Just looking a bit of advice on reduction of Pred. I was diagnosed 4 months ago with GCA and PMR at only 49. Have more recently been diagnosed with diabetes and anxiety as result of steroids. i also have had Fibromyalgia for 7 years. I was on 40mg Pred for 10 weeks and then told to reduce by 5mg every 2 weeks by Neurologist. However have been on 25mg for a week now and neck shoulder back hip pains have all returned again. Also have burning pains in hands and feet. Is this normal? I also still have blurred vision , jaw pain , numb face, sensitive scalp, headaches and head sweats which I presume is the GCA ? I have been to GP last friday and she said i need to discuss this with Neurologist next week. I did not expect all these symptoms to return at this level of Pred.
I think you need to go to A&E at your hospital as soon as possible (by that I mean this evening, do not wait until tomorrow) and tell them all this. This was a very fast reduction at quite an early stage of GCA and the symptoms you describe are typical of GCA so need to be seen and treated - you will need a much higher dose of pred for developing GCA, a dose of 25mg is not enough to deal with GCA swelling and GCA is a medical emergency. If you told your GP this on Friday she was very remiss in not sending you to hospital. Please make sure you tell the triage staff your history of GCA diagnosis and emphasise the visual problems and jaw and scalp pain. The visual problems suggest the swelling is affecting the blood supply to your optic nerve and your sight could be at risk. I don't want to scare you - I just want to make sure you understand that this is urgent.
Thankyou for your reply. I have been to eye casualty twice and optician twice and Opthmalogist with these GCA symptoms over the last 3 months and no one seems to treat them as a medical emergency. I keep being told by everyone as I am under specialist care of Neurologist only he can change treatment. I will be seeing him on Thursday. My headaches are not as frequent as in the first 2 months but I do worry about the other symptoms. Yes you have scared me again as you did in Sept and after spending 6 hours in eye casualty I was sent home again. I find it all very frustrating never mind stressful.
I'm so sorry - they are talking rubbish though, if it is an emergency then they need to contact the neurologist.
Where are you? It is very unusual for GCA to be under a neurologist, it is more often than not a rheumatologist in the UK and much of Europe but the eye people should also be aware of the risks.