids.
Like most things - depends on individual- but when the steroids stop affecting the way the fat is redistributed around your face/neck….so fairly low doses! Sorry if that’s not the reply you’d like 😊
These issues decrease with dose but above 10mg particularly the heart rate and seeing too many dawns are par for the course. The thing that upsets many is the fact that one can’t just carry on with life as per usual having been given relief from pain (if the dose is right). Your autoimmune activity is still running along underneath until you go into remission which means fatigue and muscles’ tolerance to strain is less than it was. So people might find that sweeping the yard like they did brings on pay back a day or two later or they flop with no energy. Watch for steroid induced energy that makes you think you can do things that perhaps you shouldn’t; some people get it others don’t. Listen to your body! Sounds like you’ve been on the dosing rollercoaster that bodies tend to hate, in the pursuit of zero Pred. You are not unusual to be left to your own devices with little guidance or given a schedule that is too optimistic. Play the long game. The snoring is probably as DL says the fat redistribution that occurs around the face, waist and around the neck. I didn’t put any weight on because I did carb lockdown from the start but I still got the steroid shape.
As Snazzy said, 40mg was a very high starting dose - did the GP explain why they started so high? Were you pain-free at 40mg? If so, when did the pain return?
How have you been reducing so far? To continue at 1/2mg a week isn't the best way of going about things because you are constantly changing your dose and some people find that difficult to cope with. Have you been reducing in weekly steps or less often in bigger steps?
Is the pain the entire 24 hours? Or is it there in the morning, improves after taking the pred and then comes back later in the day/night before the next dose is due?
The pain is greatest of course in the mornings. I split my dosage in half and take for example 6 mg in the AM and 6 mg in the PM. Initially, earlier this summer when I first started the prednisone I was taking the full dosage in the morning but by 4 am the next day I was wide awake and in pain since the dosage had all but worn off. So, my thinking was that by splitting it up 50% in the AM and 50% in the PM, I could reduce the amount of pain in the early morning hours. I think it has worked overall, but there are times where I wonder if I'm doing the right thing.
I'm also a bit confused when everyone mentions that our adrenal glands should be encouraged to start taking things over eventually and that they tend to have a morning routine of generating natural steroids. If that is really the case, I guess I'm wondering if that justifies a lesser amount of pred in the morning or not.
It sounds like you are saying 1/2 mg reduction per week is still to aggressive. Is that your viewpoint?
Thanks again for your input. All of this is very helpful.
Weekly is too often - we usually talk about 1/2mg per MONTH
The dose that needs to be reduced isn't the morning one - the pred level in the blood needs to be at its lowest at about midnight so the earlier in the day you can take your pred the better so it has fallen by late evening. A common recommended split dose is about 2/3 in the morning and the rest late enough in the day to make mornings better, But the ideal time to take pred for a good morning is 2-3am. The pain at 4am isn't really the previous day's dose wearing off, it is the time the new batch of inflammatory substances is shed in the body and starts the next round of inflammation - hence the 2-3am dosing working so well. The inflammation never gets started so the pred has less work to do.
When we recommend splitting the dose, it’s usually 2/3rds am:1/3rd evening.Whether you change to that or stay as you are, if you take the evening dose later in the evening you may find it’s enough to get you through to 6am. The cytokines which cause the inflammation which results in pain is shed around 4am.
As PMRpro has also advised, 0.5mg per week is too quick….that doesn’t give enough time to know it it’s enough before you reduce again…and if/when you flare as a result you don’t really know the dose you were last okay at. 0,5mg per month much better.
Wow. This is excellent information and it sounds like you have things down to a science here. It's no wonder I've felt a little bit under-educated on this from the start. I really didn't have a specific tapering plan that my GP and I had put together and it's been a bit strange modifying my own prescription based on my pain levels and overall feel for things.
I will take a serious shot at your advice regarding the 2/3 vs 1/3 ratios, the 2-3 am approach rather than dinner time, and the patient 1/2 mg per month rather than per week. I try to exercise 5-6 times a week for about 30 minutes and I'm pretty sure my diet isn't out of bounds for PMR.
But, back to my original question: Is it somewhat normal to feel the every-other-day type of pain, tightness, and deficit in the muscles along this tapering journey? Or should the effects of PMR be fairly absent along the way?
Your muscles are affected by the underlying illness, and although exercise is good, you do need to remember that your muscles take longer to recover than pre PMR.
It might be better to split your exercise into 2 lots of 15mins rather than 1 at 30 mins - and maybe mixing up the exercises so you are not overusing particular areas…if that makes sense? No repetitive circuit type exercise either.
Or maybe one days exercise, then next day just walking.
It’s all a bit if trial and error, until you sort out what’s best for you.
If you are still feeling the symptoms you describe every day, then it’s either too low a dose of steroids, or too much activity from you, or more likely a combination of both.
Couple of posts if you haven’t read might be useful - one from me, one from PMRpro -
Depends on the person - some have no notable PMR pain, others struggle ongoing. But as DL has already explained, your muscles aren't back to normal because you are on pred - it just manages the inflammation so it doesn't hurt as much while the underlying autoimmune disorder continues to chug along in the background, ;eaving you feeling as if you have permanent flu.
I suspect that the less inflammation you allow to develop in the first place, the fewer symptoms get to develop. I never did have much pain once I was on pred, but I think it is far better on the Lodotra I use here which you take before bed, it releases at 2am and I have no morning pain or stiffness at all and that does last all day.
And of course, overdoing it at any point will then result in pay-back. You have to build up activity slowly from a very low starting point so your muscles get into training again. It isn;t just fatigue where you need to know your limits - any form of exercise is the same,
Hi Dorset Lady. Can you clarify what you mean by evening here? I take 6 at 2-3 am and another 14 at 2pm. I feel not too stiff in the morning which eases quickly but wonder if I am getting it all the wrong way round. Steroid brain as they say. I have been stuck at 20 for about 5 months with occasional attempts to drop at .5 or 1 gram following your regime but seem to hit a wall when there is pain/inflammation and have to go back to 20 where I am fine. However am noticing stomach pains and GERD (the latter I had before this and as I think I have said elsewhere what I suspect is the cause of a lot of autoimmunity). Of course my interpretation of inflammatory response may not be anyone elses and this is where I fall down - it is inflammation or withdrawal?? And of course wondering what else the prednisolone is covering up...
What you are doing splitting the dose sounds fine - the earlier in the day you take the second dose of pred the better it tends to be getting to sleep. The second dose needs to be late enough so you don't get a return of pain before the next early hours dose is due.
But if you are struggling to reduce from 20mg I suspect you are either trying to do too much and that is causing sore muscles or it may not be PMR.
PMRpro has said what I would… and probably better!
But to add, no matter what tapering plan you are using…it’s only getting you from a) to b) more slowly and therefore hopefully easier than an ‘overnight’ drop .…..
if b) is too low it’s too low - no matter whether you get there in one day, 10 days or even 100 days!
Thank you PMRPro and Dorset Lady. The problem is that I don't feel tired so it is very hard to stop, I do try to have a "pyjama day" once a week (but sometimes not possible). I am also sleeping pretty well now, waking up for the 2.00 am dose and maybe a couple of loo visits and finding it easy to sleep again which wasn't the case last year. What confuses is me is that so many people on the forum seem to be in pain/inflammation. How does one distinguish between PMR pain and other pain that is presumably not affected by steroids?? For example I suddenly yesterday have aches in my calves, shoulders (especially left - like a trapped nerve) and thighs. is this from working on the computer for several hours yesterday? Today is when I do my second drop (per week) by 0.5mg but suspect I should give up again.....
Hi Dorset Lady. Thank you for some interesting pointers (PMRPro has also thought there might be some more going on in the pot as it were!). I didn't as far as I know have osteo arthritis when this all kicked off January 2020 but am aware of the possibility as get sudden twinges of what could be muscular/bone pain very occasionally. I have just taken some paracetamol now to see if it works on the stiffness/pain in the shoulders etc. . But then if you have osteo how on earth did you manage to juggle that with the steroids for the PMR??
I didn't have PMR...GCA alone. So no issues with hips , knees etc - originally in shoulders, but as cranial GCA it was mainly head issues. After a few weeks on steroids and brain adjusting to mono-sight, no headaches etc.
As I said, from 80mg down to low teens ALL OA pain masked, once it resurfaced took paracetamol until it got too bad and then a mixture of paracetamol and co-codamol until problem joints replaced... first one 2 years after remission of GCA.
Think this is beginning to happen to me DL. I know I have OA (had a knee replaced some years ago, and more recent x ray showed OA in shoulder). Had severe shoulder pain today and as an experiment took cocodamol- which produced some relief. Feel I’ll be asking for treatment once PMR eventually fades - I hope 🤞x
I had shoulder and (probably) knee OA way before GCA/Pred...and although you don't feel the pain when on the steroid unfortunately the disease invariably deteriorates without you realising. So when you get to level the steroids aren't masking it anymore, you get all the pain back!
You may find Flexiseq or CBD/Hemp ointment (the legal variety of course) helps the OA, and both okay to use with steroids.
Tbh I’m beginning to identify that my half forgotten OA pain is becoming a real issue again. I did a bit of light dusting yesterday and I can hardly move today - and it’s all in my right shoulder, elbow and wrist. I might have been tempted to up the pred, but actually that won’t help long term if it is, as I believe, OA.
I have to gird my loins for a battle with the GP to follow this up. I asked about shoulder replacement some years ago and my GP at the time (now left) literally laughed and said “Oh, we don’t do those!!” I haven’t seen my current GP for 18 months, she only communicates by phone and text - even when I first started pred it was a locum who took the decision. I remember her words exactly: “Right, I’m calling this. You can’t be left in pain like this. It has all the hallmarks of PMR and if the steroids don’t work, I stand to be corrected”. They worked….bless her 😊…..never seen or heard of her since, I think she was only at the surgery for a week.
Thank you PMRpro, you are so helpful, I don’t know how you do it x
How confusing for you DL. And thanks for your sharings. I'm feeling the pain/ache (how does one describe pain - everyone's experience is different and we interpret according to our own experience!) across the shoulders, back of the elbows and along the O/A joint and have a bit of a headache. Time for my 2.00pm dose! Have no bone excrescences. It feels inflammatory so better go back to 20 mgs. I thought Pred only worked with RA, not OA. Just so confused (not helped by steroid brain)! Not sure if there was much result from the paracetamol but only took 1 x 500mg tab.
It is confusing, Pred doesn’t work for OA per se, but if it’s high enough, it does have the habit of masking ALL pain, which is why doctors aren’t very keen on it, because it could be “hiding” other issues.
TBH I doubt if 1x500mg paracetamol would do much….
Thanks for your response DorsetLady. How much paracetamol would you suggest as a max? I am very unused to using painkillers - well until PMR came along! The pain/inflammatin/prickling seems to be radiating from the v points at the bottom of the shoulders on both sides. Some fizzing in the fingers first thing. Stiffness at the occiput. Some jaw ache, prickling on the face. All bearable. Perhaps I should whack in a couple more grams for a couple of days to put paid to the leaky bucket??
But as you have said in another reply that you suffer from stomach issues, just be careful.
But as stated in previous replies, paracetamol will not address the symptoms of PMR…..but if your symptoms are related to other issues it may well do…..a few days should give you some answers.
NSAIDs are the usual culprits but paracetmol is no innocent either longterm and at higher doses can cause gastric upset - no evidence for ulcers though.
"is this from working on the computer for several hours yesterday?"
Very possibly. But I consider reducing by 1/2mg per week is far too fast unless it is to get off pred altogether - your body never gets used to the dose before you change it again and even 1/2mg can be the difference between being OK and not. When you reduce at that sort of rate you may not realise the dose isn't enough for some time.
Once a week resting isn't ideal either - in the meantime you have done too much and not given yourself a chance to recover.
Hi PMR Pro. I am reducing just twice a week by .5 gram using very slow taper (have tried 1gram) but keep going up back up to the 20mg after about two to three weeks as things get tougher and I feel the inflamm or GERD last time. This is the first time that stiffness has crept in. So hard to remember to rest when not tired.
Has no clue (admits she has limited knowledge in the area but is a good responsible doctor who has been working in the practice for decades and I have apparently an appointment in 2 months time now with a rheumatologist but certainly haven't been given an appointment in Bath so far!! Will ring and urge tomorrow. Trouble is these GPs keep going on holiday...
I said that to my GP yesterday - she's off, she hopes to Sicily, the first week of Novemeber when the schools are off. She didn't mention though that she isn't there today or tomorrow - though to be fair that MAY be training, couldn't hear on the answering machine ...
Well the receptionist certainly didn't know. She wasn't on holiday but she wasn't in. She said she would get a message to her but that didn't work last time!! Most mysterious....
Hi, It took me six years to taper from 30mg to as good as zero without experiencing any flares. If I still had any pain at all of what you describe, then quite simply I didn’t try to reduce - just stayed at the same dose, or maybe plus 1mg, until any pains were all gone. Then I reduced by a small amount ; usually a half mg.You really do needs lots and lots of patience, and then more with pmr.
That is reassuring Charlie. I am most impressed. I am stuck on 20mgs since April/May and every time I try a little drop it doesn't work. I am not resting though but don't feel tired but no doubt will do if I do drop. Any tips?? And how did you cope on higher doses??
Hi,I actually had no issues at higher doses, and it was only when I got down to 10mg that I had to put on the brakes big time when tapering down.
As I am very non medical, I cannot offer you much advice if you are stuck at 20mg. My posts on the forum are almost always based on what happened to me, and, as pmr affects everyone differently, that is why I am reluctant to comment further. Maybe more rest, and tlc is in order? That made a big difference in my case.
Others may be along with suggestions, otherwise I guess it’s going back to your GP, or Rheumatologist.
Since I switched from the NICE reduction plan to DL’s Simple Taper 5-7 week plan, ignored my Rheumy and went with 10% reductions I’ve been living a normal life. I took/take the common sense approach, if I’m feeling good with no pain and I’ve gone at least 1 week at my current dose then I start week 1 of the next new dose. If I don’t feel quite right, then I either stop progress on the current taper and go back to the old dose for week or two and try again. Starting this Sunday I’ll be on week 5 at 2,5mg/d and that will be for 7 days, then I’ll start week 1 of going after 2.25mg/d as the new dose. Week 1 = New Dose on Sun, & Thurs and Old Dose (2.5) the other days. Each week I take the new dose an extra day.
Prednisone side affects…you kind of sound like my Rheumy, “We need to get you off Pred ASAP because it’s 100% chance you’ll have side affects, and please consider taking MTX as there is only a 5% chance of side affects and after 2-4 months it might allow you to be at a lower dose of Pred than without.” Give me a break. Everyone is different, some have different side affects than others and some are worse than others. I was started at 80mg in June 2019. Was bouncing off the walls. Other than that, my benchmark DEXA scan showed barely osteopenia (I take Ca, K2, D3 as a precaution), blood pressure increased a little and controlling that with lowest possible dose of BP med, ocular pressure in one eye increased - add 1 drop 2x/d of a med to manage that, already taking meds for GERD so I’ve taken non-enteric Pred with just water and even on an empty stomach - no issue. Of course at the dose I’m on now I’m no longer bouncing off the walls but even before I never had an issue with sleeping even when was splitting my dose and taking the second 1 hr before bedtime.
So, did I have flares? Yes. Due to dopey doctors having me reduce too fast and by too much. Suffered from change in cortisol levels and a few days later possibly some pain. Not since I slowed the rate of taper.
As to activity I didn’t change “What” I did, I changed the intensity and how long I did it. If you pay attention to your body’s feedback it doesn’t take a genius to know when to stop or slow down.
As tempted as I am to try to go more quickly toward zero (yesterday I had dug a shrub out of the ground and I was doing it at normal intensity for quite awhile), I felt fine during and today.🤷🏼♂️ But not going to. Figure 0.25mg drops every 5 - 7 weeks until new dose is zero and old dose is 0.25mg. And if I feel off, well I’ve already covered that.
yep i am now off pred and have been for 2 years with no more symptons. i did go down to what i felt comfortuble with. but on tapering i did have to go up and down a few times, then followed the go slow system. and when i got down to 2 mg i stayed on the the go slow longer, in other words instead of taking 1 week be for reduceing i took 2 weeks if that makes sence but good luck you will get there in the end x
Hi. I would not try and advise you on your journey (there are others on this site far better than me to do that) but I hope my experience helps (and all my plans for the treatment of my PMR are made from knowledge gleaned for the Sages on the website).
I was also diagnosed beginnning of June and was also very bad (CPR of 106) nad could not function wahtsoever. 25 mgs virtually ameliorated all the symptoms but GP put me on 30 mgs to see if we could clear them completely (which it didn't but made me feel wierd)! Been tapering since mid July and reducing at 2.5 mgs per two weeks (apart from when I was in Cornwall for two weeks so extended that one to three as I didn't want to reduce in the middle of my holiday). Now on 15 mgs and for the last week had some twinges in traps, deltiods, triceps mainly. Suffer from cramp now and then which is more of a nuisance than anythng else. The palms of my hands also tingle all the time. Not full blown pins and needles and so mild that most times I am not aware of it. No pain as such and I have a full range of motions just a bit of discomfort if I stress those muscles a bit. I did some shed painting last two days and it hasn't gotten any worse (may have even eased it a bit) so intending to carry on with the tapering as planned for the moment. From 15mgs I am going to use the DSNS plan (all planned on a spreadsheet) which works in 19nr 26 day cycles at no more than 10% reduction each time (71 weeks total). I may reduce the cycle initially to 21 days (57 weeks total). My GP was concerned at the length of time I would be on Pred with my plan until she realised that the plan which she had proposed from the NHS (NICE?) was 80 weeks!! I also split my dose and have been weaning myself off the evening one (now on 13 mgs/2 mgs), and have had no issue with nightime pain (touch wood). I take my morning dose at 4.45 a.m. and have also been extending that time gradually. Next week will take it to 5 a.m. and if OK will probably leave it there for the foreseeable. Hope you can sort out your issues. LBM1953
Hi Sagebrush1, here is my experience in case you may find it useful. I am happy to say that in my case steroids produced almost miraculous results. As soon as a possibility of PMR was mentioned (hence the steroids were on the horizon), and 3 months before the formal diagnosis following a PET CT scan and the start of steroid treatment, I corrected my diet (reduced carbs and completely eliminated sugar), started going to bed early, getting more sleep and introduced a gentle exercise regime as suggested by an osteopath whome I saw for what I thought was a back problem. I was put on one of standard NICE protocols, 15mg for 3 weeks, 12.5mg for 3 weeks, 10mg for 4 weeks which I managed, but 15mg to 12.5mg drop was brutal for a few days. The following reductions, all the way down to 6mg happened with 1 week of alternating doses and 4 weeks on the lower dose. After that, I tried DL method which worked well and as I got down to lower doses I switched to DSNS taper which I tailor as I need to. I stayed at 5mg for 6 weeks and I found reducing to 4.5mg was slow and difficult, but I have never increased a steroids dose and I feel completely normal all the time). These are precious days of my life and I don't want to be in pain. I am 22 months into my journey and currently reducing to 2.5mg. You need to find your way forward. Good luck.
Hi Safebrush1! I haven't read any responses but I am sure they all agreed that you are tapering too fast. I was diagnosed October 2019 and am still trying to get off prednisone. I am currently at 5.5 mg of pred and feeling really well I'm happy to say. I tried once before but was only able to get to 7.5 mg before my symptoms came back with a vengeance. The pred keeps your PMR inflammation under control. If you go too low on pred, the inflammation comes back and gets out of control forcing you to up your pred and start the whole thing over again. Best advice is to go very slow on your taper and you'll have a much better outcome.
Hi Sagebrush. I've read all and agree you are tapering too fast. you need to find the point at which you felt best. If close to where you are either stay at the dose you are on and take it easy while your body catches up and you are ok again or you may need to go up a little to find that place. Your body will tell you. As to how you feel. I've been on about as long as you. Muscle waste and weakness. My legs feel "slow" and stuffed. I have fluid build up for which I now have a 2 week course of diuretic . Whilst effective in increasing my ability to pee for Britain it hasn't much improved the legs working better. I have no pain and haven't sine being on pred. but I have the stiffness and other things. Your muscles can't and won't work as they used to and they won't be able to do what they used to but you can keep them healthy and mobile. I have no idea what you are doing or expecting to do so perhaps you can give more detail. try my mobility post sometime if your legs feel really bad. Good luck on the journey. I think you will need to slow the program somewhat.
Thanks cycli for your insights and experience. I have come to realize that I need to slow down on the tapering to make sure my body has adjusted properly. I am also realizing that moderate pain, stiffness, and muscle deficit will just be my realities along the journey.
I used to be able to consistently do a minimum of 50 regular push-ups each morning and typically 25 sit-ups or crunches. But I'm now at a point where even 2 or 3 pushups just are going to be my max for awhile and even those are shaky at best with pain and a total lack of self-confidence. I have been physically active my whole life including backpacking and peak-bagging out here in the Rocky Mountains in the western U.S.
I am very confused at why my body is attacking itself and this has given me a much greater appreciation for others who have various auto immune disorders. Yet, I feel like I have no room to complain when I stop to see what many others have to deal with on a daily basis that go way beyond my simple PMR challenges. This last summer's experience with PMR has been humbling to say the least and on top of it all, I have always despised even taking a simple ibuprofen for a headache.
So, being on prednisone to this degree each day, week, and month has been tough to accept. I now am realizing that I can't just "exercise my way out of it" or ignore the pain and drop the dosage down dramatically. The fear of needing to revisit higher dosages of the pred is what keeps me motivated to maintain a slow taper so I will be able to see progress and not any more of a relapse like I saw back in July. I'm about to drop from 11.5 mg to 11 mg tomorrow and will probably attempt to only drop by .5 mg every two weeks at the most (even though it would be tempting to cut that time in half).
All in all, I am thankful for whoever invented prednisone back in the 1950s because I don't know what I would have done back in June to lower the inflammation without it. I couldn't even get dressed without severe pain in the legs, arms, and shoulders. It was horrible.
Thanks again for your comments and everyone else's. I gain perspective as well as hope by reading both questions and answers from all who contribute to this website. My appreciation to the many who developed this venue in the first place and to all who continue to contribute positive observations and encouragement.
You are doing ok and have understood but we are all on this trip and you have it right to say it is humbling. It has taught me a good lesson in life, too late to stop this happening but worth learning. Finding our ultimate limits, which seems was the unconscious objective of most who seem to get this disease, helps us understand other peoples problems better. I've spent so much of my life pursuing my goals and driving my body to that objective it blindsided me to other peoples needs. Plenty of time now to see that and reflect. I don't regret anything I have done and am glad I did them but now there is a new path. I doubt I could change what happened anyway. it is probably an inevitable pathway for certain types like me. Just another hurdle to jump or crawl over in this case. Stay positive and build slowly. let me know how you progress. Sounds like you'll be back-packing sooner than I'll be cycling the way you are going, but be cautious.
one thing to add, there is nothing simple about about what you are going through with PMR or CGA other than the equation of now you have to play by its rules not yours. It changes us and our hopes. Welcome to the NEW normal
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