I am a 58 year old woman who was diagnosed with GCA 4 months ago. I have been taking medrol (methyprednisolone) and Tocilizumab and just decreased to 12 mg medrol, which is the equivalent of 15 mg. prednisone. Before my initial diagnosis one of my symptoms, in addition to the headaches and jaw pain, was facial numbness and tingling that changed locations but was usually in the lips and cheeks and nose. I also seem to always have some nasal/sinus congestion that is not a cold or sinus infection (saw an ENT). This is not usually listed as a GCA symptom and my rheumatologist has never really addressed it. After the diagnosis and now with treatment I have some days when I don't feel these 2 symptoms as much but they are usually present at some time during each week. Has anyone else experienced these as a persistent symptoms? I have seen a neurologist who does not have an explanation for this numbness (He did an MRI with contrast and did not find anything) but prescribed gabapentin which I am reluctant to try because I don't want to be taking any more meds. I have now had 2 MRIs and 1 CAT scan and there is nothing obvious causing this. In addition, over the past week I have started to feel discomfort in my top front teeth. This is such a strange disease. Thanks in advance for any experiences you might be able to share.
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I do get the annoying tingling on left side of nose, like a non existent hair caught in my glasses. Not so much lately. Also get the feeling of slightly blocked nose. However, I thought this was another pred side effect. Thinking about it though, when I went to GP initially re headaches, I was convinced it was a sinus issue and was expecting to get meds for that! Diagnosed with GCA on symptoms 2 years ago, currently doing DSNS taper on 8mg prednisilone only. I am sure I have read others on here describing the tingling/rogue hair/spider web feeling. Mine moves around but usually on the same side of nose where the temporal pain started. Also had MRI with contrast, nothing of note and no explanation for the tingling feeling from rheumy. Hope this helps but I am not an expert.
Hi I was diagnosed with Gca in May 22 and put on 60mg of Prednisolone I have had the same symptons as you since Feb 23 I got an MRI but nothing showed up which was a massive relief The symptons disappeared for about 6 weeks ? Then returned However I have major issues with my spine and neck also So when I spike to my Rheumatology last May she arrange an Mri in my neck and sent me a letter to say I had issues with my c5 and c6 and that's what was causing this and sent me for Nerve block injections but when I went to get them the radiologists said no and told me to speak to my Spine consultant So due to strikes etc I didn't see him until December and he said no he didn't wanrlt me to get neve blocks and I was told to take nortriptyline They are a lot milder than anything else with less side effects But like you nobody can explain this to me and now it's getting worse again Sorry this doesn't help but maybe worth a try with nortriptyline I was like you but had to try something .
Hi I was diagnosed with PMR approx 2 years again I had all the typical symptoms which were predesalone responsive.
Since the start I I've had ear ache and face pain mainly across my cheeks and pain and sensitivity in my teeth it all feels like sinusitis however I was also getting intermittent scalp sensitivity and dull headaches so throughout this journey I've been concerned my symptoms were GCA related.
My bloods have been normal throughout even before starting predesalone and I don't get the jaw or eye problems, although occasionally my jaw will feel tired . I've seen an ENT specialist twice and had lots of tests which concluded it's not an ear problem and it was thought to be TMJ 🤷 I've also seen a neurologist who also thought TMJ and said GCA is not usually bilateral. I started this journey on 15mg predesalone and am now on 7mg and with each 0.5mg drop the severity of the symptoms I described increases -although they are there most of the time albeit intermittently.
The severity of symptoms usually decreased over a number of weeks but is lasting longer as the dose gets lower. At my last rhumatologist review I was sent for a number of tests: a synachan screening which identified my adrenals are not kicking in , an ANCA test to test for inflammation which came back negative. A Dexa scan- no results yet and a. PET CT scan which I haven't had yet - I was concerned about having the PET CT as it will be the 3rd in 12 months plus I've had a CT colonoscopy, 2 chest x-ray and a mammogram so quite a lot of radiation exposure in a short time.
No one can give me an explanation for the ear pain and it's not listed as a GCA symptom although I have read posts from other that have it some with GCA and some without.
This really is a frustrating disease and there doesn't appear to be a clear diagnostic tool.
Hopefully I'll have more answers after the scan although I do not understand why I'm having a full Pet CT scan when my symptoms are all head and ear related????
Your post has made me think more along the lines of GCA but I really hope it isn't as I really don't want to increase my predesalone as I felt bad enough at 15mg- I felt like like my head was being blown up and had this constant G force feeling in my face ,these eased a bit as I reduced the predesalone.
Other symptoms I have are
Itching in my ears and on my head and sometimes my temples itch🤷 does anyone else get ear pain and itching?
a neurologist who ... said GCA is not usually bilateral. Really not? I think it is!
As for the PET scan, have you raised your concern about the amount of radiation you've had with your consultant? I did when I was offered a second PET scan.
I had the CT scans for other health problems and yes I did raise concern with the rhumatologist about the radiation exposure but was told they are different scans 🤷 I asked if there was another method of investigation like an ultrasound scan or MRI or a biopsy but she seemed to dismiss these as options?
What did your rhumatologist say when you raised concern?
He agreed it would be a lot of radiation and said that it probably would not affect the treatment given anyway. But this was discussing a second PET/CT scan, and I think I misunderstood your post to mean that you were offering a second mixed scan. These do give a lot of radiation - you have to use a separate toilet and keep away from pregnant women for 24 hours - , but it is true that the straight CT scans and XRs give a much lower dose
Thanks for your reply. As I said I've had 2 CT scans in the last 12 months but for different health reasons. I did have a solution through a cannula for one of the scans but I don't think it was the same as you get with the PET CT scan as I didn't have to sit still for an hour and stay away from pregnant women etc and the rhumatologist said the scans were different although I'm not sure how she knew that because she was completely unaware I'd had any till I told her and even then she could only see details on her system of one scan ?I will have the scan but I just can't understand why they opted for a pet CT scan as oppose the ultrasound or MRI? With no radiation? I'm I'm wondering if I should push for this ?I appreciate PMRpro said Lvv can produce similar symptoms as cranial GCA but as all the symptoms I get are to do with my head and ears why not look for cranial GCA before looking for Lvv ? I probably should speak to the rhumatologist again but I don't want them to not do the scan because im concerned about the radiation as they may not offer an alternative and my symptoms clearly need to be got to the bottom of. My only thought is I'm seeing maxillofacial next week and maybe I should speak to them before having the scan incase they can offer an answers to the symptoms ?but then you worry about waiting don't you 🤔 especially as over the last couple of weeks I've had a constant low level headache and increased ear pain- paracetamol does help.
I hope you don't mind me asking but just out of interest why did your rhumatologist want you to have a second PET CT scan surely they would have got the information they were seeking from the first one and I would of thought if not then they'd go down another route of investigation ?
Thanks again for your reply you've been very helpful.
It was because the first one was in April 21, just after increased dose of pred for GCA/LVV had been started, and the second one was mooted last September when I was unable to get off pred, because of PMR symptoms returning. Also because the DF has never improved, and maybe because of the tingling face.
Btw, altho I had the GCA headache and stiff neck, the PET/CT scan showed inflammation in a couple of thoracic arteries and the diagnosis they enter is usually LVV now. A PET/CT scan shows up more than the others, and it certainly lasts longer than a CT scan. As you say, you want to get to the bottom of the symptoms, so personally I wouldn't turn down the mixed scan, seeing as you haven't had one yet. I did ask about all the XRs I was having but the GP said that the radiation in a straight XR was really quite low.
But there's no harm in talking to the maxillofacial person first!
Thanks for your reply sharitone.My understanding is CT scans have the higher levels of radiation exposure with the PET CT being the highest of the 2-. X-rays I believe are not 2 bad .
You said the pet scan identified inflammation in a couple of the thoracic arteries did you have any related symptoms prior to finding out?
These things are relative - and even what you have had probably doesn't take you above the annual limits. Even if it did, there is a justification to make the diagnosis.
It can be - what on earth makes him think it isn't?
At 7mg OF COURSE your adrenal glands are yet starting wake up - that is more than enough to suppress cortisol production. Most endos won't even consider a synathen test until under 5mg and some want to wait for 3mg. Lots of space for that to happen.
Part of the charity funded the pilot study which then went on to achieve an NHS grant for the study that published this shortly before Covid so it may well have been missed. Doesn;t mean the work isn't there though.
I imagine they are looking for LVV (large vessel vasculitis) which can also produce similar symptoms to cranial GCA. All grist to the mill.
Yes, I've had tingling across the central level of my face ever since GCA diagnosis, though a lot of the time now it is barely perceptible. Seems worse when I am tired. A consultant so gave a talk to the charity a couple of years ago said it was definitely a GCA symptom. My rheumy had dismissed it, though he later put it on the application for TCZ.
Sophiestree also has the same with GCA: she posted fairly recently on it.
so I think you can be fairly confident that it is part of the GCA.
Gabapentin?😦I had that a few years go for sciatica, and all I can say is that I would only take it if really necessary.
I have also had tooth sensitivity, mainly to heat, since PMR blossomed into GCA and I was on high dose of pred. I'm not entirely sure which of those was the cause. It did improve a bit below 20mg, but has since remained fairly constant. I have to wait for hot drinks or food to cool down to more or less room temperature. The dentist prescribed Duraphat, but it didn't make any difference. I do wonder if it is the effect of Denosumab. I hope not, and can't find anything to that effect online.
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