New diagnosis of PMR (when does it leave?)

I had the same problem, inicially. I also started at 20mg, I would have probably been OK starting at 15, but I confused PMR symptoms for over-exertion. If you do too much which is easy to do with your new found energy that the prednisone gives you, you will have all the symptoms back again.I think it's the most important lesson to learn, early on, to pace yourself and to rest between activities.I am learning everything on this forum. I am sure you will get a better respise from the more experienced members on here - no doctor has the time or inclination to explain all the nuances of tapering and pacing that we need to manage this condition that does go away at some point (it lasts 2 years at the very least ) but while it is with us, the goal is to get to the lowest possible dose of predisone that allows us to live relatively pain free and mobile.

Good luck Kathy.. I started treatment in October of 2016 and am now on 17.5 mgs. Every doubt I had had been resolved for me by this forum.

You will likely find that car trips and plane flights are particularly challenging.  I attribute it to being sedentary for an extended period of time. Plane flights of 3+ hours were the worst.  Same could be said for changing time zones and jet lag.  

 As for remission, you have to be patiend and accept the reality that this disease may be with you for at least a few years.  You;ll manage it with prednisone and hopefully taper over time as the disease runs its course.

When does it leave? When it feels like it - just as it came.

Yes it usually goes into remission - for about a quarter in up to 2 years but those patients seem to be more likely to have a recurrence at some later date. A further half take up to 4 to 6 years and the rest of us have it for even longer. There is beginning to be some thought that there are different forms - just as there are different forms of other autoimmune disorders - and that would fit with these different durations. And yes, there are people who don't have another episode - although it is thought about 10% of all patients have a second dose.

PMR itself isn't the disease - that is an underlying autoimmune disorder that means your immune system does not recognise your body as self and so attacks various tissues - in the same way as inflammatory arthritis, Type 1 diabetes and MS. BUt for most patients this autoimmune problem burns out. It is thought that a host of different things put stress on the immune system - and eventually it goes haywire and doesn't work as it should. The attacks on the tissues cause inflammation which in turn leads to pain and stiffness.

In the same way - pred does not cure PMR, it relieves the inflammation and as a result also relieves the pain and stiffness. Every morning a new dose of inflammatory substances are shed in the body about 4.30am - and cause the morning pain and stiffness. The sooner after this time you take your pred the less it will have to do and the faster it will work. The antiinflammatory effect lasts 12-36 hours - so for some people the effect lasts confortably until the next day, for others symptoms start to return in the later part of the day. You need pred as long as the underlying disorder is active and causing inflammation, it isn't a case of a short course and stopping as in other things.

However, you do not remain at the starting dose - you reduce the dose slowly to find the lowest dose that produces the same result as the starting dose. That may be as little as 5mg or even less - but it may take some time to get there. Especially if the doctor doesn't understand PMR and tapering well and tries to force the pace. PMR comes when it will, behaves as it will and goes as it will - and nothing anyone can do will make a difference you can count on. Eating anti-inflammatory foods probably does help some, many people use turmeric and garlic and eat plenty of oily fish and say they can tell the difference when they miss out on them. But it won't cure PMR.

Even though you don't think you did much - you almost certainly did more than you have been used to and that is enough to make your muscles protest! Your muscles remain intolerant of acture exercise despite the pred and if you overdo things you will often find that what is called delayed onset muscle soreness (what you get after excessive exercise) appearing after what for you was just a "normal" day - and when you have PMR it often takes much longer to go away. You can (and should) continue to exercise but you have to know YOUR limits, stick to them and increase the amounts in very small amounts to build up the training effect. Just because someone else can do it does not mean you will be able to - each of us has our own rules to play to in this game of "new normal".

If you follow this link you will find a post with a load of links to reliable information. And in the replies you will find a slow tapering approach that has worked for many people on the 3 forums - with fewer flares and no steoid withdrawal discomfort.

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Sorry you have joined the club.It is a very variable condition.I thought I had got rid of it in 10 months but have had a few flares.Some people are lucky in that it burns out in 2years while for others it never does.Mine has been around for~14years.You need to learn to pace things;do too much one day because you feel fine and it can "bite you in the bum" for several days after (I still do this sometimes).Good luck and hope you are one of those who have a short term version