Temporal arteritis

[Purefaith]

Could you tell me what signs and symptoms you had with Temporal arteritis? What is all the testing?

[SheffieldJane]

Not personally, but it would be an unusual headache, jaw pain upon chewing, tongue pain upon speaking and any odd visual symptoms mainly. I hope this helps. Do seek urgent medical assistance if you think you have Temporal Arteritis, it is a medical emergency, like a stroke.

[Purefaith in reply to SheffieldJane]

I have been having alot of issues for sometime now and can't get much help with Drs unfortunately. I did have an MRI without contrast on 01/08/20, but I'm not sure if that would show anything for Temporal arteritis or not.

[SheffieldJane in reply to Purefaith]

I don’t think it would. I asked once and was told that there was too much brain activity and that confused the picture. Diagnosis of GCA or Temporal Arteritis is mainly made by the symptoms you report, sometimes supported by high levels of inflammation in your blood, because time is of the essence and doctors need to get you on 40-60 mgs of Prednisalone, because of the danger to your eyesight. It can be diagnosed by a Temporal biopsy of the artery under suspicion - this is not fullproof because they can miss the correct section of the artery and give a false negative. It can also be diagnosed by an ultrasound test. This has to be done by a specially trained technician. There is apparently a shortage of appropriately trained technicians. The usual thing is to treat on presenting symptoms and confirm by biopsy, although Prednisalone will effect the biopsy results. If you think that you are having the symptoms of Temporal Arteritis and your doctors are not taking it seriously, then it may be beneficial to go to A&E and have medical investigations there. What are your symptoms currently? There are people on the forum who have first hand knowledge of GCA who may be able to assist you. My diagnosis is PMR.

[Purefaith in reply to SheffieldJane]

I have read on FB groups the different opinions if GCA would show on an MRI or MRA. Some say yes. I know MRA shows the arteries. I have so many different symptoms. But for this main concern, I get pressure all over my head, I get sensitivity on the top of my head, I also have deep ear pain. I'm sure I'm missing some, but those are the main ones. I don't have the vein sticking out, nor do I have the actual pain in the temple itself. I would prefer no biopsy. 😥 If I can help it. I have been to the ER a couple different times in the month of December unfortunately. Like I said, I did have an MRI without contrast and PCP is trying to set me up with a MRA as well and a MRI of my cervical spine as well. I'm just so full of anxiety and fear over everything. Plus I have Hashimoto's and now other auto immune antibodies present.

[SheffieldJane in reply to Purefaith]

I am sorry that you are feeling, understandably, anxious. This limbo is dreadful. Gather up your remaining energy, you need the diagnosis now.

[Purefaith in reply to SheffieldJane]

I don't know what to do in the meantime awaiting these Dr's appointments.

[SheffieldJane in reply to Purefaith]

I think I wouldn’t just wait. I would go to A&E and explain you fears.

[Purefaith in reply to SheffieldJane]

Well, I just returned from the ER. Not feeling the greatest. Of course I also have Hashimoto's with an enlarged thyroid. Was having swallowing issues earlier so decided to go in. Told the ER Dr about the worry of Temporal arteritis. He knew what I was talking about before I even got the name out of my mouth. Of course he didn't do anything pertaining to that in particular, he just said he doesn't feel that it's what my issue is. He did agree to check my ESR and CRP. I don't have those exact numbers, but he said my ESR was okay. So, I guess I still didn't get anywhere and still feeling horrible.

[Hidden in reply to Purefaith]

Temporal arteritis is gca in the temporal area I believe but giant cells can be present in other parts. Hopefully there will be some movement with this visit to the ER. Feel better soon, you need to know what's going on.

You have mentioned pain in the temporal area and the throat issues your hashimotos causes but what exactly are the other symptoms you are having?

[Purefaith in reply to Hidden]

I have head pressure, right ear pain, scalp tenderness, feeling horrible, very bad anxiety.

[Hidden in reply to Purefaith]

It sounds like it could well be gca. I hope you get some joy from your Dr. Obviously if you have any visual symptoms don't hesitate returning to ER. Good luck!

[Purefaith in reply to Hidden]

This is so frightening. What if it causes a stroke or aneurysm?

[SheffieldJane in reply to Purefaith]

The big issue is the threat to your eyesight. The doctor you saw in ER doesn’t seem to think that you are in that position yet. I would want ,

Ideally, to see an Ophthalmologist or at least a really well equipped Optician - mine has everything! Maybe try that angle. The rest is not so urgently crucial.

[Purefaith in reply to SheffieldJane]

What exactly would I be paying close attention to about the eye sight part of this?

[SheffieldJane in reply to Purefaith]

Double vision is a reported symptom but unfortunately some patients get no warning at all. An Ophthalmologist would be able to see if something looked amiss.

[PMRpro Ambassador in reply to SheffieldJane]

Not always - only if the blood flow to the optic nerve has already been compromised for a time in which case it looks different where it attaches to the retina. But it is a good start ...

[Purefaith in reply to SheffieldJane]

We have to set appointments here unfortunately. I already have 10 mg of Prednisone that was given to me from a walk in care a few weeks ago that I didn't take. I wonder if I should take one?

[Chrisellie in reply to Purefaith]

Think a PET scan with or without prior ultrasound works best, I believe

[PMRpro Ambassador in reply to Chrisellie]

Not really for cranial GCA - the brain takes up a lot of contrast anyway and that swamps the signs of inflammation.

[Janstr]

I had undiagnosed PMR & had lost over a stone in the 10 months pre the onset of GCA symptoms. The GCA symptoms I had were stiff neck and shoulders ( which may have been PMR), a low grade headache behind one eye that wouldn't go away (I had it for over 2weeks) tender scalp & jaw & teeth so sore that I couldn't eat; it got a bit better around lunchtime. A lot of people report having a severe headache.

The purpose of the temporal artery biopsy is to try to find giant cells & prove that you do have GCA. However if the test is negative as mine was, this doesn't mean you dont have GCA & you still need to be treated for it if you have the clinical symptoms .

[Hidden in reply to Janstr]

Did you have a biopsy and what mg were you started on? So hard when little things niggle and not sure whether it should be reported.

Anne

[Janstr in reply to Hidden]

Yes I did have the biopsy which was negative. However, because I had the symptoms of GCA was treated for it & started on 40mg pred. As far as I can tell, the only advantage of having the biopsy is to get a positive diagnosis, as if the test is negative the treatment is the same. If you have the symptoms, whether or not you decide to have the biopsy, you do need to get the treatment to avoid going blind. GCA is a medical emergency.

[Daughters2]

My mum sadly was misdiagnosed and is totally blind over a period of a few days. 2 weeks before she had headaches and scalp tenderness as in painful to touch so don’t delay.

[DorsetLady PMRGCAuk volunteer in reply to Daughters2]

I notice you have not raised a post about your mum, but have put info on your profile.

In answer to your question, no there is no miracle cure, once sight is gone it’s gone.

I guess you’ve involved all the agencies you need to. - RNIB, local social services, local help groups for the blind etc.

Please raise a post, then we can give advice on how she can deal with her GCA and her Pred. Her sight loss is just one aspect of her GCA, and although we can’t help her much with that we may be able to help with other matters.

Unless someone picks up this reply like I did and go to your profile they can’t help.

You’ve obviously found the charity - PMRGCA, or you wouldn’t be on here - pmrgca.co.uk/content/home-page

They may have a local group your mum could attend if she wants - see “In your area” on menu .

[Daughters2 in reply to DorsetLady]

Thank you so much. Yes we’ve had quite a lot of help angel guidance. It’s early days. She was only back from hospital 9th Dec but she’s doing well. She’s starting to get bored now but not quite ready for groups but she will. Thank you I will do a post. I’ve subscribed too x

[DorsetLady PMRGCAuk volunteer in reply to Daughters2]

Good....no she’s probably not ready for “groups”, she needs time to get her head around things and build confidence to go outside - but sometimes just talking to someone in a similar situation - if only on the phone helps.

Give her my best wishes.

[Hidden in reply to Daughters2]

I think about your poor mum a lot. How is she doing ? This should never have happened.

Only having the sight in my right eye, GCA scares me.

Kindest regards

Anne

[Daughters2 in reply to Hidden]

That’s so kind of you to message. I’m struggling more than mum! Not really but I honestly can’t believe it. She’s doing well with her stick. Said she got her license yesterday. I’m staying tonight and tomorrow. She said she managed to sleep a bit better last night xx

[Hidden in reply to Daughters2]

It's pretty life changing for ir you all really. I certainly thi k about you and your mum and the other members whose parents have lost their sight. Big hugs and positive thoughts., 💜

[Daughters2 in reply to Hidden]

Thank you so much. X

[Hidden in reply to Daughters2]

So glad you replied. Tell your mum that we're all thinking of her and wish her all the very best. Sounds like she's being a very brave lady. Lucky to have such lovely caring daughters. I have one daughter (only child 44) she amazing too and helped me through my bad illness when I lost the sight in left eye due to bacterial meningitis, that was through neglect on both the GP and hospitals side.

lots of good wishes

Anne

[DorsetLady PMRGCAuk volunteer]

Undiagnosed for a long time - stiff shoulders and upper arm pains, followed by general fatigue (no weight loss), pains in neck culminating in severe headaches like I’d never experienced before, jaw claudication and blurred right eye eventually losing sight in that eye within 4 days.

It was obvious what mine was, so no biopsy required (which is one test), bloods tested for CRP and ESR (raised inflammation) - but diagnosis should be made on symptoms initially.

Now referred to as GCA - Giant Cell Arteritis.

If you think you have it you need to seek medical attention, as Daughters2 says total sight can be lost within days.

[lyndamcw]

I have temporal arteritis and it was diagnosed by a positive biopsy taken from the side of my temple..totally painless..I then had petscan to see if peg areas are involved..symptoms headaches which you are not used to mostly st temple but also over my eyes scalp tenderness and jaw pain sometimes like tooth ache..It's not a thing you can hang around with as your sight can be affected very quickly...I mean days and it is irreversible...you may have to suggest to your gp that you need this looked at asap or get to A and E.

Hope this helps

Lynda

[Luciejc]

My symptoms were severe headache, neck and jaw pain, weight loss, fatigue and general malaise. Misdiagnosed by GP with PMR and prescribed 10 mg prednisone. Did some online research, panicked and made appointment with a rheumatologist. She saved me! Biopsy scheduled, was positive for GCA and prescribed 50 mg prednisone even before the biopsy. Biopsy was not a big deal and worth it. My GPs blood work did show inflammation. Good luck and let us know how you are doing.

[Purefaith in reply to Luciejc]

I went to the ER yesterday evening. ER Dr put in an order for me to see a rheumatoligist. My ESR and CRP were normal. Although I'm still very scared.

[alvertta]

I hope you have gone back to your doctor. Good luck.

[Purefaith in reply to alvertta]

I don't even have my first rheumatologist appointment yet 😥

[PMRpro Ambassador in reply to Purefaith]

If there is any question of GCA you need an emergency referral to a rheumatologist - GCA is a medical emergency just like a heart attack or stroke.

[Purefaith in reply to PMRpro]

I went to the ER yesterday evening. The ER Dr has put in an order for a rheumatologist. I'm still very worried, although my ESR and CRP were normal.

[Grammy80 in reply to Purefaith]

I totally understand how anxious you are to get that appointment...I'm in the states and wonder...is there anything you can do to expedite a rheumatologist appointment...would a GP put you on a prophylactic dose of prednisone? Hoping for the best for you...

[Purefaith in reply to Grammy80]

I'm not sure. I just don't know what to do anymore. I even have to wait for appointments to get in with my GP. I'm even so afraid of Prednisone after reading about it.

[SheffieldJane in reply to Purefaith]

Remember this is classed as an emergency and you should be treated as such by your GP - her or his referral to A&E will carry more weight. Having no blood signs is not unheard of. I know you feel ill but this is a fight you must engage in. Let us know what happens. If the tiz you have got into is not GCA, be thankful, it is something though.......and breathe!

[Grammy80 in reply to Purefaith]

The forum folks from the UK know your medical care system far better than I and it sounds like the 'squeeky wheel gets the grease'....you are worth the fight for sure! I used to worry about prednisone...but even though it is powerful stuff...I have come to look at it like my security blanket with GCA....so I would say be comfortable taking it for sure, at least until you have a firm diagnosis. Prayers...

[PMRpro Ambassador in reply to Purefaith]

Try reading about pred on this forum - I think most of us take away the fear of pred. It is a powerful drug but in PMR and GCA it gives you your life back and most of the side effects can be avoided or minimised when you know how - and we do. Just ask.

Where are you? If you are in the UK, you can get a same day emergency appointment, they MUST see you if you say it is an emergency.

[SheffieldJane]

Are you worried about particular side effects ?

I have been on Pred for 4 years and haven’t experienced anything that doesn’t have solutions. The relief of the worry and symptoms was just so huge. I was fairly euphoric.