I was diagnosed with Polymyalgia Rheumatica in August of 2022 so I’m now approaching my 2 year mark which will be August of 2024. I am blessed to have a good family doctor who diagnosed me quickly and referred me to an equally good rheumatologist. Now the only question is how to conquer the beast. Like a lot of you, I followed the protocol presented to me and was started on prednisone 15mg , tapered to 12.5 in about 2 weeks and since then have been tapering 1mg. a month. In the interim the doctor suggested my trying methotrexate which I absolutely hated and stopped after a month because I felt so much worse. I am now down to 2mg of Prednisone and the PMR definitely isn’t gone so some days everything is a chore with extreme fatigue, body aches and worst of all neuropathy in my wrist that can sometimes be excruciating.
The doctor has now suggested I try Hydroxychloroquine but my question is if PMR is supposed to be self limiting why do so many people report that while the prednisone certainly masked the symptoms it did not kill the inflammation or put the PMR into remission so we are left with trying other very serious drugs with noticeable side effects to get some relief.
Doesn’t anyone have the PMR just go away?
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fondofforest
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Hello, I'm so sorry to hear of your situation. You are a victim of the idea many doctors have that one has to taper pred at a set rate and be finished in a couple of years. As you've found out, PMR does not follow any rules. You obviously need more pred at the moment, and a much slower taper.
Btw, when referring to PMR as self-limiting, they seem to ignore that word "self". I think it means PMR goes when it goes. Whenever that might be.
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Thank you so much for this response I too believe I may have to just slow down the prednisone withdrawal a little and watch my symptoms to judge better where I am comfortable instead of being excited that I am almost finished taking the Prednisone. I was fairly comfortable at 3 and just this week went down to 4 and feel quite a difference.
Generally speaking it is much better to taper by half mg steps when below 10 mg, so you seem to have done well to taper as you have done. But "fairly comfortable" is not quite the same as feeling as good as you did when you first took pred. This is the aim, although we have to allow for other causes of aches and pains re-emerging if you have any other conditions, like osteoarthritis for example. Sometimes it can be hard to distinguish PMR from these other things. Do you have a decent supply of pred so that you can increase your dose? Standard advice is to add 5 mg to the dose where the flare occurs, stay there for a few days and then drop back down to a level just above where the flare occurred. You don't have to taper that extra 5, but I personally have felt more comfortable stepping down over a few days rather than dropping right back.
Morning, completely agree with HeronNS's thoughts. You've done well to get down to your low levels in less than two years, but the speed of that reduction has now caught up with you. Try an extra 5mg for a week and then if you were comfortable on 4mg drop to 4mg and taper down slowly from there. I use a DL 0.5mg five week taper, which works well for me. It is not set in stone though, listen to how your body feels, if all feels good start the next taper if it doesn't than extend by a week or so. There is still a lot happening and getting past the last few mg can often take longer than dropping down from the higher doses. At your low Pred dose I certainly don't see any advantage/reason for adding any other medication into the mix.
Thanks so much Bcol. That regimen makes a whole lot of sense. I’m not expecting no lingering effects of the PMR i just want to be in control and still able to function👍
You’ve had some good replies regards the Pred. I’ll just add that the Pred only “kills the inflammation “ by damping it down, it doesn’t do anything against the autoimmune process that tries to produce that inflammation. It is a safety net only while your body is attacking itself. Remission comes when the body decides it’s done, the Pred is just your defender from the gunfire, not the thing that goes in and gets rid of the army. These other drugs have been found to help reduce the amount of Pred needed to cope with the inflammation though the success of various drugs with different individuals varies.
The notion that PMR goes in 2 years is often incorrect for many and leads to unrealistic expectations of how low the Pred needs to be on the part of both the patient and quite a few rheumatologists. It sounds like you are on too low a dose to combat the inflammation being chucked out by your body right now. 2mg is not a high dose so a modest rise in dose and a slower reduction may mean you don’t need to take other heavy drugs.
You may have also reduced too fast for your adrenal activity to be reinstated fast enough. The adrenal glands don’t need to work on doses above 10mg but have to make up the cortisol shortfall once the Pred dose drops somewhere below 10mg. This can lead to deep fatigue and feeling generally hollow. Have you read about adrenal glands in the FAQ’s? It’s essential reading for single figure dosers!
Your response is text book the way it should be presented to people newly diagnosed with PMR. Luckily I had done my own research and know very well that the prednisone is not the cure it is only one step and that your body decides when it is ready to resume business as normal. Unfortunately humans tend to not have a lot of patience when it comes to not feeling well🥲
"Now the only question is how to conquer the beast"
You cannot conquer the beast - you can only learn to manage it and learn to live with it until it decides to go away, which it does for some 95% eventually. But it may not be in 2 years - it may take 10 years, no-one can know in advance. Half of patients need more than 6 years to get off pred.
You are never reducing relentlessly to zero - you start with a dose higher than you need and then taper or titrate the dose to find the lowest effective dose. It sounds as if your LED is under 5mg which is fine - it doesn't mean you won't get lower, just not yet. And at this level of dose, it is pointless adding in another drug, the potential side effects are worse than a low dose of pred.
Thanks so much PMRpro. The responses I have found here are so helpful and so reassuring. Anything like this that isn’t seen but certainly felt is hard for even the person suffering to comprehend!
For the vast majority of people PMR does go away.. but in it’s own time - not when the doctors think… and certainly not everyone gets through within 2 years..
Although you aren’t new, this might explain the illness for you rather than me re-write salient bits here-
Thank you everybody for taking the time to live posts I haven’t looked on here for several years I just read your posts Lovely Dorset lady years ago I had P MRI in 2011 coped fairly well with it except I didn’t know about increasing the dose for operations and things like that. But I ended up I think four years ago been discharged from rheumatology and referred to Endocrinology with adrenal insufficiency and went on to hydrocortisone. Going through a very rough time have a very stressful time with my hubby who am I carer my GP thinks it now they might be p.m.r returned because I do ache all over. I will write later because I shouldn’t be using the iPhone in bed. I have swapped between prednisolone and hydrocortisone and I always have kept a supply of prednisolone to take when I was really rough. For now I really just wanted to say thank you so much everyone for taking the time it makes such a difference to people like me. I wondered if anybody out there had gone from polymyalgia to adrenaline insufficiency. God bless you all. Very best wishes Mary. 😀
If you read right through Dorset Lady’s link at the bottom of her reply - Note 2 at the end contains her simple Taper Plan which I and many have used to very good effect. (Following the guideline of not attempting more than 10% reduction per 5 weeks - I’m now reducing by .5 mg which seems slow but remember the tortoise is a better bet than the hare!)
This is so extremely helpful you have no idea!! I kept questioning how much to taper and at what intervals so that I didn’t keep playing this never ending cycle of up and down!
Everyone is different when it comes to tapering and the length of the disease activity. But to be at 2mg in 2 years is really quite fast, at least for those who I’ve seen here. I am approaching 5 years. In 2 years I was under that magic 7mg where side effects of prednisone start to lessen. By 3 years I was under 5mg. I had covid and had to bump back up for a bit. And from there it’s been a much slower taper. I am often at a dose for 3-6 months before I am able to reduce any further. Honestly, if my doctors weren’t so difficult and afraid of prednisone, I would have just stayed at 2mg but they are challenging so I keep plugging away at 1/2mg or 1/4 mg at a time. I am at 1mg now but I can 100% tell that I cannot go lower yet. My aches and pains are just at the niggling point by evening or waking to the point I may even go back up 1/4mg. We’ll see. There is no point in suffering at this low dose. My doctors are shocked when I tell them that 1/2 or 1/4mg can make a difference. I don’t think they really believe me. In my opinion, there was absolutely no point in adding other drugs in the mix once I got below 5mg, though my doctors still push it. Those drugs have side effects of their own. You have good advice on dealing with where you are at but I thought another personal experience could give you some context for your own journey.
PMR and GCA go away for nearly everyone,. People who have recovered often leave the forum, though some stay to support others. The timescale issue is complicated; some recover within the year, for some it is the 'standard' two years, others three, others four. For a small minority it is longer.
The important perspective is that once you are 5mg or under you are into the dose considered non toxic which means it's not doing any major damage to your body, and the lower means it's not doing any at all. So when you stabilise a bit higher than you are now, you are still ok but less PMR symptoms. Win-win. Can't see any advantage in adding different meds now. You are actually doing well.
0.5 reductions under 5mg are essential, I believe, and I am a great supporter of 0.25 once you get to 3 or 2.5mg. This helps get the adrenals used to being active again (I think).
I have been on Pred for over four years and am just now reducing to one and a quarter tablets. I will stay there for about one month before trying to go down to one. Never really had a bad flare. Good luck with your journey
my question is.. as the tablets for pred are so tiny.. it’s not easy to reduce! I’ve been on 1.5 for some months niw and am trying to take 1.25 once a week . I have a cutter and can just manage to cut a 2.5 tablet.. in half. It looks so tiny it’s difficult to imagine it can have any effect?!?!
The only person who can tell you that is your pharmacist. But you don't have to cut the tablets, you can just slow down one of the slowed tapering approaches even further.
Sorry I don’t understand what you mean? Give me an example please! So I’m on 1.5. What would I take next? And how? They don’t make one and a quarter tablets!!! I thought taking half a 2.5 tablet was quite clever!!!
You can still reduce from 1.5mg to 1.25mg (as you say half a 2.5mg) … not sure what slow tapering plan you are using -but just repeat each stage, once, twice or however many times you need to.
Just means it takes longer to get from higher to lower dose- and is therefore easier on body.
Ivwas replying to pmr who suggested slowing down even further. Didn’t understand!
Am actually following your approach. But am not doing it every week as have some stress ahead. !!! So have started reducing to 1.25 last Sunday and today .. and will do same for 2 more weeks… then Sunday and Thursday as you suggested and onwards from there! Thanks. Still got symptoms.. adrenals perhaps? Low back pain.. sweats.. a bit.. bleary eyed.. dizzy.. now some indigestion
But no flares as I see it. Can lift my arms above my head no problem.
Left shoulder and left hand bit throbby.. apart from constant hot throbbing feet!!!! But that’s not pmr is it?! .. seeing a very well recommended physio tomorrow..
I know you were replying to PMRpro - and you can elongate any taper which is what she suggested.
My ultra long plan is just that -repeating each week twice… but as you are already doing similar then keep doing that.do long as you are reducing it really doesn’t matter how long it takes. That will help nudge adrenals as well.
DL has answered your question to me - we often answer questions to the other, I wouldn't say anything different to her explanation which is what you appear to be doing.
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In my opinion, there was absolutely no point in adding other drugs in the mix once I got below 5mg, though my doctors still push it. Those drugs have side effects of their own. You have good advice on dealing with where you are at but I thought another personal experience could give you some context for your own journey.
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