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olegraymare
@olegraymare

Posts: 21
Joined: Jan 04, 2018

PMR Anyone?

Posted by @olegraymare, Thu, Jan 4 4:44pm

I was diagnosed with polymyalgia rheumatica about a year ago. I WAS a very active 69 year old female all of a sudden, not being able to get out of bed on her own and having severe hip flexor pain. As is customary, after waiting 3 months to see a rheumatoid arthritis doctor, she administered the C-reactive protein test and I was VERY high. So, she diagnosed me with PMR and prescribed 15 mg of prednisone. I don’t like taking meds (as most of us don’t), but I was in pain and had no quality of life. I’m a swimmer and could hardly dog paddle ! One year later, I have been weaning off the 15 mg down to 1 mg. My RA said that now it’s a matter of determining if I have PMR or arthritis … so, she prescribed 7.5 mg of meloxicam for a month. I will say my shoulder pain seems better, but my hip flexors are awful !! I don’t want to go back on steroids – the devil drug. I would like to get to the “crux” of what is CAUSING my inflammation??? No doctors seem to address that? What would be my next step? A nutritionist? I am leary of taking supplements, as well. Thank you for any help or sharing your experience. Weird disease … I just want my old life back – being able to move without pain, etc. Too much to ask?

REPLY

Hello @olegraymare — welcome to Mayo Connect. We are glad you found us. Connect is a great place to ask questions and learn what others with similar health concerns are doing for treatments. I also have polymyalgia rheumatica (PMR). As my rheumatologist explained it to me PMR is like arthritis all over the body. My first episode of PMR was in 2007 and I was started on 20 mg prednisone. It took me 3 years to taper off of prednisone and the PMR went into remission and stayed gone for 6 years, It came back in 2016 and again I was started on 20 mg of prednisone. I’m now controlling it with 2 mg dosage and hoping to be off of the nasty stuff in a month or so but there are no promises. The one thing I can tell you is we are all different so you just need to take it one day at a time and keep moving but not over doing it.

You have asked the $64,000 question – what is causing the inflammation? Unfortunately I think the answer is the disease itself, but I’m no doctor and have no medical training. Mayo Clinic has a good overview of PMR here:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

I’m tagging other members who have discussed PMR and prednisone (Mr. Nasty) to see if they can offer you any suggestions or more information. @rolandhp, @barbararene, @mach92, @alanbruce can you offer any suggestions or information for @olegraymare ?

I would also like to mention that I think you are on the right track with nutrition. You might want to check out a book by Dr. Terry Wahls – The Wahls Protocol. She has MS and has a great story about using nutrition for cellular health to reduce or eliminate her MS symptoms. You can read more about her here:
https://terrywahls.com/about/about-terry-wahls/

John

My Dr. said that only the patient know how one feels especially suffering with PMR not all acts the same way being treated with Prednisone. I started on 20 mg/day last March & I have weaned down to 7.5 mg/day. I am taking it slowly as I do not want the PMR to flare up & then I would have to start all over again with a higher dose of pred. I know it is difficult but plenty of exercise us one of the recommendations even if you are in pain you must exercise those aching joints. I try to be at the gym 4 time per week & it has helped, and I do not take any extra supplements except for my multi vitamin twice a day. As far as one persons age well I am 76 & will get over this PMR stuff I am persistence. Good luck & keep moving & don’t push the weaning off the pred. take it slowly.

@johnbishop

Hello @olegraymare — welcome to Mayo Connect. We are glad you found us. Connect is a great place to ask questions and learn what others with similar health concerns are doing for treatments. I also have polymyalgia rheumatica (PMR). As my rheumatologist explained it to me PMR is like arthritis all over the body. My first episode of PMR was in 2007 and I was started on 20 mg prednisone. It took me 3 years to taper off of prednisone and the PMR went into remission and stayed gone for 6 years, It came back in 2016 and again I was started on 20 mg of prednisone. I’m now controlling it with 2 mg dosage and hoping to be off of the nasty stuff in a month or so but there are no promises. The one thing I can tell you is we are all different so you just need to take it one day at a time and keep moving but not over doing it.

You have asked the $64,000 question – what is causing the inflammation? Unfortunately I think the answer is the disease itself, but I’m no doctor and have no medical training. Mayo Clinic has a good overview of PMR here:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

I’m tagging other members who have discussed PMR and prednisone (Mr. Nasty) to see if they can offer you any suggestions or more information. @rolandhp, @barbararene, @mach92, @alanbruce can you offer any suggestions or information for @olegraymare ?

I would also like to mention that I think you are on the right track with nutrition. You might want to check out a book by Dr. Terry Wahls – The Wahls Protocol. She has MS and has a great story about using nutrition for cellular health to reduce or eliminate her MS symptoms. You can read more about her here:
https://terrywahls.com/about/about-terry-wahls/

John

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Thank you so much. I wrote you a private response earlier … wasn’t sure how to proceed with the Connect protocol.

14012-1

@rolandhp

My Dr. said that only the patient know how one feels especially suffering with PMR not all acts the same way being treated with Prednisone. I started on 20 mg/day last March & I have weaned down to 7.5 mg/day. I am taking it slowly as I do not want the PMR to flare up & then I would have to start all over again with a higher dose of pred. I know it is difficult but plenty of exercise us one of the recommendations even if you are in pain you must exercise those aching joints. I try to be at the gym 4 time per week & it has helped, and I do not take any extra supplements except for my multi vitamin twice a day. As far as one persons age well I am 76 & will get over this PMR stuff I am persistence. Good luck & keep moving & don’t push the weaning off the pred. take it slowly.

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Hi Rolandhp for sharing your experience. I agree with everything you said – I will be 70, too, and am persistent. None of us want to be on Mr. Nasty – I guess sometimes it comes down to being able to enjoy a good quality of life through drugs, or hobbling along. I am an exercise advocate and never miss a day of swimming, yoga, walking, etc. However, I got to the point I couldn’t even dog-paddle !!! That’s when I made the decision to go on prednisone. I was diagnosed a year ago, started on 15 mg. and have been gradually weaned off down to 1 mg. Now the pain is slowly returning. My RA has me on meloxicam to see if my pain is possibly due to arthritis/tendonitis. It’s a crazy disease (I have never been a sickly person). Have trouble walking in the morning now. Hip flexors aren’t working until after I force through the pain of stretching out. Good luck to you. Maybe I’ll look at 5 mg. of pred. ?

Hello @olegraymare,

I’d like to add my welcome, and thank you for joining the Connect community, and sharing your concerns. @johnbishop has offered some great insight, and while we wait for members to add to the conversation, I thought you might wish to view these step-by-step instructions to help you get the most out of Connect. Here’s the link to the webpage: https://connect.mayoclinic.org/get-started-on-connect/

If you need additional help, you can also contact a Connect community moderator by filling out this form:
https://connect.mayoclinic.org/contact-a-community-moderator/

Frankly, I do not think they know what causes the immune system to attack itself or what any one person has ie; lupus, PMR, Mixed Connective Tissue disease, etc…. My girlfriend who has been a MD for over 35 years ( An OBG/YN) who delivered over 3,000 babies now a Gynecologist and General Medicine practitioner and now a Bio-Identical Hormone replacement Doctor… and I have discussed this subject at length over many days and weeks…. we are both of the opinion that this monster we are dealing with, is an unknown, except for the fact that a somewhat dangerous use of steroids work…. on putting this back in the box…. so to speak…. I have a feeling that if we can hang on with symptoms kept to a minimal, that a cure is on its way….

My question still is;;; did going on an (aggressive- High Dosage of Prednisone = 80mg for 4 days then down 10 mg every 4 days until I am at 10mg now and will keep it at this or lower….. reverse the symptoms (Not being able to stand on my own power) until the 4th day and I was able to regain all my body to stand/dress/shower and all the functions I had lost….or would I have been stuck there, not being able to regain the use of my ‘Core muscles’ “Your core is a complex series of muscles, extending far beyond your abs, including everything besides your arms and legs. It is incorporated in almost every movement of the human body” Or would It have been stuck/ literally and figuratively/ at that state?????

Hi @reagan1mc — I would tend to agree with you that in most cases no one really knows what causes the autoimmune system to attack itself. I have no medical training or background but if I had to guess I would put my money on some sort of imbalance at the cellular level of the body. One of my favorite research tools is Google Scholar (https://scholar.google.com/). I did a search on the phrase “what causes polymyalgia rheumatica” and there is a lot of information available which I’m guessing may be related to all of the folks trying to figure it out.
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=what+causes+polymyalgia+rheumatica&btnG=&oq=what+causes+polymyalgia+rh

Here are a few other links that give their view:

John Hopkins School of Medicine – Autoimmune Disease: Why Is My Immune System Attacking Itself?
https://www.hopkinsmedicine.org/health/healthy-woman/conditions/autoimmune-disease-why-is-my-immune-system-attacking-itself

National Institutes of Health:
— When the immune system goes on the attack — https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1299128/
— Auto Immune Diseases – What Causes Them — https://www.niams.nih.gov/health-topics/autoimmune-diseases#tab-causes

So, I’m guessing it’s almost impossible to answer your question about starting with the high dosage of prednisone (IMHO) – but I’m hoping someone can provide an answer if there is one.

Happy first Friday in 2018! Hoping for a pain free day for all my PMR pals (PN and chronic pain pals too!).

John

Liked by olegraymare

@rolandhp

My Dr. said that only the patient know how one feels especially suffering with PMR not all acts the same way being treated with Prednisone. I started on 20 mg/day last March & I have weaned down to 7.5 mg/day. I am taking it slowly as I do not want the PMR to flare up & then I would have to start all over again with a higher dose of pred. I know it is difficult but plenty of exercise us one of the recommendations even if you are in pain you must exercise those aching joints. I try to be at the gym 4 time per week & it has helped, and I do not take any extra supplements except for my multi vitamin twice a day. As far as one persons age well I am 76 & will get over this PMR stuff I am persistence. Good luck & keep moving & don’t push the weaning off the pred. take it slowly.

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Yes a very strange disease this PMR & really no-one has the answer to where it comes from why some people get it & then no cure. Sure glad for prednisone because without it well yes the pain is really bad. Now no-one is an expert but I did notice the people that are very active tend to get it why well we will let the experts figure that one out. I had said that I am on 7.5 mg/day. I take 2.5 in the AM & 5 in the PM & for me it works. Yesterday I was able to play a round of golf with no problem what so ever. Next week will do some down hill skiing that is if the predicted storm arrives. Otherwise it will be the gym. Stay active

@reagan1mc

Frankly, I do not think they know what causes the immune system to attack itself or what any one person has ie; lupus, PMR, Mixed Connective Tissue disease, etc…. My girlfriend who has been a MD for over 35 years ( An OBG/YN) who delivered over 3,000 babies now a Gynecologist and General Medicine practitioner and now a Bio-Identical Hormone replacement Doctor… and I have discussed this subject at length over many days and weeks…. we are both of the opinion that this monster we are dealing with, is an unknown, except for the fact that a somewhat dangerous use of steroids work…. on putting this back in the box…. so to speak…. I have a feeling that if we can hang on with symptoms kept to a minimal, that a cure is on its way….

My question still is;;; did going on an (aggressive- High Dosage of Prednisone = 80mg for 4 days then down 10 mg every 4 days until I am at 10mg now and will keep it at this or lower….. reverse the symptoms (Not being able to stand on my own power) until the 4th day and I was able to regain all my body to stand/dress/shower and all the functions I had lost….or would I have been stuck there, not being able to regain the use of my ‘Core muscles’ “Your core is a complex series of muscles, extending far beyond your abs, including everything besides your arms and legs. It is incorporated in almost every movement of the human body” Or would It have been stuck/ literally and figuratively/ at that state?????

Jump to this post

Yes Prednisone can be a very dangerous drug but what is the alternative to the PMR non as far as I can see. I could not imagine 80 mg/day I started on 20 & started weaning myself off of it as soon as I could. Now a little discomfort still exist but I am holding my own & down to 7.5 mg/day. On having this PMR my physician thinks the patient does know best on when to cut back the dosage. It must be done very slowly like 1 or 2 mg/month, so far for me that has worked but then only time will tell.

@reagan1mc

Frankly, I do not think they know what causes the immune system to attack itself or what any one person has ie; lupus, PMR, Mixed Connective Tissue disease, etc…. My girlfriend who has been a MD for over 35 years ( An OBG/YN) who delivered over 3,000 babies now a Gynecologist and General Medicine practitioner and now a Bio-Identical Hormone replacement Doctor… and I have discussed this subject at length over many days and weeks…. we are both of the opinion that this monster we are dealing with, is an unknown, except for the fact that a somewhat dangerous use of steroids work…. on putting this back in the box…. so to speak…. I have a feeling that if we can hang on with symptoms kept to a minimal, that a cure is on its way….

My question still is;;; did going on an (aggressive- High Dosage of Prednisone = 80mg for 4 days then down 10 mg every 4 days until I am at 10mg now and will keep it at this or lower….. reverse the symptoms (Not being able to stand on my own power) until the 4th day and I was able to regain all my body to stand/dress/shower and all the functions I had lost….or would I have been stuck there, not being able to regain the use of my ‘Core muscles’ “Your core is a complex series of muscles, extending far beyond your abs, including everything besides your arms and legs. It is incorporated in almost every movement of the human body” Or would It have been stuck/ literally and figuratively/ at that state?????

Jump to this post

Yes, I started at 15 mg. and have gradually weaned down to 1 mg. My pain is returning … as much as I don’t want to go back on prednisone, my RA doctor suggested we try 5 mg and just see if that will keep my pain at a level wherein I can get back to swimming, etc. Sounds like your doc is a reasonable person.

Hmm. I was wondering if there is a connection between hypothyroidism and PMR? I was diagnosed with hypothyroidism 6 years ago and have been on levothyroxine since then. I have my thyroid levels checked regularly and the doctor always says they are in range. When I was diagnosed with this thyroid condition, I had no symptoms of my thyroid malfunction except for my TSH blood test levels. I am on 2 – 25 mcg of levothyroxine 2 days a week and 1.5 – 25 mcg the other 5 days (strange, huh?). I have never been in to see an endocrinologist – wondering if I should seek advice about any relationship? Not that it would matter. But, I’m thinking that if my thyroid isn’t where an endocrinologist thinks it should be, this could have caused me to be more susceptible to the development of my PMR. Geez, maybe all this research is confusing things? Just wondering if anyone else might have the same situation?

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

@olegraymare

Hmm. I was wondering if there is a connection between hypothyroidism and PMR? I was diagnosed with hypothyroidism 6 years ago and have been on levothyroxine since then. I have my thyroid levels checked regularly and the doctor always says they are in range. When I was diagnosed with this thyroid condition, I had no symptoms of my thyroid malfunction except for my TSH blood test levels. I am on 2 – 25 mcg of levothyroxine 2 days a week and 1.5 – 25 mcg the other 5 days (strange, huh?). I have never been in to see an endocrinologist – wondering if I should seek advice about any relationship? Not that it would matter. But, I’m thinking that if my thyroid isn’t where an endocrinologist thinks it should be, this could have caused me to be more susceptible to the development of my PMR. Geez, maybe all this research is confusing things? Just wondering if anyone else might have the same situation?

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Hi @olegraymare, I have PMR but do not have hypothyroidism. I have heard of a relationship between the two but don’t know much about it. I did a search and found some info that may be helpful.

National Institutes of Health:
— Prevalence of hypothyroidism in patients with polymyalgia rheumatica and giant cell arteritis.
https://www.ncbi.nlm.nih.gov/pubmed/1913003
— Hypothyroidism in polymyalgia rheumatica and giant cell arteritis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1679950/

Gujarat Medical Journal August-12 Vol-67 No.2
— Association of Thyroid Disorder with Polymyalgia Rheumatica Suggesting Possible Common Underlying Aetiology
http://medind.nic.in/gaa/t12/i2/gaat12i2p138.pdf

John

@denisecochran

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

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Hello Denise (@denisechochran) — welcome to Mayo Connect. We’re glad you found us. I’m sorry you have to deal with polymyalgia rheumatica (PMR). I also have PMR and the first episode I was close to your age and was on prednisone for 3 years. I was gradually able to taper the dosage until I no longer had any symptoms from the PMR. The good news is that once it’s under control you can usually get back to your normal life. I would recommend talking with your primary care doctor when you get back home and ask them about a referral to see a rheumatologist and then discuss with them a plan to taper off of the drug.

Hoping it goes into remission for you quickly and stays there.

John

@denisecochran

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

Jump to this post

Thank you for your kind words and I again sit here in gratitude which i have an overabundance of since I chose to look at this experience as a blessing…. Now as to the future one is a tad apprehensive because of the diagnosis ‘Mixed’ Connective Tissue Disease which strongly implies as does my readings on this site, that this has possibilities to hit me in different ways at consecutive times during this process…. The overlap clearly reads that way…. So if one can maintain keeping this at bay for years I would be truly blessed; I just do not know…

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