1. < Polymyalgia Rheumatica (PMR)

Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

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

Erika | @erikas | Feb 18, 2021

@rkprice Welcome to Mayo Clinic Connect.

Four taper attempts seems like a lot. Members like @kimh @irishdancer @layla7511 @phoenix0509 @jfarreast @pringsmuth @virginiaj @lumberjill @karinaph @sharenb .@phoenix0509 @dmsbronch may be able to offer support.

May I ask what your provider told you about the medication tocilizmab?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 18, 2021
In reply to @rkprice "I was diagnosed with PMR two and a half years ago at age 71. Started out..." + (show)
@rkprice

I was diagnosed with PMR two and a half years ago at age 71. Started out at 15 mg of Prednisone but had to go up to 25 to get it under control. After nine months my RA doc said he wanted to start me on Methotrexate (12.5 mg weekly) so I could begin to get off the Prednisone. I had three failed tapers from which I had to increase Prednisone back up a few mgs and start again. With each failure my methotrexate was increased. I am now on my fourth taper and am at 3.5 mg per day of prednisone going down 1/2 mg per month and 20 mg of methotrexate weekly. I have very mild pmr symptoms in the am which is when I take my meds and usually no symptoms by mid day. It has been a long slog but I feel like I am making progress. Another MD suggested I talk with my RA doc re: Tocilizmab. Any have any thoughts about this or experience with it?

Jump to this post

Hello @rkprice, Sorry to hear you have been struggling with your PMR and tapering off of prednisone. Prednisone was the only drug I used with both of my occurrences of PMR but it was tricky tapering off and you are doing it the best way - slow and easy. I started both occurrences at 20 mg prednisone and took 3-1/2 years to taper off the first time and 1-1/2 years the second time. There is another discussion where you learn what others have shared about their experience with Tocilizumab.

- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/

One thing that really helped me for both occurrences of PMR was keeping a daily pain/dosage log for prednisone. Did your RA doc provide a tapering schedule for you?

REPLY
1 reply
kimh | @kimh | Feb 18, 2021
In reply to @legendts "Reading the general information and side effects of Prolia the comment was if you have a..." + (show)
@legendts

Reading the general information and side effects of Prolia the comment was if you have a latex allergy then consult your doctor or rheumatologist. I made the assumption that possibly a carrier in the injection could be latex. I know earlier fluvax injections used a latex carrier as I had to get a script and purchase my fluvax from the pharmacy. No longer need to with the Fluad Quad though.

Jump to this post

I didn't know this. I don't have an allergy to latex, but what the heck did I just get injected in my arm today??? lol....

REPLY
Jeff Down Under | @legendts | Feb 18, 2021

Hopefully something to help you....😊

REPLY
kimh | @kimh | Feb 18, 2021
In reply to @erikas "@rkprice Welcome to Mayo Clinic Connect. Four taper attempts seems like a lot. Members like @kimh..." + (show)
@erikas

@rkprice Welcome to Mayo Clinic Connect.

Four taper attempts seems like a lot. Members like @kimh @irishdancer @layla7511 @phoenix0509 @jfarreast @pringsmuth @virginiaj @lumberjill @karinaph @sharenb .@phoenix0509 @dmsbronch may be able to offer support.

May I ask what your provider told you about the medication tocilizmab?

Jump to this post

Oh @erikas how I hate to be one of the examples....for something bad lol!!! Actually, I have not tapered down from PMR, but from Mesenteric Panniculitis (MP). Prednisone is a great drug. It really helped me in 2014, but this bout has not been so effective in that when I am able to try to taper down because of the MP, my PMR acts up. If on too high a dose for a long period of time, the esophageal spasms return....not to mention weight gain (I don't think it's ever going down!), moon face, facial hair, mood swings, insomnia etc. etc. I am curious as to this tocilizmab. Does it replace the prednisone or the methotrexate? Or is it a new accompaniment?

REPLY
1 reply
Erika | @erikas | Feb 18, 2021
In reply to @kimh "Oh @erikas how I hate to be one of the examples....for something bad lol!!! Actually, I..." + (show)
@kimh

Oh @erikas how I hate to be one of the examples....for something bad lol!!! Actually, I have not tapered down from PMR, but from Mesenteric Panniculitis (MP). Prednisone is a great drug. It really helped me in 2014, but this bout has not been so effective in that when I am able to try to taper down because of the MP, my PMR acts up. If on too high a dose for a long period of time, the esophageal spasms return....not to mention weight gain (I don't think it's ever going down!), moon face, facial hair, mood swings, insomnia etc. etc. I am curious as to this tocilizmab. Does it replace the prednisone or the methotrexate? Or is it a new accompaniment?

Jump to this post

@kimh I didn't tag you for something bad. I tagged you because you have discussed the topic or similar. You are giving me too much credit. There is no way I can remember most member details unfortunately. We have over 100,000 members. I hope you hear the humor in my tone.

Tagging just puts feelers out there, in the hope that someone can offer information and/or emotional support. If I ever tag you and you don't feel you have anything to offer, feel free to ignore the tag and please accept my apology.

REPLY
1 reply
rkprice | @rkprice | Feb 18, 2021
In reply to @erikas "@rkprice Welcome to Mayo Clinic Connect. Four taper attempts seems like a lot. Members like @kimh..." + (show)
@erikas

@rkprice Welcome to Mayo Clinic Connect.

Four taper attempts seems like a lot. Members like @kimh @irishdancer @layla7511 @phoenix0509 @jfarreast @pringsmuth @virginiaj @lumberjill @karinaph @sharenb .@phoenix0509 @dmsbronch may be able to offer support.

May I ask what your provider told you about the medication tocilizmab?

Jump to this post

My neurologist suggested I speak to my RA doc re: tocilizmab. Said he had read good things about it but I should be guided by my RA.

REPLY
rkprice | @rkprice | Feb 18, 2021
In reply to @johnbishop "Hello @rkprice, Sorry to hear you have been struggling with your PMR and tapering off of..." + (show)
@johnbishop

Hello @rkprice, Sorry to hear you have been struggling with your PMR and tapering off of prednisone. Prednisone was the only drug I used with both of my occurrences of PMR but it was tricky tapering off and you are doing it the best way - slow and easy. I started both occurrences at 20 mg prednisone and took 3-1/2 years to taper off the first time and 1-1/2 years the second time. There is another discussion where you learn what others have shared about their experience with Tocilizumab.

- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/

One thing that really helped me for both occurrences of PMR was keeping a daily pain/dosage log for prednisone. Did your RA doc provide a tapering schedule for you?

Jump to this post

Yes, re: RA providing scheduling. We were more aggressive at the start of tapering (and I think my RA had a strong belief the methotrexate could fairly quickly impact my need for prednisone) which probably contributed to the first couple of tapering attempts not going that well. We talk every three months or so and she encourages me to slow the tapering if I feel the PMR is surging. I was glad to get below 10 - I began to be able to get the extra weight off and said good bye to my swollen face. Thanks for your interest and the link to the Tocilizumab discussion.

REPLY
kimh | @kimh | Feb 18, 2021
In reply to @erikas "@kimh I didn't tag you for something bad. I tagged you because you have discussed the..." + (show)
@erikas

@kimh I didn't tag you for something bad. I tagged you because you have discussed the topic or similar. You are giving me too much credit. There is no way I can remember most member details unfortunately. We have over 100,000 members. I hope you hear the humor in my tone.

Tagging just puts feelers out there, in the hope that someone can offer information and/or emotional support. If I ever tag you and you don't feel you have anything to offer, feel free to ignore the tag and please accept my apology.

Jump to this post

Hi @erikas ! I was kidding! No apologies necessary at all! It's hard to see my smile through the keyboard, unfortunately!!! I hope you hear can also hear the humour in my tone as well! Maybe we need to add emojis lol!!!

REPLY
1 reply
kristem2020 | @kristem2020 | Feb 18, 2021
In reply to @johnbishop "Hi @kristem2020 - I'm not sure if your question was directed to me or if you..." + (show)
@johnbishop

Hi @kristem2020 - I'm not sure if your question was directed to me or if you were asking @dudeofdad. My first occurrence of PMR did not start after getting a flu shot.

Jump to this post

Thank you for that confirmation. I’m tapering down now. I just started back with my trainer and I feel it helps

REPLY
View MoreView Less
Please sign in or register to post a reply.