1. < Polymyalgia Rheumatica (PMR)

PMR Anyone?

Posted by olegraymare @olegraymare, Jan 4, 2018

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Texas Freedom | @oregongirl | Mar 15, 2018
In reply to @olegraymare "As always, there are always questions ... such as - do low doses of prednisone cause..." + (show)
@olegraymare

As always, there are always questions ... such as - do low doses of prednisone cause the bone loss issues as much as higher doses? I don't think there are any answers to that question as far as my googling has discovered !

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Prenisone...is this a steroid? I wish my doctor would prescribe that to me. Instead I am on Methotrexate once a week. I suffer in pain and difficulty in walking and no pain pills

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 15, 2018
In reply to @olegraymare "As always, there are always questions ... such as - do low doses of prednisone cause..." + (show)
@olegraymare

As always, there are always questions ... such as - do low doses of prednisone cause the bone loss issues as much as higher doses? I don't think there are any answers to that question as far as my googling has discovered !

Jump to this post

Yes, prednisone is a steroid. I’m not a doctor and have no training but from what I understand prednisone is the drug normally prescribed for PMR. It would be a good question for your rheumatologist or doctor.

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peach414144 | @peach414144 | Mar 16, 2018
In reply to @olegraymare "As always, there are always questions ... such as - do low doses of prednisone cause..." + (show)
@olegraymare

As always, there are always questions ... such as - do low doses of prednisone cause the bone loss issues as much as higher doses? I don't think there are any answers to that question as far as my googling has discovered !

Jump to this post

@Dear oragongirl, I used mrthotrexate weekly injections for over seven years Under care of a rheumatologist) but now my anemia has become serious. So i had to go off methatrexate because it is not good to use with an anemia disease. It did help me. (Just a little information .

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 23, 2018

Hi Laura (@sistersister9845),

Thanks for the private messge! I am tagging you here in the PMR Anyone? discussion so that you will receive an email notification. Click on the View & Reply button in the email you receive and it will take you to this post. Once here, scroll to the top of the screen and click on the +Follow. It will change to +Following and you will receive email notifications anytime a member posts to the discussion.

Happy Friday! - and may your PMR be working it's way to going into remission.

John

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oldkarl | @oldkarl | Mar 23, 2018

@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple years ago, and we are still trying to confirm the dX. That is the problem with so many disorders and diseases in this community. One dX really deserves two or three more, and we keep working toward a complete dX. And this includes anything that mentions PMR, protein, genetics. We all have to keep our minds open to advances opening up in dX processes until the day we die. Especially true when the disease is systemic, primary, progressive, hereditary. There are a few tests which continually show new issues for decades, including sFLC, ANA, BUN, etc. The reason is warn about this is that you should not be discouraged by new dXes along the way. They probably just mean that your base disease is progressing, so your body is changing to react. Some tests even seem to show recovery, but really are just showing disease progression, such as Cardiac Ejection Fraction, Glom Filtration Rate, even some like Creatinine, Most importantly, keep after your doc to do a complete protein deposit set, including sFLC, SPEP, Serum IFE, Urine PEL/IFE, probably every year. So keep after the Doc. Mayo Videos insist this is important. And that is the importance of this Connect program. A huge majority of human diseases will not be recognized by even the most competent doctors because they never see another patient with that issue. This means that those who experience these issues will be the best witnesses for any dX of rare diseases. So make careful notes, and keep all your discharge and dX papers along the way. Just advice. https://bit.Ly/1w7j4j8 (Amyloidosis Dossier)

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5 replies
peach414144 | @peach414144 | Mar 23, 2018
In reply to @oldkarl "@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple..." + (show)
@oldkarl

@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple years ago, and we are still trying to confirm the dX. That is the problem with so many disorders and diseases in this community. One dX really deserves two or three more, and we keep working toward a complete dX. And this includes anything that mentions PMR, protein, genetics. We all have to keep our minds open to advances opening up in dX processes until the day we die. Especially true when the disease is systemic, primary, progressive, hereditary. There are a few tests which continually show new issues for decades, including sFLC, ANA, BUN, etc. The reason is warn about this is that you should not be discouraged by new dXes along the way. They probably just mean that your base disease is progressing, so your body is changing to react. Some tests even seem to show recovery, but really are just showing disease progression, such as Cardiac Ejection Fraction, Glom Filtration Rate, even some like Creatinine, Most importantly, keep after your doc to do a complete protein deposit set, including sFLC, SPEP, Serum IFE, Urine PEL/IFE, probably every year. So keep after the Doc. Mayo Videos insist this is important. And that is the importance of this Connect program. A huge majority of human diseases will not be recognized by even the most competent doctors because they never see another patient with that issue. This means that those who experience these issues will be the best witnesses for any dX of rare diseases. So make careful notes, and keep all your discharge and dX papers along the way. Just advice. https://bit.Ly/1w7j4j8 (Amyloidosis Dossier)

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@Dear Oldkarl: It is good to read your posts. It encourages me to believe in myself when the doctors look at you as if you are making up your illnesses. But why do they continue with their attitude when the psoriasis rash is ovver 15% of your body and the fingernails shrivel up and fall off leaving the nail bed exposed. Oooch! Very painful. I do wonder why I do not wish this on them. Perhaps because I have found a belief in god.

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martingraham37 | @martingraham37 | Mar 23, 2018
In reply to @oldkarl "@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple..." + (show)
@oldkarl

@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple years ago, and we are still trying to confirm the dX. That is the problem with so many disorders and diseases in this community. One dX really deserves two or three more, and we keep working toward a complete dX. And this includes anything that mentions PMR, protein, genetics. We all have to keep our minds open to advances opening up in dX processes until the day we die. Especially true when the disease is systemic, primary, progressive, hereditary. There are a few tests which continually show new issues for decades, including sFLC, ANA, BUN, etc. The reason is warn about this is that you should not be discouraged by new dXes along the way. They probably just mean that your base disease is progressing, so your body is changing to react. Some tests even seem to show recovery, but really are just showing disease progression, such as Cardiac Ejection Fraction, Glom Filtration Rate, even some like Creatinine, Most importantly, keep after your doc to do a complete protein deposit set, including sFLC, SPEP, Serum IFE, Urine PEL/IFE, probably every year. So keep after the Doc. Mayo Videos insist this is important. And that is the importance of this Connect program. A huge majority of human diseases will not be recognized by even the most competent doctors because they never see another patient with that issue. This means that those who experience these issues will be the best witnesses for any dX of rare diseases. So make careful notes, and keep all your discharge and dX papers along the way. Just advice. https://bit.Ly/1w7j4j8 (Amyloidosis Dossier)

Jump to this post

Hi read your post and thought I'd share my experience. I have had Crohns disease for 25 years. I've had multiple operations ranging from removal to abscesses being drained. It has also given my a heart operation. I've experienced Psorisis on my head and other parts of my body. I understand there is no cure yet. Mine is pus related. I don't take any medication and stress definately effects it. I'm new to mayo clinic. I will endeavour to follow what happens here.
Good Luck
Martin Graham

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paulinef | @paulinef | Mar 26, 2018

Your experience with PMR is very similar to mine - I was 70 when diagnosed and started on 15 mg prednisone. Now 15 mths later I am down to 7 mg per day . However, other symptoms have started that the Rheumatologist doesn't think are PMR related - pain in my buttock that radiates down leg to knee (fluctuates) and a constant ache so I have to sit down often. She has suggested going on Methotrexate which I haven't as yet as it would be yet another medication. So in the meantime until I can see my GP to go through my medications, I am taking twice daily Tylenol Arthritis tablets in addition to the prednisone which do take the edge off a bit.

I really think pain management is the key to this disease and am trying to get to weekly Aquafit for Arthritis sessions in our local pool - it's amazing how much movement you can initiate in the buoyancy of the water. When pain is bad I practice deep breathing into and out of my abdomen and this helps to relax my muscles.

Hope you are staring to find some relief.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 29, 2018
In reply to @oldkarl "@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple..." + (show)
@oldkarl

@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple years ago, and we are still trying to confirm the dX. That is the problem with so many disorders and diseases in this community. One dX really deserves two or three more, and we keep working toward a complete dX. And this includes anything that mentions PMR, protein, genetics. We all have to keep our minds open to advances opening up in dX processes until the day we die. Especially true when the disease is systemic, primary, progressive, hereditary. There are a few tests which continually show new issues for decades, including sFLC, ANA, BUN, etc. The reason is warn about this is that you should not be discouraged by new dXes along the way. They probably just mean that your base disease is progressing, so your body is changing to react. Some tests even seem to show recovery, but really are just showing disease progression, such as Cardiac Ejection Fraction, Glom Filtration Rate, even some like Creatinine, Most importantly, keep after your doc to do a complete protein deposit set, including sFLC, SPEP, Serum IFE, Urine PEL/IFE, probably every year. So keep after the Doc. Mayo Videos insist this is important. And that is the importance of this Connect program. A huge majority of human diseases will not be recognized by even the most competent doctors because they never see another patient with that issue. This means that those who experience these issues will be the best witnesses for any dX of rare diseases. So make careful notes, and keep all your discharge and dX papers along the way. Just advice. https://bit.Ly/1w7j4j8 (Amyloidosis Dossier)

Jump to this post

Hi, @martingraham37 -- sounds like you've had a lot of medical challenges, Martin, and like you'd have a lot to share.

As you have Crohn's disease, I thought you might be interested in dialoguing with ladybugmg, who posted about a study on Crohn's disease and artificial sweeteners,https://mayocl.in/2IdtDs6.

Also, since you've had heart surgery, you might be interested in following the Connect Heart & Blood Health group, https://mayocl.in/1XWwPwo. You'll see "+Follow" in the lower right part of the blue-gray banner for the group. If you scroll down on that page, you may see some particular discussions on heart of interest to you.

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martingraham37 | @martingraham37 | Mar 29, 2018
In reply to @oldkarl "@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple..." + (show)
@oldkarl

@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple years ago, and we are still trying to confirm the dX. That is the problem with so many disorders and diseases in this community. One dX really deserves two or three more, and we keep working toward a complete dX. And this includes anything that mentions PMR, protein, genetics. We all have to keep our minds open to advances opening up in dX processes until the day we die. Especially true when the disease is systemic, primary, progressive, hereditary. There are a few tests which continually show new issues for decades, including sFLC, ANA, BUN, etc. The reason is warn about this is that you should not be discouraged by new dXes along the way. They probably just mean that your base disease is progressing, so your body is changing to react. Some tests even seem to show recovery, but really are just showing disease progression, such as Cardiac Ejection Fraction, Glom Filtration Rate, even some like Creatinine, Most importantly, keep after your doc to do a complete protein deposit set, including sFLC, SPEP, Serum IFE, Urine PEL/IFE, probably every year. So keep after the Doc. Mayo Videos insist this is important. And that is the importance of this Connect program. A huge majority of human diseases will not be recognized by even the most competent doctors because they never see another patient with that issue. This means that those who experience these issues will be the best witnesses for any dX of rare diseases. So make careful notes, and keep all your discharge and dX papers along the way. Just advice. https://bit.Ly/1w7j4j8 (Amyloidosis Dossier)

Jump to this post

Thanks for your reply will follow up with that.

Martin Graham

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