A big thank you and more advice please.

I remember taking a sheet of A4 to my GP with things like fatigue, mild panic, niggling aches, depression,Prednisolone, muscle weakness, sleeplessness and probably most of the other symptoms that crop up on here regularly. I said to him that if this was a flow chart where would I begin and which direction would I take. He said he really couldn't answer.   Your baffling tedious journey just about fits the bill.

I've been "cured" for over four years now and my recovery was full of surprises and no recognisable pattern.

I was fortunate with my GP who did not dictate and trusted me to manage my own dose as long as long I kept careful records. Once below 10 there were many ups and downs and I know that has been a common experience. I remember having to stay on 5 for three months and my energy levels fluctuated all the time.

Right near the end I had a hip replacement and one of the lovely surprises was finding that my 1 mg. of pred. saw me through. I had dreaded a set back. There just is no foretelling. As so many on here are always saying.... listen to yourself. Best of luck.

Gratitude saves us and humbles us to accept the fact that PMR has a mind of it's own, symptoms and side effects constantly change and progress is not linear. We can be thankful for the experience and advise of others on the forum to make life as comfortable as possible. Flexibility is one of the many lessons of our unwanted condition. We look forward to remission when ever it shows up. 

Best advice is to be gentle and indulgent with yourself, give up putting others first and slow down. Adjustment is a bear and takes patience. Prednisone has taken mine away so I must consciously work on retrieving what I actually never had to begin with!

Stay plugged into friends who share this experience. 

Hello Frit, I have been on Pred for over 4 years now. Fatigue has always been an issue with me but others not so much. One of the contributing factors seems to be our level of activity. Have you been pushing yourself lately? Doing some extra things because you have felt OK?  Today I got up and felt like I could conquer the world. I did washing then spent a considerable amount of time on the phone trying to sort out an issue I had with one of the public hospital administration areas being accused of giving them incorrect information when in fact I was trying to give the correct info but they kept talking over me. NOT LISTENING!!!! I am telling you this because after lunch this sudden onset of tiredness hit me like a ton of bricks. I sat down in my lovely recliner and promptly went to sleep for 2 hours. I fall asleep in the chair very frequently now and this is one of the hardest things I have had to come to terms with. I was a very active person. Worked as a Nurse used to do double shifts no worries. PMR hit and my life changed completely. PMR appears to affect others differently as well as similarly. No rhyme or reason I guess we need to be aware that it may throw us a curve ball from time to time. I think it is always a good thing to discuss with our GP's any changes just to make sure that some other issue not related to PMR may be happening. You could reduce the Pred and see what happens. You can always increase it if things go belly up. You take care and keep us posted and yes this is a life saving forum for many of us. I was off line for a long time due to internet service issues when I moved from Brisbane to the country. Now I am back on line and am so grateful for the support that I get. Cheers

To have got from 15 to 9 mg since April is pretty good going so if you feel you need to slow down a bit you shouldn't worry about it. The others have said it all really - we are all different.

What it could be though is that you are feeling better and doing more just at a point where the initiall energy-boost some people get from moderate dose pred is wearing off.

Some people only absorb about half of the pred they take - and if your adrenal glands had accepted a chance for a holiday in those 4 or 5 months they may not be topping up your dose of pred now it is below 10mg and possibly less than what is called the physiological dose - the amount of natural corticosteroid the body produces anyway and which is essential for feeling and functioning well. If that is the case then, yes, you may well feel more fatigued when you reduce again. But no-one can know until you try.

From here don't ever try to reduce more than 1mg at a time, you may find 1/2mg easier and more comfortable. Every time you change the dose your body has to adjust. So changing too much or too often will have a greater effect on you. Then there is the Dead Slow approach - spreading the change in dose over a month, not going from every day old dose to every day new dose all at once. 

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

I'm so sorry you had a doom-and-gloom merchant around in the early days - had she actually had PMR herself? Is that why you called yourself Frit?

Your reduction is similar to what I did two years ago. The fatigue didn't hit me until 7 mg but the pattern is the same. At this point go very slowly because your adrenal glands need to start pulling their weight again, and that can take a while. Taking more pred won't help, just delay the inevitable. Only increase pred if have to deal with pain. It will get better. Patience is the key, and remember you still have a significant disease.

Frit, I get a little fatigue from time to time, I think we all do. But I use the DSNS method of reduction. And will stay on a level till I feel good, I will not reduce if I have any PMR pain. EileenH has posted the link to DSNS, I would advise using DSNS. Good luck on your journey, think positive and try to smile. Smiling 🙂