I am a 23 year old male and around mid March 2015 I woke up (got up from lying down and raised head) and felt a sharp gush of blood above my right ear that turned into a general pressure that remained to this day. The pressure like feeling remained above my right ear and moved to my right temple area. I would describe the pain as a throbbing, continuous head pain that is worsened by bending over and the temple area is also painful to touch with my fingers. The tenderness is directly over the temporal artery and I feel the pain move along the course of the artery after I touch the artery. Is this a common, tell-tale symptom of temporal arteritis? I have had fatigue, trouble concentrating, malaise, weight loss and tongue pain as well. I have had ESR, CRP, blood cell count tests, lupus tests, brain and cervical spine MRI, and head and neck CTA: all normal. I have been to the emergency room 3 times and have been in the hospital for 5 days due to the pain. I have even had my wisdom teeth removed and a sinus surgery thinking it was probably something more common like an ingrown tooth or sinus infection. I am now very scared and wondering how this could have happened to me. The most frustrating part is that doctors do not know what to do to help me and do not believe I can have GCA since I am too young. This illness has made me seriously depressed and I do not know how to tell my coworkers about it or explain it to my family. I am having a temporal artery biopsy next week (hopefully will show something) and had a lumbar puncture today. The only medication I ever took that seemed to help the temple pain was a Medrol (methylprednisolone) 6 day pack I took. The pain went away after the 3rd day but returned once I ran out of steroids. Could this be temporal arteritis at such a young age? Are there others out there around my age experiencing what I am going through? Please let me know! Let's fight this illness together!
As you were helped by prednisone can you continue with it? At least it is solving the pain problem, which is half the battle. Some people, about one in five, do not have raised ESR or CRP anyway, which makes diagnosis more difficult. Just because you are young I don't think doctors should discount Temporal Arteritis if it fits. Biopsies may be negative for various reasons such as taking prednisone or getting the wrong bit of the artery.
Thank you for your response. I will take prednisone 60 mg/day after the biopsy is done to see if my symptoms can improve. Hopefully the biopsy will fix the pain.
Hello Devin, I'm so sorry to hear what a rough time you are having, especially at such a young age.
Yes, although quite rare, it is quite possible to succumb to temporal arteritis at a young age. There are also patients who are diagnosed with TA in spite of having normal blood test markers (ESR and CRP).
All the symptoms you mention can be experienced with TA. Other symptoms can include jaw pain on chewing and a low-grade fever. Have you had any problems with your vision, such as pain or blurring?
Your experience of the pain resolving within 3 days of taking steroids and then returning within a short time of stopping the short course would be taken by many medics as confirmation of TA.
I do hope that the biopsy will come up with a definitive answer but even if the biopsy is negative it still doesn't prove that you don't have TA as it is possible for the large cells they are looking for to escape the tiny portion of artery removed.
If at any time between now and the biopsy you experience any problems with your vision, no matter how slight, you should go immediately to the emergency room where immediate treatment with high dose steroids should be instigated to protect your eyesight. I fail to understand that if the previous short course of steroids proved so successful in resolving your pain, you weren't kept on them for the long term. Lots of good luck wishes and do come back and let us know how you get on.
I did experience eye pain in time in July this year accompanied by double vision. These symptoms resolved in about a day and never returned. I will go to the emergency room if I experience any more visual symptoms.
Did you seek emergency investigation during that time of eye pain and double vision, Devin?
If anyone experiences visual disturbance of any sort, it should be treated as an emergency, not just with a view to the possibility of it being Giant Cell Arteritis, but to rule out other very serious causes, including detached retina and stroke. The former was experienced by a close friend over a year ago and her treatment is still ongoing. The latter was experienced by our very fit son at the age of 39 who didn't realise that waking up one morning with blurred vision was a sign of something that needed immediate investigation so the necessary blood thinning medication wasn't instigated quickly enough to improve his vision sufficiently to meet DVLA requirements. However, he and us feel very blessed that, apart from being unable to drive and needing ongoing medication to keep his blood thin, he is otherwise fit and healthy. One of the members of our Surrey PMRGCA support group contacted me one weekend having experienced a similar problem with his vision and, of course, because he was suffering from PMR, it was assumed that GCA had arrived on the scene, but following my persuasion for him to go straight to A&E it was discovered that he had, in fact, experienced a TIA (Transient Ischaemic Attack), and he has since been on the same medication as our son.
So please everyone do seek immediate expert advice with any sudden eye problem, and pass this advice on to your nearest and dearest as well.
Hi Celtic. I would like to re-enforce your advice regarding loss of vision or head pain/visual disturbance.
I was diagnosed GCA in July this year. Been one between 60mg and 20mg at any given time. Really erratic dosage regime. Rhuemy said reduce, A&E increase, I was never sure what I should be taking.
I have had all the CTs, MRI, Dexa scans and x-rays and blood tests.
My MRI of brain and spine was reported "no significant abnormalities".
I have had about 3 A&E attendances for head pain loss of vision/visual disturbance. Each time was told to incease pred to 60mg. This yoyo-ing led to "steroid induced psychosis" not very pleasant for me or my family.
Anyway, I finally got my appointment through for Ophthalmology to have vision tests. 2 weeks before appointment I had another severe pain in my head and lost my vision for about 10 minutes. Rang GP. He told straight to A&E and tell them you have GCA which I did. 4 hours later still in waiting room. Told another 9 before me, so I left.
When I had my Ophthalmology appointment. They found lesions on the brain confirmed by MRI. I told her MRI had been reported normal. She told me I had had multiple strokes and parts of my brain are now ischaemic, and therefore dead.
I am looking into who read the MRI and reported it as normal. They need striking off the register. But that does not alter the fact that my sight is permanently damaged. Parts of my brain are dead, although I seem to have been "lucky" in that It has only affected my swallowing and balance.
So please, please if you do have ANY SYMPTOMS get it checked out at A&E immediately.
I did go to the emergency room when I had the one bout of diplopia. I was given a head CT scan and was discharged with a pain killer after being told I was having a migraine. I was very discouraged at this point because I knew this headache was different from a migraine. Since the visual symptoms did not return I did not follow up again with the hospital but instead went to an opthamologist who conducted retina exam and field vision test, which were normal.
I'm sorry to hear that you are having to deal with a major illness at such a young age. Have you experienced any weakness, parasthesia, or temporary paralysis in your limbs along with the headache? A young friend of mine was thought to have GCA and after a myriad of tests they were diagnosed with a rare form of migraine, called hemiplegic migraine. It can also affect the vision.Like GCA however it does need to be brought under control. As Celtic has said, you should seek immediate medical help if the eye problems show any signs of returning.
I haven't had any parasthesia of my limbs or much weakness in my arms and legs. The only major symptom I've had is the head pain localized in my temple and felt over the arteries there.
Hi Celtic. I wanted to re-enforce your solid advice re going to A&E if headache/vision deteriorates.
In July I was diagnosed GCA and started on 60mg pred. 2 week honeymoon, then flare. YoYo-ed with pred during this time.
In the meantime, rheumy had arranged a whole battery of investigations; MRIs, CTs, Nerve conduction studies, xrays and BTs.
Headaches and vision deteriorated. On 3 or 4 occasions ended up in A&E with pain and visual disturbances. Always adjustment in pred, which eventually resulted in "steroid induced psychosis"! which was not very pleasant for me or my family. Basically I went mad for a while.
I am now on 20mg but cannot seem to reduce any further without return of symptoms.
MRI brain/spine revealed "no significant abnormality".
Had an appointment with Ophthalmologist who said I still had very bad inflammation at back of eyes and not to decrease steroids by any more. To have eyes re-tested in 4 weeks.
2 weeks later, excruciating pain in head and loss of vision. GP sent me to Emergency Care Centre. I told the triage nurse I had GCA. She said I would be seen immediately. 4 hours later still waiting. I decided to go home without being seen.
When I had my eyes re-tested last Thursday, still really bad inflammation and vision worse in left eye. I was asked if I had had a brain scan. When she read the report she said she wanted to discuss this with the consultant. I knew something was not right. Consultant telephoned the hospital where the scan was carried out for confirmation of report.
Turns out, the MRI had been incorrectly reported. I had multiple ischaemic lesions, some old some new and one recent (2 weeks ago by the looks of things). At first they thought it was multiple tumours but then agreed I had had multiple strokes. I have been fortunate in that only my sight, balance and swallowing have been affected. But angry at the misdiagnosis. I will consider this when I have gotten over the shock.
So please, please follow advice and go immediately to A&E if headaches/vision deteriorate.
Babs, what an appalling situation to be given incorrect results from the MRI. I do hope that now, at least, you are being treated with the appropriate medication to protect you for the future and that in due course your symptoms with your sight, balance and swelling will improve.
Hi Celtic. In answer to your question of being on correct treatment - I don't know. I was told by Ophthalmology appt in 3 months. No information or advice or treatment.
GP said he would refer me to stroke team, not heard anything. Another GP said she would fax a letter to Rhuematology on Friday about medication and phone me back. No phone call as yet. In limbo. Am going to see GP tomorrow - boy will he get it (with both barrels)
Babs, any treatment prescribed will depend on the type of stroke, whether due to a clot or to a bleed. You mention "ischaemic" and this could point to the more common cause of stroke, ie a clot, in which case the treatment usually consists of a blood thinning medication of some sort, and sometimes a statin - important to keep an eye on both your blood pressure and cholesterol.
I do hope that your GP will be able to put pressure on the stroke team at your local hospital tomorrow to come up with an early appointment, and reassure you on all fronts.
A referral to the stroke team is supposed to result in an appointment at the stroke clinic within a week - national guidelines. No appointment should equal a loud complaint!
DEVIN, I'm so sorry that you have this constant pain. I was diagnosed with GCA last Spring. However, my GP 15 years ago thought I had GCA because of my temporal headaches. At that time, biopsy was negative for GCA. It's been a long road getting a definitive diagnosis. In June, the rheumatologist started me on 60mg of Prednisone. I am still on 40mg of Prednisone because of a severe flare up in October.
I do hope the doctors will allow you to try the Prednisone again to see if this will help these terrible headaches. Best wishes with your temporal biopsy. May your doctors have wisdom and compassion for you in their care.
In terms of the "do not believe I can have GCA since I am too young" they should be told about this paper: Giant-cell temporal arteritis in a 17-year-old male
which was actually proven by finding giant cells in the biopsy so there can be no argument about "it can't happen".
There is also something called Juvenile Temporal Arteritis - but is said in some articles I found to be a totally different illness, it goes away on its own or by surgery to remove the temporal artery and isn't usually treated with steroids.
There are cases of GCA in under 40 year-olds - in the 30 years to 2006 when that article was written there had been 13 reported in the literature. Part of the problem is that they aren't looking for it - if you don't look for something you may only find it by accident. But even something that is extremely rare has to happen to someone and it can never be excluded entirely in someone with the clinical symptoms. It is felt by several experts that younger patients tend to present atypically - you have fairly typical symptoms but your blood markers are normal, something that happens in about 1 in 5 patients.
It sounds strange to say it, but I think you have to hope they find giant cells or other signs of inflammation present in the biopsy sample - but you could also be quite emphatic to the doctors about how the Medrol did relieve the pain which returned when you stopped taking it. As someone else has said - if it does something about the pain why can they not at least try it over a longer period.
Good luck - and tell us what they find. Do follow the link I gave you and hand it over to your doctors - let them read the literature too if they haven't seen it before.
Hi Devin,
The key to this will be finding the most experienced large vessel Vasculitis specialist that your can. Where are you based?
Have your Dr's ruled out Takayasu's arteritis and looked for signs of inflammation in your Aorta?
Takayasu's arteritis and GCA are a continuom, both produce large cells but obviously it's difficult to biopsy the Aorta.
The doctors have performed blood tests (ESR, CRP and other auto immune tests) to rule out lupus and other various forms of vasculitis such as Takayasu's arteritis. I have had imaging (MRI and CTA) of the arteries in my head and neck, so I would assume a major vasculitis problem in those internal arteries in my head and neck would show something like Takayasu's arteritis. All of the tests were negative for any problems. I am waiting for the temporal artery biopsy for final confirmation of a diagnosis, if possible.
in reply to
Hi Devin,
I am a bit confused as Takayasu's Arteritis can present with normal inflamatory markers as can GCA ( temporal arteritis ) which is a form of Vasculitis as well.
If your Dr's are saying that MRI and CTA have ruled out Takayasu's etc then surely it should have ruled out temporal arteritis as well?
I'm a 32yo female and I've been being treated for suspected GCA for the last year and a half. I had all the symptoms, extreme scalp sensitivity, pain in temple and new headaches, fatigue, weight loss, night sweats, etc. I never had a biopsy due to my extreme fear of local anaesthetic (I almost died and had to be revived from an anaphylactic reaction to local anaesthetic a few years ago), so that in combination with my age made it difficult to be taken seriously. My GP actually first suggested GCA, but then changed her mind and decided I just had some kind of virus, so I believed her and went away, but months later it got much worse and I sought treatment at a hospital.
I did have a rheumatologist who I went to for a second opinion later, suggest doing a biopsy under general anaesthetic, although I had been on prednisone for a few months by then so I'm not sure what it would have shown, and then he changed his mind anyway on my next visit so I went back to my rheumatologist at the hospital.
When I started prednisone, my symptoms improved about 95% within two days. I'm now on 5mg of Prednisone after gradual tapering down from 60mg, and I also take plaquenil as a steroid sparer.
I think my records state unknown autoimmune disease due to my age and lack of biopsy, but I am 100% certain at this stage that it is GCA that I'm fighting (originally I didn't even believe it was possible myself due to my age, but there's nothing else that fits my symptoms and blood work).
I had to fight hard to be treated because of my age, but I knew something was seriously wrong and I was scared, so I didn't taken no for an answer in the end and I'm glad I did.
Good luck with working out the issue. Feel free to ask me any questions if you have any.
Oh and the other thing is that I only had my esr taken by my gp when I first went to complain about my syptoms months earlier, and it came back normal. It only jumped up much later, and it's always been a bit lower than my crp even now.
My son of 23 is going through the same thing with 12 months he has had CT scan MRI lumbar puncture as well as numerous tablets but nothing getting rid of it permanently - really don't know where to turn next - he's going for blood test Tuesday morning - it's just after stopping him completely in his tracks - hopefully they will find a cure
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