New to PMR - Are Monthly Labs and Check-ups normal?

So are you saying just once a month you’re simply have to get your CRP checked???

WE ARE NEW TO THIS, AND I’M JUST WONDERING BECAUSE I ASKED EVERYBODY HAS MENTIONED THE FINANCES. 😉🤷🏻‍♀️

Hi @ctipmarie, my Rheumatologist put me on 40 mg of prednisone for Giant Cell Arteritis to start. After a year and a half, I tapered off it completely (that was a few months ago). While being treated, I saw him every three months and had a monthly CRP test to measure inflammation. If anything unusual happened I contacted him by email, but my taper was pretty smooth. I wish you both the best!

Thank you so very much!!’ I really appreciate you helping. Educate me as to what I might expect.!

God bless you -have a great weekend! 😉🙏🏻

I have had PMR since 2019, December. Brought on by the flu vaccine. I was off of prednisone for a couple of months and had a flare up so am back on it, but only mg a day for a few months and now on 2 mg a day and may be for a very long time, not sure. I see my rheumatologist 2 x a year now, but in the beginning it was 3 times a year with blood work every couple of months. When I had the flare up last October, my blood work was normal for the inflammation markers so yes, that can be normal too. I was told they go by how you feel, not just the tests. Since I'm on Medicare, with my plan, I don't ever pay for anything, so fortunate in that respect. Good luck.

I was diagnosed in 2020 with PMR by my family doctor. He treated me for a time, changing my dose weekly. Told him repeatedly I did not want to be on Prednisone for a long time, to which it appeared he turned a deaf ear.
Next went to a Rheumatologist with almost the same treatment, except monthly changes and an insistence on splitting the does in half and taking morning and evening. I told the doc I wanted off and so I gradually reduced the dose to 3 or 4 mg/day. I could not operate like that, so back on at 10 or 15mg and taper down at 1mg/month. Seems that is all I have been doing. Finally in May I said I am not dropping for the summer, I want to feel good enough to do things. Prednisone has given me thin skin. My arms have blotches all over. A slight bump or brush and my skin is ripped and I am bleeding. Finally at my insistence for something else, I am being evaluated for methotrexate. Looking for experiences others have had with PMR. The two markers I get tested get tested for every two months, CRP and Sed Rate, almost never reflect my pain/discomfort level. The only time those results were high is when I was first diagnosed. I think it a waste of time even doing them.

Steroids were life saving for me. I stuck with the prescribing schedule despite side effects and gradually tapered to 0. I haven't had any more attacks and sure don't want to; it was the most painful condition (felt only in my head and neck) I ever had---even topping childbirth!
I trust you are able to secure a treatment plan that works for you and that you see it through.

I am concerned that I am on too many steroids. I am also on one or two steroids for ear and sinus condition. Probably adds to the "thin skin" issue. I am 74, still like to work on things where one gets scraps and bruises. My scraps and bruises look much worse than the average person even though I wear protective sleeves and gloves. I have had skin tears through gloves and the sleeves and it is frustrating.

Hello @chzuck, I see that you have already met another new member @kipster and I would like to welcome you both to Connect. @chzuck you will notice that we moved your post to this existing discussion on the same topic so that you can learn what others have shared. If you click the link below it will take you to the top of the discussion:
--- New to PMR - Are Monthly Labs and Check-ups normal?: https://connect.mayoclinic.org/discussion/doctor-schedule/.

I've had 2 occurrences of PMR but it is currently in remission. I was started at 20 mg prednisone for both and my rheumatologist gave me a suggested tapering schedule but also reminded me that the pain needs to be controlled and not to taper if I'm having too much pain. The first occurrence of PMR in 2007 took me 3 and half years to taper off and I stayed in remission until 2016 when it reared it's ugly head again. It took me 1 and half years to taper off the second time around which I think had a lot to do with changing my lifestyle some, more exercise without overdoing it and eating healthier diet to help with inflammation.

The skin tears is definitely frustrating. I also have thin skin that bruises and tears/bleeds easily but I'm not sure it's the prednisone for me since I wasn't on it for a long period of time but then I'm 80 and think it might have something to do with age for me.

@chzuck I found keeping a daily log with my level of pain when I woke up along with my dose of prednisone for the day helped me determine whether or not I should taper down or back up 1/2 of my previous taper down. My rheumatologist recommended it and it did help me. Do you keep a daily log?

@kipster It's great to hear Mr. Ugly is back in his box for you and you don't have to take prednisone anymore. Do you mind sharing how long it took you to taper off of prednisone?

I have not kept a log, but that is a good idea. It is good to read of the experiences of others. I am not sure how much expertise my doctor has and have thought of changing. I missed a good opportunity when she was off for several months maternity leave.
Was your pain level reflected in your marker checks? Most of the time my pain level is not.

My pain relief was within an hour or two of taking my dose of prednisone and kept me pain free until the next morning when I would wake up with the stiffness and some pain but nothing like before starting the prednisone. I used my own pain scale of 0 to 10 when I woke up and it was usually less than a 2 and went away after my morning dose of prednisone. If it was greater than a 2 level and I was due to taper down that day, I didn't do the taper. Instead, I waited a day or so at the same dose to see if I had just overdone any activity. If it didn't get better, I bumped my dose up half of my previous taper so that it wasn't like going back to day one. There is another discussion you might find helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/