Polymyalgia rheumatica: Pain that comes out of the blue

[@bobreichel]

I got diagnosed with PMR. It started in my lower back and hips. I thought it was my back being out. Went to a chichiropractor, no help. Went to a walk-in clinic. They thought it was my sciatica. Then, I went to the VA. They thought it was authorities. By that time, it affected my knees, hips, shoulders, neck, elbows, wrists & hands. One hand was swollen. I was a mess and in a lot of pain. I told the VA doctor I read I needed to see a rheumatologist. Finally, I got diagnosed correctly. I'm on prednisone 15mg for 14 days, then the wean off. It's been 8 days now. I feel so much better. Not 100%, but about 70 % to 80% better. I wouldn't wish this on anyone. The pain was horrific & sleep was almost none existed for 2 months. Just got a decent amount of sleep last night. What a nightmare it's been. That's my story. PS. I had it for 3 month before i got correctly diagnosed.

[@mamat792]

Interesting! I have felt symptoms now for at least 9 mos. I was playing pickleball regularly and admittedly not stretching enough. Initially it felt as if ALL of my pickleball muscles and tendons were inflamed. Always on both sides. Help me understand the length of time you were on prednisone? It sounds like for a very brief time. I thought it was necessary to be on prednisone for ~1 yr. If it is a short time, are you to take the rx whenever it flares? Is there any foods or movement that makes it flare? Curious to hear more...

[@apriljakimczuk-graham9661]

I am 48 and am just out of remission from this diagnosis. I have been in remission since June 2018. I was in treatment with prednisone for 2 years before I went into remission. So this is not just for people over 50!!!

[@WVgrl59]

48 is close enough

[@apriljakimczuk-graham9661]

@@WVgrl59I said I am just coming out of remission. I was first diagnosed in 2016 when I was 36.

[@southerngirl773]

Thank you for an informative video....The pain I had with PMR was horrible. Thankfully my Primary Care doctor diagnosed me and referred a Rheumatologist. The problem with Prednisone is the terrible side effects. I took very low dose for 1 year 2 mg. I know have osteoporosis. I regret staying on the medication that long. I have changed my diet now and have cut out sugar..low carbs.. no processed foods. I feel so much better. My rheumatologist did not want to talk about diet relating to PMR. She told me diet had nothing to do with it. I disagree but others might find this information helpful.

[@judywhitefield8652]

Diet totally assisted me get past pmr . I was on pred for 2 years

[@bobreichel]

​@mamat792 I said I was on 15mg when I started on prednisone, but by the time I got down to 8mg the pain came back. So I was told to go to 25mg and at the end of each week lower it by 2.5mg till the last week of 2.5.mg. so that added 10 weeks to what I has already done. Unfortunately in the process I was diagnosed with cancer in the neck. So my battle has changed but still going on. My understanding is with PMR quite often you'll get diagnosed with cancer. Unfortunately came true with me. 0:00

[@alangardner8596]

3 Years ago I went to bed one night and woke up a cripple. I was on steroids for a while but decided that they were not the answer so I did some digging about what we eat. I decided to avoid sugar and later ultra processed food and vegetable oils and cut down on carbohydrates. It worked I am now pain free and feeling fitter each day. Gut health is essential so stop eating anything that aggravates the gut. Lectins were avoided and I began to consume olive oil each day. I'm convinced that if I had been eating this diet before PMR it would never have happened. Prevention is better than a remedy.

[@judywhitefield8652]

Same

[@LindaMills-u4j]

Thank you for this. I am in the UK and had never heard of PMR until I got it. The level of pain was excruciating- I described it to medics as being worse than heart surgery, because at least with that, you know what you’re dealing with, opioids work and there’s a defined condition. With PMR, my husband said it was as though I’d aged 30 years overnight ( I wa 70).I started on 40 mg of prednisolone because GCA was suspected, and well over two years later, I’ve only been able to get down to 7mg. I’ve had a lot of illness in my life and I’d say this is the most nebulous and the most debilitating. Thanks again x

[@barbaracobb6090]

Very good info. I was diagnosed a little over a month ago. Everything you mentioned goes right along with what I was/am experiencing. My symptoms got really bad before I saw my primary care physician. I could not get out of a chair, could hardly walk, couldn’t even squeeze toothpaste onto my toothbrush. My dr ordered labs and referred me to a rheumatologist which I’m so grateful for. My prednisone had to be increased to 20mg before I could see an improvement and now I am in the process of slightly decreasing that dose every 2 weeks. I am able to walk now, although it’s not quite my normal gait yet, but I’m so happy to see improvement. I was told this is not such a rare condition, but I had never heard of it before. I appreciate you putting this information out there to help others be aware.

[@drbrittanypanico]

You are welcome, I am glad you found it helpful! I wish you well on your journey in health!

[@AlphaGeekgirl]

How’s it going away?

[@barbaracobb6090]

I’ve still got it, but I’m very much improved. I’m pretty stiff and achy (arms, legs, and hips) in the mornings. It’s often noon or after before I feel like I can move my arms around without a noticeable pain. But even with that, I can do most things without assistance. I’ve only gotten down to Prednisone 7mg so far; that’s because I’ve had a couple of flares. The side effects for the prednisone have not been nice to me. I’ve gained soooo much weight, my skin is thin and it bruises and or cuts very easily on both forearms. I can’t use bandaids anymore because it pulls my skin off when they are removed. My blood sugar and blood pressure are slightly elevated too. So, because of all of these side effects, my dr has added another medication, Methotrexate, to help move away from the prednisone sooner, hopefully. It’s taking about a month to go down 1 mg at a time now for the prednisone, sometimes a little more. She encouraged me to take it slow and hopefully can move away from it sooner. Even with all I have just mentioned, I have really improved. I am pretty sure it’s going to take longer than a year to get over it, but I’m just so happy I can do for myself once again.. being stiff and achy early in the day is nothing compared to how I was for about 6 weeks after onset. I hope I never get like that again, but don’t think I will because this time I have a Dr that knows what is going on with me and I can contact her if needed. Thank you for your concern.

[@MarthaLouiseSilverston]

This is by far the best description i jave read!!! I was diagnosed age 69 very fast following typical sudden out of the blue symptoms and bloodwork. GP Managed 12.5 mg prednisone worked well and I found lot of walking, range of motion daily also was equally helpful. I tapered downper symptom reduction with fatigue over 6 months at increments of .5 at a time every week or two. Finally off after 6 Months exactly. Now 6 months later 0 resumption and fine. I did as well lose 15 lbs with added nuch needed daily exercise. Anti inflamatory diet and have maintained this. In way a gift of realizing I could not just depend on meds. I was as well in my last job a full time member of a big University Hospital International Pain team and very familiar with pain issues but wow had no idea abput this!!! Love your approach and amazing work!!!!

[@MADDLADO1]

This is exactly my symptoms, both shoulders, and hips. Had this for three months, no improvement, starting to get very concerned. This is a great place to start looking at for help, thank you for the video.

[@bryanbaxter6970]

I am a83 year old man,developed PMR three years ago.Was prescribed 20 mgs Prednisone.I am now on four mgs will most likely be on it for the rest of my life.

[@super-simple-healthy]

I was diagnosed at age 51, 3 months after my pain started. I wouldn’t wish this on my worst enemy. While Prednisone seems like a godsend- and it is at first, it is VERY difficult to come off of. Clint Patterson created the Patterson Project and I wish I’d known about it earlier! I could have come off the Prednisone much quicker. His first focus was on RA (healed himself first) but it does work for PMR as well!! I wish more docs would realize how important it is to heal your gut. Medications should not be the only answer. Thank you for talking about this! I had never heard of it before I was diagnosed. Also- I have joined a support group and this is coming up in younger ppl as well. Even a few in their 30’s! Please combine your knowledge with Functional Medicine to help ppl heal!

[@sylviacraig4593]

Thankyou for your advice! I havesuffered from polymyalgia rhumaticaor last 10 years, be careful with predesilone, it’s a miracle cure, but is very hard to come of it. Any advice Is most welcome as the condition is very painful. Also the condition re-occurs and is not cured forever! Blood test show if you have this and can be treated by your doctor. Good luck everyone.

[@yomama8873]

Thank you for talking to us with everyday language instead of Dr. Speak. Very helpful 🤩🤩🤩💖💖💖💖

[@stefsytfavs1]

Have you seen it in people younger than 50? I am 44 years old and have been diagnosed with this and it’s exactly what you’ve described.

[@raybilverstone2066]

I’ve had this and it’s the most terrible pain I’ve ever been in ! I could barely walk get undressed sit down and everything you could normally do but found it impossible to do eventually went to the doctors and he gave me predisone tablets and the pain went practically immediately I called it a miracle cure . the doctor said I would be on the tablets for life after awhile I stopped taking them and never looked back.

[@robertanied457]

Me too

[@marysheridan9790]

Thank you i have all the symptons not headaches struggel to get out of bed and chairs .everyday pretty depressed .pain killers ok but not great .

[@mamat792]

Thank you! Your information is very clear. I was very active before this happened to me. This has not been confirmed but the Rhuemotolgists mentioned this could be what I have been experiencing the past 9 most - Thighs, buttocks, maybe hips, biceps clavicle area and neck. I am 55. I have no desire to take prednisone. I understand it makes the symptoms go away sooner. You did not mention tapering off or the length of time needed to be on the rx. Is it likely it will go away on its own. Can it be stress induced? I feel as if mine was.

[@Simon-im2zn]

I use to get pain in the shoulders some weeks back that would come and go, not had them since or noticed it now. But of late in the last couple of weeks have been getting a continuous headache particularly on the left side of the head, the temple area can be tender and a strange sensation just above that area, like pulsations.

[@carolinecaiger6717]

It is important to let people know this is a time limited disease of 3-5 years. Prednisone must be withdrawn very slowly while symptoms remain inactive. I am just over 2 years in and down to 2.5 mgs of prednisone and symptom-free.

[@doop6769]

Not necessarily. I've had it for going on 7yrs. Without prednisone, I can't function.

[@GoBillGatesDE_POP_U_LATE]

Not going away for me. It's been 5 years I think. Just got worse but only in the summer time is it bad

[@sherryblatt4459]

@@GoBillGatesDE_POP_U_LATEjust got back from seeing rheumatologist, she wants me off prednisone because of the horrible side effects!! I was diagnosed with PMR, woke up one morning 4 months ago and could not move!! My PCP put me on 15 mg of prednisone but told me I must see a rheumatologist! Getting in with one took months! Like I mentioned I just got back from seeing her and she wants to start me on injections of Kevzara!! I just read the side effects from this drug! I think I’ll take my chances with prednisone!! What’s your input??

[@zootybeano]

Knowing that at 73 this may be part of my life until I die, I'm tapering as I can and doing absolutely everything I can to live as if this isn't happening. Keep busy and being productive.

[@happytrails699]

my son needs to be on an immunosuppressant due to a rare condition called CIDP. He can't tolerate azathioprine due to allergic reaction, can't tolerate methotrexate, can't tolerate plaquenil, cannot take TNF biologics because that is what caused his condition, had a terrible reaction to tacrolimus. Now they are talking about Rituxamab and it is freaking me out. How safe is that?

[@dianemower7422]

One doctor told me I had PMR and steriods worked really well within 24 hours. My own gp said no she didn't think i had got it and took me off steriods. Now I can't function, 10 steps is the most I can walk. Can't blow dry my hair because my arms have no strength. Yet as soon as I take 7.5mg of steroids I can run up a hill. Its so frustrating that there is a something that helps me but I'm being refused it. Im in the uk 🇬🇧

[@super-simple-healthy]

Look up Clint Patterson! The Patterson Project. He can help you HEAL without medication by healing your gut. He did a TED talk on RA, but it also works on PMR.

[@GoBillGatesDE_POP_U_LATE]

Excedrin helps me or just aspirin with caffeine

[@almaconnor9171]

That’s why I hope we in the US are NEVER forced into socialized medicine. I don’t care how “free” it is. And you are NOT in control. It’s unbelievable to me that u were taken off prednisone because of this so called doctor. If I encounter a doctor who is not doing a good enuf job, I just look for another. We can get second opinions. “Socialized” medicine is laughable, and it’s horrendous that getting something as simple as steroid medication THAT YOU NEED is a problem. No thank you. Sorry you have to put up with this incompetence, I’ve got GCA, Polyneuralgia Rheumatica too. It’s awful, but definitely treatable with STEROIDS abut some nitwit doesn’t think u need it. To me, it’s a crime.

[@zootybeano]

My family practice doctor dug in her heels when it didn't go away after 6 weeks on steroids, lol, and refused to prescribe 1mg pills to help me taper. I ended up getting a new doctor. The insult is that I'm married to an Internist who knows exactly what this is and was the one to prescribe for me. She insisted I see a rheumatologist, which is impossible in our area on Medicare. I could fly to a city and self pay perhaps. Of course I know a lot about this now and know we all have to manage this ourselves as per symptoms.

[@ah-1946]

I’m also having Temple pain in between my eyes on the left side a sharp, sharp pain

[@mariettanoordewier-kenkel5040]

I had all the symptoms for 2 months but wasn’t diagnosed. I got prednisone and tapered off after a week. It helped but the symptoms came back. Then I had anti inflammatory pills. After a week I stopped those. Symptoms came back. Since 5 days now I take 30 000 units vitamin D3. I feel improvement every day. Symptoms almost gone.

[@thomaskeen7782]

I was diagnosed in Feb. Started with 20mg and felt relief. Down to 7mg and trying to get off presedone. Since feb cataracts grew rapidly in both eyes. Never had them in field of vision. Read that med can have this as a side effect. Operated on both eyes last week. Are there any study groups of possible agent orange? Also any info on homeopathic resolution to this disease?

[@boosmimi2]

I was originally diagnosed with sero-negative RA in the early 2000s, but in the past three years, I was diagnosed instead with PMR. I’ve had bursitis/tendinitis in my IT band for years and in my trochanter area where it hurts to lie on my sides. I’ve had rotator cuff repair in both shoulders from arthritis shredding my tendons. I’ve also been diagnosed with trigeminal neuralgia, but it used to be only on the right side. I’ve now started having symptoms on the left side of the tenderness and very sensitive feeling in my face and scalp on the left side. I also have migraine headaches on the left side. I’m now wondering if this tenderness is not trigeminal neuralgia, but maybe the enteritis you discussed.

[@MariaFatima-lg8qk]

Thank you for you help in this way I am on 5 ml prednisone I got COVID 19 over 3 weeks now I remain with a cough making me tired should I increase the prednisone intake to get rid of this cough. Thank you

[@IntuitiveManifestor]

Is it possible for a 40 year old to have this because they can't figure out what is wrong and my sed rate is high and my neck and shoulders kill me every day

[@aflaz171]

I went down to 2 mg, and everything came back. I went back to 10mg every 2nd day. Hopefully, I can get down lower to say 5mg every other day!

[@careyc7414]

I was diagnosed a yr ago. I started at 15 mg then 7.5 a month later down to .5 mg. I stopped taking it & got muscle /joint pain again about a week later. I’m taking .5-1 mg a day now. Wondering if I will be able to get off completely. Maybe after golf season I will force myself off. Difficult to golf at 80% fitness. Had never heard of PMR. Have met 1 person with it.

[@jayegee7608]

Can this occur in patients younger? I'm in my late 30s and labs are elevated in both ESR and CRP. PMD won't really help and I assume it's because of my age. I'm always in pain. 😞 Urgent care just provided me with prednisone and it helped so much, I was able to move again.

[@Rene_Christensen]

Ankylosing spodilitis perhaps? I have it, and it is very painful in periods.

[@tammiefi8716]

Have been struggling in my 30's also. I am 40 now. I wonder if PMR is what I have.

[@dawninglis8161]

I was diagnosed with this in my 20s

[@deandrecleaver1355]

I'm 34 and dealing with a lot of these symptoms, don't know how to explain to my doctor

[@topbuilder3790]

@@deandrecleaver1355 I told my doctor that my body was under an inflammation storm. He asked me about three questions and told me I had more than likely had PMR. I had never heard of it. Have your blood tested.

[@ah-1946]

I’m also having sent it to to light anything that’s bright it hurts my eye so bad it burns like fire does this have anything to do with burning mouth syndrome?

[@WeLetItHappen]

Ive had one time scalp tenderness and itchiness but it went away. Cant take prednisone have candida in lungs why i have PMR in the first place!

[@kfetter9046]

Thank you for your video. I wish there was an option for "treatment" of PMR other than steroids since there are issues that can arise especially if you have osteoporosis.

[@drbrittanypanico]

There is a medication that is available in an injection, it was just approved recently. Keep talking to your Rheumatologist about how your treatment plan is going!

[@kfetter9046]

@@drbrittanypanico Thank you!

[@zootybeano]

@@drbrittanypanico Kevzara is $5k/mo and Medicare won't pay for it. Plus, if you can't see a rheumatologist, who is going to prescribe it?

[@Herk101able]

Should there be some other drug prescribed along with the prednisone to help protect bone density?

[@Nandymon]

There is, it's not a nice drug.

[@sherryblatt4459]

I’m on Alendronate 70 mg 1 tablet once a week! Just took my second dose! 🤷‍♀️

[@marysheridan9790]

Also have b12 injection every 12 weeks

[@rumblersgear3369]

Stop. They don't have to be over 50!

[@ah-1946]

Is it an auto immune disease? My doctor had sent out lab work for me for fibromyalgia and it came back negative. I told him I had polymyalgia rheumatica, but he doesn’t believe me.

[@sherryblatt4459]

He better believe you!! From what I just went through from one evening going to bed and couldn’t get out of bed the next day!! It’s a living hell not knowing what is going on in your body!😓Praying for you and all suffering with these autoimmune disorders that are messing with our minds as well as our bodies!!! We are in a constant fight ( I’m okay, I’m not okay, am I going to be okay?????🙏😥

[@jameswood231]

​@@sherryblatt4459Feeling your pain. I'm so sorry this has attacked you. I've Been at this for over a year now 😕. From active/working to barely pushing myself out of bed everyday. Been on Prednisone for over 6 months now. Down to 5mg daily. Weaning myself off, do to the side effects. Never has completely taken the pain away. It helps it somewhat. My inflammation markers go up and down. I supplement with Ibuprofen. Daily Stretch and cry from time to time 😢. A man of deep devotion and faith in CHRIST, I pray for HIS Grace for relief. GOD Bless.

[@sherryblatt4459]

Amen to that!! 🙏👍❤️

[@dickjohnson5025]

Yes, its an immune disease. Hard to diagnose though.

[@higuoy]

FYI: This is my opinion based on my condition: ZINC is a NO. Many supplements have zinc added in, for someone with a revved up autoimmune I'm guessing this revs it up more. Slow and steady coming off red. I did a 12 week taper, 1mg each week until down to .5mg. Palmitoylethanolamide, best compound to supplement with when coming off prednisone. Try keto, carnivore, or something along those lines. Little to no starches, sugars, or inflammatory foods & drinks.

[@tammiefi8716]

Wow I have symptoms and I can't tolerate zinc supplements.

[@andrewharrison7027]

I got pmr i am 42

[@grettagrids]

I. Have. Ehlers danlos and sjogrens.. mom. Has. This and is now. In a wheel chair. Is it genetic? Im 49 and getting worse.

[@WeLetItHappen]

Happen after a covid vaccine? Look up draxe type in your problem

[@BlessedSaved-1x]

❤Go canrnivore it goes away when the inflamation disapears.

[@FaithB4Food]

They suspect I have this, they are experimenting with prednisone. 2 days ago, I could not walk. I had to shuffle my feet. The muscle and joint pain is an 8 on a scale of 10. So once the steroids eliminate the pain, will it come back or is it a once and done? Is this a life long with flare ups?

[@zootybeano]

I started on 20 16 months ago and diligently tapered 1mg /month, with many flares. Steroids do nothing to cure this, they just reduce pain and disability so you can live your life. Down to 3.5 now Ive had to add 5mg for a couple of days before I drop back to 3.5 for another try.

[@ah-1946]

Does it cause burning of the mouth and the eyes are burning also

[@GoBillGatesDE_POP_U_LATE]

I don't remember my pain coming out of the blue. I just got neck and shoulder stiffness thinking I slept wrong. I also noticed lying to long on parts of your body makes it ache. My pain is mild but weakness got worse.