I'm on 15 mg of prednisone after recently been diagnosed with PMR. I tapered from 20 mg after about 3 weeks. I take the prednisone about 7 every morning and this allows me decent sleep at night. I've noticed a general sense of healing since taking the prednisone. Typically at 7 in the morning, I have pain at a level of 3-4 in all the normal muscle areas as well as wrists and hands and fingers. Particularly in the hands and fingers, I can sense the healing. I use this pain as a measuring stick on how to adjust diet, exercise, and rest. Could I also use this measuring stick as method to determine time to taper?
Just another thought....If I had to, I could live with this pain that I feel at 7 in the morning. I don't want to, but it's doable.
Hypothetically speaking would this pain level significantly be increased if I cut off prednisone cold turkey? I know that's not realistic, but just wondering thoughts of others how much more the pain level would be without prednisone indefinitely vs. without prednisone for 24 hours.
Hello, it’s great that you’re feeling a bit more yourself. The Pred is doing this bit and this is where it gets a bit confusing as to whether you feel better because your current dose is sufficient to deal with the inflammation put out by your autoimmune condition or your body has stopped attacking itself. However, pain does mean that there is some inflammation still and I think many people decide that if pain is doable it is worth less Pred. What nobody can say is that if you did tough it out, what else is the inflammation doing in the body? Your risk of large vessel vasculitis or GCA goes up but at which point this risk becomes too high in any one individual is impossible to say. I expect individual physical factors come in to play here. I’d say that apart from the risk of adrenal problems going cold turkey would be a bit too much of a gamble. I’m a GCA person but I’m sure a PMR person will be in soon to comment.
I don't think any of us will suggest you experiment and stop taking pred just like that. In the first place you've been on pred long enough you'll need to taper for your adrenals' sake, although if your PMR is gone that might go quickly. However I believe what you are experiencing is the miracle of pred. It's not like a headache tablet. You don't need more aspirin or whatever once the headache is gone, because it has gone. But pred isn't like that. It does not in fact heal the body processes which cause the pain of PMR. It is dealing with the symptom, the pain caused by the release of inflammatory cytokines which the body releases thinking it is helping you ward off an infection when in fact it's attacking your healthy tissues. I used this analogy a few days ago: PMR is like an underground fire. To stop the forest from burning down you have to keep dousing the area with water. If you stop the water before the fire has completely burnt out, it will flare up and cause more damage. At some point the fuel will be used up and the fire will go out of its own accord, but until then we have to be vigilant. There is no cure for PMR, but most of us will eventually achieve remission which is as good as a cure.
Excellent analogy. I get tired of trying to explain to friends and family what's going on with me. Seems no one gets it. I get responses like, 'take a hot bath', try rubbing your hands together to get the blood flowing', I wake up with stiff pain too', barometric pressure bothers me too', 'are you exercising', etc.
Think I'm going to copy/paste your response into an email for future reference.
Not quite sure what you’re getting at......those that have had a trial of pred and then stopped will have resurgence of symptoms, probably to the same level as pre-pred PDQ.
Read accounts of people who have reduced too far or too fast, or forgotten a day’s pred. There’s your answer.
At a guess, without pred you would be back to where you were pre-pred in very short order. There is no "healing", the pred has cured nothing - it is scooping out the daily dose of inflammation to leave you at a level that is bearable. Take it away and the bucket will overflow very quickly. Don't be lulled into a sense of false security.
I missed a single day's dose a few weeks ago because of a hospital admission and not having my particular pred with me. During the second 24 hours I felt the Tin Man feeling creeping up hour by hour and I am still waiting for the flare to subside back on my full and regular dose. It is a bit more complicated than that - but I have had a clear reminder of what active PMR that isn't well managed with pred feels like. I have had PMR for 15 years - yes, PMR counts as "self limiting" but that is for 95% of the population, the median duration of management with pred is 5.9 years, meaning there are some shorter, some longer journeys. And there is no way you can forecast who will be in which group - work has been done on that to see if there are criteria.
I had 5 years of PMR without pred, not out of choice. Nothing would induce me to go back there voluntarily. Add to the pain and disability the fact that unmanaged PMR is 7x more likely to progress to GCA - and then your choice is of high dose pred (at least 40mg/day and potentially 60 or even 80mg) or risk losing your sight irreversibly. If you are very lucky, it may only be in one eye but once one eye has gone, there is a 50/50 chance of the other going within 2 weeks. We regularly have people arrive on the forum who insist they will manage without pred - until they try.
I've been on pred 2.5 years. I resisted it when my GP diagnosed it. Went to Rheumy who diagnosed it and prescribed 10 mg pred. I reluctantly agreed and felt immediate relief from symptoms, so much so that I called my GP and apologized that I hadn't listened. I missed three weeks of relief by waiting. I am, however, confused by terminology on this forum. I had been told PMR sometimes disappears on its own, but this forum calls it remission, a term I associate with cancer. Does it disappear or does the prednisone put it in remission? Or is it the same with alternate terminology?
Autoimmune disorders are rarely cured - even though the underlying cause of PMR and GCA does usually burn out and disppear on its own, earning itself the term "self-limiting", the propensity to reactivate is felt to remain for the rest of your life. So it is said to have "gone into remission" rather than to have been cured. It is not that common for it to reactivate, except where maybe people have been lulled into a sense of false security and stop their pred too soon. Even 1mg can be enough to keep it at bay! But perhaps 1 in 10 develop a second episode years after the first has disappeared. PMR is more often seen for a second time although I also know of patients with GCA who have had a second bout. And one lady whose GCA disappeared in 2 years only to return as PMR some 4 years later.
Corticosteroids have no known effect on the actual disease process at any point - they merely mop up the inflammation created by the a/i disorder, reducing the inflammation/swelling and, as a result, the symptoms it causes. That is why if you stop the pred or go to too low a dose the symptoms return and there is no way of knowing if the disease process has died out except by being able to stop the pred without any return of symptoms.
Thanks for explaining this. It is my hope the PMR disappears, the GCA never materializes, and I can get on with a somewhat healthy lifestyle. I am on 2 a day and hope to be thoroughly off it by end of summer 2019.
Really give a big thanks for all the valuable input from all of you. Really, you folks are a great Blessing to me. You have no idea. I have a very stressful job and raising 3 kids as the sole provider. Every little thing I can do to improve my situation is a huge help.... I guess the question I was really getting at is:
How do you know your getting better? The fact that my hands feel generally better month to month make it feel as though there is a sense of healing going on and maybe not the prednisone talking.
Also, could you utilize this sense of healing to justify tapering? I would like to be able to use this method for tapering rather than using a generic equation developed by other people. Then again, this PMR is so difficult to gage, that's just what I've got to do.
Nope, I would never thinking about going cold turkey on prednisone. You guys have taught me better than that..
You don't really. The underlying a/i disorder is there and chugging along all the time - it may be less active, the dose of pred you are on be a more comfortable margin above what you need as minimum.
But what we tell you here is not prescriptive tapering - we tell you how to taper and listen to your body. You drop a small amount and listen - if that works you try another bit. This isn't "drop 1mg every month come what may, whether you have pain or symptoms". THAT is prescriptive.
The pred at 20 will be helping other inflammation too. As people taper they often find their knee problem flares up. Again that comes back to treating your body with respect. The knee issue hasn't gone so don't damage it more. Likewise your hands. Pred will be nibbling on that pain in a good way.
Sometimes if you have been at a dose for 4 to 6 weeks you just have to make a leap of faith, and not panic if you get steroid withdrawal the next few days. If after the withdrawal settles your pmr niggly bits start reminding you they are still there, for me its always my thighs that complain first, I go back to the old dose. I try again 2 to 4 weeks later and often it sticks that time. BUT I have never dropped by more than 1mg a month, and for many drops did 0.5mg and if it worked did 0.5mg 2 weeks later. I have been at 6mg since probably September. I view it as being minus 1 to 2mg of pred as it's below my "natural dose". If you are at 15mg then you are really only taking 7 to 8mg over what your body would produce. Sometimes it easier to think about it that way. Puts the brakes on a bit.
I think the answer to your question is to take shallow reductions and plan on sitting there for a while each time. I had a disasterous attempt at a taper ordered my by rheumy, going from 20mg to 15mg in one fell swoop, and that put me into a flare that lasted 5 months.
After that, I tool control of my own taper. I went from 20mg to 10mg by cutting by 1mg or .5mg depending on how I was feeling and what lay over the horizon regarding known things like work projects and holidays. I went up by .5 or 1 for a few days when a big storm was looming or when a big work project was approaching deadline, then dropped back to the previous level. When I caught a cold, went up 3 mg and sat there till it was gone, then resumed my taper at a bit faster pace until I reached the previous level, then resumed the old pattern. Getting from 10 to 5.5 has taken a bit longer. No drop has been more than .5mg, and I sat at each level for 4-6 weeks before dropping again. I timed each drop for Thursday so I only had to get through Friday before I could rest up on Saturday and Sunday.
Since I took control of my taper, I've had no flares, no injuries and few side effects. I should also mention that I split my dose 50% each morning and 50% each night, and this helped me get through the higher doses with fewer stomach troubles, only needing an OTC heartburn medication a few times. As I slipped below 10mg, I started losing the 7 lbs I had gained and lost the pred face, the pred belly and the hump. When I hit 15mg, I tapered off the morning dose, keeping the evening dose at 7.5mg until I was taking nothing n the mornings, then reduced from the remaining dose in the evening. I look and feel myself most of the time now, with a few aches and pains from the wet and cold spring we've had in New York, but not much else to complain about. my inflammation markers are either within normal or just above at this stage. I know that I'm holding my own against PMR by uisng the pred, and it's not done with me yet. So I'm sitting still where I'm at and will decide in July if I'm going to try dropping again. We'll see.
As they say, your mileage may vary, and lot of others on the site will share lots of other experiences - good and bad. But I think the main theme will be "slow and steady wins the race". You need to take enough pred to keep the inflammation under control, and that level will vary over time due to a host of factors. Eat well, rest well and take your vitamins.
That's goog Good Grief.. I will use you an example going forward. The Docs just seem to put you on some kind of generic taper and not even know how you feel. That's been my experience with them so far.
Well, I'm not a doctor and don't know what other health concerns you may have, or even if what worked for me will work for you. I'm just a fellow traveler hoping your journey is less painful and shorter that some of the rest of us have experienced.
Do let us know how you're getting on. We all learn from one another, here. And maybe the docs will start learning from us, too.
Do not cut off the Pred cold turkey now or at anytime.
It might be a nice idea to think that just because the pain you have now you could cope with that you are ready to start to taper , or even that the PMR may have miraculously left your body , but you are right you have been plagued by unrealistic pipe dreams in the night!
Pred is not a " cure " for PMR it just deals with the pain and stiffness that are the symptoms of the inflammation caused by PMR. There is no cure only ways to manage your body health and keep the pain at bay so that you can continue doing much of what you want to do with rests while PMR is with you.
PMR is a self limiting disease , but not in a few weeks , it's 2 -5 years on average , some have it much longer , you need to be patient I'm afraid . It doesn't mean you can't do alot of what you did before in that time , especially if you are already fit and only have PMR, just that you will flare if you don't taper sensibly and take more balanced rests.
If you try to go cold turkey or rapidly taper off it in the hope that you can cope from now on with other pain killers and get to business as usual , you will flare up , fall flat on your face and undo all the good work you have done in these early days and probably end up having to increase back up to 20 mg again.
You certainly won't be back on that bike as you'd like to.
This is more likely to happen if you allow things to progress by its natural course , taking your Pred , using a slow taper and maintaining muscle health as you go to make the journey easier with good diet , nutrients , lifestyle changes and moderate exercise.
There is no quick fix with PMR , it's your friend with a sting in the tail for quite a while , just like that annoying person that keeps sitting in the deck chair and chatting to you while you try to read a book.
If you want to get through PMR more smoothly , and prevent delays in getting back on your bike , keep on 15mg for a few more weeks and when you are sure that your pain is controlled ( and therefore your inflammation has moved from flare phase) then start the slow taper that is recommended by all those that have been there before.
Don't be encouraged to try to go to quickly by your GP either , the ABC pamphlet they all read does not work and also reduces your good work , brings on flares and stops you exercising and having quality of life ( in other words it's not healthy for you).
Sorry to say adjusting and accepting the PMR situation and having patience is the best thing you can do for your health right now.
Thanks, the doctors seem to want to put you on a generic taper, but listening to you guys, it's best to taper slowly and listen to the body... I can do that..
It’s a bit of trial and error, but use whatever you can ‘feel’ to know when to drop.
I keep an eye on how fast I can walk, it’s just one of those things that I used to illustrate to my GP how well I had reacted to pred. If my pace is above 20mins for a mile, then I’m not ‘loose’ enough or energetic enough for a drop. But that’s not my only criteria, hows my pain, stiffness, mood? What do I have to do this week coming? Am I relaxed or niggly? Do I feel as if my PMR and pred are equal and it could easily be unbalanced? Or am I in control of it just for the moment?
That's really cool. I suppose I am looking for that "measuring stick" that tells my body to take a leap of faith to start a slow taper. My Rheumy told me to cut from 15 to 10 mg starting June 1. I don't think I am ready for that. Like many of you guys and gals, I will need to learn when and how much to taper. Slow and easy taper..
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Yes you will have to stand up for yourself. You. Have had a few good papers. Rather than say they come from a forum, say collected from pmr/gcauk charity. Have a look at the charities structure so Dr understands the Dr are recognised experts. As long as you can get the pred to taper you need, that's all its about.
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that's a great idea. Having a dr tell me how to taper a month in advance doesn't seem logical at all
Both Dorset lady and PMR pro have written excellent, easy to follow slow tapering plans which you can download . My rheumy is happy for me to follow them .
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