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

I am four months in, and initially saw my GP, generally when my limited Rx ran out. I asked for a referral to a rheumatologist in February, and have a second visit scheduled for May. His advice was generally what I had already read on this forum, namely tapering prednisone 1 mg at a time, monthly. I assume I will have blood work done in May to see where I am. I am fortunate at 75 to have no underlying medical conditions that could complicate diagnosis and treatment of PMR, otherwise my rheumatologist might want to see me more often--especially if I had top shelf medical insurance--which I don't!

Our visits and labs are fortunately covered here in Canada but I empathize with you regarding your health and finances. My regime is monthly check ins with my family dr. And a standing order for CRP for me to self monitor inflammation. Full blood work up 1 x monthly. I also keep a food dairy which is really helpful for mini flare ups.

@abbeyc, You will notice that we changed the title of your discussion to describe your question and hopefully bring more members with experience into the discussion. My experience has been an inital meeting with a rheumatologist who diagnosed PMR and prescribed 20 mg prednisone along with some instructions on how and when to start the tapering process. I only had labs on a yearly basis with my primary care doctor.

I was given instructions of things to watch for and call them immediately if I had pain or tenderness in the scalp or temple areas. He also told me to listen to my body when I was tapering and to keep a daily pain log from 1 to 10 along with the dosage of prednisone I took for the day. If I remember correctly I initially tapered down by 5 mg after 1 or 2 months then lowered the amount I tapered depending on how I felt in the morning when I first got up.

@tsc, @traynor4, @jmcc , @kmeikle1, @virginiaj and others may also have some thoughts or suggestions to share with you.

I go in to see my rheumatologist every 3 months with labs done the week before I go in. I have been seeing him and on prednisone for 8 months. After the initial visit I did go back in 2 weeks later for him to see how I was tolerating the prednisone.

Hi @abbeyc I have PMR and GCA, both diagnosed last May after a year of symptoms. I have a medicare Advantage Plan through an HMO. My rheumatologist wants a monthly CRP test only - to gauge inflammation - and I see him every three months. He gave me a very specific tapering schedule to follow and asked me to communicate any increase in symptoms to him by email. Under my plan, the lab work is free and there is a $15.00 copay to see the Rheumy. Can you talk to your doctor, explain the difficulty you are experiencing with the current schedule and ask for a modification with more remote communication, less visits, a more specific tapering schedule, and only critical blood tests? Good luck, Teri

Yes thank you Teri! That's exactly what I am going to do at my next visit now that I understand better how others here are being treated. Your arrangement with your doctor sounds ideal. Thanks so much!

Hi @abbeyc. Since my ESR and CRP were always normal (that's true for about 20% of us), my rheumatologist rarely does any blood work for me. If she's trouble-shooting some issue she will, but that's infrequent. Monthly seems a bit much especially if you're taking prednisone which will affect your inflammation markers. I've had PMR for 2.5 years and typically see my rheumy every three months. Tapering schedules may be useful, but you must let your body dictate your need for prednisone.

I am not on an oral prednisone dosage. I do see my PCP monthly and we run CRP, Sed Rate, CBC and Comprehensive Metabolic Panel each month at a minimum. I have had anemia and so we watch for that because no cause was found plus a couple of other misbehaving blood factors, my Sed Rate and CRP can run from normal to around 125 on any given month. They seem to be holding hands because the numbers are often close to each other. Also I write my PCP a note whenever I visit another doctor so she has my perspective as well as the letter to her from my specialist.

I visit my Rheumatologist for steroid injections and other pain management needs on an as needed basis. I also see a few other specialist like Endocrinologist - initially my thyroid numbers ran off the rails; a Gastroenterologist for IBS; Cariologist for both tachycardia and bradycardia (she shakes her head every time I see her), initially I had additional heart problems. Most of these problems started when PMR started three years ago, it is exhausting but we are able to keep me going forward.

Not sure what insurance coverage you have. I have Medcare plus a Supplemental and I only pay the deductible, no copay with my policy. Once the deductible is paid I don't pay anything else for my doctor visits. Please call your insurance company and discuss the costs now rather than deciding it will cost too much and not visit as needed. You might be pleasantly surprised. My drugs I have to shop and some of them I have started purchasing from Canada because I require brand names on a couple of them and US based coverage is lousy on brand name drugs.

3rd bout of PMR. I’m 2 1/2 years from diagnosis, decreasing from 3 mg prednisone to 2, very slowly. I saw rheumatologist monthly at first with labs each time. Currently, see every 3 months, usually virtually. Labs are every 6 months now unless I have symptoms. I have Medicare plus supplement and pay no additional charge for visits or labs. I had a bit of a hassle with my Part D drug plan which only wanted to give me one month worth of prednisone which almost caused a real problem when I had to up the dose one month. My rheumatologist prescribed 360 I-mg pills that I could use to taper for awhile. The Part D plan didn’t want to approve it, but I got in a 3-way call with Part-D rep and pharmacist and succeeded in approval. Prednisone is a very cheap drug compared to others and copay on 360 tablets was not much. My rheumatologist trusts me to work out my own tapering schedule because I am doing it for the 3rd time.

After getting my PMR under control, my MD suggested a tapering schedule and said to call him if I needed to go back up more than 1 mg. My appointments were about every 3 months and are now about 6 months or less apart. I generally have bloodwork that coincides with my appointments. But if I felt my pain increased significantly, I wouldn’t hesitate to request bloodwork in between appointments. I was diagnosed in August and began with 10 mg and am now down to 1/1.5. Holding steady there for now. Trying to wean off of the Celebrex.
Regarding earlier discussion about Sed rate, etc: My sed rate was close to 0 when the MD began testing me in April, 2021. It went straight up, but never exceeded normal limits of 0-30. It reached about 18 and then decreased dramatically within 1 -2 months of beginning prednisone. My CRP was within normal levels of 0-.4 when I had my first test in April and rose dramatically to about 1.9 when I was diagnosed in July. It is now back at .2. So, CRP was way above normal, but Sed stayed within normal range.