Hi, I'm recently diagnosed with PMR about a month ago. Fairly classic signs...woke up shoulders aching and upper thighs. Felt like I'd walked a hundred miles carrying a backpack. Symptoms didn't go away...much stiffness, one frozen shoulder and also fatigue.
I'm 51, have been fairy fit...jogging 2 miles twice a week, a bit of cycling and swimming. Quite robust, though have had 2 years of much emotional turmoil with various severe family illnesses and a bereavement. Thought everything was getting on an even keel again and now feel a bit of a physical wreck.
From these posts I can see that everyone's experience of PMR is very different, and some are in severe pain and greatly restricted mobility.
I'm at the lower end of the pain and restricted range, at the moment, at least. I can walk, drive, get dressed etc, but am in constant low grade muscle stiffness and pain...as if I've run ten marathons. The pain waxes ands wanes.
I have a prescription for preds but am reluctant because of side effects and I'm wondering if I can 'wait it out' by diet and lifestyle. Has anyone successfully done this?
I'm probably just coming to terms with having a crappy illness after a life of good health.
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Daisyfield
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We appreciate that taking that first dose of pred is a big step. I had my son on standby in case I collapsed 😂 Couldn’t wait to take the second dose though!
You can wait it out until you’re in great pain and severely restricted mobility if you like, but can you be sure what the uncontrolled inflammation is doing to your body? Untreated PMR is more likely to progress to GCA, then you’ll have absolutely no choice but to take pred at HIGH doses, or potentially go blind.
Many have come via the forum with a wait and see plan..... not one stayed off pred for long. Dr’s basically hate pred, no sooner are you on it than they’ll try to hurry you off it, so they must think you need it or they’d prescribe 101 alternatives!
Have a cup of tea, take a deep breath, and take your first pill.....pred is not the baddie here, PMR is.
Thank you for the reply...seems like it is the course of action...there is some relief knowing that the majority of cases are self limiting...it's just coming to terms with a different lifestyle from now on.
Yes it is different, but that doesn’t mean you can’t still enjoy it...or the things you do...just in a slightly slower lane than before!
Some patients are undiagnosed for a long time, 18months in my case, and I, for one, would never want to go through that pain and debilitation again.
Agree Pred has some nasty side effects, but doesn’t mean you will get them, apart from chubby checks which seem to be universal - but a small price to pay in the great scheme of things.
Hi DL, I consider myself very lucky as I didn't get chubby cheeks or chubby anything! But the higher doses of pred did make me hyperactive! Now down to 4.5 and slowly tapering to 4....But in the pain or pred debate then pred wins every time as far as I'm concerned!
I went undiagnosed for over a year. My symptoms were similar to yours earlier on but progressively got worse. I was diagnosed in February and refused prednisone and decided I'd wait it out. I went on a very strict anti inflammation diet, took CBD oil, meditated regularly. but continued to get worse. Like you, I could function pretty well until about Mid March, then I couldn't sit in a car, get out of bed, go up and down stairs, or get on the floor. My legs started to not work hardly at all. 11 days ago I decided to give in to prednisone. I don't know what the future will hold as far as side effects but I feel about 80 to 90 % better. Worst still in the mornings, but by afternoon, almost feel like a normal person.
Thank Navion...I think I have the same mindset as you...but feeling very restricted by this...and having to accept that i have a chronic condition, that while manageable, will need me to make changes. Glad to hear you are feeling better, and reading other's experiences does make me less worried about pred.
I can second that, it’s not a nice drug but it works and a sling as you do as much research as you feel you can to be informed you will be amazed with the result after that first dose. I appreciate how fit you have kept yourself and hopefully that will make it a bit easier but don’t underestimate the change your body will go through with PMR and remember your not alone. This forum seems to be filled with great people from all walks of life but with a common goal to help people like us through it.
Yes, she did lots of screening bloods including those...and everything normal except slightly anaemic. She thinks preds are the best route too. I've just never been much of a pill-taker before...takes a lot for me to have a paracetamol.
I felt very, very old at 54/5 and for the year preceding dx. I am not saying every day and every dose is a picnic, but at least the pmr pain and stiffness, and the fatigue that did age me, is gone for the moment at least. Hoping with pred clearing out the inflammation you will reduce the number of marathons your legs are carrying. 🌻
Thank you...yes...I think my GP is great. From what I hear it's important not to go back into 'normal' life and overdo it once on preds...though it sounds that exercise is important esp for some pred side effects. In the past 4-5 years I've got a level of fitness that has made me feel physically and mentally well...and helped me cope with very difficult times...and I don't want to lose that fitness.
I am probably the wrong person to comment in exercise and sporting activities.
In the main it's the pmr that will affect your body. Many people, especially if fit and diagnosed early seem to keep some fitness up. But you will need to get used to a new normal with adjusted goals. As long as you dont push as hard as usual and find where your own limits are you should be able to do some exercise. I started smallish and worked up. But you are in a much better position. There are people who do well. This question comes up and i have linked to a member who has got through PMR. Remember there may be some people who never need this forum.as they dont find pmr impacts on them quite so badly once they take pred.
Thank you SO much for this link...I'm nowhere near skinnyjohnny's fitness league but my jogging (albeit always has been very slowly) has been important as I only really took it up 4 years ago...and it feels central to my wellbeing ...gives me time and headspace for myself and therefore helps give me more energy to look after those who need me...so this link is great to see. Gives me hope that I can keep up some, if a lot less excercise and possibly return to it.
To be honest Daisyfield I haven't changed my lifestyle very much at all since diagnosis in October 2017. As soon as I took my first dose of the magic pred my pains disappeared only returning in a minute flare last June/July. Probably because I was reducing too quickly. I didn't know anything about this forum at the time of DX only joined a year in but it's been really helpful in my understanding of PMR. I've just decorated my son's new flat. Helped with removal. I walk the dogs 3 times a day. I listen to my body and if I'm tired I take a rest. I'll be 70 in a few weeks.....life in the old dog yet! Good luck.. MamaB
I think the point everyone is making is that no matter what level of symptoms you have Pred is the thing that can solve the pain.
It is not a defeat to take it , it is just you adding to your weaponry to combat the PMR quickly and prevent it doing more damage to your body.
If you use a balance of rest, good diet , exercise and reduce stress this will definitely make your PMR easier to live with , make recovery quicker , and reduce the effects of the steroids on your body , but you do need the Pred to reduce the inflammation and get over the pain.
The difference from just a few days doses and you will understand , but that doesn't mean you can jump back on to the horse and live life as " Normal" while you are have PMR either. That way flares lie.
There is no need to mourn the " old life " because You are not changed , you are still the " old you" it is just you need to make some changes to what you do to prevent the illness controlling you instead of you controlling it by living a " New Normal " .
You will need to make life adaptions and live the " New Normal " for some time but learning that lesson early on will help you take quicker steps to recovery , fighting the changes only helps PMR to beat you.
It takes being honest with yourself and those around you , being willing to ask for help, accepting the need to make lifestyle changes and adapting what you do to make PMR easier , the biggest acceptance , taking the Pred.
You need to be patient with yourself and others too.
If you are sensible , and don't try to fight against accepting the changes , PMR will be the one that loses the fight in the end.
Keep checking in and ask for any help or have a rant when you need too we are all here for you .
There may be side effects with Pred but far worse are the consequences of inflammation if you try to live without it.
Thank you...it seems a big step as I haven't taken any pills in my life except for a few paracetamol. So bizarrely I feel a bit of failure getting ill...which is stupid, I know as I have had family members with severe life limiting illnesses and don't see that as failures in them...ugh! I'll have a little wallow in self pity and sort myself out
It is not the pred that stops you going back into “normal life” it is the PMR. All the pred is doing is suppressing the inflammation and thus the pain, you are still ill. Pred does not cure you. Pred however does allow you to lead a reasonably normal life if you respect that you will need to take things easier and plan more.
Pred is not the bad guy. It's what gives us some sort of normal life. I can live with side effects but cant live with the constant pain from pmr. I know it's a big deal for a lot of people but as it's the only thing that works for pmr, in my eyes it's a wonder drug.
It's recently been suggested that PMR patients should be prescribed some form of gently exercise to maintain muscular fitness as pred can cause muscle weakening. Like weightbearing exercise to maintain bone density, exercise which maintains muscles is also important. It should not be too vigorous as our tissues do not heal as quickly after exercise as normally, but consistent gentle exercise, including ones which maintain range of motion, are helpful. Walking is probably the simplest, most accessible activity we can do daily, and the addition of a few stretching exercises and activities which use our muscles a bit more - lifting a can of soup, like a small weight - will do us a lot of good. If you are starting from having been quite fit it will be easier, but even the least fit can start slowly and whatever they do will be beneficial. Five minutes walk is better than no walk.
Thank you...yes...I think I'll ty to keep up with the walking...interesting that you talk about lifting a can of soup as a weight...pre PMR I'd have wondered what you were on about...but just lifting the kettle hurts now!
I have two dogs who will take me for a walk if I don't want to!
My physiotherapist suggested the soup cans! I have wrist and ankle weights from some long ago physio for something completely different, so use those when I want a small weight.
Pre diagnosis the pain lifting the kettle was one thing that made me think something more than arthritis was going on. I'm glad it was PMR that doesn't damage joints rather than rheumatoid arthritis that can. I've continued social ballroom dancing for the almost two years since diagnosis and recently added swimming., Walking to supermarket and bringing home more groceries than planned is my weight bearing exercise. Down to 4mg of pred but had methotextrate added in January to achieve that. Best wishes for a speedy response to our miracle drug then a very slow smooth taper off it
Hey Daisyfield! I’ve been in your shoes, I’m an ex college athlete and this has taken a toll on my athletic mind. I’ve been weaning myself off the pills Bc I can’t stand taking any kind of pill but continue to get flare ups. Pay attention to your body and what it needs. I’ve tried cbd oils and other medicines but to no avail. I will not stop trying Bc that’s who I am but my weight has come down and I feel better about that but the pain is almost above what I can handle. Don’t be afraid to find the level you can handle Bc the flare ups are horrible! I will keep you in my prayers!
Possibly - but I also developed PMR as a pretty fit 51 year old and it wasn't diagnosed for 5 years until I suggested what it ight be. I've been on pred of various sorts for well over 9 years, I have no identifiable adverse effects. I gained weight - I cut carbs and lost weight. I had gained most of the weight due to PMR and being unmable to exercise properly and it just rearranged itself on pred. I have no signs of diabetes or cataracts, my skin is pretty good for my age and there has been next to no change in bone density. Most adverse effects can be managed when you know how.
But above all - it MIGHT be a long wait! My PMR/probable large vessel vasculitis is still active after over 15 years. In the meantime, I've had a life. The difference between pre and post pred had to be seen to be believed.
Good to hear minimal side effects from preds...but sorry to hear PMR been active for a while. I guess there's no knowing for anyone what it will turn out to be like. There seem to be a lot of people here who like me are in their 50s when they were diagnosed....which seems contrary to a lot of the google search for PMR.
You aren’t on your own in not wanting to take steroids. Unfortunately it is the only treatment that will ease your symptoms- doesn’t cure the illness just treats the inflammation that keeps building if untreated. If untreated you risk developing GCA which could affect your sight. My neighbour had PMR symptoms last summer and didn’t get the appropriate treatment - he lost his sight in February to GCA. Sorry to be so blunt but it can be a reality.
At least you understand your options and I’m sure you’ll make the right decision. If you ‘change lanes’ you’ll still be able to do the things you love just more slowly.
You’ve found this forum which is invaluable for sharing experiences and not feeling isolated by a little known illness.
Thanks for the reply...yes the GCA does worry me...I guess I'm just adjusting to accepting i have a chronic illness that I'll have to manage...this forum is v helpful.
Hi Daisyfield: My story was much like yours...got the PMR diagnosis at age 52 after having been very healthy (only mild psoriasis). Like you the PMR came on after 3 years of extreme stress. Anyway, probably like others here, I do strongly advise that you take the prednisone and then slowly work on weaning yourself off of it. I got the “moon-face” side effect and put on a bit of weight but that all eventually went away.
Here’s a bit of my story: My Mom had PMR in her late 50s so I recognized the symptoms when they came on suddenly. It took me about 6 weeks to see a physician. My first doctor was loath to prescribe prednisone so I had to wait another 6 weeks before I could get a script and 3 months before I could see a Rheumatologist. Over the course of that first 12 weeks, I got worse...I could drive and went to work etc, but I couldn’t even stand up straight and was hobbling around . I was determined to push through but started feeling a bit desperate. Like many of us, I practically crawled up the stairs. I started at 15mg of prednisone and it was like a miracle drug for me. The pain and stiffness were so MUCH better after just a few hours. I weaned myself off over 2 years even though my Rheumatologist wanted me to wean myself in one year.
I didn’t find this group until I was about done with that process...otherwise I might have gone a bit more slowly with the prednisone weaning process and definitely would not have felt so frustrated and alone! I was so angry, for years actually,that I could no longer hike and that I had lost my athleticism and, heck, even my balance.
After my doctor declared me free of PMR and I was done with prednisone I still had bursitis in my knees for another 2 years. Alas, between aging and PMR I never did get back to my former level of athleticism or coordination. BUT, I have been hiking the Rocky Mountains again with my friends and I manage to keep up😊 Most of the pain and stiffness of PMR gradually subsided in those first 2 years but not all...it’s been a long slow process over what is now 5 years. I realized just a few days ago that I feel better now as I am about to turn 57 than I did at 55 and of course certainly tons better than I did at 52 during full blown PMR. Excepting the rare dose of ibuprofen, I have not been on any medications at all for 3 years.
Hope you follow this group! There’s a lot of tremendous knowledge, experience and support. I learned quite a bit about medication, massage, Calcium and Vit D supps, stretching, diet, rest, anti inflammatory teas, lifestyle, etc. but it was the support that meant the most!
One unique thing I did (unique for PMR patients) that helped me keep my muscle tone was to work out with weights and a trainer in a gym 2x a week. Not everyone can, especially in the beginning of PMR. I was lucky that I could and that my trainer was knowledgeable and did his research on PMR. He adapted the exercises and never pushed me too far. Only twice did I ever hurt my joints and then only mildly. Getting down on the matt for an exercises used to take me so, so long. I was like a sloth and felt so ridiculous. These days I’m just fine...about the same as most my age😊. Best to you through this journey! Jenn
Thank you...yes...I think your's does sound a similar start to mine...and great to hear you are out walking the mountains again. I know what you mean about feeling frustrated and angry and alone. I feel a fraud in a way...I think everyone around me, (and I'm lucky to have a lovely family) knows me as doing lots of stuff, so it's a bit weird that suddenly the person they know is so restricted. There are no outward signs, so it's a bit of a silent illness.
Also interesting that you mention your balance affected...my balance isn't what it was.
I'll look into the physio...I have an appointment books via my GP so I'll see if there have someone who knows about PMR. And look into the gym stuff too.
Thanks again for this...it does help to hear other's stories.
Perhaps download dorset ladys revised information sheet about PMR and GCA in the pinned posts at the bottom of the page. It helped my family and friends understand the issues properly.
Just one note on the exercise: It's a delicate balance between having a bit of discipline to go for that walk, that swim, that regular light weight training and stretching when you really feel like sitting on the couch, vs, "pushing your way through the pain" or even pushing yourself with the expectation that you'll see the results very soon. I had done quite a bit of martial arts in earlier years and at some point realized my subconscious bias was to try and push myself past my limitations. But with PMR, I would get injured instead of better or depressed when I lost my balance (took several highly embarrassing falls, including one into the kitty litter when I found myself laughing and crying at the same time because I couldn't get out!) So with the exercise, it's important to be a little disciplined to work some into your routine, but also super patient and kind with yourself and see what works for you for the very long haul.
I have similar story to you. I am 62, diagnosed 18 months ago just by reacting to Pred ( bloods normal) all I had was upper arm pain, and it was a big psychological step to take Steroids. . I responded so well that I was down to nil in a year, swimming walking, Zumba . I was convinced I had never had it. 5 months later and off Pred I am far worse then before. The exercise I did is a distant memory, I have tried diet, rest, Tumeric , everything legal in fact! It's not going anywhere and I'm prepared to go back on Pred
Yes, most of my actual pain is in my right arm and a sciatica when sitting...but overall real stiffness and deep muscle ache. Hope you respond to steroids like you did before.
Hi Daisyfield. I'm 78. My PMR journey started in October 2018 - initial pred dose of 15mg currently on 6mg with slow and careful taper. Symptoms were gone within 24 hours and I went from being a very old man back to my normal very active lifestyle. I play competitive squash several times a week as well as daily gym sessions and, apart from some hamstring strains (which may be due to the pred effect) have been able to continue at the same level as pre PMR, albeit being very mindful of what's happening to my body.
That said, we are all different, and reading others experiences on this site makes me think there could be different types or levels of PMR - for example I never felt pain, only debilitating stiffness.
Pred still scares the socks off me, but I wouldn't do without it - the quality of life it returns to you is beyond measure.
Thank you...very useful to hear...I have some pain but like you, mostly debilitating stiffness. Great to hear you are v active...I hope I can do the same.
...and it has been said that men don't get the same pain as women - no expert on this but do know someone who has the illness and not the same pain....
My diagnosis followed a very similar year and I have always been a strong women and felt the same about taking preds
I did start and must say it was one of the best choices I took dealing with bereavement and being in so much pain was horrendous but when the pain went with the tablets I could deal better with the other things
I think we adapt rapidly to physical changes and don’t always appreciate how unnatural our life has become. There is a great relief in diagnosis and even more in the thought that this self limiting painful illness can be helped. When you can move again easily you will reclaim yourself - try to rest and to pace yourself as Pred doesn’t cure the source of the pain but deals with the symptoms. Life changes but it could be so much worse. I think that every time I push my grandson on a swing or bend down and pick up my granddaughter for a cuddle! 😘
Yes....I'm just mentally adjusting to the fact that I'll have to alter some things in my life...but also relieved it appears to be a self limiting illness. Could be so much worse.
I have PMR/GCA and was started on 80mg pred. I have never been so grateful for anything as I have for those tiny white pills. I know they saved my sight. From a high dose I could pretty much steadily reduce (with a couple of minor flares along the way) to the 6.5 I'm now at after 2 years . I also take Methotrexate to aid the pred reduction. I have no big problems with either drug- anyway have very good GP and specialist rapport: something that helps the management of the illness a lot as well.
You are young and fit so perhaps acceptance of the illness will be more difficult. It requires a lifestyle rethink. Pacing yourself. A change of diet. And stress management. Like you, I had two years of much emotional stress just prior to the onset of symptoms. I've since learned to prioritise and to say 'NO'.
I was in absolute ignorance about the illness at onset and it has been this forum and its extremely knowledgeable members who have educated me and supported me throughout. They will be your mainstay.
Thank you...yes...major emotional stress does seem to be a common factor...i guess I'm just feeling a fed up, as after several v difficult years, things have got better and I have been feeling fitter than I had for a long time and now this has come and kicked me in the butt (quite literally! )
I know! A real kick in the butt. I went through all the emotions- disbelief, anger, why me? why now? denial : the lot. But the illness was still there! So, acceptance was the only path. Then came the planning: getting informed, removing as much stress as I could, changing my diet and all that stuff. Being proactive helps a lot. You will still be able to remain fit, maybe just a PMR-tailored version for the moment?
I have a case very similar to yours. My PMR started two years ago when I was 52 after a year after a family tragedy. I was diagnosed after 4 months but all these months went from pain when I can walk and dress myself to pain when I can neither dress myself nor sleep.... All these 4 months I tried everything from painkillers to scholastic meds to ease the pain. Nothing helped. Do when finally I was diagnosed correctly and started pred treatment it was like miracle to me. All pain disappeared within 2 days. I am still on pred 7.5, had several flare-ups while tampering, but in my experience with PMR this is the only way to treat it. Pred has side effects for sure, but in my opinion at least you can be a person again, not a miserable wreck crying from pain. I wish there was other treatment that does not have so many side effects, but anyway I do not think it is a good idea to wait it out. Besides the longer and stronger the pain the higher can be the initial dosage and the longer can be the period to taper it.
I avoided pred and was on mtx for a very short time.I had extremely high crp and esr levels but because im bipolar decided id leave the usual pmr treatments 4 or 5 years later im over it
You cannot wait this out. Yes the prednisone is scarey to be on. Yet without it you could end up in a wheelchair. I know that is where I would have ended up. I have had it now for going on 4 years. I cannot seem to get past 7 mil of pred. The best advise I have been given from this support group is you must not rush lowering your dose. I am now lowering it by only 1/2 mil at a time. I plan on staying on that for at least two months, then try 7 mil again. This disease will wear you down quick. Hopefully you will be one of the lucky ones that will get over this in a short period of time. I thank God for this support group. My doctor led me to believe this would be over on a couple of years. So I was feeling good like something was wrong with me having this so long. Since I have read so many peoples experiences with PMR I know this can be the norm.
Try the pred...your almost exactly like me..I was terrified about taking pred, having read all the side effects of the “devils tic-tac’s“...but it helped so much and I really haven’t developed much of any of the side effects...I keep up with my blood work, etc with my Dr. ...I started at 20mg am currently down to 5....after a couple of years...I go down real slow...I have always been active but when PMR hits it knocks you for a loop no doubt..lift a half gallon of milk?? No way,,,unscrew a a bottle top..hahaha...nope...but now I am getting mobility and strength back and have resumed exercise and other activities...still have bad days but now I just go with the flow.....TAKE THE PRED..and take enough..
I so understand what you are feeling. After 4 months and 3 doctors not diagnosing me correctly, with pain and stiffness increasing, I then received the diagnosis of GCA and PMR. Very difficult for me to wrap my mind around, exercised, ate healthy for years. Truly think it has much to do with hormonal changes and stresses. I had no choice but prednisone (high dose) to prevent blindness. Pain began at 56 while caring for elderly parent and numerous other family issues that went on for 3 years. It's an unforgiving dilemma.I will say prayers for you (if you don't mind). Always do your best to look up and eat the right foods and to keep moving will help considerably.
I can relate to you I am 57 and when I was diagnosed in December I didn’t know what was wrong I could not walk putting my shirt was exhausting. I started taking prednisone I felt amazing from the first dosage. I just finished a 10 mile race with basically no problems. I am presently on 15 mg hopefully will go below 10 MGS this week I see the doctor 5/7.
I am not sure if diet and exercise will help with PMR I do know prednisone is amazing
Its great that you are able to do your running without a big impact.
However, I would be ULTRA cautious about doing a 5mg drop all in one. So far the pmr is being controlled because of the pred and is therefore quashing your symptoms. Its usually recommended here that no more than a 10% drop is advised. Perhaps consider doing the drop in 3 parts. You can still get to where you want to be in july but dont do it in such a way that you poke that great big bear. Remember that feeling of not being able to get clothes off as usual - i hated that panic of being stuck halfway off ....😫. You don't want to go back there.
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Just one note on the exercise: It's a delicate balance between having a bit of discipline to go for that walk, that swim, that regular light weight training and stretching when you really feel like sitting on the couch, vs, "pushing your way through the pain" or even pushing yourself with the expectation that you'll see the results very soon. I had done quite a bit of martial arts in earlier years and at some point realized my subconscious bias was to try and push myself past my limitations. But with PMR, I would get injured instead of better or depressed when I lost my balance (took several highly embarrassing falls, including one into the kitty litter when I found myself laughing and crying at the same time because I couldn't get out!) So with the exercise, it's important to be a little disciplined to work some into your routine, but also super patient and kind with yourself and see what works for you for the very long haul. 
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