The lowest effective dose, how is it defined?

I think the 5.9 years as the "average" duration of PMR came from the following study.

Someone on another forum repeatedly said the average duration of PMR was 5.9 years. Other people started to repeat 5.9 years so that it sounded like an echo chamber.

You simply can't take one small study and say the results are the facts of the matter. People who do that have some kind of an agenda.

Some people take prednisone for a short period of time and some people take prednisone for a long time. Some people take prednisone for the rest of their lives ... some people taper off quickly.

Some people have many side effects ...some people don't.

This study doesn't cite the average, it says the median. It also has a 95% confidence interval around the 5.95 number which means that based on limited information the median may be anywhere between 3.37 and 8.88 years but only at the 95% level of confidence.

In an interview, Dr Matteson said this about the study. He was one of the authors of the study from Mayo.

"While the findings are somewhat good news regarding side effects, steroids are often not popular among patients, Dr. Matteson noted, due to other concerns, such as the weight gain associated with steroid use. The researchers did not examine weight gain. Nor did they look at appearance changes due to the drug or mood changes, also problematic for patients.

Dr. Matteson emphasized that these findings do not mean that experts should not continue to look for a better treatment options."

I think the weight/dose relationship study of 2011 is still valid in that it points out that 78% of people around 67kg responded to a start dose of 12.5mg but non-responders generally weighed more. Just interesting to me that weight makes a difference to the effective start dose.

The updated information link says the start dose should be 12.5mg to 25mg depending on the risks of individual patients. Since I had a heart attack a few years back and am not a skinny person, I'm pleased to have been started on 15mg, and it did work to get rid of pain within a week. Discussion with my pharmacist indicated that 15mg is a usual start dose (Australia) in any case.

I think a person's weight should be considered. I'm not sure how often weight is considered.

My rheumatologist made some recommendations to me. Mostly she just wanted me to find a "stable dose" that worked for me. She then wanted me to stay at that dose for a month or two before trying to taper. Everything depended on my symptoms.

I'm a big guy so she said 35 mg wasn't that high of a dose for me. Plus, I took prednisone for years at higher doses for other autoimmune disorders before PMR was diagnosed. I had some tolerance for high doses of prednisone. Unfortunately my tolerance dwindled the longer I took prednisone for PMR.

Before PMR was diagnosed, I was always able to taper off quickly.

Also missing from these older reports is the emerging understanding that there may be two classes of PMR patients: short term and long term. Has anyone seen a study on this difference?

The following study has identified 5 different clusters of patients. It was suggested that one cluster was possibly misdiagnosed.

Just because people have the same diagnosis of PMR/GCA --- that doesn't mean people respond to treatment in the same way.

You may be interested the Treat-to-target link given by John in his post above. Having searched and considered all available studies, trials and articles about PMR and GCA, they seem realistic about treatment options and durations and don't push for getting off prednisone at any cost. They put most importance on achieving and maintaining remission ("The treatment target of GCA and PMR should be remission; remission is the absence of clinical symptoms and systemic inflammation"), while acknowledging that remission cannot necessarily be measured. [Recommendation 1]

They say also that "in PMR, observational studies suggest that long-term drug-free remission can be achieved in 30%–60% of patients. Tapering off treatment should always be balanced against the risk of worsening disease activity." What about the other 40-70% of us who they acknowledge cannot achieve long-term drug-free remission? [Recommendation 5]

They acknowledge the need to balance risks:
"The treatment targets are achievement and maintenance of remission, as well as prevention of tissue ischaemia and vascular damage." [Results]

They put forward over 20 items in need of further research. There's still a dearth of information regarding PMR and its treatment.

That's an interesting study. I want to be in Cluster 4 - Rapid and sustained recovery.

Me too! I definitely wasn't in that cluster.

"Treat to target" means something slightly different to me. I was treated with prednisone for a really long time both before PMR and after PMR was diagnosed. Nothing ever changed about "managing my symptoms" with prednisone

Eventually I got off prednisone with help from another medication. That would not have been possible for me without the other medication. I think other treatment options targeted at the inflammation mechanism involved rather than managing the symptoms with prednisone.

Twice I got down to doses and had to go back up because I progressed too quickly. I am down to 7 now. Talk to your dr about staying on 9 for a while and then try dropping again. Good luck.

It is very general and I suppose it is because we're all so different with different levels of pain. Viva la dfference but for this hahaha