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

Posted by abbeyc @abbeyc, Mar 28, 2022

Hello, I am kind of new. 3 months with PMR but I am wondering how everyone is dealing with their doctors. So far my Rheumatologist is saying I need to see him once per month for labs and then check-up/medication recommendations (starting to taper). This will get very expensive with monthly doctor visits for what I understand will be YEARS of PMR. Is everyone doing this? or managing somehow on their own? But we need to the docs to write the prescriptions obviously.

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

@pacarolyn

Strangely my labs show anemia as well. Were you given a reason for yours? I have also had a colonoscopy and pelvic ultrasounds which show nothing they can pinpoint. I was told to eat more iron rich foods.

Jump to this post

The anemia of chronic inflammation is not caused by iron deficiency as @jabrown0407 implied. Best to get the blood work done @pacarolyn to see if there is iron deficiency before increasing your iron intake.

REPLY

I also had anemia on my first bout with PMR. I also have a low neutrophil count, which started at the same time as my first bout with PMR. This has never come back to normal.

REPLY
@jabrown0407

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.

Jump to this post

After starting prednisone my symptoms have only occurred on one side for the last three months. My doctor said this was unusual. I have wondered about the steroids hiding other problems too.

REPLY
@sashakay

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.

Jump to this post

Can you tell us about your diet and if it has been helpful to reduce inflammation.

REPLY
@pacarolyn

I hope all goes well. Decrease is what we all hope for. I will get labs this month as well. Hoping CRP and SED are lower.

Jump to this post

a member of this forum said a very wise thing a while ago -and I felt as if she had given me permission not to worry and not to try to accelerate the weaning off pred.
"... your body will dictate how you wean off, or in some cases reach a dosage that is right for you...." Some of us may never be free of prednisone, but if we are feel great, and pain-free, for me that is my goal. Support my body with a foods and natural products that support this process. Listen to your body - the body never lies.

REPLY
@loyal

Can you tell us about your diet and if it has been helpful to reduce inflammation.

Jump to this post

Wow, thank you for asking. Everyone has their own healing path, and at this time, mine happens to be working. It may well change, so I make sure I stay aware of what my body is trying to tell me. At this is, what is working is :
No GF - but in moderation but never twice in 2 days
NO regular potatoes, peppers, eggplant, tomatoes
no added sugar
no beef (just my choice)

foods that are "free-from" - antibiotics, hormones, etc. (Canadian SuperStore here in Canada has a brilliant line of "Free-From" foods
I have started eating a lot more plant based foods.
occasional glass of red wine (organic if possible)

Supplements:
Vit D 4000 mg
Liquid Vit B complex
Oat Milk for the Calcium/Magnesium

ABOVE ALL ELSE, THIS HAS BEEN THE MOST BENEFICIAL OF ANYTHING I HAVE DONE:
Organic Turmeric Curcumin + Ginger liquid drops - must have curcumin for maximum absorption. (non GMO)

I hope this helps; keep in mind that everyone has their own journey. this is my third episode of PMR each were 11 years apart. Each time the recovery protocol was different, and now at age 78 I find that my body needs an easier path as assimilation isn't as easy! lol
CRP has been reducing slowly and last bloodwork it was 2.7 - yikes so happy!

REPLY

I was diagnosed with PMR in Sept. 2021. I started with 20 mg. of prednisone. I have been getting monthly labs, but not monthly doctor appointments. I have the ability to message with my doctor through the patient portal. My doctor suggested, based upon my blood tests, how much I should reduce my dosage of prednisone. One month, I replied that when I lowered my dosage to 3 mg., some pain returned. I stayed at 4 mg. for another month. I have now reduced to 3 mg. with the goal of reducing 1 mg. per month until I am at zero. My body told me what I needed even though it wasn't reflected in my blood test.

REPLY
@sashakay

Wow, thank you for asking. Everyone has their own healing path, and at this time, mine happens to be working. It may well change, so I make sure I stay aware of what my body is trying to tell me. At this is, what is working is :
No GF - but in moderation but never twice in 2 days
NO regular potatoes, peppers, eggplant, tomatoes
no added sugar
no beef (just my choice)

foods that are "free-from" - antibiotics, hormones, etc. (Canadian SuperStore here in Canada has a brilliant line of "Free-From" foods
I have started eating a lot more plant based foods.
occasional glass of red wine (organic if possible)

Supplements:
Vit D 4000 mg
Liquid Vit B complex
Oat Milk for the Calcium/Magnesium

ABOVE ALL ELSE, THIS HAS BEEN THE MOST BENEFICIAL OF ANYTHING I HAVE DONE:
Organic Turmeric Curcumin + Ginger liquid drops - must have curcumin for maximum absorption. (non GMO)

I hope this helps; keep in mind that everyone has their own journey. this is my third episode of PMR each were 11 years apart. Each time the recovery protocol was different, and now at age 78 I find that my body needs an easier path as assimilation isn't as easy! lol
CRP has been reducing slowly and last bloodwork it was 2.7 - yikes so happy!

Jump to this post

I am going to retry the tumeric route. My primary (a DO) is always pushing it, too. I tried it while my small intestine was inflamed and it was not well recieved. (I also have Crohn's). Things are quiet now- thanks to the LDN and I am going to try it again. We will see if it helps.

REPLY
@suetex

I am going to retry the tumeric route. My primary (a DO) is always pushing it, too. I tried it while my small intestine was inflamed and it was not well recieved. (I also have Crohn's). Things are quiet now- thanks to the LDN and I am going to try it again. We will see if it helps.

Jump to this post

That was my problem too. The liquid drops are great. No burning or irritation. I put the drops in about 2 oz of choc oat milk. Deeelicious! Pls let me know how it goes. May not notice an improvement for at least a week or two so hang in there

REPLY
@dalby

I was diagnosed with PMR in Sept. 2021. I started with 20 mg. of prednisone. I have been getting monthly labs, but not monthly doctor appointments. I have the ability to message with my doctor through the patient portal. My doctor suggested, based upon my blood tests, how much I should reduce my dosage of prednisone. One month, I replied that when I lowered my dosage to 3 mg., some pain returned. I stayed at 4 mg. for another month. I have now reduced to 3 mg. with the goal of reducing 1 mg. per month until I am at zero. My body told me what I needed even though it wasn't reflected in my blood test.

Jump to this post

Thank you for your post. I am in a similar situation. Reduced to 4 mg 2 weeks ago (CRP 2.7 !) and a few days ago went down into a huge mood shift. Restlessness, shift between depersonalization and crying jags. No pain. Hoping this is my body adjusting to my own cortisol waking up. Would appreciate any feedback.

REPLY
Please sign in or register to post a reply.