Do I really have PMR?

Posted by englerbarb @englerbarb, Aug 31, 2021

Hi. First of all, I’m so glad I’ve found this group! I was diagnosed with PMR 4 days ago and started taking 20mg Prednisone 3 days ago. I already feel so much better and am hoping for no, or few side effects. I’m wondering if any of you who have PMR had normal inflammatory markers at the time of your diagnosis. I found out today from my doctor that mine are normal, so she thinks it might be something other than PMR. Do any of you have experience with this too? I’ll be going back to the lab to get more testing done in another week and a half. If I don’t have PMR, why would the prednisone work for my pain and what else could it be other than PMR?

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

aspine | @aspine | Dec 18, 2021

In reply to @kmeikle1 "Your sed rate and crp will likely be normal while you are taking prednisone." + (show)

Okay, so this is the answer I've been looking for! I didn't know if that was the usual outcome of being on the pred. or not. So, my numbers are now normal BECAUSE I'm on the prednisone, and if I got off of it the numbers will go back up unless I'm in remission?

kmeikle1 | @kmeikle1 | Dec 18, 2021

Correct. And unsolicited advice: Ibuprofen works best for me too though I rarely use it because most recommend not using ibuprofen (or any NSAID) if you're taking prednisone. Taking both increases the likelihood of GI issues.

judyjh | @judyjh | Jan 3, 2022

In reply to @ltta "Hi englerbarb, Yes, my inflammation markers are pretty much within the normal range, both ESR and..." + (show)

Hi Itta-
I will be following this thread, as I have no markers for PMR, but was crippled with "whatever it was" until prednisone. Able to keep the dosage low at 5.5 mg with added methotrexate. Now I imagine that my markers would stay low with this treatment, but never did have an elevated ESR or CRP. Somewhat grudgingly, my rheumatologist put PMR on my record, but she still looks at me like she isn't sure.
So, you and ebglebarb sound like me. I have been on prednisone for a 15 months, methotrexate for 10 months, and have less shoulder and hip pain, but troublesome hamstring and knee pain that makes it hard to bend the knee. As I said in another thread, I ended up with bilateral carpal tunnel release, which was a huge relief. Hope you are feeling better.

milld835 | @milld835 | Jan 4, 2022

I am happy to say that my neurologist started me on Prednisone today - yay! Finally. 20 mg per day. Then blood work after 10 days to ensure CRP levels are decreasing. So we shall see...

microbe1943 | @microbe1943 | Jan 4, 2022

In reply to @milld835 "I am happy to say that my neurologist started me on Prednisone today - yay! Finally...." + (show)

GLAD FOR YOU!!! thanks for the notice. If you know what your CRP/SED rate was will you share?

milld835 | @milld835 | Jan 4, 2022

In reply to @microbe1943 "GLAD FOR YOU!!! thanks for the notice. If you know what your CRP/SED rate was will..." + (show)

At end of Nov. CRP was 33.6. On Dec. 21 it was 42.3.

microbe1943 | @microbe1943 | Jan 4, 2022

In reply to @milld835 "At end of Nov. CRP was 33.6. On Dec. 21 it was 42.3." + (show)

Okay. Thanks. Pretty significant elevation. My recently was 47 and I had been on prednisone for 3 months. It was not elevated when first diagnosed but sed rate was around 50. It rose to 100 in Novemeber when the CRP was 47. That is now back to normal but sed rate is still 73. Confusing really.

milld835 | @milld835 | Jan 4, 2022

In reply to @microbe1943 "Okay. Thanks. Pretty significant elevation. My recently was 47 and I had been on prednisone for..." + (show)

Yes I agree, but hopefully you will stop roller coasting soon. I don't know what SED rate means. 🙂

milld835 | @milld835 | Jan 5, 2022

I am happy to that after one dose of Prednisone yesterday, I have started to unlock. First noticed getting out of bed and able to reach to the nightstand, get the covers off (with my arms) and lift myself out of bed (with my arms). Do the bathroom thing with my dominant arm and hand. I am over the moon elated.

norieaugustine | @norieaugustine | Jan 6, 2022

In reply to @milld835 "I am happy to that after one dose of Prednisone yesterday, I have started to unlock...." + (show)

Yes, I was very impressed with how much and how quickly Prednisone helped me. Now you will begin the journey many of us are on -- where we try a small amount at a time to lower the dose. You may not be ready for that right away but it's something we all seem to go through. I went from 20 mg to 15 mg to10 mg to 7.5 mg over a period of many months. I am now stuck at 7 mg and would really like to go lower but have too much pain if I do. It's always a question of how much pain is okay with a lower dose and how much pain is too much. I will be trying 6 or 6.5 again soon. I don't mind some pain when I go to a lower dose but sometimes it's too much. Hope it works out for you.