Have been tapering and now at 2 mg. But have had three flareups this year. Several doctors, including specialist at Duke, don't seem to know enough about PMR to provide enough medication to treat the return of painful swelling. How have you dealt with this in communicating with your doctor? How long do you take higher dose before going back to taper off dose? I need major surgery and surgeon canceled because we can't get answers. Close to having to quit PT job because of flare.
I've tapered off twice but it doesn't make PMR go away. Does anyone know the confirmed reasoning for this recommendation in all the online references on PMR treatment?
Polymyalgia Rheumatica - Urgent need for information on prednisone dosage for PMR flares.
Question posted by adoptmeow on 20 June 2019
Last updated on 6 November 2019
10 Answers
Whiz Kid
6 Nov 2019
My PMR was treated initially with 25mg for one month, then halved for another month, and then off. Bad idea fatigue, deep fatigue set in. We then started two 2.5mg doses daily (following a healthy breakfast I like QUAKER oats cinnamon and apple daily. I over do the cinnamon as I believe it helps as an antitoxin.
I am now keeping a running spreadsheet tracking days of the week, average daily temperature, sun/no sun, hours of good sleep, activity level 1 to 10 (I am a really active guy, barometric pressure and moon phases (gravitational pull). When I get several months plotted I will then attempt to decipher any relating factors. I am retired mathematician so this data should provide some relational data, and can make some hypotheses on what makes good days and bad days.
I o not have much pain anymore, just leg weakness (and I used to be a wrestler in college). I lost about at least a third of my strength and muscle mass, but am building those up again. I am active daily a try to left fairly heavy objects. I work outside on my property and push myself often. One thing I've never done, but have now made it a partial ritual is to get a good 1 - 1½ hour daily nap. I seem to sleep around 9-10 hours at night, but some nights I awaken after 6-7 hours of restful sleep. I climb stairs daily in my home. I firmly believe that some environmental factors trigger the PMR from time-to-time.
My charting also keeps track on a c=scale of 1 - 10 (10 being top shape) on the charting matrix.
Perhaps in a couple of months I can share those data results. My expectation is that a good diet, and the above factors will lead to some healthy conclusion(s).graphical
drjeff2011
8 Sep 2019
It does seem that the tapering process is more art than science. I also went down to 2 mg before I had a flare-up. My MD suggested 4 mg which didn't help, so I doubled it to 8 mg and immediately improved. After a week or so I went down to 7 mg which is where I am now. Previously I had dropped about a mg per month. Relapses are definitely more common at the lower doses.
Very best wishes, Krista. Do not lose heart and always make the most of what's possible.
adoptmeow
8 Sep 2019
Thank you everyone for your responses. Hip replacement surgery this Wednesday. Swelling is flaring up even though I am on 10 mg AM and 5 mg PM. Finally was able to get communication between rheumatologist, hematologist, surgeon, pain mgmt, and PCP. Due to high risk for DVTs have to be on Lovenox for 3 months. May not be able to tolerate. Facing one day at a time and thankful that I will be able to walk properly and with less pain.
adoptmeow
13 Sep 2019
Thank you everyone for your responses. Hip replacement surgery was Wednesday. Swelling flared up several days before even though I was on 10 mg AM and 5 mg PM. Finally was able to get communication between rheumatologist, hematologist, surgeon, pain mgmt, and PCP. Due to high risk for DVTs have to be on Lovenox for 3 months. May not be able to tolerate. Facing one day at a time and thankful that I will be able to walk properly and with less pain.
jbsjbs1953
6 Sep 2019
I have been on 10mg prednisone for over 4 years in addition to Plaquenil for my PMR. My doctor listens and definitely works with me on my situation. She just added Cymbalta to my regimen and it has been a pleasant surprise.
I didn't think having PMR or being on prednisone would prevent having surgery to the best of my knowledge?
Logan120
7 Sep 2019
I had surgery under general anesthesia while I was on 2mg of prednisone and had no problem, typically surgeons want you to get off the drug for a week before surgery but accepted my low dose and everything went well... Don’t know if they would operate on a higher dose...
Gerhardfrank
6 Sep 2019
I would like to underscore comments made by Rosebud78. In my view PMR can be defeated! It can leave your body and never return. In fact, my doctor said it's more likely that PMR will not return once it leaves. Obviously the time it takes to leave varies depending on the individual (overall health, amount of exercise, eating habits, positive mental frame of mind, etc). I'm 79 years old, play golf 3 or 4 times per week, ride a bike indoor or outdoor, work in my yard and eat lots of sardines. Diagnosed with PMR in June '19, I started on prednisone at 10 mg, and am now on 5.5 mg after about 2.5 months of consistent tapering. I have had no side effects from the drug. Although not a diabetic, I read my blood sugar every other morning and am always less than 110 fasting. I take my blood pressure every 4th or 5th day and am around 140/75. Please be hopeful!!
rosebud78
6 Sep 2019
Way to stay positive Gerhardfrank! My Dad was diagnosed with PMR in his 50's but he only had it for 4 months. I heard it's not as common in men. He swears that the chiropractor helped but I'm not a believer. My Mom had a touch of it except her doctor called it frozen shoulder. She woke up one day and had a hard time to lift her arm to comb her hair. She said it lasted about 10 months. We have a lot of autoimmune problems in the family especially thyroid issues.
rosebud78
6 Sep 2019
I am 58 years old (not sure if that matters) I was diagnosed with PMR on 6/22/17 started out with 15mg of prednisone for 10 days then 10 mg for 3 weeks then started tapering down. Well, I can finally say that after 2 years of tapering down, I have been off all medication for 4 months. I may have an occasional day that I'm not as perky as usual but all in all, I am thrilled that I got to this point when I never thought I would. The key is definitely to not get off the prednisone too soon. I tend to be very active with yard work, exercise, etc. so sometimes when I feel like I'm getting run down, I listen to my body and get the rest that I need. Don't want the PMR to come back. Good luck!
adnoira
6 Sep 2019
Hi! I will tell all of you, doctors are lying. None of them knows how long this illness go on, nor how to manage prednisone. By experience, I can tell you this illness will never go away so take it easy, don't dispair. Prednisone is different on each of us. I was diagnosed on 2012, it will be 7 years on December. There are only two medications that work on PMR, methotrexate and prednisone. I did not tolerated methotrexate because of my stomach problems, I also have chronic gastritis and irritable colon. Prednisone it was. Taken with food does not hurt my stomach. I started on 55mg for two months, then they lowered to 20, then 25, then 10 where I stayed for most years. Last year I got down to 5mg without any recurrence or pain. First year was horrible, could hardly lift myself up from a chair. My internist suggested acupuncture and I went. Till today I have a monthly session of acupuncture and massage, this really helped me a lot, relaxed me and the pain went away.
The acupuncturist doctor said this illness gets bad with anxiety and I was myself very anxious, he also said he will stop cortisol production with the needles. Cortisol activates anxiety. You have to be relaxed and calm to beat this illness. Being on prednisone for 7 years is not easy. I broke 3 ribs coughing because of osteopenia. Reumathologist gave me Prolia injections for this. I had to go to the dentist, my teeth were getting loose and I thought I was going to lose them. I got pig bone implants on my gums, problem corrected. I got 56 pounds overweight, I still cannot loose them even on a diet and the last damage was I became diabetic type 2 two months ago. I don't care what the prednisone does to me as long as I can have a life with it, without pain and discomfort. I have been lowering it and got to 2.5mg but you see, I am also and asthma person and I got a cold and my asthma went bad so my pneumologist gave me prelone and medrol (both are cortisone). When the cold was gone and my meds retired, the horrible PMR pain came back running, I was only on 2.5 so I raised to 10mg, pain stopped and I stayed there for one month and then started going down again taking one day 10, one day 5 for a month and then I went down to 5. No pain, I keep on, pain? go back to 10. That is how you deal with it, only you know how much you need for the pain to vanish. I already gave you the tips for dealing with the side effects which are really bad but you will get over it. Exercise gives pain so I go to a physiatrist and he gives me controlled exercises which don't give me so much pain, with supervision. I hope you benefit from my experiences and good luck, God Bless you all.
Whiz Kid
6 Nov 2019
I was initially so devistated with this PMR that for 6 solid weeks I could not walk, needed assistance to go to the bathroom, etc. I slept in my leather recliner all that time. I also went from 217 to 188 in those six weeks. Lost at least a third of my muscle mass and I am/was a strong man of 73. Most folks always thought I was in my late 50's. I am now active, but get my naps in and get good sleep.
I take my last Prednisone at the end of November, so we'll see then was happens. My spreadsheet with then hopefully shed some light. I live in western SD in the pine trees, and we get snow and then it melts within a day or two. I am thinking the cold will be bed... mainly now I have a hard time holding a can of Pepsi. My left hand fingers are so succeptable to heat and cold now. I will be spending some of the winter months in AZ for its heat.
Whiz Kid
6 Nov 2019
I was initially so devistated with this PMR that for 6 solid weeks I could not walk, needed assistance to go to the bathroom, etc. I slept in my leather recliner all that time. I also went from 217 to 188 in those six weeks. Lost at least a third of my muscle mass and I am/was a strong man of 73. Most folks always thought I was in my late 50's. I am now active, but get my naps in and get good sleep.
I take my last Prednisone at the end of November, so we'll see then was happens. My spreadsheet with then hopefully shed some light. I live in western SD in the pine trees, and we get snow and then it melts within a day or two. I am thinking the cold will be bed... mainly now I have a hard time holding a can of Pepsi. My left hand fingers are so succeptable to heat and cold now. I will be spending some of the winter months in AZ for its heat.
Logan120
6 Sep 2019
I was diagnosed in May 2018 and started on 10mg prednisone... It took all my pain away in about 24 hours and I was able to function normally... My rheumatologist started to drop my dosage by 1mg per month right away and I was doing fine until I was taking 3mg per day... Went down as far as 1mg every other day and was then taken off completely... It has been 2 weeks prednisone free and my symptoms are all coming back, it is truly a trial and error journey and no one has any idea of when it will go away permanently, they all say, and I’ve been to 3 different doctors, that it takes 3 to 5 years, if true I have a long way to go but the key is to drop your dose very, very slowly...
tbcblues
20 June 2019
I have had PMR for 1 year and have had to "experiment" with the prednisone until I found a level that I could function with. I started out taking 20 mg per day and have gradually tapered down to 3 mg per day, but it's been a long process. I stayed on 5 mg/day for several months. I still wake up in the morning with some stiffness in my hands, but that's about it now. When I first got diagnosed I was in terrible pain and could hardly walk. Good luck with yours.
susan579
20 June 2019
Sorry you are going through this. There is a good face book group relating to PMR that I go on frequently. The people there usually respond in a positive and helpful way. I know I have seen many that ask your same question. You may want to check that out. From what I read, you may want to go back up to 5 mg - if that controls your symptoms, stay there for at least a month, then start tapering down again.
Doctors are hell bent on getting everyone off Pred quickly, but when it's the only thing that works, everyone finds that if you taper too quickly, symptoms just return and then you have to increase again for a little while. So taper very slowly.
I have been on steroids for about 1.5 years, a low-ish dose, but recently when I tried to taper, the same thing happened. I'm stuck between 6.5 and 7 mg daily and so far can't get below that.
leeablee
20 June 2019
I haven't found anybody, including two rheumatologists, who really knows what to do with my PMR.
If anyone out there has found someone, I'd travel. There doesn't seem to be any literature that shows anything but prednisone works. I stayed on prednisone 3mg a day for a year. Then my rheumatologist put me on methotrexate and then on leflunomide. Nothing controls my symptoms except prednisone. I've been struggling with this for nearly four years. I don't think it goes away, The only advice I really have is that you find a doctor who will listen to you and work with that doctor. The taper has to be very slow and you need someone to keep prescribing as they work with your symptoms.
Related topics
giant cell arteritis, polymyalgia rheumatica, prednisone, tapering
Further information
- Prednisone uses and safety info
- Prednisone prescribing info & package insert (for Health Professionals)
- Side effects of Prednisone (detailed)
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