Is that Polymyalgia?

Now at 9MG in the morning and 4 at night but feeling fatiuge. 

Hi,

i am 62, diagnosed May this year with PMR and GCA. Started on 50mg, now tapering down. I was in extreme pelvic girdle pain, immobile, frozen shoulders, the works. I had every symptom and more, and still have issues with shoulder and arm pain, sometimes lower back pain, but I am under the care of a massage therapist for that. . I was extremely fit and active, a healthy specimen so to speak at 49kg. Seemingly overnight I dropped to 40kg and absolutely no muscle tone. The shock was extreme. My first reaction after starting the pred was “get your fitness and muscle tone back” so I could be stronger and build my strength again. Big mistake. The more I tried, the worse I got. Eileen gave me the best advice. Stop the “burn and bust”. I would have a good day, (mostly because I was like an energiser bunny on that high a dose of prednisone) and go full on. The I’d crash for the next 2 or 3 days. Eileen’s advice was to rest rest rest ....do something then rest, repeat throughout the day. It works. I’m still reducing slowly, I still have pain at times, but nothing like the original. I will not reduce if I flare, I wait till I stabilise then try 1mg at a time for 2-3 weeks but will take longer if I have to. Currently trying to get to 10mg. If I remain stable  that may be my dose long term. We’ll see. I don’t predict. I listen to my body. It dictates the progress of my recovery. A positive attitude is your best defense. You will have down days as we all do. Have a little pity party, then wipe away the tears and push forward ...SLOWLY. We are all here to provide guideance and support to each other and the advice you will get on here is more valuable than some drs advice. Take it all in. BUT LISTEN TO YOUR BODY! 💪💪💪

The four weeks at highest dose is reasonable. But recommendation is never to reduce by more than 10% of dose. As Eileen suggested you *may* be able to get to 20 fairly quickly, but it would be wiser to do it in smallish steps. For example, 2.5 for a few days, rather than 5 all at once, and certainly less than 10 in one go.

Your doctor may want to get you to 10 asap, but it mustn't be at the expense of returning symptoms. As Eileen has said elsewhere, it isn't slow if it works. Always stay at each level long enough to be sure pain is not returning. This can be caused either by active PMR not being controlled enough, or by pred withdrawal, mostly avoided by a very slow taper. If what you have is PMR you should continue the taper but slower and slower until you reach lowest possible dose to control the symptoms, which you already know is a slow process. Of course it seems your diagnosis is not completely certain yet, so let's hope your doctor keeps an open mind and that your treatment continues to keep you as painfree as possible. The one thing we can say about PMR is, unpleasant a disease as it is, it is treatable and it doesn't kill! But it seems many physicians don't seem to fully understand how very slowly we have to taper pred when we have PMR. It's almost as though we have to fool our bodies into responding adequately to smaller and smaller dosage. A challenge indeed, and one we can take up as long as we feel well. All the best.

Oh dear. 😪You need all the support and understanding you can get., especially from your husband.  May I suggest you either show him some of the comments from this forum or read extracts out to him. PArticularly from those of us who may have this more severely than yourself. He surely would give you  help and support 5en 

So sorry you are so young to have this. I am fairly newly diagnosed, although looking back think I have had this for at least 2 years before Prednisone was prescribed. However, I am in my 60s. I've also found these peeps supportive and plan to go to my local group meeting, which is once a month. Have courage, I think we'll all be on steroids for a number of years. That worries me. Take care.