I am confused!I have had PMR and GCA for 10 years (9 years of GCA). I mainly suffer from headaches, feeling unwell and dizziness. So I get confused when I get a relapse which I am going through just now. I have gone up to 17mg a day and have been there now for nearly two weeks. I had been at 7mgs previously and was struggling. Yesterday I felt reasonable but very dizzy and today I have lowered my pred. to 15mgs and feel better. So my confusion lies in the fact that sometimes might it be the prednisolone that has reduced the inflammation but is now causing the headaches and dizziness rather than the GCA?? !!
Any thoughts most welcome. Ian
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That’s a long time to have GCA, are you sure you still have it and it’s not just PMR?
As for your symptoms, wondering if they’ve resurfaced at 7mg ( or do you have them at higher doses) whether might be more related to Adrenal Glands. At around that dose they should be thinking about working again, and as you’ve been on the Pred for so long they may have given up completely.
When you say ‘feeling unwell” do you mean fatigue? That and the other symptoms are signs of adrenal insufficiency. However if you get them above that level of Pred is not that.
Hi, Many thanks for your reply which was appreciated. When I had pmr I had leg and neck pain but I haven't had any of that for years.
I have had two pet scans one 8 years ago and another 2 years ago They showed I had vascular inflammation around my aorta and above. So diagnosed with an GCA. I was told I lit u lie belisha beacon! If, of interest, in both cases I was asked to come off pred. prior to scans completely which I did. My latest, very experienced consultant, advices not to come off pred. because he argues you might be releasing the dragon!! This is what happened to me on the last scan and I have never really settled into a manageable rhythm with the prd. since. So I have been up and down really for much of last two years.
This time I was at 7mg and slowly kept climbing to 8 then 9, consultant agreed with 15 and then 17mgs which is about the top level he says you should need.
This relapse has been headache, nausea, tiredness, pain around right eye socket and the horrible light headless which I get a lot!
Sorry for slow reply but only picking up now after a bad day!! Hope your's has been positive.
"My latest, very experienced consultant, advices not to come off pred. because he argues you might be releasing the dragon!!"
Just what I have said to a couple of people earlier today. However I'm not sure I agree with his "17 is the top you should need". Yes, overall, But you possibly need to go ABOVE that to clear things out. Only then will you get to a lower dose.
Yes it was a bit of a surprise when the consultant announced at the end of my consultation that he felt it was unnecessary, at any point, to go above 17.5mgs. I didn't get a real chance to question why but will try next time I see him in November. The consultant is Rod Hughes so very experienced!
Personally as regards coming off pred. for a scan it is a definite NO! !! Amazing to me that such a critical issue should be up for debate. It has been two years since my last scan and I can't get back to where I was. Best Ian
My primary symptoms for the last few years have been like yours— headaches, dizziness, and generalized feeling of unwellness (hard to describe). I’ve been diagnosed with Wegeners (GPA), though I was always pressing my doctors on the possibility of GCA, because of chronic temple pain and tenderness. I had a negative ultrasound of my temples too (which can be false). Did you have a temporal biopsy? Just curious. My specialist says the Wegeners can inflame the temporal area. In regards to the dizziness, I’ve been tested at two vestibular clinics and seen by two neuro-otolaryngologists, who diagnosed me with Migraine Associated Vertigo or Vestibular Migraine— that was prior to seeing a rheumatologist. It’s all very confusing. And I never seem to feel completely well.
Hi Canygirl61, Thanks for the response and sorry to hear you are suffering with similar symptoms! I am just surface after a difficult da so hoping your's has been more positive. Best, Ian
Tricky. Might be not GCA at all. At 7mg I felt rubbish with fatigue, fluey aches, headaches, light headedness, shakey muscles which subsided as I got to about 5 or 6mg. I think at 7mg the adrenals are not awake properly but the Pred level no longer makes up for it. What made you think you had a relapse by the way?
Hi SnazzyD, Many thanks fot the advice. And yes it is very difficult to know what is going on. Sorry to hear you have similar horrid symptom.
I have had two pet scans one 8 years ago and another 2 years ago They showed I had vascular inflammation around my aorta and above. So diagnosed with an GCA. I was told I lit u lie belisha beacon! If, of interest, in both cases I was asked to come off pred. prior to scans completely which I did. My latest, very experienced consultant, advices not to come off pred. because he argues you might be releasing the dragon!! This is what happened to me on the last scan and I have never really settled into a manageable rhythm with the prd. since. So I have been up and down really for much of last two years.
This time I was at 7mg and slowly kept climbing to 8 then 9, consultant agreed with 15 and then 17mgs which is about the top level he says you should need.
This relapse has been headache, nausea, tiredness, pain around right eye socket and the horrible light headless which I get a lot!
Sorry for slow reply but only picking up now after a bad day!! Hope your's has been positive.
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