1. < Polymyalgia Rheumatica (PMR)

NEW to PMR diagnosis

Posted by deborah57 @deborah57, Mar 6 7:30am

Hi, I am new here and just finding my way. I have some questions. I was recently diagnosed with PMR. I took the initial diagnostic dose of tapered Methylprednisolone and responded immediately so my Dr prescribed 5mg Prednisone while I am waiting to see a Rhematologist.
I haven't started taking it yet.
I am terrified of prednisone. I'm sensitive to drugs and have had numerous bad experiences with some of them. I'm healthy, eat clean, don't drink or smoke, get exercise daily.
Here are some of my questions:
I see a lot of discussion about people trying to taper off Pred. How long are people usually on it before starting to try and taper? If you have been on the drug for awhile, when and why would you decide to taper?
Does anyone have experience with inter muscular injections? Or the new Biologic KevZara?

thanks for any information!

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

mtr2601 | @mtr2601 | Mar 7 1:11pm

Welcome to the group, you will find lots of ideas, information and help here on this often difficultt journey. Your doctor has started you on a low dose of Prednisone which hopefully means you may have a milder form of the disease ? 5mg is unlikely to cause problems for you in the short term. Most of us had to start around 20mg which can be a big shock to the body. Its important to find a good Rheumatologist who will guide you, explain things clearly but also allow you to manage your own meds to some extent. Baseline screening is also important, bone scan, PET to rule out GCA and regular blood monitoring. Tapering from a high dose (if you have to go there) is more of an art than a science, no one size fits all but the key thing is to take it slow and listen to what your body is telling you. Good luck, we all wish for a smooth ride but the reality is that its a hard road.

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mtr2601 | @mtr2601 | Mar 7 1:28pm
In reply to @deborah57 "thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably..." + (show)
@deborah57

thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably won't respond to everyone, but I am reading your replies and feel so grateful for them.

One thing I have not read anything about so far is whether or not people have experienced any personality changes from the prednisone. I was recently on (discontinued now) some other medication (for something unrelated and totally different, not auto-immune) and that medication changed my personality: I was anxious, irritable, gained weight, and had fatigue and muscle weakness. After a year of that I said no more. In only two weeks after discontinuing I felt like myself again. I changed my diet instead, stopped alcohol, and brought the condition into better control without the medication

I am terrified Predinose will take away the pain but change my sense of self and how I am in the world. Or create worse physical problems. Everyone seems to hate being on it. I really, really like myself. I don't want a medication to take that away.

Thank you again for so much kindness.

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At the higher doses of 20mg or more, it is definitely possible to get very irritable, have mood swings, maybe strange euphoria, bursts of energy but you know that its Prednisone talking and you just have to ride that out to benefit from pain relief. It is not likely to change your personality in any permanent way !! At doses of around 10mg or less, personality changes are far less likely. However being in chronic disabling pain can certainly change your personality!!
If your pain levels are tolerable maybe Prednisone is not for you. If i wasnt completely disabled by the PMR i probably would not have turned to Prednisone, especially after learning from this group.

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Teri | @tsc | Mar 7 2:29pm
In reply to @deborah57 "thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably..." + (show)
@deborah57

thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably won't respond to everyone, but I am reading your replies and feel so grateful for them.

One thing I have not read anything about so far is whether or not people have experienced any personality changes from the prednisone. I was recently on (discontinued now) some other medication (for something unrelated and totally different, not auto-immune) and that medication changed my personality: I was anxious, irritable, gained weight, and had fatigue and muscle weakness. After a year of that I said no more. In only two weeks after discontinuing I felt like myself again. I changed my diet instead, stopped alcohol, and brought the condition into better control without the medication

I am terrified Predinose will take away the pain but change my sense of self and how I am in the world. Or create worse physical problems. Everyone seems to hate being on it. I really, really like myself. I don't want a medication to take that away.

Thank you again for so much kindness.

Jump to this post

Hi @deborah57, I had PMR for a year, undiagnosed, pain on a scale of 10 out of 10 throughout my entire body. Then stranger symptoms started. A physician friend got involved, and advised me to push my PCP for specific blood tests. Turns out I had Giant Cell Arteritis (GCA). I was put on 40 mg of prednisone daily and tapered every two weeks. The prednisone at that high dosage made me super energized, talkative, hungry and unable to sleep more than a few hours a night. PMR and GCA made me anorexic and I lost about 15 lbs. My hair really thinned out.
My rheumatologist advised me on the taper and ordered monthly CRP tests for inflammation. My taper went well and I was off prednisone in about a year and a half, no flareups. In October, I will have been off it for two years.
I returned to my usual personality as the taper diminished and now my hair is as thick as it was before.
My mother-in-law also had GCA and was terrified to take prednisone, but the doctor told her she could have a stroke or go blind without it. She lived to be nearly 100.
While prednisone has its drawbacks, it can also be lifesaving. Imagine the sufferings of thousands, maybe millions, of people before us who had PMR and GCA (first identified in the 10th century in Baghdad) before the development of prednisone and discovery of its usefulness in treating PMR and GCA.
You will get through this!

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dstuber | @dstuber | Mar 7 2:39pm
In reply to @pb50 "Finding you have a chronic autoimmune disease is the worst. I am 12 years into a..." + (show)
@pb50

Finding you have a chronic autoimmune disease is the worst. I am 12 years into a diagnosis of Rheumatoid Arthritis. I’ve had to take prednisone a couple of times for flares. I was started at 20mg and tapered down and off over 16 days. But my question is .. Is 2mg therapeutic?

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Yes, it is for me. I wake up with extreme pain in my fingers and wrists as well as the usual pain in my hips and lower back. After 2 mgs. of Prednisone, the pain is gone in an hour. Yes, normally our pain is worst when we wake up and then tapers off, but this has me living pain free in my hands and wrists 15 of my 16 waking hours.

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1 reply
pb50 | @pb50 | Mar 7 4:58pm
In reply to @deborah57 "thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably..." + (show)
@deborah57

thank all of you so much for your welcoming replies....I'm bit overwhelmed atm so I probably won't respond to everyone, but I am reading your replies and feel so grateful for them.

One thing I have not read anything about so far is whether or not people have experienced any personality changes from the prednisone. I was recently on (discontinued now) some other medication (for something unrelated and totally different, not auto-immune) and that medication changed my personality: I was anxious, irritable, gained weight, and had fatigue and muscle weakness. After a year of that I said no more. In only two weeks after discontinuing I felt like myself again. I changed my diet instead, stopped alcohol, and brought the condition into better control without the medication

I am terrified Predinose will take away the pain but change my sense of self and how I am in the world. Or create worse physical problems. Everyone seems to hate being on it. I really, really like myself. I don't want a medication to take that away.

Thank you again for so much kindness.

Jump to this post

What Tragedy @deborah57 ! I mean the only upside to me of having to supplement my RA infusion with Prednisone is that I become absolutely euphoric! I have energy and a positive outlook and hope and all things good. My pain goes away - life is wonderful!! I’m glad I didn’t discover that in my 20’s or my bone density would be shot. At 73 I am disciplined enough to not even ask unless it is merited. But I certainly don’t regret the need to.. except For the appetite increase. 🙂

REPLY
pb50 | @pb50 | Mar 7 7:01pm
In reply to @dstuber "Yes, it is for me. I wake up with extreme pain in my fingers and wrists..." + (show)
@dstuber

Yes, it is for me. I wake up with extreme pain in my fingers and wrists as well as the usual pain in my hips and lower back. After 2 mgs. of Prednisone, the pain is gone in an hour. Yes, normally our pain is worst when we wake up and then tapers off, but this has me living pain free in my hands and wrists 15 of my 16 waking hours.

Jump to this post

That’s amazing. Great for you but amazing to me. I’m not sure 2mg would trigger anything in me. Did you start there or Taper down to there?

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jrp11948 | @jrp11948 | Mar 8 8:14am

Yes, all of the above. Crazy dreams, muscle weakness and wasting, anxiety. I’m working through the changes in me, but knowing they are from the meds is a little help. I’m exercising more to delay the muscle problems. You have to keep moving, and moving more than you used to.
My doc said it best, “ live your life”.

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wilmingtonemperor | @wilmingtonemperor | Mar 9 8:44am

Hi, so I was diagnosed with PMR in Jan 23. Put on 20mg of prednisone gradually reducing to 2.5 in October. Went on Kevzara at that point with the injector pen every 2 weeks. Came off prednisone entirely in Jan 24 and off Kevzara last month. I feel fine and if I feel a little stiff I take a Tylenol. Kevzara is great but you need to know the pros and cons. Drugs.com has a good summary.
Good luck

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nyxygirl | @nyxygirl | Mar 10 9:57am

@deborah57 i suggest learning more about PMR from this site :
https://www.pmrandil6.com/. I agree with @johnbishop and others about keeping a pain journal -- i tracked the stiffness/pain for 3 times a day and both shoulder and hip girdle!

sorry to ply you with more homework/reading but .......
i posted this awhile back --
https://connect.mayoclinic.org/comment/1012486/

and this when i first found this great connect group and all the helpful commenters :
https://connect.mayoclinic.org/discussion/can-we-make-pmr-funny-can-we-fight-the-immune-cells-involved/

So turn your fear around --PMR has immune-cell-mediated pathways thus the Prednisone or a targeted biological . Stay positive : )

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