has any one found PMR has gone ,and never came ... - PMRGCAuk
has any one found PMR has gone ,and never came back ??> I was free for 4years then back it came plus GCR ,CURE must be out there help .
While I know of several people who have come out the other side and are steroid-free, I also know that it does recur from time to time. The problem is that we see only the other side of the coin - we pull in all those who are having/have had problems including PMR second time round. What we rarely see are those who have had textbook PMR, i.e. diagnosed, put on steroids, reduced steadily and off them after 2 - 3 years. They are not the patients who are likely to find us as they have it all done by the book and don't require any help.
Sadly, although there is lots of research being done in the background, steroids are still the only effective treatment for both PMR and GCA. I hope that they will find a cure eventually, but it won't be just yet.
Having suffered both PMR and GCA I do so sympathise with you on experiencing a second bout of this. There are a couple of other second-bout sufferers of whom Polkadot and I am aware, and it may help you to know that one has recently got off steroids and the other is almost at zero Pred. I know one, like you, had about 4 years between her two bouts and considered that her second bout came after a period of severely overdoing things. Perhaps there is a lesson there for all of us. Meanwhile, like Polkadot and no doubt many others, I am hoping that future research will eventually come up with a cure - meanwhile thank Heavens for steroids in spite of their drawbacks. Take care 2watsons.
My good friend had PMR about 12 years ago, had a bit of a setback after she finished the treatment but since then has never looked back. It seems that it can happen, I'm keeping my fingers crossed.
This would be interesting statistics to know for sure.
