Doctors get PMR too

Doctors get PMR too

68 yo male physician generally healthy until I contracted PMR a few weeks ago - started steroids with good therapeutic effect, now concerned with optimally managing side effects. I'm on the most intense form of insulin suppressive diet I can find, which is a single daily zero carb meal, with strict 24 hour fasting between meals, and cardio sessions during the fast. I'm seeking the optimal time to take Prednisone to avoid high circulating insulin levels around my late afternoon meal time, while retaining best therapeutic effect and least HPA suppression, so I'm trying to take it at 2 AM or as close to that as I can manage. Hoping to get through the 1-3 years I'll need to take steroids without weight gain or other physical deterioration.

79 Replies

  • How interesting! If I had the self discipline to do that I know instinctively that I would feel better. If I inadvertently fast I feel much better. As it is I am tending to give in to evening sugar cravings because 18 months on I am so bored with the restrictions of this condition.

    You have given me a new perspective. I do need to get a grip. I am doing well with a Fitbit step counter and increasing my walking on the flat.

    2 am coincides with the body's shedding of inflammatory substance too doesn't it? Thereby heading the pain off at the pass.

    Welcome to the site! Your insights will be valuable, just don't feel you have to be everyone's doctor though. You are ill too. Best wishes Jane. ( nice selfie).

  • Apparently cytokines are released peaking at 4 AM so a 2 AM dose protects the tissues from that burst. As far as my diet, it’s called One Meal A Day or OMAD, and there is plenty to be found out about it in good You Tube videos. It’s actually very easy to follow. The fat in the meal gives you satiety. Just keep carbs less than 20 gm in that meal. Shredded pan fried cauliflower with bacon and salt is delicious, with a fatty protein like salmon or beef or fried chicken no breading skin on. You won’t be hungry after, it’s not at all difficult. After a few days you will likely adapt. Many doctors are now seeing that grains are relatively recent additions to our diet, which were originally based on nuts and meats, with long periods of fasting between brief feasts when an animal was finally available for consumption. No caveman supermarkets have yet been discovered. On You Tube, in addition to OMAD or One Meal A Day, I suggest you look up the work of Dr. Fung, a brilliant physician, and the entertaining and very knowledgeable Bob Briggs, look up Butter Makes Your Pants Fall Down.

    Doctors don’t make the best patients, but I want to get through this horrible illness with the least unnecessary damage to my physical and mental integrity.

  • So Doc, how does one manage a 10-12 hour workday plus a 2 hour each way commute on one meal a day?

    For me, it's not about hunger. It's about sustaining energy and concentration, was well as the physical challenge of the commute, which is an active one (not just sitting on a bus or train for a couple of hours each way).

  • Look at the You Tube explanations of OMAD and consider to try it? It’s actually natural and you might well feel fine if you do it with low carbs so you can run on ketones. It might work for you, might not. I am not giving medical advice to anyone, just saying what I’m doing.

  • OK. Just thought I'd ask. Hope you find something that works for you...

  • I am going to have a look at this but I guess the OMAD is no good for vegetarians. 🤔

  • BTW you have a very taxing schedule especially the 4 hours of commuting each day. That has to be rough. I guess do what you can do, but the joy of trying dietary changes is that you don’t know how you’ll feel until you do it. Maybe start with OMAD on your off days?

  • Off days? People have those?

    My "off days" are the weekends, when I work from home, commuting from the bed t the couch and back.

  • Good grief! I don’t know how you manage to keep going with such a demanding job! My commute was 1.5 hrs each way to/from London and I have recently had to give up work because I can’t carry on with this blasted illness.

  • No choice for me. I 'm an American. If I don't keep my job, I lose my health insurance, and so does my husband, who had a heart attack last year and can now only work part time. We're both far too young to retire, with 5-6 years to go before we're eligible.

    The good thing is I don't have a lot of time to spend thinking about how I feel. I check out what hurts, figure out a way around it, and get on with what needs doing. Thanks to pred, I'm still on my feet and moving forward, and am reducing by .5mg per week (Most days. I'll stand pat or go up .5 if I need to.)

    It's a lot easier than it was in the first few months. Some days are great. Others are more of a struggle.

    But isn't that always the case?

  • I hadn’t thought about the health insurance angle, sorry. I am 54 so had not been planning to give up work yet, but can’t carry on. You are amazing! We are worried about my loss of salary but will just have to adapt. I am sorry about your husband - I hope he is ok now. I do hope you manage to get some time to yourself. I am guessing that finding a less demanding job is out of the question.

  • Oh, there are other jobs, but then I'd be bored, a source of stress all unto itself. I love my job, my staff has been wonderful, and has stepped up to help me limit my hours in the office. They'll be getting most of what is allotted to my group for raises and bonuses for the foreseeable future.

    My dear one is recovering well, thanks for asking, but will now always be somewhat limited in how much he can take on. He's a professor, and has cut back on the number of classes he teaches. He keeps busy writing articles and he's starting a book. He's entered a different type of academia now.

    We're in New York. There's a reason why they call it the city that never sleeps.

  • I am glad you love your job and staff. I never felt that way. How great that your husband is writing a book!

    You New Yorkers are special!

  • I too work and cannot give in to this disease. I push and push by the time I get home its ready for bed. I have had problems with the prednisone doing damage to other areas, I know am looking at a hip replacement.

  • You are male and I would take a bet that you will be through and into remission within the two years quoted..................

    You also might like to take a look at the three charity websites.

    PMR&GCAUK which runs this forum.

    PMR&GCA Scotland

    PMR&GCAuk North East Support.

    I assume you already use Patient info, the site started up by two Tyneside GPs and the most factual, well administered site I have ever come across.

    You even might be able to manage to help other GPs to learn about PMR.

    I live in hope that one day those brilliant researchers who have taken up the challenge, will find, cause and cure. Not in my lifetime but it will happen.

    Me: GCA 5 years in remission 7 years and a non-medical person.

  • Thank you for your kind words. I love Scotland so much! Got back from 2 weeks in the Highlands and Edinburgh, got to see Eddi Reader perform in Perth and take a picture with her! Love her renditions of Robt Burns poetry...

  • I came down with PMR a few weeks after I returned to the states, so glad I made the trip before I came down with PMR, not at all sure I'd feel comfortable traveling again at this point...

  • Me too. Went to Scotland in October of 2016 and PMR symptoms began by beginning Nov.. What a funny coincidence. I even joked about it on this forum at one point.

    Thoroughly enjoyed Scotland and the people. Would go back in a heartbeat.

    My internal medicine doctor at Kaiser puts out monthly newsletters. One was about intermittent fasting.

    I was advised by a wise acupuncturist when I first got PMR to go on a modified anti inflammatory diet. No grains, no sugars, warm foods, low carb veggies, low dairy. It was a steep learning curve for me about what to eat. I got lucky with that advice, lost 25 pounds without cravings or hunger. Back to my post college weight of over fifty years ago. Blood sugar is fine despite Pred. I caved and started 2.5 mg Crestor because 6 months on Pred. my cholesterol did spike above its usual borderline high.

    I wish more MDs would advise patients to go the low carb route.

    Welcome to this club you never wanted to join. I hope your PMR journey is a smooth one.

  • What a nice, nice note, thank you. And what a totally odd coincidence that we both came down with PMR after returning from a trip to Scotland!! Maybe there is an infectious agent in the haggis, nips, and tattiess, or maybe its the stovies... I enjoyed them both...I hope your health improves and that you enjoy a wonderful quality of life.

  • 'Tis neeps you eat WITH your haggis - and a nip you drink AFTERWARDS!

    Some of us claim being married to a David is a risk factor for PMR - don't think a trip to Scotland is any more likely...

  • Can I blame spell check on the neeps/nip mixup? What a wonderful country is Scotland, wonderful people, wonderful vocal lilt, Scot's speaking is like singing, or at least chanting, to my ear...On the last night of the Edinburgh Festival I had a room opening out on to the Castle, with live music and a fireworks show behind illuminating the night sky...heard Karen Matheson sing Ay Fond Kiss...a night I will remember for as long as I live.

  • My daughter lives at the other end of the Bridges across the Firth. I think I could live in Edinburgh - well near, it is far too expensive to live IN it. But I do prefer northern Italy - the weather is better ;-)

  • Speaking of Scotland. Do we have any Outlander TV show fans here? Tonight is the #PrintShop 20 year reunion extended episode. PMR be damned, I will enjoy!!!!!!

    Sorry to digress, but for me it's better than dark chocolate by far. I'm sure that program is healing for me. I have had an anticipatory smile on my face since yesterday. :)

    It was the Outlander TV series, shot in Scotland that led to my travel to Scotland last fall. The beauty of the country speaks to me so powerfully. We had perfect weather too.

  • Just because I said I enjoy pan fried cabbage, shouldn't be taken to mean that I don't also enjoy fresh garden salads with romaine lettuce, peppers, cucumbers, tomatoes, with olive oil and red wine vinegar...just need to be aware of carb content of various vegetables (carrots have a lot). Its really not boring, and not difficult, and I certainly don't feel that I'm "dieting" with all the restrictive connotations of that term. I'm a single man (my wife passed of cancer in 2010) who doesn't enjoy cooking or frequently dining out, so I make my meals simple and healthful, without carbs, and eating once a day. Let's see how my glucose is doing when the doc sees the doc on Monday, I'll let you know! Sorry if my statements upset anyone, I'm certainly not giving anyone any recommendations, merely saying what I'm doing.

  • We do shout loudly about restricting carbs on the forums - it really does help with avoiding the weight gain most doctors assure us is inevitable with pred! I did gain weight - until I cut carbs drastically when I lost 35lbs. If I only had to feed me I think I'd be on OMAD and the sort of food you eat! I hate cooking too.

  • Yay! A fellow traveller!! Good for you!! I think we live in a "food is entertainment" culture, and getting fat is not all that entertaining for most people, is it. Especially on steroids.

  • I started looking at Dr Fung's videos. Very interesting and he's obviously a brilliant physician who thinks out of the box and tries to follow the evidence. Thanks for sharing. He seems very focused (from the material I've seen) on weight control and blood sugar levels and not so much on overall nutrition. But of course, for his diabetic patients those are the critical factors, as they are for so many of us. How is the OMAD plan working for you, as far as you can tell (given all the variables)? Is it something you started with the onset of PMR or had you been on it for a while?

    I had a good friend go on the "lemonade and maple syrup with warm water" fast about 10 years ago. I was worried about him because even then I was aware of the havoc that constant spikes in one's blood sugar levels can cause AND he fasted for 30 days, twice about 7 months apart. He ended up losing tons of weight and then gaining it all back and quite a bit more. Thus, I've been suspicious of fasting longer than a few days. I'm also a bit suspicious of the benefits of going into a state of ketosis on a regular basis. I watched a fair number of female friends try that in the early 80s and again in the 90s with Atkins, only to watch them get cranky, struggle with bad breath and eventually put all the weight back on. But the "high protein diets" did not have the benefit of the focus on vegetables, as they do now. And too, they were "no carb" diets rather than reduced carb diets. I've watched friends and colleagues go through bariatric surgery, lose weight, and then gain most of it back over time...but not all of it. I remain suspicious of the recent craze for ingesting coconut oil, and CBD oil. So many diets and approaches, so complex, and so little comprehensive, conclusive evidence.

    I am not a clinician. I do work in the healthcare field so over the years I've attended, and sometimes led, several dozen meetings with physicians debating the benefits of various diets and, often, the hopelessness of getting their patients to change their lifestyles. I ran several wellness programs with advanced practice nurses who are CDEs, Master level nutritionists, Pharmacists, etc.. They all disagreed with one another on the healthiest approaches to advocate for patients. (We even held a online video contest "Clash of the Diets", where the physicians and nurses advocated for their favorite lifestyle-diets and viewers voted for their favorite. The Conscious Cleanse, which is popular in Boulder, CO won, followed closely by the Mediterranean diet, which was the most popular among the physicians. ) The specific items all of these well educated clinicians DID agree on was to 1) reduce refined sugars of all types to the minimum possible for that person, 2) keep "processed foods", defined as food made in a factory, limited, and to 3) increase intake of vegetables, especially leafy greens and preferably organic, to 5 or more servings a day. Oh and most of them really hated artificial/manufactured sweeteners, but a few did not want to give up their own Diet Coke habit:)

    Well, I've gone on for quite a bit longer than I intended! Such an interesting topic. Keep fighting the good fight, let us know how OMAD goes, and thanks for joining us here:)

  • Well that was a very thoughtful and comprehensive posting. Thank you. I do believe that LCHF and intermittent fasting constitute a healthy lifestyle that will come to be regarded as a perfectly mainstream diet in the near future, especially when dealing with obesity and Type II DM. I think the food industry has pushed sugary foods and drinks on the population for their own profits, and campaigned to incorporate significant carbohydrate intake into the food pyramid and people's daily routines, starting with high carbohydrate load breakfasts. Its very tempting to fall for all that advertising and deliciousness, for almost everyone, me included. But this is a true addiction, in that one achieves a transient state of satisfaction, and then seeks to experience it again, and again, regardless of the consequences.

    Personally I'd gotten a bit sloppy with my own food intake and decided to embark on LCHF almost simultaneously with getting hit with my PMR, so as I posted, I decided to go full bore LCHF OMAD. I'm doing quite well thank you: I've actually lost 22 pounds in my almost one month of Prednisone treatment, my energy level is good, my HbA1C is 5.4, and I don't experience food cravings of any sort. I wonder if the inflammation associated with the overweight state can precipitate PMR? Its been studied and the jury is still out, but visceral fat definitely causes inflammation and triggers cytokine release. Might we PMR patients do better from the standpoint of our disorders if we all got down to a low body fat index and eliminated the additional inflammation caused by visceral fat accumulation? It would be interesting to hear if others here try LCHF and OMAD and what their experiences might be.

    What a nice group of people!

  • Wow! 22 pounds in a month and a very good HbA1C! That's wonderful. Congratulations...assuming you had that much to lose of course! I am glad things are going well and it makes the argument for the LCHF OMAD that much stronger. I do agree that many of us with PMR would be better off at a lower body fat index than is the norm...if only we could get there. And, of course, you are an example of someone who, despite the prednisone and despite having limited mobility with PMR, is well on your way. I will continue looking at those videos and will consider this approach, possibly a bit modified for me, as I'm sure others will too.

    Here's a reason I would consider modifications: I was just looking at my 23andMe genetic test results today, and it underscored how much continued improvement in understanding of our genetic variations is likely to impact our lifestyle and dietary choices...and of course our health care. They write: "In addition to diet and exercise, genetics plays a role in determining your body weight. People with two copies of the variant in this report tend to weigh more on a high saturated fat diet. This variant is near a gene called APOA2, which contains instructions for making a protein called apolipoprotein A-II (apo A-II). People with two copies of the variant produce less apo A-II protein than people with zero or one variant. Scientists are working to understand how apo A-II affects our body's response to saturated fat." Alas, I am a "GG", one of the 15% of people with European ethnicity with two copies of the variant. (It's found more rarely in people of other ethnicities.) And so, sadly, for now, I will kiss goodby the idea of bacon on any sort of regular basis:(

    I'll post sometime about my experience with the 23andMe genetic test. PMR seems to be one of the diseases they are looking at in regards to genome mapping.

  • I too have two copies of that APOA2 per 23&me. Please do keep us posted. Aside from gaining weight on saturated fats is there anything else we are prone to? I have not delved deeply enough into the implications.

  • I hadn't been aware of the APOA2 association with obesity on high saturated fat diets, but just read the article I think you refer to: "APOA2, Dietary Fat and Body Mass Index: Replication of a Gene-Diet Interaction in Three Independent Populations

    Dolores Corella, PhD,1,2 Gina Peloso, MSc,3 Donna K. Arnett, PhD, et al"

    While the association is fascinating, note that there was no attempt made to look at those on LCHF diets. We are in the infancy of such research. Fat intake has been falsely blamed for the effects of carbohydrate intake for decades, and it is only now that the pernicious role of carbohydrates in the production of Type II DM and other metabolic derangements is being recognized, and the beneficial role of ketosis in treating these disorders (again, for those interested, I suggest you look on You Tube for lectures by Dr. Jason Fung, or the brilliant Irish scientist Ivor Cummins (The Cholesterol Conundrum - and Root Cause Solution). I would not be too quick to conclude that your genetic makeup means that LCHF isn't exactly what you need for optimal health. There is a lot of great scientific work to support it, and nothing to suggest that there is a specific population that doesn't tolerate or respond favorably to it.

    Keep us posted!!

  • Re the relative roles of fat and carbohydrate in human metabolic disease, I suggest that you listen to Ivor Cummins' lecture

    , you might start at 1:27:40 if you don't care to listen to the whole thing. I think he is brilliant, and an excellent lecturer to boot.

  • OMG sounds like your work is worse than PMR!

  • Informative and entertaining, thanks for posting. I've had good results with the high fat, low carb way of eating. I don't label it as a 'diet' but a way of living .. the word diet is loaded with restrictive and negative connotations whereas by eating this HFLC way I feel good both physically and mentally through gaining some control over how I tackle PMR.

    Keep us updated .. off to do the cauliflower and bacon breakfast..

  • Slowdown, well said!

    Dictionary definition of 'diet' - 'a mode of living, now only with especial reference to food'! The origin is a Greek word, diaita, meaning a mode of living.

    I used to lecture on 'diet' to student nurses and always started by telling them this. Food has and always will be essential for life / living - there's more to it than restriction.

  • Hello and welcome. Thank you for sharing your strategies- will be interested to read your other oats as you continue on this journey. Best wishes Jackie

  • Hope that your 1-3 years works out, I was diagnosed at age 65 in 2003. Still on 4mg nearly 15 years later and have suffered Gastric Ulcer, Glaucoma and now Cataracts along the way! About 20% of PMR sufferers have this "refractory" type of disease so here's hoping that you're one of the 80%. Luckily my physical state is still relatively good and I'm now a regular visitor at the Gym and Swimming Pool as well as doing plenty of walking. The key is to eat healthily and keep as active as you can. Best Wishes.

  • Thank you and best to you as well. No doubt this is a challenging disorder to grapple with and so much is as yet unknown....but our lives are better with Predisone than not, nonetheless. It must have been the end of all quality of life for those with PMR/GCA in the pre-steroid era.

  • Welcome. I've just got GCA to date from March starting at 60mg. I'm interested in your approach but have some reservations. My approach from the start has also been to control insulin/weight also by cutting out grains and other starches with great success. I wouldn't have been able to stand up on your plan and wonder if it is ok if you are healthy but perhaps not if your body has increased demands from inflammation and metabolic changes from Pred. My concerns would be that with one meal a day I wouldn't be getting more than one opportunity per day to give my body the increased requirement of nutrients that the Pred is demanding. I eat about 10 portions of plant based food a day and can't imagine doing that in one go. The catabolic effects of Pred was very apparent until I increased my protein intake by quite a bit and I do wonder about the free radicals circulating as a result of that catabolism which may be increased by the fasting. We are all different and men's bodies do seem to behave differently with these conditions, but I do worry that this feels more like thrashing the body into submission like it is a healthy one, but you know your body better than I do.

  • We are all experimenting with what works for us as individuals, for certain. I'm very impressed that you have avoided weight gain, that is a major achievement, congrats!

  • Welcome to the forum. I am a retired dietitian and have always eaten what I consider to be a balanced, healthy diet of 3 meals a day, each containing a small portion of starchy carbs; protein at 2 meals, which is fairly often of vegetable origin as my husband is vegan; lots of vegetables and often 5 portions of fruit a day. I avoid added sugars apart from what's in a small square of dark chocolate each day.

    In almost 18 months on steroids I have gained just 2lbs and I put that down to a reduction in physical activity rather than to food.

    Weight gain is not a given, on steroids, as long as we keep control of our appetite. Also, I agree with SnazzyD about not wanting to rely on one meal a day to provide me with all the nutrients, especially vitamins, minerals and trace elements that my body needs.

    I take gastro-resistant prednisolone at 10pm so that it will be released at the right time to combat the cytokines and that works for me.

    Best wishes for your journey with this illness and do keep us informed of your progress and anything you can add from your professional point of view.

  • Thank you for your observations and wishes. You are more expert and experienced than I am for sure. I’ll let the group know how I do with my personal approach.

  • Timing is everything or so I've been told. Like Rugger and PMRPro and some others on this forum I take a delayed released form of Pred. In the states it is marketed on the name Rayos.

    Back at the beginning of my PMR journey, I was sensitive to the cytokine dumping in the wee hours of the morning. It was painful and disturbed the rest of my sleep. At the time I was taking immediate release Pred. at 8am per rx. It never made any sense to me to let the inflammation build overnight and continue until the morning dosage took effect. (the myth of sisyphus) I started experimenting, taking part of the dosage when I awoke at night to use the bathroom. It made a difference to the pain I felt with the cytokine dumping and to the morning stiffness. When I reported this to my rheumy and mentioned Rayos, she approved the switched.

    Since then I have not had any nighttime pain or morning stiffness. I may have aches and pains, but at least I start each day ready to start. I do about an hour of careful stretching and self massage and some strengthening exercises as soon as I get up. Couldn't be doing that without the Rayos. Worth its weight in gold for me and costs more, but my insurance covers. Truly very grateful.

  • Rugger, I cut refined carbs pretty much completely from my diet when my blood sugar increased early days on pred. The level is now completely normal and has been for a long time, since dose lowered, and I still limit my grain and added sugar intake. But one meal a day would be awful for me. I'm quite underweight now and I can't imagine being able to take in enough calories at one meal to get me through twenty four hours, let alone sustain my life.

    Also, I've just read an interesting overview of the plan. Most studies on fasting have been done on men.

  • Heron NS, well done with your blood sugar, but a shame you struggle with your weight.

    My blood sugar was borderline high at diagnosis, which I put down to the inflammation and high starting dose of pred. I have brought the levels down by being careful with my food intake, even when I've had to increase the pred due to a flare this summer.

    Click on my name to see the graphs I've done of blood levels and pred dose. The HbA1c at the bottom is a marker of blood sugar level - 41 is top of 'normal' range.

  • I hate to this but I have unintentionally LOST weight on preds... hope it's due to the meds and nothing ominous!

  • A few people do - there are several on the forums. Some have lost a LOT of weight - and usually they are the people who didn't need to!

  • Hi ARNEMRRM, I am sorry to hear you have got PMR. I did find that diet does help however steroids do have at least eighty two side effects many of which we have do not necessarily have much if any say in. I have had about fourteen of them, including sensitive teeth, hair like a scarecrow, fluid retention, gritty eyes, leg cramps, steroid skin, purpura, also the steroids helped eat away the cartilage in my hip according to the orthopaedic surgeon. It does seem that men have less problems with PMR in general and get over it quicker although this is in general and not in particular. I think the important thing is to pace yourself. Do not overdo things and stop if it starts to hurt. Otherwise steroids really are a miracle drug and help us carry on like nearly normal human beings rather than the zombie cramped up in pain that could not even get out of bed or dress themselves without it.

  • Absolutely!!! Thank you, its so nice that we patients can help one another in this way.

  • An optician was a guest speaker and he advised that changing your spectacles to re-actolite rapid, slows down the growth of cataracts.

    I was astounded because when diagnosed with GCA, I already had the beginning of cataracts and my optician insisted I changed to re-actolite rapide (and night vision glasses for driving.

    I took her advice and 12 years later the cataracts have never grown, not even the tiniest bit.

    So, pred and sunlight do not get on well with cataracts...........amazing. Yet we need sun for Vit D, so just protect your eyes if you wear glasses and are on pred.

    PS I never changed my diet, I had always eaten food as fresh as possible and pur dairy products.

    Me: GCA 5 years, remission into 7th year and still tiny cataracts.

  • That is very interesting jinasc- one of the more irritating things about my now almost a year on pred with GCA has been my changing eyesight. I have gone from wearing varifocals all the time pre diagnosis to seldom wearing glasses at all apart from sunglasses. And it seems to be a constantly changing picture - I had my eyes tested earlier this year and a pair of single vision glasses made for driving, but now they are out of focus so I am driving without glasses.

    It’s nice being able to read (apart from very small print ) without glasses, but confusing too. No one has ever suggested reactolite rapude glasses to ward off cataracts. I must talk to my optician as they did tell me there were the first signs of cataracts developing.

    Thank you for all this interesting information


  • Hi Lizzie, I was interested in your reply since I am having similar experience with eyesight. Had test in June (as a result of possible GCA scare) and eyes healthy with little change from previous prescription. However for the past month I have found I keep adjusting / cleaning verifocals glasses as focus unclear. Like you I am now finding distance better when looking over the top of the glasses, especially night time driving! Initially thought it might be position of glasses since face enlarged (chipmunk). Decided to check it all out at opticians last week, despite the fact I wasn't due test for another year and, from 'everything is fine and healthy', I now have early signs of cataracts and also a reading of 16 on Glucoma test, ( highest level accepted before referral), plus 1.0pt difference in prescription in both eyes! All this in just a couple of months on pred!!! My opticians too have recommended reactolites, though I am a bit reluctant to spend £350 on glasses when, as you say, the 'sight' landscape seems to be constantly changing. Empathising with you. Regards Marilyn.

  • I've managed the entire time with a selection of single-vision glasses that I adjust for position on my nose. Has worked for me. I live in a country with high summer and low winter temps - so I won't expend good money on reactolites since temperature also affects them and we have a lot of tunnels around here so the response must be fast.

  • Even without the tunnels, think I will continue with normal verifocal glasses and verifocal sunglasses. I don't think reactolites work when driving in a car anyway - at least so my husband tells me.

  • The sort that depend on UV to trigger the change don't - the windscreen blocks it. The other sort are probably better - but no doubt more expensive!

  • What is special about re-act lite glasses? Are they lenses that become sunglasses in daylight? We call those transitional glasses in the USA. I don't know just how rapid the transitionals are.

    I splurge on really dark sunglasses this year, prescription, wow. Maui Jim. I never buy brand anything hint, but these just fit me so well, a whole different experience being in the sun. Always have had sensitive I've eyes, worse since menopause.

    Pred may have 82 side effects, but as far as I'm concerned menopause is up there too. I really miss my HRT.

  • My optician (a wonderful man) told me that all glasses provide protection and needing darker glasses was more a case of personal preference. I've been on pred for 8 years - not even a tiny speck of cataract they keep telling me. Much to my disgust - I'd love to ditch my distance specs and get pretty sunglasses that don't cost £300+ - because I have to have the thinnest lenses you can get or the specs just fall off the end of my nose...

  • £300 plus, I would need a bank loan...............:)

  • They have had to last me a VERY long time! That did include the frames - just!!!!!

  • Yes, they are transitional and they are fast.

  • Sympathy for you. In addition to your diet I hope you can waft away stressful issues in your life. For some of us, especially women (am I allowed to mention gender these days?) we take on too much, push ourselves to the limit physically and emotionally and it takes a long time to realize the long-term damage to our bodies. The most important word we should keep in our lexicon and knowing when to say it, is "No." Some on this forum have had PMR for 13 years and more. Many have it over 7 years. As we increasingly age it becomes more difficult to shake off PMR.

  • Trying to get my foggy head round this,you only eat once in 24 hours?I work 12 hour days I can't imagine keeping up energy levels and coping .

  • I've read up on it now! Let us know how you get on.

  • Sandradsn, I have to confess my first reaction upon reading about this regimen was it would be no more fun living that way than having active PMR was! And I don't have to work. When I read NO carbs I was really concerned, but then additional posts made it plain he at least eats cauliflower, so vegetables are not verboten. Not for me, I'm afraid. Thought I'd do anything to be free of PMR, but apparently not. ;) I like my tea breaks and my breakfast (best meal of the day) too much. In fact I can picture myself trying to survive this way and it would be one long headache, quite literally. People have talked about intermittent fasting on this site before, but I thought that's what nighttime was, hence Break Fast for the first meal of the day. We've already fasted for many hours since the evening meal, which shouldn't be a heavy meal.

  • Welcome and so sorry that you're here and have PMR. I hope your journey is short and unremarkable.

    I read your post with interest earlier today. I have since had a quick look at One Meal per Day and watched a long (too long) YouTube from Butter Bob (Butter Makes your Pants Fall Down (remember, in the UK pants means underpants!!) What a shame Bob who is a great example of Insulin Resistance isn't easier to stick with and listen too....I tried :)

    I started Intermittent Fasting around about the same time I began to have PMR symptoms. First time in my 62 years (well in my conscious memory) that I have found a way to manage my constant hunger and labile blood glucose. As Bob says in his video, you eat your breakfast (not cereal in my case) and you feel hungry. It was for this reason I decided to Intermittent Fast...don't eat breakfast, don't raise your blood glucose levels, don't get hungry. It worked...the IM was meant to be 2-3 times per week however after a couple of so weeks it became daily. The weeks where we might eat one breakfast became further and further apart...and we both felt better on this regime. Sadly, I saw no difference in my weight and know I have gained inches. However I have carried on until recently. 3 weeks ago IF hungry before lunchtime I'd have 3 boiled eggs (no soldiers).

    Up until 10 years old I was a normal size, energetic child and looking back this all changed as access to sweets and sugar became more dad took me off sugar in tea (and the rare coffee) when I was 12 as I was heading towards obesity. I suspect that my insulin resistance started then and over the years (until I decided to tell the diet industry where to go) my weight has always been an issue and each time I lost weight I gain it and more.

    26 weeks ago my doctor was finally concerned about my blood glucose and told me next time I see him (next week) he will be considering meds. He asked me to eat less. He asked me to eat less fat..... I (unusually for me) kept quiet as I know that eating fat isn't the answer. I was sad that he, a young French doctor, was still carrying the myths the diet and sugar industry have shafted us with. Anyway....I came away determined not to be on meds for Diabetes 2.

    I cut sugar...stopped making cakes a couple of times a week, stopped eating desserts unless fruit...also watching which fruit I ate. Stopped chocolate (even dark choc has sugar). I never drink soda so no problem there and rarely drink wine, but had very little on holiday and once glass here during the 26 days. I also cut other carbs...French bread is top of the glycaemic index for breads. I've lost 3 kilos and had a blood test yesterday. I'll get the results on Monday and am hopeful that they will show my efforts.

    Thanks to your post this morning I was reminded to up the fat.....we've been so indoctrinated over the years I find I have reverted back to old messages and then feel hungry between meals. Today's lunch saw more butter on the maize crackers, some Macadamia nuts and Brazil nuts and some cheese as it was oily fish in small tins on the menu with would not have been enough fat. I think my guides recently have been Atkins, Paleo etc and a mix of these ideas work for me.

    Thanks...I won't be doing OMAD but will now remember to add more fat, enjoy my bacon and eggs and hope to get moving again.

  • Great post and best of luck to you!

  • When I started my very low carb diet, I thought I'd be hungry all the time. I was wrong. Breakfast without carbs has left me full and without craving. I often go from 8am to 1 or 2 pm without thinking about food now. i used to get hungry by 11am. I do drink hot water of decaf tea between meals. ( I find I need to stay away of citrus or spicy teas. Side effect of Pred. seems to have created a tendency towards bladder irritation.)

    The only times now I feel hungry are when I have slipped and eaten more carbs, or during that afternoon low/weakness I've complained about here.

  • Hi, and welcome,

    Sorry to hear you have joined the PMR club, but good news is most males seem to get through it easier/quicker than females. I’m sure your input both medically and as a patient will be of great interest.

    Hopefully you were diagnosed early (self diagnosis?) so your inflammation had not built up as much as some of those who had to wait a long time for an answer and treatment. I’m sure that makes a difference, which is probably why you had a good reaction to Pred, some are not so lucky and need a higher dose.

    Your 2am regime is good, so you feel okay when you get up. You don’t necessarily put on weight with Pred if you stick to a good healthy diet, but you will probably still succumb to the very fetching “hamster” cheeks for a while, not many get away!

    You can remain active with PMR/Pred, but you do need to remember that your muscles will not be as resilient as they were, so be a little more gentle with them, and go easy on the repetitive circuit training type exercises, they won’t cope. Plus you do need to learn to pace yourself, many suffer from fatigue - a potential side effect of Pred and the PMR.

    And please don’t take it personally if people on here rant about their doctors from time to time - it’s not personal! It’s just that so few seem to have a good grasp of the illness, and it’s effects, and also seem to have a downer in Pred, so try and reduce patients too quickly.

    Not sure why Pred has such a bad press, yes we know it does have side effects, but it’s no worse than a lot of other drugs, and certainly better than some.

  • Lovely post thank you. I d0 t feel in the least defensive about my colleagues. My sympathies are predominantly with those of us seeking care and help.

    Re your question about self diagnosis, yes, that’s exactly what happened. I had aching left shoulder pain for about a month but attributed it to an orthopedic condition. Then, over the course of 24 hours I developed “gelling,” where I felt stiff and slow after a long drive, then some discomfort in my opposite shoulder as well. I woke the next morning with severe limitation of movement in my originally painful shoulder, worsened pain in the opposite shoulder, stiffness and pain in both hips, and struggled to get out of bed. In minutes I recognized that I now had a systemic medical not local orthopedic disease, diagnosed myself with PMR, and sought medical attention. This was on a Friday morning. I had the same problems others describe of getting a doctor’s appointment and worsened daily until I got in and started steroids. Sound familiar? As a patient, no one feels our pain as we do, right?

    Glad to join this group of very nice and intelligent fellow sufferers!

  • Absolutely right about the pain, and the group!

    I was mis-diagnosed with a frozen shoulder, which unfortunately turned into a very severe case of GCA some 18 months later - lost sight in right eye!

    But, my GP did test me in the first month for PMR, and as my reading was deemed to be satisfactory, PMR was discounted, and other symptoms maybe not recognised as such. I later found reading was 30, which now I think would be classed as on the high side, but this was 7 years ago, and I’m certainly more knowledgeable about the whole thing now and would question it, although as we all know not everybody has raised blood markers..

    Back then I’d never heard of PMR nor GCA, and I think that’s the problem for both patients and doctors they are both Cinderella illnesses, and the symptoms are very similar to many others. Not always easy for the doctor to be sure what’s what.

    Glad to say my GCA has now been in remission for 18 months, but those 5.5 years I had it are not ones I would want to repeat.

  • "Hoping to get through the 1-3 years I'll need to take steroids ..."

    Hmm - you're male so you have a fighting chance. I have a 1 and a 3 in my PMR journey but there isn't a space between them - 13 years on it is still here and reminds me of that fact if I try to go too low on the pred! I'm a low carb disciple - gained weight and then lost it when I lost carbs. I love butter...

  • Hoping your condition finally grinds to a halt. Thats such a long sentence for an innocent person!

    You are not the only sufferer who has replied describing the benefits they achieved using a low carb approach. Thank you for your narrative. There have been negative comments about OMAD, but I don't think many of the naysayers have actually tried it. Its surprisingly easy and effective. We have been brainwashed with the "eat breakfast" campaigns by the cereal manufacturers, and the prominent position of grain on the food pyramid, lobbied for by Big Agriculture. I predict that more and more healthcare experts will be espousing LCHF and OMAD: these are literally the only approaches shown to actually reverse Type II DM according to Dr. Jason Fung, who I regard as a brilliant physician. Look him up on You Tube and I think it more likely than not that you will thing him so as well.

    Best of health to you!!

  • I'm pretty much resigned to being a member of the select group (5% or so) with refractory PMR. I have no problems due to pred so I don't worry about it and take what I need - no compromises.

    I ate breakfast this morning - because it was complimentary and a very fine breakfast buffect (the apple strudel was a poem!!!). It would have been rude to have turned it down for reasons I won't go into. But for that I didn't eat lunch and dinner this evening was roast salmon with roasted veggies (sprouts, broccolli, zucchini and tomato). My next meal will be about 1.30pm tomorrow.

    I have never believed the low fat rubbish - butter and olive oil rule in this household!

  • Here is a question for the group: my PMR started with a month of left shoulder pain before generalizing to the opposite shoulder, and both hips, with stiffness and malaise in the course of less than a day. I'm feeling so much better, but the one body area where there is lingering pain and limitation of movement is in my left shoulder...even that is probably 75% better, but no here are my questions for you experts:

    1 Is it common to have lingering symptoms in the region where the disease first showed itself, even after general relief?

    2 For how long does one continue to improve after starting meds, before reaching a plateau?

  • No real answer to 2 I'm afraid - it depends which areas are affected in what way. If you have predominantly muscle stiffness and pain that tends to respond quickly but if you have bursitis and tendonitis that can take much longer. My muscle problems were 80% better in 6 hours. The hip bursitis took perhaps 6 months to really disappear. The foot and hand tendonitis/synovitis took a few months, can't remember exactly.

    If the first symptoms are of bursitis and not recognised/treated in any way then obviously that has had longer to get established - so yes, it is likely that will take longer to resolve. But actually, a 75% improvement is all some people EVER manage. It isn't uncommon for unilateral pain such as you had to be put down to frozen shoulder.

  • Thank you. I’m certain my left shoulder pain was tendinitis/bursitis...and that was the only area deeply affected by that, so improvement will be slower...this is a great site btw

  • We do our best... :-)

  • I had the first symptoms in my right shoulder, then left then left groin then right groin. On bad days it's almost always the first two sites that niggle. Also, I have to be most careful in straining or exercising those two sites. If I overdo, it will be painful again. Painful without the stiffness of PMR. That's how I differentiate those niggles from a flair. I differentiate and hope that I'm right. I'm about a year in from my first symptoms, 10 months on Pred., I think those two places are getting less reactive, but today's a good day so I tend to swing optimistic.

  • My PMR flared as bursitis this summer, in both hips and shoulder joints. Increasing the pred from 4mg to 10mg took care of the hips in days, but almost 4 months on, my shoulders still complain if I do a bit more than usual - which isn't a lot! PMRpro's reply to you has given me the incentive to wait and see if the gradual improvement continues. I've accepted the situation by telling myself that the shoulder joint is more complex and that I use my arms for everyday tasks a lot more than my legs.

    As a doctor (and a patient!) you may be interested to see the graphs I've done that show my flare developing and being treated. Click on my name to see my last post. My rheumy is using the graphs to teach doctors and my GP asked for a copy, not to be outdone!

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