My husband was recently diagnosed with suspected PMR, so his rheumatologist is treating him currently with prednisone and tapering down.
Here is the question: Does anyone have any suggestions or helpful articles that may help to determine if there is a diet and/or changes in lifestyle that would help this condition? We realize this condition is probably permanent, but some folks have told us their inflammation for their conditions have been reduced by diet and/or lifestyle changes.
Thank you PMR community!
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Andymegv
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Just a comment from previous posts- when you reducing to 15mg and 10mg - do you mean alternating between 15 and 10mg - or you have been told to reduce to 15mg then 10mg? Whichever way - it is probably much too quick.
His rheumatologist said: 20 mg for 3 weeks, reduce to 15mg for 3 weeks, then to 10mg and by then he will go back to a follow-up appointment; however he said, IF he thinks he can taper sooner, then do it.
Even though males usually fare better with PMR, that is much too fast ….
Bigger drops can be achieved by GCA patients when they start initially - and on much higher doses - but once you get to 20mg needs to be smaller and rule of thumb is not more than 10% of current dose.
20mg to 15mg is a 25% drop, 15mg to 10mg is 33% - asking for trouble. 3 weeks at each level is reasonably okay, but 4 would be better in my opinion.
As for IF you can taper sooner, then do it…….not sure what guidelines he’s been reading, but it sound very Hans Christian Andersen to me …
Wow, DorsetLady, that is very informative. Just curious...how did you come to that dosage information? 😊This is all so new to us...and also, I might add we live in the USA, but this UK forum is soooo helpful. I'm doing all the searching for the husband, who is not a searcher. {giggle}
Unfortunately it’s not in the official guideline, but I’m sure one eminent UK Rheumy said it once [cannot recall who at the moment, but someone will] and it what we quote on here all the time.
Glad to be of help, and although the charity is UK based, it’s open to all, as is this forum..
Surely can -have a look at this post from Fran_Benson who works for charity and has responsibilities for membership- near the bottom of post you find info on how to donate and/or join
It is, PMRGCAuk, and Fran_Benson and Hidden whose names appear under Moderation team, are the charity representatives here. Fran happily takes memberships and donation monies
hi when I was fist diagnosed my Dr had me reducing too fast and exactly what Dorset lady said came true. After so many flairs and my very slow reducing I am seeing the light at the end of the tunnel. I have been dealing with this for two years… I live in the US too. This group is so great and it based on not only knowledge but the most important thing experience! You both will get through this. P.s diet of food that does not promote inflammation can be helpful. Best!🌻🌼
We also live in USA and after the COVID vaccine I developed what my MD suspected was PMR. I never did have COVID however. I was also treated with steroids for almost 5 months and because of that when I tried to change to a lower cost supplemental insurance to supplement my medicare I was refused due to the steroid use and diagnosis of PMR on my medical record. If this is an issue with you make sure that your doctor does not specify PMR unless he is absolutely sure. I had to wait 18mths with no steroids prescribed to enable me to have a lower cost insurance. We may have great healthcare here in the states but sometimes the cost without good insurance can be tough....
I'm really sorry to butt in here but when I was diagnosed I was put on 15mg for 3 weeks, then 10mg for 4 weeks, then 7.5mg where I've remained for a couple of years. I suffered no pain on the initial taper and got my life back. I realise it's different for everyone but this is how it was for me. ......
That’s good to hear, and it obviously works for lots of people….and perhaps we do get a skewed vision on here….if you don’t get issues, you don’t need help.
But we always worry if someone starts too fast and it doesn’t work for them, they end up in a lot of trouble…and it’s them and us that pick up the pieces not necessary their doctors…
As they say, everyone is different and listening to your body is key. Since I am sort of doing this research for my husband, I am trying to get him to listen to his body first and then his doctor to make the best decisions for him. Thanks for the information!
My rheumatologist wanted to start me at 10mg, because the side effects from prednisone are much reduced at that dose and lower. It wasn't working for me and I ended tapering from 25 down to 10 over a long time, nearly a year. If I had it to do over, I would have pushed to more quickly get to 10 so as to have less cumulative prednisone. I suffered some bone loss over that period. Work with your doctor and have your husband listen to his body. If the suggested taper works for your husband, that would be wonderful. We are all different.
PMR goes into remission this can take around two years but in some much longer. The average is 5.9 years. It can come back again, but in lots of people it does not. When I was diagnosed I became a nutrition nerd. In fact I found it really interesting. I even use an App checking on my daily nutritional elements!! It is called MyNetDiary, it is free for the basic version. I find it useful as I plan my meals which makes it easier for working out what groceries to buy.
Laughing!! Alas, I would like to call Sherlock my uncle, though! Actually married a ~Volturo~ with heavy Italian roots. My older brother attended Oxford in the '70's and that was my first and only trip to date (sad face) to the UK, but won't be my last! I better hurry up, though...I am 63 and PMR hubby is 73. Traveling is not as fun as it used to be.
That is why the sloooow taper. Trying to find the lowest dose to manage the symptoms without a flare of the disease. The sweet spot can be 1/2mg away from disaster.
No - it ISN'T permanent. The vast majority of patients get off pred sooner or later, less than 5% have a very long version.
You will also hear a lot of guff from "others" about what "cured" their ills. Nothing replaces pred as a medication (except possibly Actemra but it isn't approved for PMR so is a special case and even it may not replace pred altogether). Anything else might help a bit - but not necessarily and won't cure it either.
The basic rule in using pred is slowly does it and while some people might manage that taper, they are few and far between. Endocrinologists who are the big experts in tapering pred say not more than 10% of the current dose - and from 10mg that is essential as adrenal function has to come back too as well as the PMR inflammation being kept under control. Pred doesn't cure anything, it is a management strategy to manage the inflammation which causes the symptoms we call PMR for however long until the underlying autoimmune disorder that creates the inflammation burns out and goes into remission. Which it does do for most unlike most other autoimmune diseases.
However - until the a/i bit burns out, you need SOME pred to combat the inflammation being created - however low the disease activity which is higher early days and fades over time. But however little there is, in the same way a dripping tap eventually fills a bucket and it overflows, the little bits of inflammation that aren't mopped up each day will build up until they reach a level that you can feel as it causes symptoms again. You are looking for that dose, it will vary over time, and by reducing in too large steps you run the risk of missing it and getting into all sorts of trouble in a flare. Do that too over and it becomes harder and harder to reduce again.
Constantly amazed at the level of knowledge you have PMRpro. I guess that is way you are called a pro, eh? Now, the trick is to get the husband on board. 😀
You said "suspectd" PMR? I agree with everyone else about the Taper being too fast IF it is PMR. How does he feel? I had a roller coaster ride with suspected GCA first then suspected PMR then it wasnt! Finally it was both and they tried to taper too soon and I was saved by this great forum. Tapering slowly slowly now and doctor leaves me alone thankfully.
I follow anti inflammatory diet ro a certain extent.
When I say "suspected" that is what the rheumatologist said he "thought" my husband had and was treating it as PMR. After over 40+ blood tests ruled many things out. Definitely taking all these tapering comments into the equation.
I put on 2 stone over two years, just eating normally(for me). I made an effort and lost the weight( thankyou Michael Mosley). Having had a break from pred, and now flairing so back on the meds, I’m going to be really careful not to let the weight creep on, so sugar is out, low carb. Lots of veg etc.
Yes you have had some great advice for him - it is not fun having a flair - been there and done that because of obeying Rheumy instructions! Caroling Gilbert has written a great book about PMR if you can get it over the pone. Amazon uk has it so probably can.
Awesome is the word. I don’t normally read for more than 15 minutes without falling asleep. Two and a half hours later I was still reading! Thoroughly recommend.
Reduction in Pred (if he has PMR) is way too quick to keep inflammation controlled. I'm not understanding why your Rheumy is even reducing it yet. I've had PMR since Aug. 2021, diagnosed in Jan. 2022 and put immediately on 20 mg of Prednisone. Have been reducing very gradually since then (even 1.0 mg can be too much). Diet and lifestyle are only part of the big picture. PMR is an autoimmune disease and therefore if the inflammation is not kept under control, your husband may have "flares" in pain i.e. during times of stress, colds, flu, etc. at which time it may be necessary to increase Prednisone. They say PMR can go into remission (see DorsetLady's comments) after 4-6 years, hopefully that will be my case. In the meantime, educate yourself with all the information on this wonderful forum, because GP's and rhematologists know very little about this disease, or the other component, GCA. All the best to you and your husband, because you will both need to support one another.
Thank you Missus835! We are definitely taking this slow tapering into very serious consideration because of posts from folks like you!! The research phase is so important.
Greetings from Michigan. I was diagnosed at Marshfield Clinic, in Wisconsin., January 2019. I responded immediately to 20 mg Prednisone. My Rheumatologist guided me over 11 months taper. I followed his directions and was successfully off Prednisone since. I still walk “funny”….and fatigue is still a big problem. I have learned to say NO to lots of social stuff, do not travel anymore but I feel well…just tired.
Thank you Gary1310 from Michigan. Hubby and I are in Oklahoma where the wind comes sweeping down the plains. And yes, hubby is having the fatigue. Not sure if it is from PMR or the prednisone or both (?)
Yes, I found cutting back on inflammatory foods, especially sugar and gluten, very helpful and it also helped me to maintain a good weight while i was on prednisone.
Hello Andymegv.I was diagnosed with PMR in May,2021 and have subsequently tapered from 15mg Pred. to a current dose of .5mg with some mild symptoms remaining.I had a ' flare ' at 2mg and the Rheumatologist told me to go back to 5mg and also wanted me to take Methotrexate.On seeing the side effects of 'Metho.' i decided to consult a Naturopath and was prescibed a herbal ' cocktail ' which magically reduced my CRP from 5.6 to 0.7.My CRP on diagnosis was 28.0 but over the many months of taking Pred. it was not able to get CRP to < 3.0 which is considered to be an acceptable range.I have recently been reading a book ' The Immune Solution ' by Amy Myers, herself a sufferer who has apparently helped thousands of fellow sufferers.She has done much research and says that we need to be eliminating the cause of inflammation we have.She points out how bad glutein is, also sugar and points out the connection between leaky gut and glutein and states that Alessio Fasano,MD, founder and director of the Center for Celiac Research at Massachusetts General Hospital and a professor at Harvard Med. School has done the leading research into glutein and leaky gut.He apparently believes that in order to developan autoimmune condition, you must have leaky gut. Myers says she can confirm this from her own practice and that leaky gut puts you firmly on the autoimmune spectrum.So if you want to reverse and prevent autoimmune conditions, heal your leaky gut.Dr Myers book is very detailed but basically advises to need to eliminate foods including glutein together with other foods causing inflammation.In the last two weeks i have 'tested ' her advice, haven't been too radical and following is what has happened.I have stopped consuming the following : - alcohol,tea,coffee,sugar,processed meats, breads, cakes, pies etc.I have been eating fish, chicken, veges,soups(made myself) and fruit smoothies from a blender and nuts.To my surprise my weight has dropped from 90kg to 81kg, my blood pressure down to 120/76, P53 from 145/85, P65. I had swelling in both legs and feet, could only wear 1 pair of shoes and when taking my socks off had a deep groove where my socks had been on my legs.Magically, this all changed, feet back to normal, can wear all my shoes and clothes i thought i could not wear again now fit.And greater mental ' acuity'also and a calmness in my body. I am eating less than before and strangely don't feel hungry many hours after eating which did not happen before.And of course the reduced weight is great for the knees too, 1kg on the upper body translating to 4kg on the knees.Because of the way wheat has been ' modified ' over the years for greater crop yields, resistance to pests etc. glutein is now not the same as it previously was.I have another book ' Wheat Belly ' which tells a similar story and says glutein increases hunger which results in belly fat which itself is inflammatory.I have found my stomach reducing in size which is great for the heart too because there is more room in the chest cavity so the heart is not having t fight against this pressure as well.My feeling about all of this is that we have been given a ' message ' that we have to change our way of living and what we eat and drink has a larger effect on us than anything else we do.It seems to me that taking our medication is really not enough if the medication is fighting inflammation bbut what we are eating and drinking is ' promoting ' it at the same time.Our body is a ' self healing machine ' but often only needs a little help in the healing process.Changes can be difficult but i think you will agree the results i have had with diet 'modification ' in a short time are very encouraging and i feel the key to me keeping my weight lower which i was not able to do previously.I know what i have eaten and drunk over the years is not what Mother Nature intended, and damage has been done by the ' adulterated ' nature of many foods now but hopefully i have been given a window of opportunity to move in the direction of wellness.Exercise is important too and at my tender age i do 8.5hrs/week as an office cleaner for friends who have a small cleaning company.I do hope you can get something from my comments and apologise for the poor setting out of this and lack of punctuation etc. but i knew i would be saying quite a lot and wanted to get forward it for your consideration. I extend my best wishes and through being a member of this forum have derived much benefit i feel.I would be pleased to help further if need be.
Hello Lclmlbls, Thankyou for your kind words and i wish you ' many wins ' on your journey to ' wellness'.I have posted to Andymegv and hopefully there is something there for you too.We are 'all in this together' and just as the thoughts and advice of other members has assisted me, i hope my contributions have useful information for others too.At times when we can be a little ' down' there is a realisation on this forum that there is always someone ' wrestling ' with a bigger problem than us. My best wishes always !
Thanks, I have read all you have written. Since being diagnosed my thoughts have been along the lines of trying to eliminate inflammatory foods and eat foods to fight inflammation. I do take onboard though that there is no reliable scientific evidence to back up these claims. That is why this website doesn’t publish dietary information for PMR sufferers to follow.
I was determined in the first instance to refuse steroid treatment and try the dietary route to fix it but it soon became clear that wasn’t an option.
I’ve learned so much from the knowledgeable people on this website and am grateful to them for that.
I’m waiting for the Amy Myers book to arrive which I hope will be the solution to my nutrition questions. I have so many! I’m so confused (and reluctant) about changing my eating habits. I know I will probably end up cooking two meals, one for me and one for my husband as he is more set in his eating habits than me, and has no reason to change.
I hope to be able to find a way through and end up in a place where I feel confident I’m cooking , eating and enjoying the best foods to help control my PMR. I’m not there yet! I know it sounds a bit pathetic but I just need meal ideas that will appeal to me.
Thankyou for your reply Lclmlbls.I think you will find the Myers book to be most helpful with very detailed information and it was also a New York Times Bestseller.I think diet change can only help on our journey to ' wellness ', especially the elimination of inflammation causing foods.I don't think it is sensible to be on one hand taking Pred. to dampen down inflammation and as an immunosupressant for an overactive immune system and on the other hand to be promoting inflammation by eating foods that do that.Several days ago i saw my Naturopath who said that glutein together with glyphosate (herbicides) is a deady combination relating to having a leaky gut and think this is one reason why Dr. Myers says to eat 'organic ' where possible.The herbs i am taking are 'KO DA ' Chinese herbs and are for pain and inflammation and together with the Pred. and diet change eliminating inflammation causing foods i hope to keep the ' lid ' on my current situation of very mild symptoms and hopeful further progress.But i think we all know ' patience ' is required on our journey and changes will take time to happen particularly regarding benefits of diet change.You will find Dr. Myers recommends the use of various supplements as well in restoring gut health.I extend my best wishes for now and hope you find the book most helpful as i have.
ParoaPrimary WOW. I definitely plan to look into books you have mentioned and read them. Your experience has been very detailed and very useful. I think your attitude about being given a "message" is spot on and your stick to it attitude about changing your diet has been admirable, especially given that it has produced positive results for you. I plan to see if hubby can implement this. Diet is difficult to change, especially when older, but we are going to give it a shot. I need it, as well. I also plan to print this response, so I can use it as motivation for him AND me.
Andymegv, thankyou for your reply.You will notice FoCo Lady in her post, commented on benefits she received by eliminating glutein and sugar from her diet. Amy Myers in the book i mentioned says 80% of the immune system is located in the gut, meaning that if you don't have a healthy gut, you can't have a healthy immune system.She says that Glutein causes leaky gut and that if you are doing every thing right to support your immune system, glutein can sabotage those efforts.With leaky gut,toxins,unfriendly microbes and partly digested foods can leak out of the gut causing the immune system to go into ' overdrive ' to round them all up.So the ' game plan' i think is to heal the leaky gut and at the same time eliminate foods and drinks causing inflammation in this ' inflammatory autoimmune ' disease.According to Amy the gut cells repair quickly, in a matter of days and can be assisted by nutritional support.I am taking 'Leaky Gut Support ' (Piping Rock) and it has constituents - Zinc L- Glutamine, De- Glycyrrhizinated Licorice,Slippery Elm,Marshmellow,Turmeric,Aloe Vera,Apple Cider Vinegar,Quercetin Dihydrate which i know are beneficial to the digestive track.Amy has a 30day programme and says in that time she can make a a major improvement to our health, some patients apparently were able to doawaywith their medication.As for me, at this stage i am on 1mg Preg. which i take at night with evening meal and find in the morning i am feeling good with little stiffness and ' ready to tango '.Any stiffness i have soon goes when moving.I found when taking Pred. in the morning i was stiff with soreness and it took a few hours for this to go.As i previously said my benefits to date are - swelling in legs gone, blood pressure and pulse reduced, enhanced mental ' acuity, reduced appetite because the glutein i previously consumed in bread etc. is not making me unnecessarily hungry.I am eating less and of course the weight i have lost in a few weeks has been good for my knees.I am 76 in August and changing diet can be initially difficult but there is still a lot that we can eat.I recommend Amys' book , i also have the Kate Gilbert one, but no reference is made to diet just an outline of what our ' journey ' can look like, but with good advice and reassurance that there will be an ' end ' to the symptoms which will make life more pleasant.My feeling from ready Amys' book is that change of diet is very necessary to reduce inflammation and it gives a good insight into all the ' rules' we have broken over the years, and one realises the ' laws of nature ' are not negotiable.And as we age of course this is happening over a longer time, like sun exposure etc.I can say that being a forum member (new) has been most helpful as my doctor when diagnosing me in May 2021 didn't mention anything about diet and when i asked about the reason for my PMR said ' well Ron you are getting old,'the Rheumatologist the same.I think without diet change there is a risk of ' bobbing along ' with symptoms up and down, flares happening and a feeling that no ' progress ' is being made.At least by eliminating ' inflammation ' causing foods we are helping the body to help itself, which is mostly all it needs.With the health improvement i have made through diet change i say ' what is not to like ' at this stage.I have written quite a lot here and hope there is someting for you, and would be pleased if you would like to know any further thoughts i have on this.Best wishes from Australia for a ' journey with many wins ' along the way.
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