1. < Polymyalgia Rheumatica (PMR)

Do CPR and SED rate numbers correspond to pain levels?

Posted by rnm @rnm, Feb 27 12:51pm

I was newly dxed with PMR about 3 weeks ago. I have had a good response to prednisone, started on 10 mg, now tapering with 8mg.
I recently repeated blood work and Sed rate went from 38 to 15 and CRP went from 32 to 8.4
Two questions
1. Have others had this kind of response? My internist thinks that we caught this very early, so maybe that's why?

2. I still have pain, especially early in the morning, not great, but manageable. By mid day to late afternoon, the pain is much less. Do CPR and sed rate numbers correspond to pain levels?

As always, thank you for your help.

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Mike | @dadcue | Mar 1 8:27pm

"I wasn't about to enter a long relationship with Prednisone, if there were options available to lower the dosage or eliminate it completely."
-----------------------
I didn't want a long term relationship with Prednisone but it ended up being 12 years. Prednisone was the "only option" when I was diagnosed.

Now I have a 4 year relationship with Actemra alone. It took me nearly 2 years to completely break off my relationship with prednisone after Actemra was introduced to me. Better late than never but I wasn't very happy with prednisone.

No guarantees Actemra will work for everyone but Actemra works for me.

REPLY
rnm | @rnm | Mar 1 9:28pm
In reply to @ropnrose "I was diagnosed with PMR and possible GCA in late July 2024. I started on 60..." + (show)
@ropnrose

I was diagnosed with PMR and possible GCA in late July 2024. I started on 60 mg. of Prednisone. Took that dosage for about 6 weeks, then started tapering down. I got down to 8 mg. the end of November 2024. I was still having joint aches and headaches. I decided to hold at 8 mg. rather than continue the taper. In late December, I had a full on flare. All my original symptoms returned, including the GCA symptoms (which had been non-existant for about 3 months). I went back up to 13 mg. the beginning of January 2025. Throughout my PMR journey, I've kept in close contact with my rheumatologist PA. Her 'assistant' is available via text. I can text a question or concern and usually hear back the same day or next morning. Her instructions for my taper include "as tolerated". I tell her where I'm at in my taper and if I am modifying it. I've learned a lot from the wonderful people in this forum and I feel empowered to control my health decisions.

After the 'holiday' flare, I told my rheumatologist PA that I wanted to start Actemra infusions. Since, I was having GCA symptoms and my inflammatory markers were high again, she had no problem ordering the infusions. She did mention that I'd 'only' been on Prednisone for 5 months. I wasn't about to enter a long relationship with Prednisone, if there were options available to lower the dosage or eliminate it completely. I did not want to get into a cycle of tapering and then having to increase the dosage to treat a flare, only to start all over again with tapering. I've read, where it happens often to PMR patients. I didn't want to be one of those people. I was a very active 69 yo before PMR. I was always operating at 110 mph. PMR knocked me down to 20 mph.

I've had my second Actemra infusion. Two weeks after the first one, I started feeling better. I did not have that constant feeling of malaise and fatigue. I am aware of the potential side effects from Actemra, but I have had enough side effects from the Prednisone, that I can count them on two hands. I haven't had a bone density, yet, to see what it's done to my bones. I'll take my chances with Actemra, knowing that there's a very good chance that I will be able to eliminate Prednisone in my life.

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Thank you for sharing your story. Very inspirational. I hope that all is going well for you on Actemara. I totally understand your pain and concern. I have been a very vital, active and healthy individual until being diagnosed with PMR. I am trying to maintain my barre and walking routines; however, I too have felt so exhausted and fatigued from the disease that it has been difficult to carry on at times. I still work two days a week in a professional capacity. It has been challenging.

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