GCA flare with new symptoms

[maria40]

Since Sunday I have had a stiff jaw , tingling and tender scalp and pain at base of skull which I recognised as symptoms of a GCA flare. I spoke to duty GP by phone and was a bit disconcerted that she didn't at first seem to know what I was talking about and then said that I must mean temporal arteritis which didn't indicate that she had read much about the condition recently. I was sent for blood tests and have to get results today. But now I've developed a nasty and rather frightening new symptom: I get an electric shock type of tingling right down my body and then feel very cold. I had several of these last night and was woken by one in the night. I was on 9mg prednisolone and GP I spoke to on Monday said I should go up to 10mg but that doesn't seem to be doing anything. I'll try to see another GP when I go in for test results but don't hold out much hope of a quick appointment. My instinct would be to go up to 12.5 but am hesitant in case something other than a GCA flare is going on. Help please!

[Hidden]

Gosh poor you. I had a TIA in the States last September, where I went numb/tingling all down my right side, and had weakness of my arms and legs. It lasted for about 1/2 hr. I came home and CT scan showed that I had previously had a stroke (though I am not convinced it wasn't the TIA I had a few days before). The TIA consultant and confirmed by my lovely GP said that if I thought I was having a TIA or stroke that lasted for more than 10 mins an ambulance should be called (and definitely not to just go to A & E) and they would assess if one was having a stroke, and then take one to a specialist department who would administer the vital medication, that needs to be done in a 4 hr window (why they say not Accident and Emergency is that they can easily pratt around for this 4 hrs, as they did with me). If just a TIA then one needs to inform the GP.

I do wonder if you should insist on more investigations? I wonder what others think

Bridget

[maria40 in reply to Hidden]

Thank you Bridget. I hope you're alright now. I went to my GP surgery this morning and have been promised that the duty doctor will ring me back this afternoon. I do want to talk face to face with someone and find out what's going on. Some of the symptoms are those of a GCA flare but the tingling is something new, I hope not a TIA or stroke as the tingling wasn't continuous but in short waves some time apart. Thanks for your helpful information.

[Hidden]

Hi maria40, Bummer, that sounds most unpleasant!!!! I hope you manage to determine what is causing that and get it sorted, soon! Best of luck!

[PMRpro Ambassador]

i get similar shooting tingling feelings - but they are rapidly followed by a hot flush!!! This is a bizarre disorder...

I can't see how any doctor can imagine that increasing a patient's pred dose from 9 to 10mg is going to help a GCA flare. They are definitely potential GCA symptoms.

Where are you? Have you a decent A&E near with a rheumatology department in the hospital?

[maria40 in reply to PMRpro]

Thanks for your reply. Fortunately, the symptoms seem to have lessened today , scalp not tender, jaw pain lessened and only a few tingles. I saw another GP in the practice yesterday who recommended going up to 15mg if symptoms persisted and most interesting was his comment that most GCA patients seem to know more about their disease than their doctor does and he would leave the increase to me. Quite the opposite to many doctors' approach but still a little unsettling when one wants a clear picture of what's going on. Thank heaven for this forum!

[PMRpro Ambassador in reply to maria40]

It's probably as well most patients know more than their GP when it comes to GCA!!!!!