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?

@celebrant

I have recently been diagnosed with this painful condition. At the moment I am on 10 mg. of prednisone and it has certainly helped but not completely reduced my pain. I am stiff and last week felt like I had literally torn my butt muscle from my upper thigh. I hit it with 20 mg for only one day and that certainly helped. I seem to be very tired and I am depressed about this because it stopped my active world in it's tracks. Do I have any co-sufferers on this board?

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Hi celebrant my name is Roland. I was diagnosed with PMR 1 year ago (March 2017) I started with 20 mg of pred. a slow process but one year later I am down to 5 mg/day I still have PMR but it is under control. The secret to all of this is stay positive & plenty of exercise. Do lot of walking & hit the gym as you do have to exercise those aching joints like I said it is not easy but you have to do it. My Dr. told me that only the person affected by this disease knows how he or she feels & how much pain one can tolerate before starting to tapering down from the pred. Go slow on the tapering only 1 to 2 mg at a time for at least a month if you feel okay try another 1 mg. You will know if it is to much if so increase it to your last dose. I have been on 5 mg now for 5 weeks & I know I am not ready to cut back any further right now. Like I said only the person affected knows how much pain one can tolerate before hitting the next threshold of cutting back. Another thing watch is the weight gain being on pred. myself I am lucky I have not gained any weight in the year that I have been on pred. maybe it is because of my exercise program I don't know. I eat the same foods as before & I do have my red wine every night. Good luck with all of this.

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@celebrant

I have recently been diagnosed with this painful condition. At the moment I am on 10 mg. of prednisone and it has certainly helped but not completely reduced my pain. I am stiff and last week felt like I had literally torn my butt muscle from my upper thigh. I hit it with 20 mg for only one day and that certainly helped. I seem to be very tired and I am depressed about this because it stopped my active world in it's tracks. Do I have any co-sufferers on this board?

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Hi @rolandhp — I'm happy to hear you are doing well with your PMR. My PMR may have went into remission again (I hope). I've been on prednisone for a little over a year starting at the 20 mg dosage. My first occurrence of PMR in 2007 took my 3 years to finally get off of prednisone. The second occurrence has been much easier – only a little over a year and I have been off of prednisone for 9 days. I still have a little pain and stiffness in my hands and arms in the morning but it gets better during the day. I was going to try 1/2 mg dose but I think if I can tolerate a little pain for awhile it may go away.

You have a great point on exercise – it's key to keeping the PMR under control.

Good luck to all of us PMR folks in dealing with Mr. Nasty.

John

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@celebrant

I have recently been diagnosed with this painful condition. At the moment I am on 10 mg. of prednisone and it has certainly helped but not completely reduced my pain. I am stiff and last week felt like I had literally torn my butt muscle from my upper thigh. I hit it with 20 mg for only one day and that certainly helped. I seem to be very tired and I am depressed about this because it stopped my active world in it's tracks. Do I have any co-sufferers on this board?

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I want to get to where you are. I know my RA cannot be cured. I am taking chemo when I said oi never would. I won't see pain doctor until May.

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@celebrant

I have recently been diagnosed with this painful condition. At the moment I am on 10 mg. of prednisone and it has certainly helped but not completely reduced my pain. I am stiff and last week felt like I had literally torn my butt muscle from my upper thigh. I hit it with 20 mg for only one day and that certainly helped. I seem to be very tired and I am depressed about this because it stopped my active world in it's tracks. Do I have any co-sufferers on this board?

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Hi @oregongirl, have you tried any kind of diet or changed eating habits to see if it would lessen your RA symptoms or help it? I just ran across a diet for RA on the Arthritis Foundation website. While it wasn't the total answer with my PMR and neuropathy I think it's helped with my overall health.

Nutrition Guidelines for People With Rheumatoid Arthritis:
https://www.arthritis.org/living-with-arthritis/arthritis-diet/anti-inflammatory/rheumatoid-arthritis-diet.php

John

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@celebrant

I have recently been diagnosed with this painful condition. At the moment I am on 10 mg. of prednisone and it has certainly helped but not completely reduced my pain. I am stiff and last week felt like I had literally torn my butt muscle from my upper thigh. I hit it with 20 mg for only one day and that certainly helped. I seem to be very tired and I am depressed about this because it stopped my active world in it's tracks. Do I have any co-sufferers on this board?

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Yes this is nasty but we have to keep going not give up. Another thing that I do is keep busy that is besides my exercise program. I am very involved with our local PD, Being a small department they appreciate the help I have been with them for 6 years I put in around 40 hours per month sometimes more. Keep moving is the secrete. The only joints that really bother me now is the fingers & wrist especially in the morning sounds familiar doesn't it, but it doesn't bother me I keep my mind busy & try to ignore the discomfort. At least it is not like it was a year ago thanks to your support.

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I haven't written for quite some time, but another issue has recently "cropped up". So, I was weaned down to 1 mg of Prednisone over a year and my pain came back. My doctor knows about my dislike of prednisone so she proposed that I take 10 mg. for 2 days (to "jolt" my system, I think were her words). She asked me if I remembered at what dosage during my weaning did I feel I could function the way I wanted to function with an acceptable pain level. I told her 5 mg. I have been taking this "maintenance dose" since then and I have my life back ! I can swim, do aerobics, yoga, garden, etc. YAY ! I do have some pain in my hip flexors and neck/shoulder area but it's definitely NOT like it was over a year ago ! She told me to be prepared to be on the 5 mg dose for a "while." Next appointment she hit me with the downside – prednisone is NOT good for bones. I have osteopenia anyway and she wants me to start taking the generic form of Fosamax because of the prednisone. I am a 70 year old small boned, white, caucasian woman – but VERY active (do lots of weight bearing exercise and eat a good diet). I have networked with friends and googled it to death. The doctor told me my bone density scans (every two years over the course of 16 years) show bone loss in my hips & spine of 22%. I picked up the script today still not sure I'm going to start taking it. One of the side effects is bone pain – sheez … I've been suffering from bone (joint) pain (as you all know) for the past year and a half : ( I guess the only positive is if I have bone pain, I can quit the Fosamax, cold turkey (according to the pharmacist I talked to). Has anyone out there had this situation or know anything about bisphosphonates & PMR? Another conundrum with PMR & bisphosponates is, how do you know if your bone pain is from the Fosamax or the PMR coming back?
Thank you for reading this lengthy post !!

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@olegraymare

I haven't written for quite some time, but another issue has recently "cropped up". So, I was weaned down to 1 mg of Prednisone over a year and my pain came back. My doctor knows about my dislike of prednisone so she proposed that I take 10 mg. for 2 days (to "jolt" my system, I think were her words). She asked me if I remembered at what dosage during my weaning did I feel I could function the way I wanted to function with an acceptable pain level. I told her 5 mg. I have been taking this "maintenance dose" since then and I have my life back ! I can swim, do aerobics, yoga, garden, etc. YAY ! I do have some pain in my hip flexors and neck/shoulder area but it's definitely NOT like it was over a year ago ! She told me to be prepared to be on the 5 mg dose for a "while." Next appointment she hit me with the downside – prednisone is NOT good for bones. I have osteopenia anyway and she wants me to start taking the generic form of Fosamax because of the prednisone. I am a 70 year old small boned, white, caucasian woman – but VERY active (do lots of weight bearing exercise and eat a good diet). I have networked with friends and googled it to death. The doctor told me my bone density scans (every two years over the course of 16 years) show bone loss in my hips & spine of 22%. I picked up the script today still not sure I'm going to start taking it. One of the side effects is bone pain – sheez … I've been suffering from bone (joint) pain (as you all know) for the past year and a half : ( I guess the only positive is if I have bone pain, I can quit the Fosamax, cold turkey (according to the pharmacist I talked to). Has anyone out there had this situation or know anything about bisphosphonates & PMR? Another conundrum with PMR & bisphosponates is, how do you know if your bone pain is from the Fosamax or the PMR coming back?
Thank you for reading this lengthy post !!

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Hi @olegraymare — I can relate. I also have osteopenia and the doc put me on (or wants me to take 1200 mg daily of calcium). I have been doing that but I'm looking for alternatives because I don't think calcium is the answer. I'm not really too active but try to do a daily exercise routine with 30 minutes on my recumbent exercise bike. I'm 74 and have only been off prednisone for 15 days for this second bout with PMR. I'm going to think long and hard before taking fosamax. I have no medical background or training but I also do not like taking any medication unless it's absolutely necessary…and I try to extract that tidbit of information from the doctors. I did find some info that may be helpful from the Harvard Medical School.

What's the story with Fosamax?
https://www.health.harvard.edu/diseases-and-conditions/whats_the_story_with_fosamax

Also, this one from the Journal of Bone and Mineral Research: An Essential Warning
http://onlinelibrary.wiley.com/doi/10.1002/jbmr.3359/full

John

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Thank you, John. As always, you have some great information to give us all ! I will read both of these.

Jan

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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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@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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Google Scholar (https://scholar.google.com/) is a great place to search for answers like your question. I just did a search for "prednisone cause bone loss" and the first link it found was:

Low-dose prednisone induces rapid reversible axial bone loss in patients with rheumatoid arthritis: a randomized, controlled study
http://annals.org/aim/article-abstract/706870/low-dose-prednisone-induces-rapid-reversible-axial-bone-loss-patients

Here's the search results link:
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=prednison+cause+bone+loss&btnG=

John

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@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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@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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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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@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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@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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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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@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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