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?

Hello everyone.
I am now on 3mg of prednisone. I was on 1 1/2 mg and was in so much pain. Now I am doing well and am also taking tramadol twice a day.
I am looking forward to the day this will go in remission. I am 59 years old and one thing I have found out, (I work from 5am to 11am), after work I have to rest at least 2 hours a day or the pain comes on full force. I am thankful for the good days.
Hang in there.
This can be so depressing.
Barbararene’

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@barbararene

Hello everyone.
I am now on 3mg of prednisone. I was on 1 1/2 mg and was in so much pain. Now I am doing well and am also taking tramadol twice a day.
I am looking forward to the day this will go in remission. I am 59 years old and one thing I have found out, (I work from 5am to 11am), after work I have to rest at least 2 hours a day or the pain comes on full force. I am thankful for the good days.
Hang in there.
This can be so depressing.
Barbararene’

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Hi @barbararene — it can be a little depressing but attitude can help and you definitely have the right attitude. One day at time, one step at a time…hang in there! My first round with PMR it took me 3 years to trying to get off of prednisone until the PMR finally went into remission. I’m hoping my second time with PMR goes a little better. I’m now down to 2 mg from 20 mg dosage and it’s only been a little less than a year.

John

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@barbararene

Hello everyone.
I am now on 3mg of prednisone. I was on 1 1/2 mg and was in so much pain. Now I am doing well and am also taking tramadol twice a day.
I am looking forward to the day this will go in remission. I am 59 years old and one thing I have found out, (I work from 5am to 11am), after work I have to rest at least 2 hours a day or the pain comes on full force. I am thankful for the good days.
Hang in there.
This can be so depressing.
Barbararene’

Jump to this post

Sorry to hear about your set back but hang in there it will get better. One good thing & that is your Dr. is trying to keep the Prednisone at a minimum. Yes he could have prescribed a higher dose but as you well know pred. can be very dangerous if abused. Yes this PMR can be very depressing but don’t let it get you down try & keep up your daily activities & try to stay in shape this will help keep your mind off the illness. You can beat this believe me.

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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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@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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Thanks for listing all the PMR related discussions on Connect, @johnbishop

@celebrant, I add my welcome. I have merged your message with the discussion called "PMR Anyone?" so that you can additional members talking about Polymyalgia Rheumatica.

Are you able to do any form of activity to help the stiffness?

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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 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.

REPLY
@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

REPLY
@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.

REPLY
@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

REPLY
@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?

Jump to this post

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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