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

Hi @jabrown0407, in reading your post, I noticed that you have anemia. This may be of interest to you: "Normocytic, normochromic anemia and thrombocytosis occur in approximately 50% of pateients with These disorders [ PMR and GCA] and are excellent guides to the state of inflammation." Source - Cecil and Goldman's Textbook of Medicine. I had anemia, but it resolved when I started taking prednisone.

@tsc, yes I find that quote fascinating. Mainly because I saw three hematologist, one gastroenterologist, three infectious disease doctors, one endocrinologist, three rheumatologist and I am sure a few more doctors all chasing around trying to find the cause and not a one of them ever mentioned that anemia is a known problem associated with PMR. Thank you so much, and to think it is found in as many as 50%, that alone is mind boggling. I can not thank you enough for helping to solve this mystery.

Hi @jabrown0407, before I was diagnosed with PMR/GCA my blood work showed anemia - so my PCP was wanting me to get a colonoscopy, a pelvic ultrasound, etc. Luckily, a good friend, an infectious disease doctor, took an interest, because I also had a mild case of Shingles, even after having the Shingrex vaccine. He reviewed my lab work, suspected PMR and GCA, and told me what blood tests to ask my PCP to order. When I had the anemia, I was very tired and could barely get through a long walk. Good luck, I hope you can find some relief.

@tsc - I believed and still do believe that I have/had excellent doctors. I live in the Dallas area and have seen Baylor Scott and White doctors, University of Texas Southwestern doctors (a major teaching and research hospital system in the US), and I even consulted with Cleveland Clinic doctors through their National Consulting Services and not a one of them ever mentioned that there could be a relationship between PMR and anemia. I have told most of my doctors that if I fired every doctor that disappointed me I would have no doctor. It is things like this that simply prove that they may be smart but not perfect.

Did you ever watch "Mystery Diagnosis" on TLC? Sometimes people suffer for years until they find the right doctor who puts all the clues together and does some digging.

In my case I came up with the PMR diagnosis through extensive internet research. I went through one disease after another and when I read the description of PMR I said "Bingo". In order not to offend the doctor (who had diagnosed me with something else) I didn't tell her what I had, just presented my relevant symptoms. She immediately said, "You have PMR". Unfortunately, I expect to have to do this for any medical problem I develop for the rest of my life. If I lose enough brain power that I can't do the research I'm sunk. Doctors don't have enough time for complex problems and are too distracted by the overload of information on their computers.

Nope - but I just may do it now. Some members of my family mentioned I needed to have an appointment with Dr House. In reality, for a long time I was not aligned with PMR for several reasons. One main reason was my pain was not bilateral. Additionally, no one would ascribe some of my symptoms like the anemia to PMR. Some of my symptoms I successfully diagnosed as not PMR related - doctors confirmed my self-diagnoses work and I received treatment. These problems would have been hidden had I been on daily oral steroids. I definitely have a love-hate relationship with my PMR diagnosis.

Many symptoms of PMR could be identified as other disorders. For the longest time, I just assumed I had fibromyalgia. When I got shingles across my face, I thought I had lupus. I also could not tolerate being in bright sunlight, but by then I had developed Giant Cell Arteritis.

I have been seeing my rheumatologist every month and having labs done at every visit since May of last year. Just last month I was able to skip one visit. I
am scheduled to see her again in April so I will see how it goes from here.

It took three months and three different doctors to diagnose my PMR. My GP said I just had anemia. My oncologist thought it might be the Anastrozole and stopped it for two weeks. I was sent to a neurologist who did diagnose PMR from a blood test and sent me to the rheumatologist. I have now been taking Prednisone for 2 years and am down to 3 mgs. I only see the rheumatologist every 6 months unless I have a flare up. On my last visit I said I will try to get down to 2-1/2 mgs and she said why, as 3 mgs is working so well. Sometimes you have to take the bull by the horns and do what you know is best for you, I want to get off prednisone completely so will try the 2-1/2 mgs. (I have in the past had flare ups and had to go back to a higher dose). I've been on 3mgs. now for several months. Good luck. I think once you get established with a lower dose (you didn't say how many mgs. of Prednisone you are on) you will not need to see the doctor as often.