It only took 7 years. Here is approximate timeline...
Dec 19,2015 Started at 15mg
Jan 13,2016 started tapper to 12.5mg, after a week I split dose and took half at 1AM and the rest in the morning. Splitting dose worked wonders for me, and I was able to quickly start next taper
Jan 28, 2016 Started taper to 10mg
Feb 24, 2016 Started taper to 9mg
March 24, 2016 Started taper to 8mg
April 27, 2016 Started taper to 7.5mg - Switched to 0.5mg steps from now on
May 24, 2016 Started taper to 7.0mg
June 20, 2016 Started taper to 6.5mg
July 20, 2016 Started taper to 6.0mg
Aug 19, 2016 Started taper to 5.5mg
Sep 20, 2016 Started taper to 5.0mg
I attempted to go to 4.5mg, but had minor flare and went back to 5mg. At that time I read a study that some Drs kept their patients at 10mg for longer periods ( up to a year) and that it reduced chances of relapse, so I decided that I will stay at 5mg at least for 6 months
May 01, 2017 Started taper to 4.5mg...
For next 5 years I was trying to reduce, but different issues, mostly related to inflammation of connective tissues in my knee or hand pain was holding me back. It became obvious that it is better to keep my dose in 3-5mg range until things sort out rather then risk full blown flare and need to go up to starting dose.
EDIT: I took the last 0.5mg dose on December 15, 2022.
I kept track of how much pred I have taken over 7 years and the total is 8852.5mg, almost half of that in the first year
2016 - 3036mg,
2017 - 1625mg
2018 - 1453.5mg
2019 - 913.5mg
2020 - 846.5mg
2021 - 449.5mg
2022 - 313.5mg
Before PMR I was very fit and active doing occasional triathlon here and there. When PMR hit me, I needed help to get out of bad, but within several months I went gently back to training and luckily I was back in shape within one year at pre-PMR level. There is still that morning stiffness and muscles don't recover as quickly as before, but it is hard to say if it is from PMR or aging :).
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I can feel sometimes lack of energy and after good exercise session I need to take nap to recover, but who knows if it is age or PMR...7 years is a long time.
Thanks so much Nicola ( like the bird BTW :-D) I have very similar experience. Some interval were secondary to orthopedic surgeries and trials of a host of "prednisone sparing /complementary prescriptions" working with my rheumatologist. The metabolic challenges of fatigue and adrenal coaxing to come back "on line" has / is a challenge. Currently alternating days of 1 /2 mg of prednisone is where I am at now. Historically over the years I have tried so many approaches I too have had to rely on journaling consistent record keeping to prevenient me from reinventing the wheel throughout the years. Yes , in the meantime the months and years have elapsed ;-/. This group continues to inspire me to hang in there and be defifinity be cognizant of the many factors of my personal physiology , mind set and stressors. Thanks for posting
thank you for this detailed post! So happy for you. Hope it lasts. I am almost there... and signed up for a super sprint triathlon in Aug. fingers crossed. Nearly did the longer but thought why? take it slow!! My story is very similar to yours. I have kept my fitness throughout PMR.. gained some weight and slowed down a bit...but feel I can get it back. But of course AGING takes its toll!! Good luck to you!!
Good for you! The longest one I have done was "Olympic distance". I have no problem with swim or bike section, but running is not my strong skill. I never gained any weight during PMR, in fact I lost some mostly muscles in my legs, so I am trying to recover them.
I was a DNF with a half iron man did the swim then 55 mile bike and then said the heck with a 13.1 mile run. haha. so now I can say I did a half aquabikeman! I love triathlons. this is super short. but at least I have myself back in the game!
It is hard to even think about just running 13 miles (for me). I have no problem with swim part , in fact my usual swim now is longer then that ( ~2.5k in 60-65min); biking 90Km would be a stretch at my age, and probably would take me 4hrs or so, but there is no way I would have energy for run at the end.
I don't participate in events any more but I still swim at least 1/week and bike 2-3 times ( although I prefer mountain biking over road).
Thank you! It really is important not to be lulled into a false sense of security. I know people where it took 4 or 5 months for the inflammation to build up enough to feel it. I'm not being pessimistic - just realistic on the basis of experience.
I am very careful because I have seen that some had to go back on pred after several months. I hope that my very slow tapper will prevent it. I was actually on 0.5mg back in June last year letting my body to adjust to low dose, before tapering down to zero. In spite of all that careful reduction, I can feel difference in how my muscles react to increase in load and how long it takes to recover. To be honest, I felt 25 years younger when I was at 5-6mg, so I know that adrenals are still catching up .
I say so often - it doesn't matter how slowly you go - that very last step is the worst because you can't know if the disease is still very slightly active. If only there was a marker besides the return of symptoms.
Well done, and hopefully you will be able to stay Pred free. I think one of the things that is highlighted in this post is that PMR hits different people in completely different ways, with some it can become extremely debilitating, frustrating and life changing, whilst others are, fairly quickly, able to continue with their lives pretty much as they were, with few or very minor changes. I'm not sure how your Pred total, over six years, would compare with others but I've used over 7,500mg over 2,5years with at least a year to go, and would think there are many more here who have taken a lot more, no idea whether that is relevant to anything. It's a very strange old disease but then I guess we live in a very strange old world.
I think I am on the low side of how much pred I took in total in spite that I was taking it for 7 years. After first couple of years I was most of the time below 3-4 mg dose.
Yes you are pretty low on Pred- PMRpro can knock that into a cocked hat….and my 4 & half years for GCA, amounted to just shy of 20,000mg… but I’m still walking talking and thinking despite what many doctors warn….
oh well done! I’m still stuck on 2mgs after a similar period to yours. Rheumatologist says not to worry about it too much as it’s a very low dose. I was a rower and a runner. I tried to keep running after getting PMR but found my breathing was a problem and I’d get very tired after. I miss it. Continued good health to you.
Thanks for highlighting there is light at the end of the tunnel even if it is a very long tunnel. It can be very dark in the middle section but hopefully all of us here will see that chink of light eventually. Wishing you a long and PMR free life.
You and I have very different experiences. PMR ...but mainnly the steroids have devastated my life. I have steroid induced muscle myopathy. I work almost full-time (online) and have not taken one whole day off work. I have struggled through every day for the past 3 years...and adrenal insufficiency has added to the daily difficulties in the past year or so. My work is very absorbing but the moment I stop, I am struggling with weakness. You have been very fortunate...sadly mental attitude doesn't combat muscle weakness.
Perhaps working online involved a lot of sitting and little exercise. If I sit an hour or more I feel it. I started several months ago to increase my activity slowly. I did feel a lot better provided I didn’t overdo. Despite being on 8.5 mgm now doung pulmonary rehab I can walk the treadmill 20 min. Exercise is the key to helping those muscles. I am proof of that. Age 80 on oxygen for restrictive scoliosis.
Sadly, it is not as simple as that for everyone, for some this disease hits really hard, often coupled with the very detrimental side effects of the medication. Just mentally accepting that you have PMR/GCA doesn't necessarily mean that you will be able to get on with a relatively normal, slightly modified life. For those of us that can we are very grateful, but there are many, many here who would love to be in that situation but for whom it is not a possibility.
Thank you for your understanding. I try to do some exercise every hour...it might have stopped further deterioration but has not improved the muscle myopathy. The impact of PMR and that of the steroids is very individual. The thing that is truly wonderful about this forum is the profound understanding that one size does not fit all ( a view that too many of the medical profession have).
If I ever manage to get off pred, I'll look forward to all this amazing exercise, running, swimming, cycling etc.. I couldn't do it before!!! Well done you.
Congratulations!!!!I too after 7 years am prednisone free. Last dose January 13th. Never had a flare but unlike you even though I kept up my swimming and cut out carbs I gained 60 lbs. I've lost 30 but more to go.
I'm having problems with my adrenal glands, they are truly sputtering but seeing a specialist.
I envy you having close to the same energy level. I hope mine comes back.
Not regularl fatigue it's extreme. It takes energy just to shower, do anything. I also had diarrhea, vomiting. With me I never and I mean never vomited but I constantly felt like it. My sleep was worse than ever even on 25mg which I thought bad this was worse.I truly felt I was on deaths door but I kept trodding and ate foods and supplements that are supposed to help.
I feel better but only 50% and I've been in insufficiency for 1yr but I believe I'm turning a corner.😆
Trust me after 7.5 years no flares just using DSM I think I'm getting there.
I've been at zero since January 2023.
I could not work with my pmr like some who can however I tried to stay active but pmr truly slowed me to a crawl. A new me, no longer A type. Lol
Hang in there. Everyone's journey is a little different so don't dispare. I was the one who got every side effect you could.
Congratulations on your journey. But I urge you to have a synacthen test to identify whether and by how much your adrenal glands have been affected by long use of pred. I was on it for 8 years and had no adrenal function at all by the time I asked (!) for the test...was put on hydrocortisone instead - a whole new set of problems!
I began to feel even more fatigued than usual. It got gradually worse and worse over a year or so and I started to research a bit myself - found out that I should have been offered a short synacthen test after approx 8 years on prednisolone, to check on the functional state of my adrenals - the fatigue was the alarm call.
what is a whole new set of problems? Just curious as I am switching over to hydrocortisone next week. I am down to 5mg of prednisone (again). I am seeing an endocrinologist now. Thanks.
Hi - in reality there are only two - the first is that the dose of hydrocortisone (25mg daily split 15, 5 and 5) I was given was inadequate. I was ok in the morning but by midday energy levels almost at zero., so my GP raised the midday dose to 10mg, which just about keeps me going till 4pm..the second is the terrible amount if weught I have put on since being on it - approx 1.5 st - none of my clothes fit properly and its making me depressed. All exacerbated by the fact that its 14 months since I've had any contact with the consultant....I have a phone call appointment with him at the end of the month - he will need to hold the phone 6 inches from his ear....
Well done to you, I was on Prednisone a few years ago, and like you got off it eventually, I did the same, but with the advice of my Rhumy doctor. I had put a lot of weight on my face, but I have been off it for about 3 years now.
well done you! It took me 6 years to finally quit but what a feeling it was. Just to say that it took me around another 6 months to regain some sort of fitness. I tried just about everything and in the end it was the gym that did the trick slowly but surely. Ongoing fatigue was one of the main issues but I’ve now been in remission for 6+ years and life is good. So again congratulations 👏 Maureen
Hi there. I was diagnosed on Dec. 14th after struggling beyond any pain I have ever endured - hips, knees, shoulders and just getting out of bed or off the toilet or tying my shoes. I had no idea what was wrong with me, but I waited patiently for my internist appt. and after blood tests and xrays, he felt 99% sure it was PMR. I read all the symptoms and I had them all including scalp/hair pain when I tried to comb my hair. I am writing to you as my Rheumatologist wanted to hit it hard at 20 mgs. and it has done the job. The pain is all but gone after only 1 day, and I started going to the gym riding the cycle and then weights. I feel better afterwards but I wonder if weights are ok. I have been active all my life and only 2 months prior to the diagnosis I was walking 3-4 miles a day. But it is winter in Montana and that is no longer an option. My muscles have attrophied and at 71, it is hard to get them back. I am struggling with huge sugar cravings (and I failed to mention I am pre-diabetic and on Metformin), but I wish I could kick the sugar cravings and keep any weight off. I can't find anything on what exercise is best with this disease that is slightly aerobic and helpful. I also cannot figure out what it best to eat - I have to watch carbs and sugar for sure. But anything else to avoid? I also feel some sadness as all I wanted to do when I retired was to travel and hike. And now this. But what a wonderful group of people on this support group.
I was diagnosed with PMR in April, 2022. Started on 5mg of Pred and felt great. Started the slow taper about six weeks ago and continued to feel great until I hit the 4mg mark for a week, then noticed the pain and stiffness increasing so now I'm thinking I need to increase to 4 1/2 daily or every other day... Any comments or advice?
You have started on very low dose to begin with. I think it is beneficial to stay longer at that dose (4-5) for several months and then give it a try again. Everyone is unique, and you have to find what works for you. Sometimes just changing the time of the day when you take meds makes a big difference. Naturally body has highest cortisol levels early in the morning, so ideal time to take non-coated prednisone is about 1-2AM. It takes about 2 hours to be processed , which gives you high blood concentration early int he morning.
Down on 2 but worry about decreasing further . Last year I thought I had managed to go down to zero but it only lasted a week and I needed to go back to 3 …. Now I am on 2 and I am managing ok .
I'm surprised to hear of another athlete with PMR. Our support group has members who were long distance cyclists, mountaineers, marathon runners etc. prior to developing PMR.Fingers crossed you'll stay pred-free! I've just had my first week on 1mg.
I think there are lots of athletes with PMR. on these pages... I ran 3 marathons and maybe 15 triathlons. In fact did the last one at age 70 olympic distance. then a month later after bike accident got PMR. now down to 2mg. 5 years later. and signed up for a sprint tri in August. short and sweet but a new beginning!! )now to train!!
How do I get to that life? I am 71 and don't want my last years to be with this. My dr. wanted to hit it hard rather than low doses over long period of time. So I am at 20 mgs prednisone since diagnosis Dec. 14, 2022. I want my life back after giving up so much during Covid (no travel and isolation). I retired 1 year ago and what caused my PMR was selling our house in July 2022, and having 2 months to pack or toss 40 years of living in S. CA. I thought we would rent something and move out of CA after testing a few places. But little did I know my timing was horrible. I was up til 2 am everynight looking for a place that would work for us and take our little dog. Finally I found our favorite vacation place in Montana and thought we would test drive winter here. We love the summer, spring and fall. But wow - winter is rough and then in Oct. this debillitating pain hit and I had no idea what was wrong. Finally I saw a dr. who really listened to my symptoms (hips, shoulders, knees, and weakness). I loved hiking prior and have always worked out at a gym. That completely stopped until I was put on prednisone 20 mgs. on Dec. 14th. I woke up the next morning and felt almost 90% reduction in pain. But mentally I have a ways to go.......so tired. Is cold weather really taxing for PMR? If so, we will have to look for warmer weather place to live. Is it all right to do weight lifting and cycling with PMR? I am craving and indulging in sugar which I know is bad for me. I have pre-diabetes but have kept it my A1C at 5.3. But nothing is stopping the cravings for sugar. Help!!!
Certainly had a rough time….sorry to hear that. Cold weather is not good for the body for most most people with or without PMR - has to work a lot harder to function. Some Rheumatologist suggest that patients don’t try and reduce during the hardest of the winter months.
Cycling is probably okay so long as you don’t do too much at any one time, but weight training may be more difficult, your are doing repetitive movements with weakened muscles - something your PMR won’t like. But I’m sure there are other things you can do - and you will get back to a more normal life in due course.
Acceptance is difficult at the beginning, but you will get through it - perhaps have a look at this link for general info -
"My dr. wanted to hit it hard rather than low doses over long period of time."
Unfortunately your doctor doesn't appear to understand the way PMR works, It is an autoimmune disorder which causes inflammation and that is what causes the symptoms. The autoimmune disorder is chronic - it continues for a long time, usually at least 1 to 2 years, and as long as it is active it will need some pred to manage that inflammation. The pred cures nothing - it has no effect on the actual disease process. It is a management strategy to allow a better quality of life in the meantime. You start at a higher dose to clear out the inflammation that has accumulated and then you taper the dose of pred, a process also known as titration, to find the lowest effective dose for YOU, no two people have the same experience. But usually it is lowish, well under 10mg and varies over time, usually falling slowly until eventually the a/i part of the illness burns out and goes into remission and then, only then, can you get off pred. Being on a low dose long term is the normal and usual way to manage it. "Hitting it hard" at the gets you on the path to tapering quicker maybe, but it won't change how long it lasts.
The best way to deal with the sugar cravings is to cut your carbs drastically - it doesn't work 100% but it does help a lot. Pred changes how your body processes sugar and triggers the random release of glucose into the blood stream from body stores - that triggers insulin which sends the BS level crashing and you crave sugar to bring it back to normal. Then you add in eating carbs which does the same. You can't control the pred effect but you can control what you put in your mouth which adds to it, It also helps reduce weight gain and even helps you lose weight while on pred. It can be done but you do need discipline. Cut processed carbs and added sugar - no baked goods, cake, desserts, rice, pasta, root veg. It works - lots of us on here have managed weight and BS levels for years.
I live in the Alps and it is pretty cold here over the winter - I don't really find it makes the PMR worse though it often makes reducing harder. Wind and damp are far worse for me than low temps - though I'm talking about freezing and down to -10C overnight, 32-14F, these days, it used to be much colder. Not Montana winter levels which probably aren't ideal for PMR!
And PS - if you want a lot of advice, start a new post. Most people won;t be notified of this one in the middle of a thread, estellemac, DL and I and that's about it
Between DorsetLady and PMRpro most of your questions should be covered. I will expand on exercise. Mild aerobic activity like biking, walking ,swimming, etc. helped me a lot to relax muscles and also maintain muscle mass. Any strength exercise ( weights or HIIT) will do more damage then good, at least at this point of your journey, When you get to lower dose (less then 4-5mg) then maybe strength training is an option.
Thank you so much. I was so worried about losing muscle mass (already significantly dropped) but weights seem to be hurting my shoulders. So one more thing to give up. I feel better after recumbent bicycling so I guess that is it for now. What type of damage would weights do at this stage? So worried about bones…..
Hi, nothing really to add to the advice and comments from DL and pro. Acceptance of a long term systemic disease, that will probably have some effect on your life style is the first step and then find out what works for you. Walking the dog should be fine and is something that kept me going through Covid and PMR. However patience is the watchword and don't try and rush it, as already explained, Pred is not a cure but just a management strategy to control the inflammation. Lots of information in FAQ's for when you have a quiet moment and want something to read. Always someone here so don't hesitate to ask questions in a new thread.
Congratulations! Your story sounds just like mine. I was diagnosed March 2016 and I'm now on 1.75 mg Prednisone. I wish you well may you be able to stay Pred free.
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But you have Meg xxx
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