I have been on predisone 15mg.for 2 weeks now, and before that, I was on some other time release cortisone injections for a week. I had had PMR symptoms since the end of April.
I'm not sure if I started on the right dosis or that maybe I have GCA as well, I've had headaches, blurry, foggy vision that the ophthalmologist said was due to a common vitrious detachment and nightsweats.
I've had to change rheumatologists, my new GP has referred me but I couldn't get an appointment till December 15th, till which time, I'm basically on my own. By that time, I should be starting to reduce from 12.5 to 10. It would be a shame if I had to taper up rather than down which I should be able to do in 3 weeks time.
Despite everything I've learned on here, I'm still not sure if I'm on the right dose for PMR, as so far my symptoms have been on a roller coaster. Some days I can walk normally, even having to reign myself in as I tend to feel like D. Bunny, but for the last two days, for example, my legs seem to be so weak that they buckle when I walk.. very unsteady and constant pain in my leg muscles . I've also developed restless leg syndrome which I experienced during pregnancy but never since.
I read a post on here from 2009 by a member describing his onset of GCA which I related to.
I'm hoping that everything will become clearer when I get the results of my CRP and ESR levels back on Wednesday, they were only slightly elevated before diagnosis.
Dea, you were diagnosed with both PMR and ESH at the same time recently. Could you describe your experience? I apologize if its already on here already . I think I've read all the relevant posts and then I discover something new.
Sorry you're having all these things going on and no real answers. The headaches, blurring and foggy vision could be from the steroids as my Rheum told me they can affect the backs of your eyes. I have days when my vision is very blurry and doesn't clear and other days are better and if that's causing your blurry vision it could be also the cause of your headaches. Having had GCA the headache I had was on my right side all around my temple area, at its worst felt as though I'd been bashed repeatedly by a baseball bat, my vision was blurry and the pain extended down my neck and around the back of my head. Weakness and generally feeling unwell are part of it too as your body is fighting inflamation. Generally with PMR, within a couple of hours on Pred the pain and mobility improves so it's strange that you go from having good days to bad days and generally 20mg is the prescribed dose. Night sweats definitely goes with thing steroids, there was a post only a couple of days ago about people having varying bouts of sweating, some bad, happening a couple of times at day, to awful, happening over and over, so that is more than likely from your steroid dose. I'm sure that more experienced people will be on later to give you more advice but in the meantime I hope that some of this is of help to you!
Yes, very helpful, thank you so much. I am now less apprehensive about losing sight due to undiagnosed GPA and more inclined to think that I just need a higher dose to start with for PMR. I am a bigger than average woman in terms of bone and muscle structure plus I am overweight. My headaches were nothing like you described so I will be vigilant for signs of GPA and try to figure out if I am still over exerting myself or I need a higher dosis.
You have to remember that you have your limitations with PMR and if you overdo it as in walking too much, you will more than likely have payback the following day, so you need to pace yourself and not over exert yourself. GCA is a threat when you have PMR so you do need to be vigilant. If you're having headaches more on one side than the other and can feel the artery on your temple along with a tender scalp and generally feeling unwell, you should have it investigated. I was having these symptoms until the pain got as bad a previously described and there's no doubting the awful fear of losing your sight can make you very nervous and jump to conclusions but if you're in any doubt or in that type of pain don't hesitate to contact your doctor or local A&E because as has been said on this site so many times and to me aswell, better to be sure than to lose your sight. It's very frustrating when you're waiting for an appointment but try and take things easy, don't overdo things and mind yourself!
Thank you for your helpful response. Probably, most important thing at the beginning of the course of PMR and GCA is budgeting your energy and learning how to distinguish the predisone side effects from the symptoms and the effects of over exertion. Eieen warned me from the start not to over do it, but it has been a long, confusing and frustrating process for me, which the doctors who have seen me for PMR have only confused me more. I'm slowly getting the hang of it, thanks to this forum. If I have GCA, it's probably subclinical still so I will be vigilant. Your explanation of your GCA symptoms has put my mind at ease.