First of all, a massive thank you from the thousands like me who regularly look at this site and read the posts but who don’t usually post themselves. The advice is amazing and, I am sure, has done a terrific amount to reassure and inform this silent majority. The contributors, especially the regular ones, almost seem like friends. It must take up a tremendous amount of their valuable time.
I would appreciate anyone’s comments on my experience with PMR and the following may also be of use to other people. I had PMR diagnosed in March 2015 and, having found this site, worked out a very slow method of reducing which, apart from one hiccup early on, worked very well and last June I came off the steroids altogether. This was an altogether horrid process and when I stopped the medication I developed all kinds of symptoms all (or possibly none!) of which may have been related to stopping the Pred. I had headaches, vision interference (lots of scintillating scotoma - flashing lights), earache, muscle pain in one eye which then migrated to the other, occasional shivering, depression, transient inability to focus both eyes together, some stiffness and a general feeling of being ill. In fact, I nearly cancelled a holiday to France, worried that I would feel too dreadful to go. During this time I also happened to damage a gluteal muscle playing golf. Fortunately all these symptoms apart from the muscle damage disappeared after about five weeks and I am feeling well and ‘myself’ again, although, in spite of fairly intensive physiotherapy, I’m finding the muscle damage has affected the way I walk and has caused knee pain! So, in three months I have gone from playing golf three times a week and walking everywhere to being a walking wounded. I am now very stiff, especially if I have been sitting or lying down for some time and am concerned that the PMR has not gone entirely. I can cope as I am, but would love to get back to being really active again. Has anyone any suggestions or had experiences like this? If I have to go back onto steroids again I imagine that I can persuade my GP to let me do so but, given how horrid it was stopping the Pred, I’d rather not do so if possible.
If anyone has had any advice or experience similar to all this I’d be really grateful to hear it.
Thanks and best wishes to you all. This is a great community.