Been looking forward to ophthalmologist appt in hope's of reducing prednisone, but neuro-ophthalmologist said field vision test worse than last time. Said they will repeat test again in 2 weeks b/c DR said some of the (can't remember word used) "problem" could be my difficulty doing test due to my weakness & shakiness. I think that might have been considered with one of the tests early on. So I stay on 60 mg until test unless rheumatologist calls tomorrow & says something different. Seems like a long time to be on such high dose. Can hardly walk lower back so weak. Not feeling down as I think I was a while back. Got a lot of broken body parts, beginning to see this as a challenge to see how many body parts we can fix. At least today, this minute that's how I see it. Thank you for listening. Appreciate everyone!
GCA eye followup : Been looking forward to... - PMRGCAuk
GCA eye followup
re: "Back to neuro ophthalmologist regularly but no injections to treat trochleitis which is continuing to give severe pain. He said injection into ocular area is contraindicated at this time. " from your post 2 months ago.
re" trochleitis aao.org/eyenet/article/savv...
"Neuro-Ophthalmology Viewpoint
Neuro-ophthalmology used to (and sometimes still does) have the reputation of “Diagnose and adios!” But steroids have helped to refute that perception, said Dr. Friedman.
Steroids are the mainstay of treatment for giant cell arteritis (GCA), inflammatory orbital pseudotumor, Tolosa-Hunt syndrome (THS), optic neuritis, trochleitis, and ophthalmoplegic migraine. The steroids convey fast and dramatic results for many patients who have these conditions. “It’s like magic,” said Dr. Friedman.
“Most of the time, steroids are administered orally or intravenously, so we’re talking about all the risks associated with systemic steroids,” said Dr. Friedman. Not only are the dosages relatively high, but most patients with GCA are elderly, which increases the risks even further. That said, the steroids are critical for preventing blindness.
When treating any of these conditions, Dr. Friedman recommends working with an internist to manage the complications that can arise. “The internist can help monitor the patient’s blood pressure, blood glucose, bone density, et cetera. Patients should be put on proton-pump inhibitors to protect their stomachs and on calcium and vitamin D supplements (and maybe bisphosphonates) to protect their bones.”
TREATMENT PARADIGM. Treatment for neuro-ophthalmic inflammatory conditions follows the “hit hard, hit fast, taper slowly” rule.
GCA. “Say a patient presents with vision loss in one eye, and you’re highly suspicious of GCA. Even before the diagnosis is confirmed, you should start the steroid treatment because it takes a few days to get the biopsy results,” said Dr. Friedman. “You don’t want the patient to go blind in the other eye while you’re waiting for the results.”
Dr. Friedman also mentioned that you can start with either intravenous methylprednisolone (usually 1 g, either all at once or in divided doses) or oral prednisone (usually about 80-100 mg per day, with the first dose taken immediately). She added, “Patients stay on a pretty high dose of prednisone until we taper, and everyone has their own personal recipe for tapering.”
Generally, Dr. Friedman keeps her patients on the starting dose of prednisone for at least a few weeks, then starts to taper over a few months (by 10-20 mg every few weeks) to get the maintenance dosage down to between 10 and 20 mg per day. In patients with an abnormal erythrocyte sedimentation rate (ESR), she’ll follow the sedimentation rate as she tapers to ensure that she isn’t moving too quickly. But not everyone has an abnormal ESR, in which case she carefully monitors clinical signs."
Dr didn't talk about trochleitis this time. I didn't think to bring it up. My daughter went with me this time. Kids have gotten more involved so that should help. Dr explained & showed her reports. I cant remember all this anymore. I do know that I had no pain anywhere at 80 mg & I do have some eye pain & off/on back of head pain at 60 mg. So much better cognitively at 60 mg than 80mg. But 80 mg to high of dose for me to function. I'm on many of the other meds,i.e. dexilant, bactrim ds, 50,000 vit d. But the I think a lot of damage was already done. I'm just trying to comply with DR & heal from serious attack. Never sure if I'm doing right thing but, for now I'll hope the DRs know what they're doing.
I am sure that spanky2019's specialists are considering all her options and are aware of all her medical choices.
What a worrying time you are going through. All made worse by the jitteriness of Pred. I bet. Keep strong - let us know. 🌺
Glad you seem to be getting all the necessary medical support. It’s good that you are being as positive and constructive as possible in the circumstances and getting help from family. It’s bound to help in many ways. Once you are gradually able to reduce your Pred dose a bit, it should help with the weakness. You’ve had a lot to deal with - sending you all good wishes x
Was it the visual field test that he meant? You have to press a button every time you see a pinpoint of light appear on a screen. That would pose probems if you were shaky - I have enough problems with it anyway!!!
Yes, that's the test. Think it's getting false positive result because of my shakiness and the "shakes" are worse there when under stress.
Yes , I have found this test very difficult on higher doses , it is so long , and they don't seem to realise that sitting up sometimes in an awkward , upright position for a long time , when you have already had an uncomfortable wait can cause the increases in your blood pressure and heart rate that add to your blurred vision.
Doing the test a number of times does help them to establish if you are having false negatives and get a more accurate idea of how much your field of vision is being affected .
The thought of having to do it more than once makes me shudder!!! And I'm relatively healthy and usually have IRO 100% scores ...
I have had two so far , was meant to have a third last month but the clinic has now sent out letters saying we are getting no more clinic tests or appointments unless they are for non treated severe conditions and injuries ( how do they know if they haven't finished the tests?!) Anyone who gets worse has to contact the Emergency Eye Clinic until further notice.
So we will have to just ponder if I have right eye tunnel vision or not ???
As it does happen periodically like the blurred vision and eye migraines I am also assuming like the Opthamologist that it's being caused by the POTS reducing oxygen intermittently to the nerves rather than other eye damage or a return of GCA activity ( it does feel different and changes with movement like the other POTS symptoms now ). So easy does it !!!!
All seems more complicated then it needs to be. Best to you Blearyeyed. If anyone can navigate thru maze you can.
My optician in Scotland always did one as routine.
Try not to worry about the field test. I work in an Eye clinic and it is the one test that everyone dreads. Most of the fear comes from the worry of ‘getting it wrong’. Make sure you explain your problems and fears to the operator before you start. If it’s on a Humphrey Field Analyser they should be able to select a shorter test - Sita Fast. Also you can stop that particular test by holding the button down on the buzzer which automatically pauses the test or alternatively ask the operator for a break. If it’s a large department they may have a Goldmann analyser which might be easier for you. Good luck with the next one and try not to worry. You can only do your best!
"Large department"???? Most of us in the UK get it done at the optician! One machine ...
It is major eye clinic, but rheumatologist arranged for me to do tests at this clinic only 60 miles from home rather than to Minneapolis which is 150 miles away. That helps. Neuro-ophthalmologist still involved too I think. USA health isn't always great but think once labs/tests show problems then it's possible to get qualified care. Don't know what kind machine they use.
Oh don't get me wrong - we get qualified care alright when needed. Just opticians/optometrists are also qualified and equipped to do many of the tests and then refer. Here in Italy I can only get the tests done at the hospital - and it takes much longer to get in than in the UK with the optometrist service.
It's not when you do have to go to Opthamology in the UK either .
Unfortunately,, in some areas, it can take upto 10 months to have the initial appointment with an Opthamologist and although you will probably get most of the tests on the same day , follow ups can take another four to six months even when you are being treated for something more complex or rare.
That's why the opticians/ optometrist are such a valuable service , plus , they are always good to see before Opthamology so you can prove that your vision issue isn't caused by needing a new prescription for glasses , as having that test done by an optician is usually more detailed and done in a calmer enviroment , and depending on the level of specialism at the clinic they can treat many issues as well
Exactly - I think I was 6 months the first time I wanted my pressures checked, opticians can't even do just that! Last time it was longer I think.
No small department and we don’t have a Goldmann. But a good operator should be able to relax their patient and obtain the best result possible.
Thanks , I have been told that they cannot pause the test when it has started , only a brief pause mid way through as they change which eye is being concentrated on.
Now I have your information when I go in again I am going ask which machine they use and ask for the chance to pause if I need to move because the extra dizziness is not helping them get the results they need .
Wasting time for them as well as me!
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