I am having difficulty in working out exactly how I am feeling, I feel I am no longer connected to my body as I was pre GCA/PMR. Where does the pain, weakness and general ill health cross over from GCA/PMR and prednisolone treatment? When I visit my GP he asks all these questions, that I need to answer on the spot, I still have headaches, but prednisolone causes headaches, I can hardly walk because of the weakness of the muscles in my thighs, after sitting down for too long I have pain in my buttocks, I have tingling and numbness in my fingers and wrists, I am on 50 mg (have tried reducing but my symptons get worse) since December, 2015, my markers keep going up and down, so as I believe that the meds also cause these symptons as well, how do other sufferers gauge what is what? Thanks for your consideration.
OH dear, sorry you are so poorly. It seems you have what is affectionately known as 'brain fog'. Also caused by PMR and pred!
Do you have GCA?
Yes, I have GCA and PMR. Such Fun
So sorry. I had a real bad bout 2014 and went up to 80 mg prednisone. Finally syptoms subsided and reduced slowly to 40, then 20, I had never had headaches before, or tender scalp, or pain in jaw and neck plus the PMR symptoms. Believe your body when it speaks. The true relief is very real when it comes and one forgets it all for awhile. For me Prednisone just made me want to eat and a bit hyper.
Hope you feel better soon.
It sounds like you are clearly able to discern that the 50mg dosage level is on the edge of where symptoms get worse, and what those symptoms are.
I would try to keep track of this cause and effect, a diary of sorts that you can present to your doctor when you are in for a visit.
At some point, you might want to begin making your own decisions as far as short-term, small adjustments to dosage level. Keep your doctor informed, so that your prescription is appropriate and ample for your needs.
It is normal for one's dosage requirement to fluctuate slightly over time, but your doctor will want to keep you on track to a reduction in dosage, so you should only be making fine adjustments to your dosage on your own.
I suspect that doctors prefer to prescribe a rigid dosage level so that certain patients won't go overboard in terms of changes to dosage. Making small dosage adjustments on your own may allow you to get a feel for the effects of such changes, so may better allow you to keep your doctor informed as to whether the prescribed dosage may have fallen too low at any point. Keep in mind that as the dosage gets smaller, any adjustments to the dosage should also be made smaller, perhaps keeping any dosage adjustments to within a few percent of the prescribed dosage.
One more thing about pmr is that it is important to move about frequently, keeping any interval of sitting limited to perhaps fifteen minutes or so!
Sharon, I have GCA and am currently on 30mg pred plus methotrexate. I have been unable to taper below 20mg, hence the MTX since January. (GCA was diagnosed end of 2014).
I feel generally unwell most of the time, bad periods of complete lethargy and have to sleep during the day. The only time I feel good is when I'm on about 35-40mg pred.
I find it really confusing, have I picked up a bug and am suffering from that? Is it because of the taper? Is it The pred and/or MTX?
I've had several flares, so some of the feeling unwell is no doubt due to that, but quite often, I wonder whether I'm also battling other things, picking up a virus from someone.
Being on such high doses of pred has also caused problems, weight gain, blood pressure problems, muscle wastage, not to mention my big fat hamster face! Oh the joys of it all!
I've now lost my sense of taste, no idea what's caused it, but will discuss with GP next week.