When first diagnosed with one in Jan 2017 my CPR levels were through the roof was put on 15mg pred and they dropped to a very manageable level of around 7 but once of the pred it returned so put on to 15mg pred again.
But this time my doctor has increased me to 30mg because of pulsating in my temples and request an appointment to follow to hopefully rule out GCA.
But my concern is the rise in my CPR level all be it only slight from 7 to 11.5 while being on such high level of pred and I've noticed the breathlessness come back.
I want to go back to work to get some money in but doctor says not untill GCA has been ruled out.
Struggling to make ends meet at the moment.
Jura 1959
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Jura1959
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Breathlessness is something I have experienced along the way. It was investigated and my heart was fine. I think it can be a Pred side effect. I used to get a kind of gulping oxygen starvation sensation - not nice. There have been times that I have slept with an electric fan blowing on my face and I have the window open at night in all weathers. Sleep Apnoea is yet to be looked into. I think it was Pred. I hardly get it now on 7 mgs.
I am sorry that you have the stress of pressure to get back to work to earn and of course that won’t help your recovery. What do you do?
I work as a High-profile Security officer for vip's and internal security for a large university so I'm fairly busy work wise also do some private security work when I'm able to but finding it very hard working and attempting to do the diy work around my home but finding it harder and harder.
It sounds as though you have a particularly stressful job too. Your health has to come first though. GCA is a serious disease with potentially life changing consequences. You have to give your health and well being priority and your employers owe you a duty of care legally. You are trying to plough on through and it simply doesn’t work.Are you in the U.K?
As an aside, my husband’s father was born on Jura - do you have connections there. That is a place for peace and recuperation.
You need an accurate diagnosis so that you know how to proceed. I am so sorry that you have financial anxiety on the top of it all
I really don't think I can add much to SJ's comments. If you must work - then the DIY must wait. It is frustrating but that is the way it is. You have a serious systemic illness - and that isn't going to change any time soon i'm afraid.
Sorry - your doctor is right and if the CRP is rising with suggestive symptoms (temples and breathlessness could well be GCA) then that must be thought about. 30mg is a low dose for someone with GCA, albeit a high dose for PMR. You may well have both - some of this is a bit complicated but Figure 1 is pretty clear:
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Burning Feet & Legs/still flare problems
PMR: damage to tissue caused by living with some chronic inflammation rather than take higher level of pred?
Flare up but normal blood test levels
CRP - finally some light at the end of the tunnel, for lowering inflammation naturally
