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?

@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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@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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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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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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@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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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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@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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Thanks for your reply will follow up with that.

Martin Graham

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@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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Just read the article and have had symptoms of pain and cramping when taking too much sugar like carbonated soft drinks Coca cola or Pepsi. Will do some study for my thesis on Proteabacteria Phylum Group Myeloperoxidase Leukocytes Sucralose Maltodextin Immune Cell Lipoplysaccharides Antigens and posted link to the study on my facebook page

/martin.graham.5811

Thanks
Martin Graham

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Hope everyone is having a good day. Wish we were all pain free.
After 2 1/2 years I am now on 2 mg of prednisone daily. I am feeling bewtter and would say have improved 90%. I can say that today, I don't know what tomorrow will bring.
I have not had any luck going down to 1 mg and I like so many of you don't want to have a relapse and have to return to 5mg or higher.
Last time I did get to 1 mg and so much pain came back that I did have to increase back up to 5.
I'm wondering if at 60 yrs old I am going to have to take 2 mg a day for many years, if not ongoing.
I know the side effects are bad, but do we think the side affects of osteporosis would be devastating at 2 mg?
I do have a small fatty pocket at the base of my neck. I have read that this is a side effect.
I am taking a 50 mg of tramadol every night. I don't like that I am in that habit, but I feel I sleep better. It is an addicting medication though. It may not be a strong pain killer, but still addictive.
I don't think my rheumatoid Dr knows a lot about PMR, nor does anyone that I can find.
My wishes are for a good day for all that are dealing w PMR. Know that you are not alone and you can get better.
Yes, prednisone is a wonder drug for this illness, but no medication comes wo side effects, sadly.
God Bless,
Barbara Rene'

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@barbararene

Hope everyone is having a good day. Wish we were all pain free.
After 2 1/2 years I am now on 2 mg of prednisone daily. I am feeling bewtter and would say have improved 90%. I can say that today, I don't know what tomorrow will bring.
I have not had any luck going down to 1 mg and I like so many of you don't want to have a relapse and have to return to 5mg or higher.
Last time I did get to 1 mg and so much pain came back that I did have to increase back up to 5.
I'm wondering if at 60 yrs old I am going to have to take 2 mg a day for many years, if not ongoing.
I know the side effects are bad, but do we think the side affects of osteporosis would be devastating at 2 mg?
I do have a small fatty pocket at the base of my neck. I have read that this is a side effect.
I am taking a 50 mg of tramadol every night. I don't like that I am in that habit, but I feel I sleep better. It is an addicting medication though. It may not be a strong pain killer, but still addictive.
I don't think my rheumatoid Dr knows a lot about PMR, nor does anyone that I can find.
My wishes are for a good day for all that are dealing w PMR. Know that you are not alone and you can get better.
Yes, prednisone is a wonder drug for this illness, but no medication comes wo side effects, sadly.
God Bless,
Barbara Rene'

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Hello @barabarene — I'm glad you are feeling better. Part of the battle with PMR is to stay as active and exercise as much as you can without over doing it. I've been off of prednisone since the end of February and I do have some aches and pains but nothing that is bad enough to go back on prednisone yet. This was my second round with PMR. The first time it took me 3 years to taper off then it went into remission for 6 years. This second time around hasn't been quite as bad. I was on prednisone for about a year and half or so. The thing different about my first round with PMR was diet and exercise. Due to other health issue problems, mainly my small fiber peripheral neuropathy, I started looking into nutrition and exercise which I think has played some part with the PMR. My main diet changes were to eat less red meat and lots more fruit and vegetables paying attention to portion control which was a big problem for me. I am by no means an exercise nut. I have a recumbent exercise bike that I ride for 30 minutes 4 to 5 days a week when I first get up in the morning. I think this helps with my leg strength and gets me loosened up to start my day. Then I try to do some mild exercise with hand weights once or twice a day if I get an opportunity. It has helped me lose some weight and limited the weight gain I had with my first round of PMR.

Don't give up on tapering off of prednisone. You might want to try to split the 1 mg tablet and try reducing dosage to 1-1/2 mg to see how you feel. This is what I did when I reached an impasse trying to taper down. Also, if you aren't able to do taper off, it's better than the pain.

Hoping for a pain free day for you and all my PMR friends.
God Bless,
John

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PMR is one of those out of sight out of mind things when I'm not in any pain. I know PMR affects us all a little different so I was wondering if there is any research being done. I went to my friend Google Scholar and found the following research article from the website official Journal of the Italian Society for Rheumatology which is an interesting article on PMR. You have to download the PDF file to read the complete article.

Perspectives and unmet needs in polymyalgia rheumatica. Providing the fundamental framework for the development of new treatment regimes in polymyalgia rheumatica
http://www.reumatismo.org/index.php/reuma/article/view/1070

John

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@barbararene

Hope everyone is having a good day. Wish we were all pain free.
After 2 1/2 years I am now on 2 mg of prednisone daily. I am feeling bewtter and would say have improved 90%. I can say that today, I don't know what tomorrow will bring.
I have not had any luck going down to 1 mg and I like so many of you don't want to have a relapse and have to return to 5mg or higher.
Last time I did get to 1 mg and so much pain came back that I did have to increase back up to 5.
I'm wondering if at 60 yrs old I am going to have to take 2 mg a day for many years, if not ongoing.
I know the side effects are bad, but do we think the side affects of osteporosis would be devastating at 2 mg?
I do have a small fatty pocket at the base of my neck. I have read that this is a side effect.
I am taking a 50 mg of tramadol every night. I don't like that I am in that habit, but I feel I sleep better. It is an addicting medication though. It may not be a strong pain killer, but still addictive.
I don't think my rheumatoid Dr knows a lot about PMR, nor does anyone that I can find.
My wishes are for a good day for all that are dealing w PMR. Know that you are not alone and you can get better.
Yes, prednisone is a wonder drug for this illness, but no medication comes wo side effects, sadly.
God Bless,
Barbara Rene'

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Dear Everyone: This is Peach here with good news. With 2 bulging disks, (lumbar spine) a pinched nerve affecting the sciatic nerve going down the entire right side of the leg to the toes I went to a chiropractor I knew of. Well. GUESS WHAT: AFTER GOING TO THE DOCTOR FOR 6 TIMES THE HORRIBLE, HORRIBLE PAIN IS GONE. GONE, GONE. The pain in the knee (also right side) is still there. The miniscus but not torn. I am going to a doctor for this tomorrow, Friday. And while all this is going on I cannot walk on my right foot without bad pain. So here we go again. Still on this pain merry go round. There are at least three plantar fibromas on my feet. Went to a doctor for this. Very,very painful injection. Will be going back for more. I keep singing inside my head "help", "help", "help". Knowing my health record all I can think of is Amyloidosis. When I put my mind into an area where it goes to the pains of other people who are dying in great pain with cancer I feel grateful for my life. Also, I must still help other people whenever I can. It is good for you and for the ones you are helping. Thinking of "HOPE". Love to all and kisses to chiropractors!

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John, I read the link you posted and found it fairly technical. Have you been able to figure out the bottom line. ie new treatment regimes etc. I appreciate all you do . Alanbruce

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@alanbruce

John, I read the link you posted and found it fairly technical. Have you been able to figure out the bottom line. ie new treatment regimes etc. I appreciate all you do . Alanbruce

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Hi Alan (@alanbruce), I think the article is just laying the framework for clinical trials for PMR (IMHO). I don't have a medical background or training and it is sometimes hard for me to really understand some articles like this. I did find another one about a new drug called Tocilizumab being used for PMR that sounds interesting if the side effects are not as bad as prednisone.

A Promising Treatment for Polymyalgia Rheumatica (you have to register for free account to read the article)
https://www.medscape.com/viewarticle/871513

Actemra (Tocilizumab Injection) side effects
https://www.rxlist.com/actemra-side-effects-drug-center.htm

John

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Cautiously hopeful – after 15 months I am down to 7mg prednisone and recently started on Methotrexate as symptoms were reappearing. So far things are improving apart from some sleeplessness at night. Would be interested to hear if anyone else is on Methotrexate.

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Hi all. I think it's safe to say that everyone sharing in this discussion has been greeted by @johnbishop. He seems to always be online to offer information, give support, connect you with others, and to share a laugh of two. Ever wonder what makes John tick and what he does when he's not on Connect? Now you can.

Check out the Member Spotlights and read the latest story about John.
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@olegraymare mare I was diagnosed with this illness for a long time, but thy did nothing to treat it. I stopped taking prednisoneon a regular basis years ago after it gave me diabetes. I will take a short course of 5 days, but only if there is no choice. They just basically ignore the PMR. I don't thnk that they know what to do.except to treat the pain. My reg doc is the best doc I have ever had. I appreciate so much sll that he tries to do for me.My wish is that everyone good find someone like him. If I do not treat the pain in my muscles every day, I cannot walk very far and cannot stand for more than a few minutes. if I treat it I do okay taking short easy walks and functioning around home and doing some minimal gardening. I have bad shoulder problems so have to have help.Please tell me more about the PMR. It was never clearly explained to me. I’m so glad that you are posting. thank you.

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