~Darn it GCA possibility?

[Megams]

I just don't know what to think or say.

Had a mild r sided head pain (absolutely nothing out of ordinary for me) Friday evening. I took particular note that it headed in direction to back of r eye socket which had an infection in eye last week.

At same time noticed my sight in r eye had become some what hazy but could still see OK.

Thought eye infection may have returned so popped more antibiotic drops in for good measure just in case.

I chewed my Melatonin tab to help me sleep as I do and noticed half r side tongue went numb temporarily. Hmmm....

Have had hemiplegia migraines years ago, a handful at most, but knew this was not a hemiplegia migraine per se as it affects the whole side of body for a time. I was suspicious of the numb tongue however.

Next day (Saturday) vision returned OK, did notice some small area of reddish bruising under r eye which I thought was unusual - maybe I had knocked myself - I do and may have forgotten I thought?

Last night (Monday) noticed my r jaw was sore laying on it which was a new symptom.

I was planning to head to the Dr this week so today headed to a Locum (my Dr's day off) to make a start my breathing/heart issues which had only last week posted advice on, and would mention the eye/tongue/jaw symptom.

Heart not sorted, more urgency she says about having a biopsy to rule out GCA?

I am due to have a right temporal artery biopsy tomorrow.

I'm to increase my 30mg daily intake (hydrocortisone) to 60mg x 2= 120mg - I am shaking in my boots over this as I hope I can cope mentally as I have found at times depression has set in on my low dose and I can not up the antidepressant as tried once before and gives me horrendous head pain.

Thus far (its 8.20pm NZ) I have taken 60mg and wonder if I carry on trying to up more tomorrow gently as it takes 7 hours to reach the bowel to break down.

I have an urgent request with pharmaceutical company to make up new script in my acid resistant caps as soon as they can.

An anaesthetist will be present tomorrow as I usually can't have adrenaline due to my heart's inability to remain in regular beat/rhythm (my genetic heart defect) and surgeon needs to use adrenaline for the bleeding.

Not much more left to say really.

Hope you are all doing OK out there.

My kindest regards as always.

[olive2709]

Big hug take care over next few hours and best wishes for tomorrow Olive

[Megams in reply to olive2709]

Bless you Olive, just don't know what I would do without you lovely folk, I am quite teary right now but will take a big deep breath & solider on as we do.

Hugs

[Celtic PMRGCAuk volunteer]

Megams, try and relax until you have the biopsy tomorrow - easier said than done, I know, but the pain might simply be related to your eye infection or even neuralgia. Good luck for tomorrow and do come back and let us know how you get on.

[Megams in reply to Celtic]

Oh I wish it was something else and not have to go in for this procedure - got impression the Ophthalmologist was a little flippant about the symptoms, he didn't suggest other possibilities unfortunately - bedside manner nil but top of his tree which vital to me of course.

My Rheumy phoned by Locum yesterday - he advised this to be done.

I do know my inter-ocular pressures has risen from 15 to 26 since August when I sustained a detached vitreous in this eye.

Told rise in my IOP's related to steroid so keeping careful watch on this now with increasing dose.

Hugs and thanks u once more, appreciate you very much.

[Celtic PMRGCAuk volunteer in reply to Megams]

Yes, Megams, steroids can cause raised IOPs. I had slightly raised pressures before PMR/GCA and they did increase higher once on Pred. Unfortunately, they have failed to reduce down after coming off Pred in spite of using relevant eye drops. I do see an excellent ophthalmologist every 6 months who checks the back of the eye/optic nerve for any sign of damage from the IOPs - so far, so good.

Although I haven't personally had a temporal artery biopsy (my classic symptoms left absolutely no doubt about my GCA diagnosis), those who have experienced it often comment that it was a fast and painless procedure, so I'm sure you will be fine. Although only virtual, hugs to you too.

[Megams in reply to Celtic]

Thank you again for your support and advice - I guess when you think you have been heading on the right road and doing everything properly last 9 months, its come as a shock, but I view it as a set back due to such high intake of steroid and my already presenting heart issues.

Then again, I must balance it up against my sight and lesser stroke risk as explained by Locum in the belief that GCA is the issue as she believes it is.

Hugs once more.

[PMRpro Ambassador]

Ah - not so good news that, Fingers crossed they may find another reason - but even a negative biopsy doesn't mean it isn't GCA, it just means there are no giant cells in that bit.

Good luck xxxxxxxxxxxxxxx and hugs!

[Megams in reply to PMRpro]

Hi PMRpro

Yes......... could another reason crop up do you think?

It's on the right side where I had a pleomorphic adenoma (not sure if spelt first word correctly), my main salivary gland completely removed 2003 as tumour of longstanding growing in gland, (mistaken for a cyst @ least 8 years).

Not that this area is right beside scalp/ back of eye but who knows what connects what to where..

I was so grateful that it was benign nonetheless.

And yes it does concern me that a negative biopsy doesn't mean it isn't GCA. Where else do these giant cells travel??

If I'm to have one month of 120mg daily hydrocortisone does that mean at the end of that one month when I begin to taper I will not likely have this happen again (GCA) that is?

I gather this high dose is to burn the GCA out?

Had urgent bloods done late yesterday with absolutely nothing to show other than CRP 1 mg/L & ESR down from 16 to 10.

Seeing Rheumy tomorrow so where to from here who knows?

Kindest regards as always to you and thank u again - I appreciate you.

[PMRpro Ambassador in reply to Megams]

I don't know whether it does "burn the GCA out" - the perceived wisdom is that it manages the symptoms until an underlying autoimmune cause burns out - now whether the pred assists in that I have no idea. The high dose is to reduce the inflammation rapidly to avoid the risk of loss of vision - GCA that is present elsewhere and not giving visual symptoms will usually be treated with a lower starting dose.

GCA can affect any artery with an elastic layer in its wall - which includes the aorta and several arteries in the thorax (chest cavity). TAB is done because it happens to be the right sort of artery, is easy to get at and you can manage without it.

A study in the UK a couple of years ago showed that there is still evidence of inflammation even after 6 months of high dose pred (above 20mg). If it is still there then the symptoms can return as you reduce the dose and flares are relatively common in the first 18 months after diagnosis. Since it is accepted that the primary cause of flares is reducing too far or too fast - presumably those flares are because the dose simply isn't enough to manage the remaining inflammation.

MRA or CT with PET is another way to show up where inflammation is - and would be the way to show where else in the body there is inflammation. It's relatively new, not widely available and pricey - so no idea how the NZ health system measures up.

[Megams in reply to PMRpro]

Thank you Pmr pro - wanted to respond this morning but crawled back to my bed.

Most interesting what you have written here for me to digest.

Didn't get to Rheumy this morning - had TAB last night so telephone consultation in place of and will see him late next week.

An interesting comment Ophthalmologist made when procedure over, writing up notes saying he was fairly certain that this was not a GCA issue. He is a man of few words so was surprised to hear him say this.

It was the Locum who initiated the proceedings initially and I feel she did the right thing as does my Rheumy.

Without writing more here will leave this until I discuss more next week with Rheumy and read Ophthalmologist's report plus histology of artery.

Advised not to go any higher with steroids (60mg) at moment by Rheumy and have put hold on the higher dose being made up as most expensive.

I am happy about this and can say that at least I still see my glass as half full.

I do wonder how this area of the temple now copes without an artery when I have had a complete parotidectomy in this area 2003?

When stronger will push on with heart issues via my GP as Christmas is looming and I dread holiday season with unresolved health issues!

Hugs and kindest regards until next week.

[PMRpro Ambassador in reply to Megams]

Something called collateral circulation presumably. Other arteries take over the job when required to. There are several not just a couple and small ones grow into the job.

Just because the ophthalmologist doesn't see signs of AION in your eye exam doesn't mean you don't have GCA affecting elsewhere and the eye problem may be coincidental.

[Megams in reply to PMRpro]

Ah ha thank you for this PMR pro - you do help me to understand and I will Google AION as not familiar with word.

Whilst I think of it, I recall at the consult with this gentleman (Ophthalmologist) Tuesday, (never met him before) a comment he made that" I "seemed to know about medical information - where he got this from I don't know but he also made a comment that people go onto the web and read all sorts of things.

I could have said plenty but that was not the time for me to make comments in my vulnerable state.

I was paying for his professional advice not any whispers he may have had heard to the contrary.

Kindest thoughts once more.

[PMRpro Ambassador in reply to Megams]

There is this assumption that we only find the crackers stuff! That's why we spend such a lot of time disseminating correct info for the people who are looking.

Ooops - sorry! Knew I meant to add something.

AION = Anterior Ischaemic Optic Neuropathy. Ischaemic is due to lack of oxgen and optic neuropathy is damage to the optic nerve.

[Megams in reply to PMRpro]

Thank you for this once more and your comment re the assumption the we only find the crackers stuff is so close to the mark!

Whilst I always wanted to be a Nurse and qualified in a total different field, it has never stopped me being fascinated as to why and how everything works within our wonderfully made bodies and how the body is constantly trying to renew and regenerate thus heal given the right conditions - my mere brief theory which we could expand hugely upon.

Kind regards as always

[magmapearl3]

Just adding my virtual hugs and best wishes to you Megams. I hope all is well with you.

[Megams in reply to magmapearl3]

Thank u so much magnapearl3, very sweet of you and appreciate such kind words - I wept as my side of hair was shaved off, just the noise of what sounded like sheering clippers loudly ringing in my right ear - reality just hit me along with anxiety of not tolerating adrenaline which they did not use in the end, I am most grateful to say.

Bless u.

[Ida-June128]

Good luck, will be praying for you.

[Megams]

Bless you Ida-June128, so appreciate lovely words as this.

Have come through OK, no news as yet with results but truly grateful for modern medicine.

My kindest thoughts are sent your way too.

[Joyful13 in reply to Megams]

Megams,

I had a bilateral temporal biopsy years ago for possible GCA. It is a quick procedure, and not very painful. Both biopsies came back negative at the time.

However, I have recently been diagnosed with GCA because of lab tests, symptoms, and eye exam.

I will be praying for you.

[Megams in reply to Joyful13]

Lovely to hear from you Joyful13 and so sorry to hear you have been recently diagnosed with GCA after your initial bilateral temporal biopsy years ago - what did the eye exam involve to be able to pinpoint this? I would be most interested to know this.

Bless you for your kind words, I too will keep u in my prayers.

Kindest regards accompany this message to u.

[Joyful13 in reply to Megams]

Megams,

The eye exam involved several scans of the optic nerve and retina. Those scans were mostly normal.

The main changes were the vision loss in my left eye which had just been checked in April. The doctor also gave me a test to check for color blindness. I failed that exam which was a real surprise, as I had no idea that I was having difficulty in that area. He told me that the color blindness test is another verification of GCA combined with all the other tests and symptoms. Color blindness in women is quite unusual.

I was on Prednisone 40 mg when I experienced these vision changes, so they had me increase to 60mg daily

The opthamologist spent a lot of time with me that day which I so appreciated.

It's still a journey as that amount of Prednisone increases my intraocular pressures as I also have glaucoma. So, they've had to add another eye drop med. to reduce the pressures which is successful.

I wish you the best today. We are all here for you.

[Megams in reply to Joyful13]

Hello Joyful13

Thank you for your in depth explanation in helping me understand the many facets of GCA.

I was so sorry to hear of the vision loss in your left eye.

Most interesting to note that you were already on what I would have thought to be a reasonable dose of Pred and still end up with a GCA diagnosis.

The Ophthalmologist sounded a very thorough person.

A comfort for the want of a "better word" to know that he/she has you under their wing with the constant challenges that steroids bring, especially raised IOP's + glaucoma.

Thank you again for your kind words - I'm brighter today.

Abundant blessings once more.