Hi can anyone tell me the symptoms of GCA and how to get tested for it please?
I was started on 20mg prednisolone a day in July although my symptoms began end of March this year. this only helped my pain and I spent most of the day in bed. After 3 weeks I was told to reduce by 5mg a week but after 4 days of the 1st reduction I rang my Dr and told her I was in too much pain. She put it up to 30mg a day. After 2 weeks I was still in some pain. Phoning our GP practice is very stressful trying to get the receptionists to agree to let you talk to a GP. So I tried 40mg a day and I'm doing good now except for tiredness and I have a sore head. My right eye weeps. Also I've got a pain in my ear/jaw and think I have tinnitus cos I can hear an annoying noise all the time. I have a telephone appointment with a rheumatologist on Thursday morning. I'm worried I won't know what to ask when I speak to him/her.
My other meds are 40mg a day Omeprazole. 100mg Tramadol. 300mg pregablin
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Hello. It sounds like you’re in a bit of a pickle having been made to reduce your steroids much faster than one would normally. Which country are you in? This will affect the advice you’re given but the UK and Europe is now going to bed, so it may not be until morning that you get many replies. Were you initially diagnosed with PMR? What were your presenting symptoms? A starting dose of 20mg is way too low for GCA which is why I ask. Why were you also put on Tramadol and Pregablin?? If you have GCA and or PMR they won’t work, so were they trying to hedge their bets on other diagnoses? Tramadol can make you feel very peculiar so if it doesn’t do anything for your pain, it’s not worth taking.
Until you come back with more info, if you get any increase in head symptoms and/or eyesight symptoms like black spots, loss of vision even if only for a few seconds, or anything unusual, go straight to ER/A&E.
Morning SnazzyD. Yes I'm in the UK. I woke up one morning in March in intense pain in the tops of my legs. Sitting, standing was awful. Also had shoulder and neck pain on the left side . My right thigh is very numb and my left a bit numb so it was assumed I had a trapped nerve.Hence the pregablin and tramadol. But each week I got worse and in more pain the more I moved. I was sent for a MRI on my back and shoulder. My back was good and my shoulder showed fluid and torn tendons(more pain). It wasn't until July that my Dr did a blood test and put me on Prednisolone 20mg. By then I could barely walk as my knees hurt so much. First saying I had PMR but after 3 days I was still in a lot of pain although not as much he decided I didn't respond quickly enough so it wasn't PMR. So was referred to rheumatologist.
I was diagnosed with GCA approx five weeks ago. My initial symptoms were jaw, teeth and ear pain for about 6 days, which then changed to severe headaches.
Good luck with your telephone appointment tomorrow.
As SnazzyD says the other pain medication will not help if it’s GCA.
Fast reduction will not have helped either with your overall feelings.
GCA can affect the ears.
A temporal artery biopsy (TAB) can sometimes confirm GCA, but it needs to be done within a few days of starting Pred, so I doubt if one would be useful to you now. The major things to help with diagnosis is symptoms, inflammatory markers (although not foolproof) and your response to the steroids.
Nothing more to add, except a bit more info would be useful to us, and if headaches gets worse or sight affected then straight to A&E.
Hopefully the Rheumy will ask the right questions. Just jot down what’s happened up till now so you don’t forget anything, and can answer his questions.....and let us know the outcome please.
Regards testing, the only tests that give you a definite diagnosis are either a biopsy from an artery in the temple or an ultrasound (specialist, not just a normal u/s). However, really only a positive result is reliable because it is very easy to get a false negative. So, often a negative result can mean carrying on with steroids anyway if the history fits because not to do so risks the eyesight. Another issue is the longer you are on high dose Pred the more likely you will get a false negative. If you get a positive you know it is.
The other usual test is a blood test for general inflammatory markers. This is also tricky because they are not just specific to GCA or PMR and up to 20% of people with definite disease have normal results. Some docs take a normal result as a definite non-diagnosis of GCA.
Personally, at 54 I had the full set of GCA symptoms but normal blood tests and negative biopsy. They had to proceed as GCA for reasons I’ve said.
Your GP obviously didn't know much about PMR or GCA. You don't reduce 5mg per week with them even if that is how you use pred in other things - 5mg per month is too much! I'm assuming you are in the UK since you are on prednisolone but the tramadol and pregabalin are not appropriate for PMR/GCA since they won't work.
The jaw pain and tinnitus could suggest there could be GCA involved - did you have a headache before you started pred? Is the jaw pain all the time or only when you are chewing/talking? All those would be factors to tell the rheumy. You need a list of all the symptoms you have had and how they responded to the pred.
"this only helped my pain and I spent most of the day in bed" - that is what pred is meant to do in PMR so what was making you need to stay in bed?
A lot more detail would help us make sensible comments.
I'm still in bed most of the time because I'm still in a lot of discomfort. I cannot sit because it hurtsthe backs of my thighs after 10min so after walking around a bit I come back to bed and support my legs with a pillow. Some days I can't use my left arm due to tendon tear so have to support that on pillows too. I also have a lot of numbness and sensitive skin in my thighs and hip and get really bad electric shock type pains hence the pregablin. My Dr said the rheumatologist told her to tell me to drop 5mg a week until I came off them as I'd only been on them a few weeks it wouldn't affect me. I can't seem to sleep more than 4hours a night and I get tired and breathless easily.
3 weeks is absolute maximum you can come off steroids quickly as you describe....especially if on higher doses. Is Longer than that your adrenal gland will have gone to sleep, and needed to be nudged into working again.
Hi yesterday I spoke with the rheumatologist who wants me to take amytriptilyne at night and yet again reduce the prednisolone by 5mg a week until I reach 10mg then reduce at a much slower rate, He wants to see me at a face to face consultation in 4-6 weeks. He also told me any problems I can just ring straight to the rheumatology department which for me is reassuring as I can never get hold of the Dr. So will have to wait until he gets in touch with my Dr and will give it a go.
I have been feeling much better over the last few days. Except I think my other problem is I have a trapped femoral nerve and I can't stand for long.
Sorry if I sounded hard work. I had got myself into a state over the last 5 months this has been happening.
Obviously the rheumatologist is sceptical about PMR on the basis of the dose you needed and wants to see you without the high dose of pred. Which is fair enough - though I'm not sure what the amitriptyline will achieve except it might help the lumbar nerve pain. I would say the electric shock type pains can be due to PMR - they are for me.
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Leveled out - My Actemra story continues 
Shout out to my GP
Odd shaky feeling in my legs
GCA- fuzzy, prickly feeling in my scalp
All in my mind, apparently!!!
