This is my first post on this very helpful and informative forum.
I am 73 and was diagnosed with GCA last October.
My initial symptoms were head pain, neck pain, fever and tingling in my face and head. I don’t have jaw pain.
My GP put me on 40mg prednisolone and requested an MRI and referred me to a rheumatologist.
I had already been taking 40mg pred daily for three months before I had the MRI of my head, which was normal. I also had to wait some time before seeing the rheumatologist, who put a question mark over my diagnosis. He suggested that I reduced the pred by 10 mg every two weeks and then when I got down to 10mg, reduce by 1mg every two weeks and then readdress the situation – I am now taking 9mg. Unfortunately, I am showing symptoms again and have requested a blood test to check my ESR and CRP.
I wondered if anyone else experiences the tingling sensation in the face and head because my GP and consultant seem dismissive of it.
Thank you
Written by
Legoboys
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Think you need a second opinion.....your symptoms sound very GCA-like to me.
You don’t have to have jaw pain, not everybody has all the symptoms, but you have enough for it to be GCA. If your Rheumy doesn’t think you have GCA, did he suggest what he thinks you might have?
Flares are common within the first 6 months particularly in GCA.
By “tingling” do you mean neuralgia type pains? And is face/head tender to the touch?
You need proper advice from either Rheumy or GP....and if neither are helpful, then a visit to A&E.
The tingling in my face isn't pain. It's as though my face is recovering from a local anesthetic.
Occasionally my head is tender to touch, but not a great deal.
My Rheumy was non committal about my diagnosis. To add another thing to the pot, he was interested in the fact that I had had a shingles vaccine two weeks prior to diagnosis.
I have read reports on the shingles vaccine linked to GCA and all trials seem to be inconclusive, so the jury is out on that!
Btw, I should have mentioned that I am a lady - Legoboys is a bit ambiguous!
Ahh...shingles vaccine may well have muddied the waters..,,but it’s a long time ago to still be affecting you. Go ahead with blood tests- in the meantime might be with trying paracetamol to see if that helps with symptoms- if it does, Rheumy may be correct in thinking it’s not GCA. If it doesn’t you need to push for better treatment - see jinasc’s reply.
Your medics seem to be a bit cavalier in their approach to a potentially damaging auto immune illness.
Suspecting someone has GCA and ordering an MRI which then takes 4 months is a no-no.
Normally a temporal artery biopsy within 4-5 days is the system or an ultrasound if available.
Do as DL suggests and in the meantime, from now on if, at any time, you experience any blurring, double vision etc then don't wait, off to A&E and if you do meet any resistance, ask to see the A&E Consultant in Charge. Do not be put off, your eyesight is precious.
One question did your GP take blood tests.
BTW could you fill in your profile with most of what has happened to you since OCT. Just add to where you wrote your name. It helps when someone is trying to help as looking through many posts to find back history is a major problem.
Thank you jinasc, I will add some more info to the site. My GP did request a biopsy when he first diagnosed me, but it's not available in my local hospital and because of Covid, everything has been difficult to access.
Yes, bloods were done straight away and alarmingly, my CRP was 166! However blood check last month, it was down to 2, so it will be interesting to see what it is now.
One thing those rates, ESR and CRP are not specific to your current illness, they are indications that something is wrong and they need to find out what it is.
Good Morning DorsetLady. Further to our recent chat, my blood results have come back within the normal range, but I am still having tingling in my face - it had stopped when I was on a higher dose of pred. The tingling started again when I dropped from 10mg to 9mg and I am supposed to reduce to 8mg this week after two weeks on 9mg.In your experience, can you tell me if these symptoms relate to GCA even when inflammatory markers are normal?
Blood tests very often lag behind symptoms.....sometimes a few days, sometimes weeks....so not the ‘be all and end all’ that some docs think.
If you didn't have tingling at 10mg, but have it 9mg, then that’s suggests IF it is GCA related, then 9mg is too low. So a drop to 8mg will only increase it.
Excerpt from guidelines re tapering -
Suggested tapering regimen
. 40-60mg prednisolone (not <0.75mg/kg) continued for 4 weeks (until resolution of symptoms and laboratory abnormalities).
. Then dose is reduced by 10mg every 2 weeks to 20 mg.
. Then by 2.5mg every 2-4 weeks to 10mg.
. Then by 1mg every 1-2 months provided there is no
relapse
Please bring this last sentence to your doctor’s notice.
Hi! I too have tingling in face, sometimes pressure in orbital area. I am 1 and 3/4 years in Treatment for GCA, and the tingling is intermittent. I.e., have had none for 4 days, this morning after walk, tingling in face. I also can have it in my arm, and thigh. Early in treatment I had no jaw pain, or scalp tenderness, but now, the jaw is often my “first ache”…I have been tapering, between 7.5 & 8 mg, also on Actemra and Methotrexate. Seems no matter what levels of meds I have been at, the tingling can still occur. Go to physical therapist for neck, as wondered if nerve compression could be a cause….but what could cause tingling in neck, involves different nerves than what would cause in leg. Mine is all right sided, too. So…lots of unknowns, wish you well, and will be interesting to hear what your doctor advises.
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