Newly diagnosed

Posted by buc153 @buc153, Jan 21 10:34pm

Today I was diagnosed with the PMR.
Blood tests are negative. My doctor said it’s not uncommon for the bloodwork to not show issues now. I have had the pain now for over 3 weeks. I have all the symptoms. Has anyone else living with this, have negative results on their blood work? Started me on Prednisone
today. Just not sure on all of this.

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

Thank you, your fire analogy is excellent! I have read 1-2 years is a common tapering time which is what gave me pause. My rheumatologist is quite experienced, so that’s why I was confused. I didn’t have the knowledge at my first visit to ask an intelligent question, but now I do. I will email him to enquire about this current course of treatment and where he is going with it. Thanks again!

REPLY
Profile picture for franklinlala @franklinlala

Thank you, your fire analogy is excellent! I have read 1-2 years is a common tapering time which is what gave me pause. My rheumatologist is quite experienced, so that’s why I was confused. I didn’t have the knowledge at my first visit to ask an intelligent question, but now I do. I will email him to enquire about this current course of treatment and where he is going with it. Thanks again!

Jump to this post

@franklinlala
There are some autoimmune conditions where remission can be achieved quickly. A fast taper like your rheumatologist suggested does work for some conditions but I doubt it will work for PMR

REPLY
Profile picture for franklinlala @franklinlala

Thank you, your fire analogy is excellent! I have read 1-2 years is a common tapering time which is what gave me pause. My rheumatologist is quite experienced, so that’s why I was confused. I didn’t have the knowledge at my first visit to ask an intelligent question, but now I do. I will email him to enquire about this current course of treatment and where he is going with it. Thanks again!

Jump to this post

@franklinlala Mine "burned out" in 6 months and I was able to taper off. I felt that was probably a record time. My lowest possible dose was 10mg which I was on for 5 months after starting at 20mg like you. Maybe your Dr is just trying to move you to your LPD as quickly as possible. Prednisone is a nasty drug longer term and the fact it becomes harder to stop it. All Dr's know they will end up treating you for other conditions the longer you are on it. I doubt your able to stop in 4 weeks. Best to find out your Dr's plan.

REPLY
Profile picture for franklinlala @franklinlala

Hi, As a newly diagnosed PMR patient I need some advice. My rheumatologist started me on 20 mg prednisone. My ESR was 36 and CRP 16.2. He has me tapering 2.5 mg every 4 days, meaning I will be completely done in 4 weeks and 4 days with all the prednisone prescribed. It is then two more weeks until I see him again. According to books I’v read, this seems not the norm, and fast. A friend, with PMR, just finished her taper after 1.5 years. She says if I stop that quickly I will be in a world of hurt. Currently I’m at 10mg a day and starting to feel more pain and stiffness creep in, lasting longer than usual. I’m concerned, and wonder do I follow doctor’s orders, or question his treatment protocol? Anyone out there with similar experience? Thank you in advance.

Jump to this post

@franklinlala I agree with @jeff97, I does seem to be a very fast taper. My PMR is currently in remission going on 7 years but my first encounter with PMR took 3 and 1/2 years to taper off and the second time my PMR came back six years later, it took me 1 and 1/2 years to taper off. Each of us are different and that's why I like this discussion on tapering started by @dadcue.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Do you keep a daily journal of your aches/pain level when you get up in the morning along with your dose of prednisone? This really helped me when I was tapering and recommended by my Mayo rheumatologist to help me know what my acceptable level of pain was when tapering.

REPLY
Profile picture for franklinlala @franklinlala

Thank you, your fire analogy is excellent! I have read 1-2 years is a common tapering time which is what gave me pause. My rheumatologist is quite experienced, so that’s why I was confused. I didn’t have the knowledge at my first visit to ask an intelligent question, but now I do. I will email him to enquire about this current course of treatment and where he is going with it. Thanks again!

Jump to this post

@franklinlala I've thought more about your situation, and tapering every 4 days seems like a bad idea to me. My taper was a mix of 2 and 4 week blocks. My rheumatologist told me he likes a minimum of 2 weeks at a dose so that your body can adjust and settle in to that dose. If you are tapering every 4 days and you start having PMR symptoms again, you won't have any idea of which dose caused the problem. It could have been 2 or 3 doses back, and the symptoms have just shown up. The doctor would have to guess about which dose to go back to.

REPLY
Profile picture for tuckerp @tuckerp

@franklinlala Mine "burned out" in 6 months and I was able to taper off. I felt that was probably a record time. My lowest possible dose was 10mg which I was on for 5 months after starting at 20mg like you. Maybe your Dr is just trying to move you to your LPD as quickly as possible. Prednisone is a nasty drug longer term and the fact it becomes harder to stop it. All Dr's know they will end up treating you for other conditions the longer you are on it. I doubt your able to stop in 4 weeks. Best to find out your Dr's plan.

Jump to this post

@tuckerp Six months is fast! You’re fortunate. When people talk about maintaining at the lowest possible dose, does it mean still having symptoms, however they are tolerable instead of debilitating? I’ve never been pain free, it’s just vastly improved.

REPLY
Profile picture for jeff97 @jeff97

@franklinlala I've thought more about your situation, and tapering every 4 days seems like a bad idea to me. My taper was a mix of 2 and 4 week blocks. My rheumatologist told me he likes a minimum of 2 weeks at a dose so that your body can adjust and settle in to that dose. If you are tapering every 4 days and you start having PMR symptoms again, you won't have any idea of which dose caused the problem. It could have been 2 or 3 doses back, and the symptoms have just shown up. The doctor would have to guess about which dose to go back to.

Jump to this post

@jeff97 This is where the treatment of PMR becomes even more confusing. Just as everyone’s symptoms are different, every treatment protocol is as well. What your doctor says makes sense. Seems I need to have a discussion with mine and find out his long term plan for me. Thank you.

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

@franklinlala I agree with @jeff97, I does seem to be a very fast taper. My PMR is currently in remission going on 7 years but my first encounter with PMR took 3 and 1/2 years to taper off and the second time my PMR came back six years later, it took me 1 and 1/2 years to taper off. Each of us are different and that's why I like this discussion on tapering started by @dadcue.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Do you keep a daily journal of your aches/pain level when you get up in the morning along with your dose of prednisone? This really helped me when I was tapering and recommended by my Mayo rheumatologist to help me know what my acceptable level of pain was when tapering.

Jump to this post

@johnbishop Thank you for the the link John, I will definitely read it. And yes, I journal every morning and night keeping track of dosage, blood pressure and symptoms. A friend was kind enough to send me the journal along with 4 other books on PMR when I was diagnosed. It’s fascinating how a month ago I knew nothing of PMR. Now I have the support of this helpful group. I so appreciate everyone and their valuable comments and suggestions.

REPLY
Profile picture for franklinlala @franklinlala

@tuckerp Six months is fast! You’re fortunate. When people talk about maintaining at the lowest possible dose, does it mean still having symptoms, however they are tolerable instead of debilitating? I’ve never been pain free, it’s just vastly improved.

Jump to this post

@franklinlala Lowest possible dose might not be the best phrase. Lowest effective dose is better. People have different opinions about whether they should take more prednisone and have less pain or vice versa. Personally, I lived with undiagnosed PMR for a year and undiagnosed GCA for 5 months, and I had a bad quality of life during that time. I was in a lot of pain, had trouble dressing, driving, etc. I haven't had any symptoms since I started treatment more than a year and a half ago. So I prefer not having any pain. But I know that some people never get complete relief even when they are receiving treatment.

Here is a thread I found that deals with how much pain people should tolerate as they are being treated - https://connect.mayoclinic.org/discussion/how-much-pain-to-tolerate/ There are probably other threads if you search.

REPLY
Profile picture for franklinlala @franklinlala

@tuckerp Six months is fast! You’re fortunate. When people talk about maintaining at the lowest possible dose, does it mean still having symptoms, however they are tolerable instead of debilitating? I’ve never been pain free, it’s just vastly improved.

Jump to this post

@franklinlala I like jeff97 answer. Prednisone or as its called the devils tic tac does its job at reducing inflammation and reducing your immune system. I unfortunately watched my wife with cancer go through the nasty side effects of steroids and then I got PMR. The idea is to try and take an amount that reasonably keeps the inflammation in check. I think that can be different for each person. I used Dr Megan - Prednisone Pharmacist for most of my understanding of steroids. She sells a product but her videos are very informative. Of course the self taught experts on this site have walked the plank.

REPLY
Please sign in or register to post a reply.