In Dec. it started in my shoulders, hippes and knees. pain all the time, night and day. On Jan 20th I could not walk. My wife helped me to see my P.D. Blood work on the same day and started on Apo-Prednisone 8 -5mg pills all at once in the morning (Jan.21) after a few hours 70% of my pain gone. I even put on my socks. Nice.
Jan. 22 she diagnosed me on having PMR now I am on eight pills a day, have appointment for the next 4 weeks one a week to see her and blood work.
I am a male 68 years old, physical fit, go to the gym 5 days a week. love camping, hiking, biking with my grandkids. With all my friends I am the most physical fit . Now this!
Today is Saturday, feel good but have problems with my knees, hard to walk, they say do some exiserce bur slowly, Do you think my knees may be damaged from RMR.
I have been reading alot on PMR, little scary, Is this going to change my life? will it ever go away? will it be years, days or months. I fear it will be years or until they put me in a pine box.
Looking forward working with all of yous.
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Chevypickup
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It probably WILL change your life for the moment - because to manage PMR best you have to accommodate it and often need to make some lifestyle changes. But it isn't the end of the world and you will learn to live with the gorilla in the house without waking it up:
Fighting it isn't advisable - it will almost always win! But there are many ways to make it less of a pest/pain and to avoid the downsides of pred - which, used properly, will give you your life back. And there are lots of people here to tell you their tricks.
Some exercise yes, but maybe not every day and not as much as previously. Think you probably need to give your knees a few more days to feel better.
PMR will change your life a little, but it’s all a matter of learning what you can do, and what you can’t.
Yes it will go away, except in a very few cases, but no one can say for sure how long you will have it - anywhere from 2-6 years - but the sooner you learn to live with it, the better your life will be.
The Pred only addresses the inflammation caused by the PMR, but not the PMR itself.
Have a look at this - it might give you info the usual sites don’t as it’s from a patients viewpoint - it might be a bit scary on first read, but there are a lot worse illnesses to have...and maybe let your wife read it so she understands what you are going through -
First thing, PMR is not life threatening just life changing and the more knowledge you gain the better for you. PMR= oxygen supply to your muscles is impaired...........so whatever you do, don't push your self with exercise. It must be gentle whilst you are in the early stages, listen to your body. The answer to how long, it how long is a piece of string, but in the male population it is generally up to two years. But that is the average and we are all different.
However, a little bit more info in your profile would help me and others to answer you, so can you please put, where you are from, ie USA, UK etc, what date diagnosed.
On the question of pills, we talk in milligrams here, eg prednisolone three milligrams, would be 3mg.
Please fill in the info and then we can help you more.
Hi , I am a white man, 68 years old. Live in Ontario. Have always been active and fit. Diagnosed in January. Meds have really helped. Prednisone 5 mg., 8 tablets every morning. Getting blood work done once a week. Hope this is helpful.
Fairly high introductory dose for just PMR. You may be able to come down fairly quickly to 20 mg, a more usual starting dose, but certainly after that don't taper by more than 10% at a time. So if your doctor says when you're at 20 your next reduction can be to 15, in fact a taper to 18 would be a lot better. It isn't slow if it works and one of the major difficulties patients encounter is tapering too fast which leads to flares and we then have to take more again. Better to taper very slowly and steadily. So when you do get to 20, and certainly by 15, you must ask your doctor for 1 mg tablets. It is easy enough to cut the 5 mg tablets to get 2.5 mg which allows some creative dosing, but 1 mg are really helpful, and essential when you go below 10 mg. The aim is to find a dose which is the lowest which continues to control the symptoms until PMR decides to go into remission. This can take several years. I am also in Canada. Initial dosing: four weeks at 15 mg, then tapering by 1 mg per week (this is considered fast) until 10, and after that I started the dead slow nearly stop taper plan where it takes between four and six weeks to taper by 1 mg but does help most of us avoid flares. However, I started in 2015, now on what I hope is the final approach to zero, so five years from time of diagnosis (more than a year after symptoms started) to today.
A quick primer for your first few weeks based on my experience (I am not a medical person):
If your doctor didn't give you calcium and D3 supplements, get some good ones over the counter. Ask your pharmacist. If you're in the US, get your doctor to write a prescription so your insurance covers the cost. (It can get pricey over time.) Check with your doc about dosages as other medications and other conditions might dictate more or less. Take your supplements at a different time of day than you take your pred. The calcium can interfere with the efficacy of pred, while taking calcium + D3 helps each work better. Try not to take your pred on an empty stomach. Eat some yogurt, oatmeal, a slice of whole grain bread, or take it with a meal that isn't spicy. Lots of people take it with breakfast. When I was on higher doses, I split my dose between late in the evening and early morning. Your mileage may vary, Chevy., but I found doing this cut way down on the heartburn, helped with the morning stiffness, and extended the length of my useful day.
Eat a healthy diet. Try not to put anything in your mouth that isn't chock full of protein, fiber, vitamins or minerals. Pred can change how we metabolize sugar and carbs (packing on the pounds), so go light on bread, cake, pie, cookies and other unnecessary carbs. I still eat potatoes and pasta and bread, but I halve the portions. Others cut them out altogether. (I'm one of those people who has no energy without carbs.) Dump the salt to avoid fluid retention, too (pred can raise your blood pressure). When I'm peckish, I grab some fruit and cheese or an apple with peanut butter. A little protein in your snacks kills the hunger. Try not to eat anything that comes in a can or a jar or a box unless it's used as a condiment or a spice or an occasional side dish/treat.
Get plenty of deep rest. Pred can interfere with your sleep patterns. Catch sleep when you can and for as long as you can, but make sure you don't fill the time you can't sleep with too much physical activity. Go find your comfortable chair, get a hot drink (without caffeine), read a book, listen to music, watch an old movie. Don't be afraid of napping if your body tells you it's time. You're sick, and rest is the best medicine.
Avoid stress. Accept that you have a condition that won't take your life, but it's going to take a long time to recover. If you're still working, you may have to make some adjustments depending on the demands of your job. Distance yourself from toxic people and situations. If you can't, change your attitude so they can't effect you in negative ways.
PMR is a vasculitis. That means that the inflammation that's causing the aches and pains are limiting the oxygen available to your muscles and organs, making us prone to injury. And while the pred is helping to move the inflammation along and suppressing additional production, it also make us more prone to injuring tendons, ligaments and muscles. Your exercise needs to be limited to retaining your range of motion. Maintaining strength and stamina will come later, when you've gotten further along. The last thing you want is to incur an injury that will only interfere with or complicate your recovery. As it is now, recovery from injury will take a lot longer.
I don't want to scare you, but PMR can progress to GCA. If you experience jaw pain while chewing, develop an unusual headache, or have any sight disturbances, don't wait to see if it will go away. Get to a critical care, ER, or A&E faciility and tell them you have PMR and are worried about GCA. Early intervention will save you sight and prevent stroke. You don't need to be afraid, just mindful.
Stay positive. Listen to your body. Do the things you enjoy, and quit before your body screams ENOUGH!. Skip the things you don't have to do. People on the site will tell you about their travels (some of their trips take them halfway around the world), their exercise routines and adventures (there's a mountain climber!), their walks and hikes and bike rides and boating. They play with their dogs and their grandchildren, garden paint and craft, sing and dance and work and everything. It takes some time to get there, but with care and rest and medication and a good diet, life can be as good as ever, even if somewhat different.
We're all on the journey together, and while our paths may be very different, we support one another, share our experiences, listen to our frustrations and disappointments, and celebrate our successes. Not glad you've got PMR, but glad you've joined us.
What a wonderful reply Good_Grief. I think this reply should be standard info for all those first diagnosed with PMR! Well done and I am sure we all appreciate the effort put into this informative response!
Wow. That’s so helpful and encouraging. Thank you. Just over 2 years for me and knees a real problem. Getting up stairs a real struggle. Your explanation is helpful about oxygen to muscles. 😊
"I fear it will be years or until they put me in a pine box" - rather a drastic thought if you are just starting an illness which is not deadly at all! Forgive me - but you just need to take a deep breath and read as much as you can about PMR. Being male you probably won't have such a hard time as most women - it seems men have an easier time for some reason, so take heart.
There is nearly always someone on the forum (day or night as we have 'friend' sufferers all over the world). If you are scared/feel alone - ask your questions - we've all been where you are now and have survived. There IS light at the end of the tunnel.
You have had a lot of valuable advice. Welcome - and I hope you have a reasonably short PMR 'journey'.
I'm going to remind you of something you already know.
Fighting a negative attitude and an unwanted circumstance at the same time will doom you to failure.
Look at everything you do, and everything you don't do, through the lens of how it will help improve your condition. Soon you'll begin to see how much control you actually do have over your day-to-day, and you'll see improvements over time.
Honestly, the best course of action is to take your pred and calcium and D3, adapt yourself to getting deep rest (if not normal sleep), gentle exercise to encourage keeping your range of motion, limiting salt, and adapting to a diet that lowers unnecessary carbs and sugars that don't also pack a big nutrient punch.
Let your body make the adjustment to your pred dosage for a while before adding or subtracting other things. And then if you want to experiment, add or subtract one thing at a time, and in small increments, so you can gauge whether what you're doing is helping or not. When you change too many variables at once, you can't tell what's working and what isn't. Keep things simple for a while.
There's a lot to learn yet about PMR, about how your PMR is like and unlike that of other people, about what's good for you in particular. There are a lot of tricks and tips you'll pick up from the forum, and a lot of solid scientific information.
Welcome Chevypickup! Great advice on this forum. You will find all the discussions helpful. Slow prednisone reduction, watch your diet and don’t try to do too much physically. Be aware of how you feel the day or two after you add some activity to your day and adjust accordingly. Rest when tired. Remember too that all this is temporary, that’s the good news!
I had a flair Feb 2019.Aft 9 years in remission and this time it affected my knees too.Had to wrap them in elastic bandages for about 6 weeks to walk.They did get better aft a few months and i walk everyday now.This disease takes time to recover but it will get better.Good luck.
I was on 8 tabs at first -40 mg of pred in Oct 18 - now on 5.5 - some aches and pains but I am 66 - and GP says if you haven’t any at this age you haven’t been trying. I do Pilates, Nordic walk and swim- It does change your life but try to find some positive less tiring hobbies - something new- GP says it takes as long as it takes - good luck
Hope this may help a little. I started on total of 40mg for three days then down to 20mg. After that I have been slowly tapering for last 13 months. I am now down to 4.5mg. I have learnt to be patient and taper very slowly. After 10mg daily dosage went to taper half mg each time. I am not back to way I was before PMR, however, I take each day and each very small improvement with gratitude
It already has changed your life, but the good news is, you get to decide to what degree, best advice is, take enough of the meds to make the pain manageable and then put your efforts into your mind set....my day starts and ends with an attitude of gratitude and it took me quite awhile to get there
Hi Chevypickup ... I note that you've received lots of good advice from several people I have liaised with over the last six years. Don't rush the steroid reduction programme and maintain the no more than 10% reduction especially when you start getting down to 10mg. Take your steroids first thing in the morning and rest for an hour or so to allow the Pred to work. When you're fatigued (usually in the afternoon) have a wee nap. The main thing is to listen to your body, maintain a daily log of your health & fitness, take Vitamin D, stick rigidly to the steroid reduction programme, and talk with people to seek advice.
I was an extremely fit and healthy 51 year old man when I was diagnosed with PMR in May 2013. I was an ex-PE teacher, senior Fire Officer, marathon runner (up to 60 miles per week) and extreme high altitude mountaineer. When I was diagnosed in 2013 I was due to run my 5th London Marathon, 15th Great North Run and attempt to climb Ama Dablam (beautiful summit in the Himalayas). All this got postponed as I started listening to my body. I was a bed patient, lost 3st (11st down 8st) in a month, couldn't lift my arms for several months etc.
I joined my local PMRGCAuk North East Support Group pmrgca.co.uk/content/home-page and received excellent support. I also had a strong network of friends and family which really helped. My recovery and rehabilitation included hydrotherapy, light physiotherapy, and gradually started stretching, core work, walking and light running (after 9 months). I followed my steroid reduction programme for 21 months.
You'll be pleased to hear there is light at the end of the tunnel when you enter the remission stage. I've since returned to the Himalayas (twice), Atlas Mountains (twice) and run several half marathons, plus my 250th parkrun this weekend! The main is not to rush your recovery ... listen to your body. PMR has made me a better person as I understand my body (and others), I'm more patient and humble.
I'm now the PMRGCAuk North East Support Group co-ordinator and would strongly recommend you visit the website for advice. We have also produced an excellent booklet which I'm more than happy to send you if you contact northeast@pmrgca.org.uk
All the best with your steroid reduction and recovery #runningwithasmileagain
Along with all the excellent advice already given, a very good book to read is Polymyalgia Rheumatica and Giant Cell Arteritis: A Survival Guide by Kate Gilbert. 🌻
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