I was so happy to find a current blog about PMR. I am in the US and there doesn't seem to be anything like this on the web from here.
I recently read that the best way to start treating PMR is to start with 15mg of Prednisone and if not strong enough, 20mg and if relieved, it also helps diagnose PMR. I actually had to take a print out of PMR symptoms and treatment to my doc to get a diagnosis. He agreed. Even had a friend he had treated for over 3 years with it. But refused to send me to a Rheumatologist. So, Isearch the web to learn on my own.
Question: My doc started me on a Prednisone 10 pack, so 40mg a day for 4 days, and so on. It did take away 95% of the pain but then got down to 10 mg. daily that took me to about 70%. After 5 weeks the pain level has increased. Even hands ache all over. What increment of increase would be appropriate?
While my pain is bilateral, I have gotten worse on my left side. I guess it could be related to the way I sit in my recliner. LOL. When off meds it would even go up left side of neck and into left jaw. Currently it has started aching up my neck again.
Question: Is it normal to have one side ache worse than the other?
I breed and show Miniature Schnauzers and also groom, do household duties, and even try to garden a bit. I hurt worse after these activities.
Question: Is it best to continue normal activities or limit them. Is exercising advisable, or not a good idea, and is physical therapy helpful?
Research turned up a recent update on treatment by adding hydroxychloraquine. Apparently using it in conjunction with Prednisone and following their protocol, they have a huge decrease in relapses.
Question: Has anyone used this or heard of this new treatment? Question: Also, there is a treatment being done for PMR at the Helen Foundation called Microdose Therapy. Has anyone used this treatment originally developed for other inflammatory diseases?
Thank you in advance for any help you can offer. I am so tired of aching and not being able to function in my life. At 78 I sure can't afford to be sitting around losing more muscle mass.
Written by
Dydee
To view profiles and participate in discussions please or .
And welcome, rather than answer each question, can I offer you this to read - it will give some answers - but sure others will be along in due course to add their comments - you ma6 a,so learn from the responses from other patients -
I am unable to advise you regarding issues such as steroid dose levels etc, but I can assure you that you have found the right place for help and advice. I have been a fellow traveller for eight months and received so much help from those who look after this forum I find it difficult to imagine how I could have managed.
Like you I have been pretty active although I am a few years younger,what I have learnt regarding exercise is that the old normal is no longer normal and will need to be reset. When I do too much,and by normal standards that could involve a six mile walk,housework,shopping and D.I.Y. all in one day,I am left feeling ill. I cannot do a quarter of the above although I have done a number of times during the last few months much to my regret and have now accepted that it is a fight I cannot win.
If you make this a fight then PMR will win,losers medals are those that we all hide away in a drawer somewhere so be patient,be kind and be sure that a few people will be along soon to advise you on issues such as those you raise above.
Stick around,your experience will help me just as much as mine might help someone else.
Thank You! I just always figured I'd slow down gradually, not come to a screeching halt like this. I am pretty easy going and adaptable, hopefully that will see me through this.
You need to try and find a doctor who is prepared to look up PMR in the medical literature and then treat it properly - and that ISN'T using a steroid pack. PMR is a chronic illness - similar in some ways to rheumatoid arthritis and requires management with corticosteroids for years - not a couple of weeks. Your response to the pack is a partial indicator that it may well be PMR you have, which is a start.
These 2 links give a basic grounding on management of PMR and up-to-date recommendations from world experts. Give it to your doctor and ask them to read it. If they don;t respond - find a new doctor.
In the third link there is a link to the original work for your doctor to follow. I have include dit because it is relatively recent work showing PMR has a median duration of just under 6 years - not the 18-24 months many doctors think. Mind you, yours doesn't even come into that group!
You probably would do OK if you started at 15mg and then tapered slowly to find the lowest dose that works for you. At present it may be about 12.5mg but it will get lower later.
I wouldn't believe the hydroxychloroquine article - it is probably as reliable as its use for Covid! There are nor real studies on it in the past and anecdotal evidence does not parallel those results.
Thank you for the links, I had seen some of this information previously and as I do my research am amazed at the different criteria for dosing and time frame for test lowering of Prednisone. Obviously not a problem universally discussed.
That is a clinical trial using a biologic drug. It is available in the US and Europe for GCA, it may be available for PMR in the US but gaining funding is not always easy for PMR as it is very expensive.
The mainstay throughout the world for both GCA and PMR is corticosteroid therapy.
One thing that makes me wonder if it is "just" PMR is that you say you get relief with NSAIDs - that really is unusual in PMR. There are a few other things that can present appearing like PMR but which do respond to NSAIDs. It requires a good doctor to untease the complexities. But what you are doing at present is possibly storing up problems - repeatedly using short term courses of pred and allowing flares to develop between can often make it increasingly difficult to get things under control again.
Yes, the first 3 rounds of Prednisone docs had no clue what they were treating. Last round on 1 pack doc didn't know there was actually a protocol for dosage. So I am a victim of docs lack of knowledge. Planning to switch Primary care docs!! At least for the next month I am on a steady 10mg.
For goodness sake - can't they use the internet to access all the publcations from ACR/EULAR and other authorities with suggested reductions? They may be too fast for most patients, but they ALL indicate that the use of corticosteroids is long term not repeated short term courses.
PS: Are you telling us that RHEUMATOLOGISTS didn't know how to manage PMR? They should be ashamed of themselves and sent for retraining.
No, these were primary care docs. Main doc even treated a friend with PMR and it took over 3 years to get him tapered off Pred. He warned me it could be a long battle, so WHY try to start tapering me after FIVE weeks. I tried splitting my dose yesterday between morning and evening but was worse again this morning. Gonna quit messing with it.
Hello and welcome Dydee! I hope you will find this site as helpful and supportive as I have. We have quite a few people from the US on here. It is usual to be treated at a primary care level with uncomplicated PMR. However:
Does your jaw hurt when you chew? If so, you could have developed Giant Cell Arteritis - a closely related and much more serious condition that needs to be treated as a medical emergency because of the risk to your eyesight. Symptoms include a new headache and any visual symptoms. It was your jaw pain that made me wonder. I think a few more tests are in order. Especially as you have more pain on one side and symptoms are not settling.
Cannot comment on the other treatments you mention except to say that only Prednisalone/ Prednisone seems to be universally proven to reduce our symptoms/ inflammation. Please be alert for GCA symptoms in the meantime. Stick with us. Talk soon.
Thank you! I have looked at the symptoms of GCA because of the jaw pain but that is the only symptom I have thus far. It only bothers me to chew if I am off all pain meds. At the onset of this symptom it even affected my bite as though the lower left jaw was swollen. I have an appt with my Opthamologist soon so will know more about my eye health then. Will surely keep an eye on that!! Doc thought I might have another issue along with the PMR, but then he really doesn't have a handle on how to treat this so better not rely on him too much.
I am very glad to hear you are seeing an ophthalmologist. Be sure s/he knows all the symptoms and the method of treatment you have so far received. They should be able to do a thorough exam. My ophthalmologist knew and shared a lot more info about pred than my family doctor, who had not even mentioned either GCA or the possibility of increased ocular pressure caused by pred (although she has turned out to be good at helping me manage PMR). From my own reading I knew about this possibility and it turned out my eye pressure was up, although not quite high enough to need treatment (with drops, as for any glaucoma). The pressure dropped with my dosage and is now completely normal, however on that first visit he chatted quite a bit about GCA and the symptoms and how it should be treated as a medical emergency, like a stroke or heart attack. Even at my current vanishingly small dose he still likes to examine my eyes a little more frequently than before I started pred.
Oh dear Dydee! Having received a GCA diagnosis within the last 3 months, your jaw symptoms would send me to the emergency room. It would be a way to get a definitive diagnosis and appropriate treatment.
Glad you are seeing an Opthalmologist. Let us know how you get on!
Hi Dydee, I am quite new to this group and PMR and have gleaned bits and pieces which are helping me.
I am 74, diagnosed with PMR 16 months ago.
To answer 2 of your questions, all of my pain is down my right side, from my neck to my big toe. I have found walking helps, if and when I am able. Sometimes I just amble along, other times I am much faster. Whatever is enjoyable!
But PMR is bilateral, affecting BOTH sides at least close to the same. My doc keeps stressing that, asking "It is on BOTH sides right?" LOL I've not heard of it one just one side.
Hello Dydee, I am also new on the scene, started of on 15mg pred, cut back to 12.5 which caused a flare up of the problems. I am definitely worse on my right hand side, I am also very active and always have been with gardening , grass cutting , strimming etc and will try to work through the stiffness. I feel this is beneficial but could be wrong and would never suggest anyone else does the same unless they really want to. Going to try going gluten free for a month to see what happens.
"... will try to work through the stiffness. I feel this is beneficial but could be wrong"
It will be PROVIDING you don't overdo it. The pred only manages the inflammation being created, it does nothing to the underlying autoimmune disorder itself which chugs away in the background, attacking body tissues (mainly blood vessels it is thought) and making muscle intolerant of acute exercise in much the same way you feel it in flu. If you overdo any activity then the muscles will develop DOMS, delayed onset muscle soreness, that is far worse than you are used to and which will take much longer to resolve. It is even thought that if you do too much it can trigger PMR or lead to a flare. The DOMS can last weeks if it is really bad - the muscles simply aren't able to heal and regenerate as quickly. Rest days between activity days are essential and it is never a good idea to do more exercise when you are still in pain from the last lot even if you used to do it pre-PMR. Start small and build up very slowly - observing the rest days - and you will get back to a degree of what you did before. Most of the athletes I know found that 70-80% of their previous level was about right as long as the PMR lasted. But once it was gone some have been back to their previous level - skinnyjonny recently returned from climbing Annapurna IV!!
Thanks for that, in fact I had a busy day yesterday strimming long grass and paid the penalty today by being much sorer and stiffer pretty well everywhere. I will have to learn to adjust.
I understand that anything you can do diet wise to cut down on inflammation is good for PMR. Good luck. Bread is a daily part of our diet so would be REALLY tough to do.
Hi Dydee, fortunately my wife does a lot of baking and will can use gluten free flour for baking. I am sure I am not the first to try this and will let you know how it goes. Like everybody else I would like to get to the root cause of PMR rather than just treating the symptoms.
Simple carbs and sugars are the worst culprits for encouraging inflammation. And I fear gluten-free baking requires a lot of carbs that are absorbed very quickly and sugar.
Low carb is more likely to help than cutting gluten - unless you cut gluten by abandoning the bakery shelf ...
Having reduced from 15mg to 12.5 and having had several difficult days ( partly due to my strimming exploits), I took my 5mg pill at bedtime last night as usual, slept reasonably well but was up running to the toilet about every l.5 hrs for the whole night, this morning however I feel much better. Does this loss of fluid indicate a draining of unwanted fluid from the muscles and joints, or is it a consequence of taking pred at bedtime? If I take the whole dose in the morning I will really suffer during the following night.
Don't know - could be either. You could try taking the second part of the pred dose earlier - it is to extend the antiinflammatory effect so even taking some at lunchtime might work. Everyone is different so you need to experiment a bit to find the optimum time for you.
Just out of curiosity, I have read that the "experts" think major stress CAN be a trigger to set it off in the first place. I had a Summer that was non stop STRESS leading up to my onset last Fall. Has anyone else experienced this?
The final trigger can be anything that affects the immune system - and stress does have a bad effect on the immune system. Even if stress was not identifiable as the original trigger, many of us find that stress can lead to a flare.
Carbs:What PMRpro said about gluten. Kick the carbs (at least all the grain based ones and added sugars) altogether for two weeks. It will be hard at first, but your taste buds and microbiome will adapt. You should subsequently find it easier to enjoy a small treat from time to time (not every day at least at the beginning) without feeling the need to have "just one more" of whatever it is. My blood sugar got really high when I started pred and did not actually get completely normal for some time, but I reduced it to a safe range very quickly. I was astonished by how much wheat I'd been consuming. I ended up having a high protein breakfast, no cereal, which for several years now has got my day started on the right foot, nutrition-wise.
Exercise: PMR doesn't let you "work through the pain". Exercise good. Strenuous or repetitve exercise, or working too long, as you now know, not good.
It's just so hard to find good substitutes for bread without baking and in Arizona you DO NOT bake in Summer. LOL I went gluten free for 2 years about 15 years ago and did fine and I'm not a picky eater.
Except the English look at your "English muffins" in amazement and the French version of your french toast is rather different and not eaten that often!
LOL I'm sure! We have the French toast every couple of weeks. It's like eating bread pudding but I don't use any sugar and we either top it with a sugarless yogurt sauce I make and bananas or berries mixed with unsweetened apple sauce. Our hiuse is syrup free. LOL Each slice contains a whole egg plus half and half and I use a higher fiber bread so fairly healthy other than gluten.
My son has started to supply us with "pandemic sourdough bread". So I'm eating a lot more carbs now than I had for several years. it will be interesting to see what next blood tests reveal. 🤔
I know. It's a bit scary, actually. I think older people should have a little extra poundage as insurance against weight loss when sick or otherwise stressed.
Oh my. Sour dough is my downfall. We have a Winco store near us and they bake their wonderful sourdough fresh in the store. I make my own garlic butter and freeze it by the level tablespoon on a cookie sheet so have a zip lock bag in the freezer for when sourdough garlic toast is called for! And now I have to go gluten free! LOL
Yes, it is really a matter of LOW carb and bread and most cereals are very high. Going to search for bread recipes using the before mentioned flowers I have on hand. I'm thinking quick bread here as the texture of loaf bread would probably be odd.
I saw a naturopath doc today and she advised gluten and dairy free for 3 weeks to see if it helps. If you use almond, casaba, or coconut flour you are OK. Rice, bean and potato flours are high in carbs, bad for inflammation. I'm going to give it a whirl. She drew blood for thyroid test but is adding ANA test for autoimmune to see if it sheds any light on my PMR.
I was eating gluten-free when my PMR started and we have several coeliacs on the forums. What gluten-free does is remove a lot of the carbs - but you DO need to avoid the free-from aisle as their baked goods are VERY heavy in simple carbs and calories.
And I am typically at a pretty normal weight but the inactivity caused by the undiagnosed PMR then adding Pred. and my low thyroid has packed on 12 lbs of belly fat and of course caused muscle loss. How in the world does one control the weight gain? I eat healthy and not a very big eater in the first place. Blood work yesterday was to figure it a new thyroid treatment.
Cutting carbs has worked for many of us - for some of us it has to be drastically to lose weight but maintaining weight is easier. And that includes all simple and processed carbs and added sugar and limiting root veg and fruit - healthy carbs maybe but still carbs,
Better to bite the bullet now than after it gets worse. Gonna do a food plan today. Hard part is it's so hard to grocery shop right now with Covid bad here in AZ. I had it in June but hubby didn't get it so sure don't want to bring it home. Plus pain has gotten worse last few days making it harder to walk. I will push through it.
I'm very thin. I've lost even more weight since on pred (five years now). Didn't gain any weight at the beginning because of cutting all the carbs ("white" from grain and sugars but did eat sweet potatoes, carrots, parsnips, beets), plus started walking 10,000 steps a day. Can't manage that many steps at the moment (knee injuries) and noted last time I checked weight I'd put on a couple of pounds which in my case is good. It could be the lower exercise but also the "pandemic sourdough" my son has been giving us, so wheat intake up considerably.
You have a number of things to balance, but I'm sure you'll find the right diet and exercise (and med) to work for you.
Right now I'm happy to be able to get out of a chair and walk some days. I do stretches 3 to 4 days a week but other than walking on the treadmill I don't think there''s much I can do. Even Yoga posses are problamatic. The Prednisone is working on me like yeast does for bread dough. LOL
Beware - even if it is the PMRGCAuk one there is no close moderation on it as there is here. You may find some very dodgy info. And one of the FB groups can be very judgemental if you don't agree with their version.
There was a FB page I joined but I had to leave because it was extremely narrow minded and judgemental. That's the sort of thing we are warning you about. It was one for managing PMR without pred and it was their way or the highway, not a kind place where you could pick up tips for helping yourself to feel better and lower your pred dose. Perhaps they all felt so rotten they couldn't be kind, but I did find remarks to me were rather hurtful, and as you say, life's too short to put up with that!
I see that you are in USA and on Medicare (based on your age). Please be informed that you do not need your doctor to “send” you to a rheumatologist. You can just call one and get an appointment. I have done this successfully twice.
Yeah, and my doc messed up the opportunity for Prednisone to help diagnose mine by doing the 10 pack instead of starting off with 15 to 20mg for a few weeks to see how I reacted. I have seen info on a couple newer treatments I would like to talk to a knowledgeable doc about.
Yes, tocilizumab is one of the treatments I read about but the article was from 2015 so am hoping it is more readily accepted now. But medical science moves SLOWLY! I can't imagine going off Prednisone to test again! I am currently feeling more pain anyway and am sooooo miserable with no meds. Can barely get out of bed, can't dress, can NOT even comb my hair. I guess Prednisone is not a problem on lower doses and very few folks have complications from it.
Yes, it REALLY needs to be backed off slowly over many weeks, or even months. Can't believe my doc wanted to cut my dose in half from 10 to 5 mg after only being on it for 5 weeks. Recent studies show majority have no side effects with low doses. Some are more sensitive.
Actually there is a support community for PMR on the Mayo Clinic’s website. I follow it as well as this group since I too am in the US. I’m just off Prednisone this week after 19 months of therapy slowly tapering from a beginning dose of 40 mg/day. If I succeed, I will be very fortunate for such a a short period of symptoms. BTW, 40 is an aggressive dose, which seems to be more common in the US than UK. Literature suggests up to 20 mg to start, with higher doses for GCA. As you have heard, your correct dose and tapering schedule is not predictable; everyone is a bit different. Listen to your body, as the disease and the medication will set your activity and pain levels, not some predetermined schedule. You will get good advice here, as the Mayo community is newer and smaller but does provide good insight on American doctors and care.
I too was started on 40mg, for 4 days, 30mg for 3 days, etc. When I got down to 10mg I was having aches all over, turned out to be Covid. Was doing fine on 10 after a few days but pain has increased recently and hands feel hot. Joints feel fine but tissue kinda burns.
I don’t know of others on Actemra, but that would be a good question to search and post on the Mayo site. While Prednisone is no picnic, it’s side effects are well known and probably not as serious as some shown by Actemra. Your doctor should be able and willing to discuss this with you.
Hello I am in Australia and was diagnosed 6 weeks ago with GCA and PMR. The rheumy started me on 30mg prednisone and methotrexate. I am now down to 20mg pred and so far so good. I have had a second temple biopsy to try and get onto actrema but no result yet everything slow in pathology with covid. I am 73 and was so active it scares me to what may happen in the future
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Tight leg muscles, is this a new stage of my PMR?
Possible PMR for dad?
PREDNISONE AS A TEMPORARY PAIN RELIEF A GOOD IDEA
New to PMR!
New guy, PMR uncertainty 
