Understanding and managing polymyalgia rheumatica - Dr Daniel Boulos, Rheumatologist.

Dr Daniel Boulos, Rheumatologist, Southern Rheumatology presenting on 'Understanding and managing polymyalgia rheumatica'.

[@captainfoil3984]

My PMR was considered "hard-to-treat" and it took me 3 years to completely get off meds and feel normal. I found Leflunomide very helpful. When I was "stuck" at around 7 mg Predisone I began taking 10 mg leflunomide with the Prednisone. Once the Leflunomide built up in my system - after about a month - I was able to completely taper off prednisone and take only 10mg Leflunomide daily, and eventually I tapered off of the Leflunomide too. Leflunomide seems to have fewer side effects than steroids and you should ask you doc about it, particularly for hard-to-treat PMR. If you have PMR you have my heartfelt sympathy. Please hang on to the fact that most people will get over PMR naturally. I am back to normal life, working out, and getting around with no drugs.

[@helenaberg7328]

Happy to hear you finally got off prednisone and found leflunomide. That’s worth investigating…I’m stuck at 7,5 mg Prednisone..

[@nomebear]

I really appreciate you sharing your experience with PMR, treating it with Prednisone, and how to get off of Prednisone.

[@solarwind907]

Thank you Dr., for uploading this to KZbin. You have given me more information than my primary care doctor has ever done on this subject.

[@sheelaghhalstead4549]

One of the most comprehensive and helpful discussions on PMR that I have found. Thanks.

[@thomasjhawley709]

This is an excellent, very well-informed presentation. Thanks Dr. Boulos.

[@kathleenparrish7173]

I have Polymyalgia which came on after a fall on the bus and prescribed Prednisolone for years which in turn cause more problems. However I associate it with allergies and infections. I have just had two spells in hospital and been on several antibiotics and the only infection was E-COLI quite possibly that has got in the Polypropylene mesh incontinence tape. I have been trying out different forms of heat. Groin pain especially now in my left leg is preventing me from walking very far. Pain does not leave off. I do not want to go back on prescribed drugs as in turn they can contain a chemical that can worsen pain Doxycycline is one which has SLS in it. Yes I was told I has Osteoarthritis. I do have Hypothyroidism. I have had breast cancer so my right arm is worse than the left arm so have to use my left arm to raise my right arm to get it working. I also have developed atrial fibrillation. I will say my health went downhill 14 months after the mesh incontinence device was put in. I suffered from the lungs in early childhood and had collapsed lung and the CRP does go up into the 200 with chest infection. Teeth can get pain there too and it worsens with tooth infections.

[@natec6272]

Thank you very much for this. It has been very informative and has clarified some issues around my recent diagnosis of PMR.

[@carolearbuckle5636]

Thank you Dr Boulos. Very helpful and informative. So important for people diagnosed with this condition to understand their illness and feel informed and aware of what they need to know.

[@lindaliestman4397]

An infection and a back injury days apart has apparently triggered this condition for me. I just started 6 days of Prednisone. I am feeling better, and am waiting for the full healing of my back. You have answered many questions for me and your lecture is easy to follow. Perfect! Can’t thank you enough for this effort!

[@MSKAust]

So glad you enjoyed it Linda! You may like to sign up for any of our remaining FREE 2021 webinars or sign up for the series and then you will be updated when we add any future webinars - www.msk.org.au/community-webinars/

[@redshedgardengifts8835]

Thank you thank you thank you! My Dr. diagnosed me with RA but I know it is PMR. So I search for a lecture about PMR and found you. Also interesting is the Large Cell Arthritis. I was having a lot of jaw pain, I just assumed it was because I was grinding my teeth because of the pain in my shoulders was SO bad. It just recently moved to my hips. That scared the crap of me because laying on my side I literally could not lift my top leg.

[@lousilver5852]

Excellent video. Thank you very much, Dr Daniel Boulos.

[@jacquelinearendse4288]

Very informative. Thank you

[@anitagreg2010]

I was just diagnosed yesterday with this although I had suspected it. Thank you so much. This is a better presentation than my doctor did with me!

[@susansoozwaller4935]

Fabulous slide shjow/power point! I learned even more about this nuisance PMR! At least I will have an idea of what the aches are this time! Thank you for your time and explanations..

[@betsyadams4798]

Great and informative presentation! Thank you!

[@eklofsr]

Hi, great job on explaining deep details. Just diagnosed wPMR BUT on Prednisone vs Prednisolone so PLEASE do a deep dive into the differences? And then results when they are each taken for PMR, so we can all know?? Thank you Dr Boulos

[@donjjcarroll2263]

- Wonderful video, great content and great communication skills. I have viewed several PMR KZbin videos and I think yours is the best. I concur with all the other comments that found your presentation tops!

[@richardmathews8250]

Don't underestimate what the food you put in your mouth can do as far as how it affects your immune system. Chronically elevated blood sugar is shown to increase your inflammation and weaken your immune system. 3 months after I realized this I was off Prednisone and done with PMR.

[@Fomites]

Very comprehensive and helpful presentation - thank you.

[@barispesard6086]

Thank you for posting this -- just excellent info for me to help me communicate with my new rheumatologist!

[@susankolberg963]

To continue, I ended up selling my home, quitting my job and moving to another town to live with my daughter to try and recover. It took forever to get off prednisone. I had to stop it in order to sleep again and stop the diabetes and thyroid problems. Several years later, I was off prednisone and getting better and PMR hit again. I was not able to get out of bed or dress myself, so back on prednisone. It took another 2-3 years to get off the drug and have some sleep and a life. (More in next paragraph)

[@gunsmoke6230]

Prednisone is just another misery in itself. The constant headache in the back of my head and horrible psychosis was my experience. It stopped my neck, shoulder and hip pain but it’s replaced by something equally as bad. How anybody stays on prednisone is beyond my understanding. If I lived in a MMJ state I’d take Rick Simpson Oil it stops the pain for me but Texas will never pass MMJ for pain or PMR.

[@susibul5320]

Susan, it’s devastated your life, you’ve described the prednisone problem well, I refuse to take it, I’m 3 months into the start of PMR taking only tumeric and cayenne in food, making sure I don’t get constipated, the pain is improving, I keep moving, I’m hopeful that it is going away now, I feared pred more than the PMR.

[@edl6398]

@@susibul5320I feel exactly the same way. You either deal with the horrible pain or suffer the absolute torture of prednisone (it doesn’t affect everyone badly but for me it was intolerable). It is a choice between being two equally terrible options. I’m having trouble with exhaustion and fatigue so badly now. I just wish the PMR would end.

[@susibul5320]

@@edl6398 thanks for your reply ed, good news from me now 9months later - I gave in and took just 12 days of prednisone, 15mg tapered to none in 12days just enough to stop my pain, yes all of my pain gone except lower back where I may have sacrum joint problem. Hope your exhaustion and fatigue lifts, it’s the pain, it deconditions us.

[@agvision09]

@@edl6398 7 months later, how are you doing?

[@karencuthbert5668]

Thank you so much for this video. You explained PMR in such a simple detailed way that we can all understand. I am going through tests at the moment for suspected PMR. I have definitely got most of the symptoms especially the stiff painful shoulders and hips in the mornings.

[@MSKAust]

Glad you found it so useful Karen! Our 2021 consumer series is underway but its free and you're welcome to sign up at any time www.msk.org.au/community-webinars/

[@pamelasmith2625]

Fabulous, very informative video. I am currently having tests to see if I have this. I started getting symptoms after I had Covid. ❤️🇨🇦❤️🇨🇦

[@maureencunningham9995]

Thank you very interesting talk. You made it very easy to understand a complicated situation.

[@giggino342]

Great post…. Thank you all this information has help me understand what I have 🙏

[@dorisdepinar21]

This is the best info I heard. I had a diagnosis the first time I went to see a Rheumatologist and I’m grateful. Prednisone was a lifesaver and I was ok for a year but some pain has come back. The only thing I don’t understand is who gets PMR. My DNA says I’m SouthernEuropean, I have no NorthernEuropean background whatsoever although maybe some filtered in… maybe. 😢

[@JJ-vc6pp]

Such a useful presentation. Thank you so much.

[@tweetterbug]

Excellent presentation. Thank you. Just diagnosed with PMR 3 weeks ago. This was very helpful.

[@paulaisaac8082]

Thank you for such a clear discussion of PMR. Nothing shows up in my bloods and I keep getting relapses. I've never been afflicted with unintentional weight loss, sadly, but do tend to eat more with Prednisone. Lots of information in here.

[@imacrazyhomesteader226]

Have you taken all sugar and carbohydrates out of your diet? If not that could help.

[@teresapatterson1253]

Less activity and Prednisone equals weight increase. I felt ravenous on Prednisone

[@rehanulislam2419]

Thank you for your excellent presentation. Dr.Rehanul Islam.

[@richt6353]

I notified FDA to check correlation between getting COVID shot and then getting PMR! I have not heard back from the FDA yet, I think the shot caused the PMR!!!

[@richiejohnson]

I developed PMR after my second Moderna covid shot. There is NO doubt in my mind it was triggered by the vaccine.

[@richt6353]

@@richiejohnson SAME with me, my second MODERNA shot, two weeks later I could not lift my arms without lots of pain. Notified FDA and NIH but no response yet! It is not politically favored to blame COVID Shots by JOE BIDEN's CLOWN SHOW!

[@wandayonder9772]

There are documented cases where PMR onset has been triggered by both COVID infection and COVID vaccination. Some people have mistakenly thought PMR was long Covid. PMR can be triggered by infection of many kinds or exposure to environmental or dietary toxins and an inflammatory over-reaction causes PMR in susceptible people.

[@shivikasethi3052]

Very informative lecture, Dr Boulos,

[@AkingBones1]

Thanks so much...Really helpful..

[@Dpo1stPro]

Thank you for this modern talk, I have PolyMyAlgia and watching others on KZbin using buzzwords with no clear terminology is confusing at best. Now after listening to you talk, I have a clear understanding and do feel very much better.

[@RobertWicks-xg4vs]

Good video,thank you.

[@Missmbias]

Thank you for this ! I just got diagnosed and was not sure how to take it . I feel much better now.

[@silversnow-gamingchannel]

Hey! May I ask how old you are with this diagnosis? Cause I'm just 19 and got prediagnosed and I feel really bad, I already have multible deseases but an illness which is more likely for old persons is just... ._.

[@Missmbias]

@@silversnow-gamingchannel 52 but suffered for many years before being diagnosed!

[@silversnow-gamingchannel]

@@Missmbias Me too :( Already began when I was a child but No one cared cause I'm so young. I'm at 20mg Prednisole and other medication now. Not allowed to take more cause the age

[@Missmbias]

@@silversnow-gamingchannel please make sure you have a rheumatologist that really is listening to you !

[@silversnow-gamingchannel]

@@Missmbias Yea there is only 1 where I live :`D

[@patriciastevens4382]

Thank you for this concise and useful information. It will give me some topics to discuss with my doctor.

[@celiafish]

I started to have PMR symptoms after Covid😩

[@gamaltaher9714]

Good, thanks

[@yomama8873]

Thank you 🤩🤩💖

[@patriciadowns621]

I'm a 68yr old Black Woman with PMR just found out December 2020 I feel all alone

[@lesleysears9808]

Patricia Downs Sorry you are feeling alone.

[@patriciadowns621]

@@lesleysears9808 Because of you I don't feel that way anymore I needed someone in real time to respond.All the responses I had found were from years ago or months ago to hear from you let's me know I'm not alone in 2020 with PMR..Thanks

[@blowersm]

I was just diagnosed this week and in a panic about it. I'm afraid of taking prednisone long-term. Also I work in a hospital and so I worry about exposure to infections etcetera which prednisone can make me more susceptible to.

[@flower2289]

Darn. How unlucky. You are black and not supposed to get PMR.

[@solarwind907]

Hope it’s all gone now. I’ve had it over a year. Has not improved. Sincerely wish you the best!

[@cunniffe42]

I had just turned 47yrs old when I got PMR

[@pennypiccolo3439]

Me too. Started symptoms mid 40s but recently diagnosed at 60. Just started treatment so diagnoses not really confirmed yet.

[@kathleenparrish7173]

What about essential oils and heat as treatment.

[@MightyAries66]

If you have adverse reactions to steroids are there any alternatives therapies supplements/ drug for treating PMR? Can change in diet to anti inflammatory foods help?

[@dulcemoutinho5820]

Is not the same as Fibromyalgie?

[@orielgb]

What is 'LEFLUNOMIDE?

[@wandayonder9772]

No good for polymyalgia rheumatica.

[@aussiegirl2148]

My doctor refuses to give me steroids, I've been untreated for twelve years.

[@panzahouse]

My GP Doctor says I have polymyalgia rheumatica score 12 on your symptom test and had miracle recovery with Prednisone for 1 week being white male over 50 but just seen Rheumatologist, his words to me were. Unless I was a white woman over 60 I could not have polymyalgia rheumatica NHS useless as ever. Denied further Prednisone

[@yvelaine]

Could it be caused by a Vaccine ?

[@rogergorrell1849]

I have thought about this previously. My PMR appeared shortly after my third covid vaccination ( the booster). I have gone through hell in the last couple of months, and have been prescribed Prednisone and Hydrocholiquine daily. The medication has not been very effective yet. I have only been on the doseage for a few weeks, so hopefully it will assist in the near future. I can sympathise with other sufferers as I have not had pain like this ever. Amazing how rapidly this condition has progressed in such a short time period.

[@yvelaine]

@@rogergorrell1849 I have had exactly the same thing .. just after the 3rd dose Pfizer .. Pain accross sholders hips, upper arms . .. immense pain for 6 months ... now the Presdnisone is kicking in . Cannot close my hands , erists weak , pain walking .

[@rogergorrell209]

@@yvelaine I understand exactly what you mean. How long after you started to get the pains did you seek help. Do you think we are going to get over it eventually. The specialist I consulted did not really fill me with confidence, the pain is nearly unbearable in my upper arms, shoulders, hips and even the backside. I think I should be on a higher dose of the medication. Am relying a lot on Advil to take the edge off the pain, but it's not really helping very much ATM Would be interested to hear how you are feeling in a few weeks. If you are improving some it would give me hope. Take care. (I have a feeling that there are many other folk going through this after the booster shot.)

[@yvelaine]

@@rogergorrell209 Although i had the jab in the left shoulder but the pain started in the right .. assumed i had damaged it ... but then it spread accross the neck , into the right shoulder , then hips , then upper arms etc ...saw the Dr with a couple of weeks and I was put on Predisnone , but three times 4 day s it did not work , finally i asked to be kept on iy for longer and it is reducing the C inflammatory markers but not the E markers. It is much better and I do feel that we will come out of it but it may take a while . Take lots of vits and do excercise too.

[@helenaberg7328]

Yes Im convinced it is triggered by covid. My pmr started in the neck shoulders after 3 rd booster. A month later I got covid/omikron which was 2 months ago. A week later my legs, arms, shoulders and buttocks were so painful I couldn’t walk well at all. The Dr Said I had post covid fatigue which I treated with ibuprofen. Yesterday I was so tired of the pain and debilitating affects I returned to a Dr and was diagnosed with PMR. So I’ve started steroids having had 2 large doses I am already 50% better. Today I could get out of bed without feeling I had been run over by a bus during the night. I have to return for blood tests in a week to confirm the diagnosis which seems inevitable. Before covid vaccine and omicron I have been very active, jogging, swimming, yoga regularly and Im a vegetarian. I hope it disappears 🤷‍♀️

[@peteperic1783]

Hi i have paid 24.7😢