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

@jfannarbor - I think PMR is one of many different conditions where there are also other conditions that have the same or similar symptoms and you are right, it does lead to frustration for those of us that have experienced PMR, GCA and quite a few other conditions. That's one of the strengths of having a site like Connect that allows us to learn from each other's experiences.

I feel the same way about my neuropathy diagnosis but unfortunately it doesn't have a chance of remission so I just have to learn to live with it. I am definitely thankful that my PMR is currently in remission for the second time and it's been more than 6 years now so hopefully it won't come back.

I have very few questions about PMR --- it is what it is.

PMR really isn't that complicated. The vast majority of my questions stem from how PMR is treated with long term prednisone. My PMR journey itself wasn't too noteworthy. What was incredible was everything that happened to me which had no explanation while I was treated with prednisone.

It is often said that PMR isn't destructive to muscles and joints and doesn't cause permanent damage. I can't think of any harm that PMR did to me except for all the pain. I can't say the same for my 12 years of taking prednisone daily. I wanted to be off Prednisone but nobody had any answers for how I was going to do that.

My problem isn't with Prednisone because in the short-term it works great. Before PMR was diagnosed, I actually had a lot of experience with taking Prednisone on a short term basis for other autoimmune conditions. What I wasn't prepared for was taking Prednisone on a long term basis for PMR.

After I tapered off prednisone it became clear to me what long term prednisone was doing to me. Technically, I still have PMR . I'm being treated with an alternative to Prednisone. I don't have all the other medical problems I had when I was taking prednisone. I struggle with not knowing why all those other medical problems happened,

I’m 69 years old and never heard of PMR until I was diagnosed with the condition. I was so ignorant of the condition I remember asking doctor if it was a life long issue and/or if it was something that could cause irreparable damage. This site has given me as much or maybe even more information and alleviated concerns and worries than my doctor (and she is very good at listening and advising when I ask the right question).

I am on 4 different sites. COPD, PMR, Auto Immune, and Prostate Cancer. I have or had prostate cancer. Auto Immune is interesting as it ties into PMR. I get about 20 new messages a day. Every morning I go through the messages. About every 3rd day I will respond to one of the 20. I get about 14 prostate cancer. 4 PMR and 1 or 2 auto immune. I am not sure if thats a good comparison but the prostate cancer group is active. As others have mentioned I have found the PMR site to be filled with good advice from what has or has not worked. Very little is known about the disease. The feedback from others is invaluable but also may or may not work individually. I have found the prostate site to be filled with experts to help explain to us newbies what to expect. There is so much knowledge about what to do and when to do it. It becomes very reassuring. I am glad to have met my fellow sufferers on such a great site.

Interesting that the prostate cancer site has so many more posts since it’s obviously only a single gender disease.

@dadcue Yes, I also wonder why we can’t just blast a high dose of prednisone for a few days and then stop before our adrenals have shut down and the side effects have set in. I have a friend with minimum change who is treated that way and has no problems with prednisone. Experts, what say you?

@54pontiac you can not just stop prednisone abruptly unless it’s under 2 weeks that you’ve been on it. You have to taper slowly.

@dadcue it’s my understanding that pmr left untreated can cause muscle damage. It can also lead to GCA.

@rhb80 My personal thought is that prostate cancer is said to affect almost 100% of men over the age of 80. You most likely will die with the disease not necessarily because of it. It also is comparable in numbers to breast cancer. I dont believe PMR affects to that degree of the population. Most of us had no idea what it was until we got it. I by chance at the gym met someone that had the disease previously but thats the only other person I know. While breast and prostate cancer are pretty well known and treated. No google search here just my thoughts.

@54pontiac I self treated two PMR flares within the first year after stopping the prednisone. I was familiar with the symptoms and I had left over prednisone. I did two days of 20mg two days of 10mg and 2 days of 5mg and stopped. Symptoms were gone. No withdrawals. I could not talk my Dr into prescribing me a backup 6 day dose. Of course they wanted to do all kinds of testing first.