I was diagnosed with possible GCA in October 2020 and put on 40 mgs of Prednisolone. This was later discounted and the diagnosis was changed to PMR and since then I have been slowly reducing the steroids and have got down to 4 and a half mgs. Prior to all of this I was experiencing electric shock symptoms down the left side of my face and through my tongue with pronounced visible hemifacial spasms which had gone and off for years and which various doctors considered was trigeminal neuralgia. All this vanished when I was put on steroids, only to reappear when I reduced to four and a half. I would be interested to know if anyone else has had a similar experience. I have gone back to 5 mg and hope I will not have to go higher. This is just for input to our lovely group of helpful friends.
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butterflyfarm
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I was diagnosed with a vestibular schwannoma (a benign brain tumour)in September 2015 by MRI. My symptoms were tingling on my face, end of my nose and tongue. It was tiny but very close to my auditory nerve so I ended up receiving radiotherapy in 2017 to reduce the growth of it. PMR arrived in January 2016. All very muddled but I’m now on 5.5mg of prednisolone, the lowest I’ve ever been, and the facial symptoms are significantly worse. Since around Christmas it started like electric shock in my jaw and gum. I have other symptoms of trigeminal neuralgia which can be severe at times and particularly when eating. I tried amitryptaline with limited success and I’m now on tegretol which is better but it hasn’t cured it. On the positive side my PMR symptoms are good!! I’m assuming my neuralgia coincides with the reduction of steroids which does after all mask a lot. I’m seeing my rheumatologist at the end of June so plenty to chat about! I’ve already spoken to my neurologist and she says this sort of thing happens after the radiotherapy.
Good luck finding a reason but vestibular schwannomas aren’t common and my dentist and GP couldn’t resolve my symptoms which I’d been reporting for a few years.
Hi Lochy, thanks for your reply. Your experience sounds quite traumatic and I hope your discomfort improves. It is just so frustrating that GPs and dentists don't have any answers - I went down that route also. I think you're right about it coinciding with reducing the steroids and perhaps my comfort zone is 5 mgs. I am seeing my rheumy in August, and to be fair to her she is letting me reduce at my own pace. Kind regards, Vicki.
Hi this is a strange one ! I do not have the shocks in my mouth , but i have had 2 major flares and each time i get terrible electric shocks through my body ! I get them mostly in my joints , ie shoulders elbows knees ankles . back of my calves ! The first time it happened i was literally so shocked i wondered what was happening to me. Told my GP, Rhuemy etc no one seems to know ! I am just getting through another major flare and the exact same thing happened again ! Like you both times it started when i was reducing i can only think its the bodies response to that. Awful that the powers to be do not seem to have a clue . The one positive thing i can say to you is that it does seem to lesson slowly when you get used to the new dose! Good luck i really do feel your pain. Best wishes Viv🌷
Thank you so much for replying Viv, I thought I was going mad, as nobody seems to give me an answer to the problem. It helps to know other members on this site experience strange side effects as I feared it was GCA that I was originally diagnosed with. It certainly is one step forwards and two back! Kind regards, Vicki.
I recently had mild jaw /ear pain which made me take notice as I have GCA… I thought it was the start of jaw claudication as that was the only symptom I’d not presented with when showing signs of GCA last April 2021 (headaches and tender scalp yes but no jaw probs till now) I’d been on 12.5 mgs for a month so I thought it could be a flare so I upped my pred to 15 but it was getting worse and giving me shocks up the root of all my lower teeth on the right jaw..I also took paracetamol in between to cope as it felt like I was chewing on tin foil..still no joy as nothing was helping the pain that came in waves..Then a couple of nights later when retiring to bed my sight seemed odd as if there were shutters closeing down one slat at a time till it was really black and yet my eyes were wide open but then it was the same when I closed my eyes ! I felt scared in case my sight would be gone by morning..it was such a strange thing I was experiencing.. i got up and took my pred dose to 30 mgs still scared to close my eyes ..my room is reasonably light as there’s a street light close by and this shutter thing was scaring me.. anyway I obviously dropped off to sleep and woke up to bright sunshine and my sight seemed ok and my jaw pain had gone so now I’ve tapered lower and all seems ok at present..phew..
If it happens again - call 999. They are signs that could also be of a stroke - and if it were, pred won't do the job. Calling an ambo once too many is far better than once not enough,
Thanks for your reply..i feel alittle scared that it is something serious..my eyes have felt uncomfortable since the start of 40mgs of pred but felt much better as the dose got to 15 but now at 17.5 due to the jaw pain which has now gone...it's never ending. 😟
If you are worried it is something serious - that is justification enough to call 999 because they are symptoms that should be taken seriously. And they need investigating sooner rather than later - even waiting overnight is far too long. It is a bit scary - but ignoring it can make it even scarier.
Up date ..Had tests done today at A&E for TIA..awaiting results...the ESR reading of 27 today was the lowest its been since before diagnosis of GCA last year when it read 82 ! So its not GCA related apparently..i did stop the aspirin after 6mths but back today.. I'll keep updating this post as and when..
I am hoping that going back up higher on the steroids will relieve the problem. If not I shall contact my rheumy sooner rather than wait until August. It was a struggle from 7 to 5 mgs; albeit at half a mg every 6 weeks, but under 5 seems a step too far! It doesn't help that I am also type 2 diabetic which causes neuropathy. In comparison, your journey sounds awful and I wish you continuing better health.
Up date: Thanks for the heads up about AF..thankfully it’s not Amaurosis Fugax…so…yesterday…I was seen at my local A&E hospital and told them I have PMR/ GCA and had an episode with my vision few nights before, they did tests for a TIA, then this morning, a phone call at 8,20 to go to TIA clinic for 10 30 appt at the major hospital 16 miles away for a ct scan and discuss results from A&E, now I was worried but glad my son could get me there as it’s a nightmare of ring roads and juggernauts and A&E told me not to drive till I know the outcome of scan / test results..(gave a huge sigh of relief when told it wasn’t a TIA but possibly a migraine). A migraine ? never would of thought it could be that ! I’ve had migraines over the years but never had a pain free migraine..I’ve had the flashing sparks of brightness with migraines but there’s always been a headache with it..but the blackness slowly dropping down repeatedly over both eyes had never happened before so it was a surprise to hear it could have been a migraine. So the lovely consultant with a gentle manner and softly spoken said Amaurosis Fugax was ruled out as that only happens in one eye not both at the same time…whereas my episode of blackness dropping down horizontally like a black curtain was in both eyes even when open or closed repeating itself after blinking…it lasted no more than a minute.. the whole episode was odd and especially as I was fine the next morning and carried on as normal…but I’m so relieved it wasn’t a TIA…my dad had 2 strokes in his 70s the first was mild but caused permanent numbness in some of his fingers but the 2nd stroke was major and lasted 5yrs before he passed away 15 yrs ago..he had a few TIAs along the way eventually making him totally bed bound and silent for the last 2 of those 5 years.. his was caused by cholesterol and today I was told my cholesterol is high 7.5 but from the steroids not my diet as I’ve been on a plant /Mediterranean diet for over 3 yrs since my Gall bladder flare up and diagnosis in 2019 which hasn’t caused me any problems since then and so discharged ..plus my daughter is 100% vegan and rustles up some nice food ..pity she doesn’t still live at home
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