With no improvement in her condition, and another week before she sees any specialists, the road is still pretty shakey. She has one day in 3 without pain, and typically now 3-4 episodes of blindness in her left eye daily. We have found that either the blindness or combination of extreme pain happen shortly after food, but sometimes just randomly. A few thoughts have come to mind,
is it possible, the that chewing itself puts additional pressure on the temporal artery as the jaw moves? We have moved to basically liquid food now to try this out.
Is it possible blood pressure if high will also cause the pain / blindness?
Would aspirin be of any use in combination with her prednisone? She was taking this a while back, but stopped due to complications in her tummy, the doctors thought the aspirin was causing internal bleeding (I am sure this was all linked to the long term use of prednisone) Would it be worth using the aspirin again in the short term?
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DianaAdshead
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Again with stomach protection, what are you hoping to achieve? I cannot bring your mother’s story to mind properly. What does the Opthalmologist say about the episodes of sight loss ?
I don’t think raised BP is a factor.
What is her Pred dose? Shouldn’t she be on a higher dose with the intermittent sight loss?
If it was my mum. I would want her in hospital to be honest. This is too much responsibility for a non medic. I wish you both well.
The opthalmologist said there was no damage to the optic nerve, but needs immediate attention, sadly we cannot get a specialist to her other than, this weekend, which is thank God getting closer.
She is on 80 mg a day, but has more and more episodes every day
Unfortunately the hospitals here are terrible, Mum will not go, theres not enough time ot explain what she has already been through...... so we wait for the specialists,
Thank you, we are trying our best, and all your advice helps
I've been dealing with GCA since 2019. What concerns me, Diana is that she is not IN the specialist office now....can you take her to an emergency room where she will get immediate treatment? Intermittent sight loss coupled with jaw pain and inability to chew...are such giant red flags. I fear that one of those times when she has sight loss....that will be it. She truly needs to have these issues addressed yesterday!!!!
I would not add asprin as that might affect her kidneys; she should be on the appropriate amount of pred to stop this now if possible. It took me four years to reduce pred along with Actemra (TCZ) and boom....I'm taking 60 mg a day again.
When I was first diagnosed there were delays in treatment and mistakes...they are critical. I do not chose to scare you but she need someone, a professional, NOW. My best 💞
I’m so sorry to hear that your mother is still having these symptoms: must be extremely worrying for you and so distressing for her. I honestly believe that an ultrasound scan (as soon as possible) will be conclusive, ie GCA or not. Such a scan will inevitably be costly in Spain but if I were you I would be searching the internet for hospitals in your current general area that perform this in their emergency department.
Here’s a suggestion but may to too far away from you: (You will lose nothing by enquiring.)
Can’t say I recall an increase in headaches and certainly no sight issues with/after eating - just the excruciating jaw pain. But by all means try softer or liquid foods that don’t involve chewing.
High blood pressure can certainly cause headaches, and prolonged untreated high blood pressure can cause hypertensive retinopathy but patients do not have symptoms until late in the disease. Symptoms may include: Double vision, dim vision, or vision loss.
Does your mother have untreated high blood pressure? If you aren’t sure you can buy a blood pressure monitor from most pharmacies.
Once upon a time aspirin was prescribed alongside Pred for GCA, but the practice was discontinued a few years ago because of the risks to stomach with both medications together- so it wouldn’t be wise to add that in without discussing with doctor [even though you did mention your mum was on omeprazole].
Can you not contact one of the specialists and ask advice? The repeated amaurosis fugax is concerning and suggests EITHER the pred dose isn't high enough to really deal with the inflammation of GCA OR there is something else going on as well.
Has she had a carotid scan? It could be repeated TIAs - mini-strokes which are a precursor of stroke so taking her to an ED should elicit a few scans even if they don't "get" the concept of GCA.
Diana, I just reread my post and I didn't mean to sound so aggressive~!!! What happened to me back in 2019 was that one afternoon I would be looking at something and then poof...it would get dark and then light again. I thought, well, I'll do the dishes and go to bed. As I was doing the dishes I experienced sight loss a few times and went to bed. When I woke in the morning I had lost the sight in my left eye.
So when I read your mother's symptoms I reacted the way I WISH I had that night...but I had never heard of GCA or Temporal Arteritis. Naturally---I wish your Mom the best.💞
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