Why Does the PMR discussion have so many posts Compared to others

There is a lot of need to do your own research for PmR. Knowledge is power. It seems doctors have no good answers about the condition so it’s up to us to confer with those who are dealing with it. I don’t know anyone in my community with it, as I ask almost anyone I speak about it to.
I just saw my endocrinologist today and he advised me at the 5 mg mark to get a blood test for my cortisol production before tapering any further. I wish there were a “team” of doctors to treat those of us with PMR as there are so many bodily functions that are affected by this condition and its treatment.
We have to be proactive to get the best outcome through this disease.

@susanlf
5 mg is not a therapeutic dose. NICE guidelines and other EU and USA recommend 10 to 15 at least.

@caroljeand I am not sure the blood test will tell you much. I have seen where 2 or 3 mg is the desired level to try and test. The length of time you have been on steroids can also make a difference. I would say be prepared that the results might not be a true indication.

@tuckerp
Thank you..Because I am on”down to 5 mg and our own bodies normally produce an average of 5 mg he felt it would indicate if I have some of my own cortisol production. We’ll see.

@tuckerp
In response to the length of time that I’ve been on prednisone, it’s been 3 and a half months.

@johnbishop I recently read that Prednisone is prescribed more for PMR than any other disease. Sorry, I don’t remember where I read it, but it was a recent article. It’s amazing bc nobody I know had ever heard of it before.

@bonandrods Before I was diagnosed with PMR the first time back in 2007 I had never heard of PMR but within hours of taking my first dose I had almost complete relief...until my next dose in the morning 🙂. My rheumy told me that is normally how they confirm the PMR diagnosis, if it provides relief within a short period of time.

@johnbishop Same here. My first dose of prednisone took the agonizing pain away! I was told the same. That’s the way to confirm it’s PMR.

@johnbishop
Sorry ... but I hate to disagree with how they normally confirm a PMR diagnosis. As far as I know there is no definitive way to confirm a PMR diagnosis. I fell into the trap of thinking my pain was PMR related if Prednisone rapidly relieved my pain. My biggest regret was taking Prednisone for all of my pain when there were better options available. Also ... after being diagnosed with PMR and being treated with Prednisone, that doesn't exclude other possible underlying reasons for developing new onset pain. I had a tendency to throw more Prednisone at every pain without the pain being reevaluated..

According to artificial intelligence --- The diagnosis of PMR is primarily clinical, based on a combination of symptoms, physical examination, laboratory tests, and the exclusion of other conditions.

I have other autoimmune conditions in addition to PMR. My rheumatologist said not to take Prednisone long term for the other autoimmune conditions. I can assure you that Prednisone rapidly relieved the pain caused by those other autoimmune conditions too.

I have conditions which are not autoimmune. Prednisone did a decent job of relieving that pain too but there were better options.

Prednisone is the universal anti-inflammatory medication for many disorders. Just because Prednisone works to rapidly relieve the pain, that doesn't confirm it is PMR. Because prednisone is a universal anti-inflammatory, its ability to rapidly relieve pain simply indicates that the underlying cause of the pain is inflammatory in nature but that doesn't confirm PMR.

Hi Mike @dadcue, Actually I agree with you but probably didn't choose my wording/thought well. I was a mess by the time I had my appointment with my Rochester Mayo rheumatologist. My wife drove me and they had to put me in a wheelchair because I couldn't walk. I had a fluid build up in my right knee, along with all of the PMR symptoms - body/joint pain from shoulder to feet. The first appointment early in the morning they drained the fluid from the knee and I met with the rheumatologist who did a physical exam and looked at the blood test results and told me it seems like I probably have PMR. I didn't know what it was so he explained in layman's terms that it's like arthritis all over the body. He gave me an Rx for 20mg prednisone and wanted me to take it at lunchtime and comeback later in the afternoon.

We had the RX filled at the Mayo pharmacy and then went to lunch in the Mayo cafeteria. I took the 20 mg dose and then about 3 hours later saw the rheumatologist again and it really was like a miracle for me. That's when I mentioned that the PMR diagnosis fits for me. I no longer needed the wheelchair and was able to walk back to the car. I did let my wife drive us home though.