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

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?

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.

@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?

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?

@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?

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?

@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.

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.