I've had PMR & GCA for 16 months. Currently on 15mg prednisone. Stopped Actemra 2 months ago.
My eyesight in my left eye has been changing rapidly over the past several months. It's gotten really blurry. I've never needed glasses for distance, but now it's hard to drive at night or see the TV very well. I wanted to wait until I was lower on prednisone to get a new prescription, but I need to be able see better.
I went to get an eye exam today and the optometrist told me that I have narrowing of my optical nerve, she believed from GCA, and that I need to see a retina specialist asap. I plan on calling on Monday, but the wait for a new doctor in California is usually about 4 months.
Does narrowing of the optic nerve lead to blindness? Is there any treatment for it?
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potterylady
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I was very interested in everything you said but curious about why you stopped Actemra.
I've had GCA for over four years; I've been on prednisone and Actemra all that time. I live in Indiana. My ophthalmologist referred me to a neuro-opthalmologist about two years ago. I, too had gone to a retina specialist who said he couldn't help me.
The field of vision in my right eye was not 100% and my opthalmologist could see some 'damage' to my optic nerve. The neuro-opthalmologist put me on Gabapentin. I'm not saying this is for you or everyone else, but in my case, my field of vision and the clarity in that eye improved tremendously. I can never remember if I have optic neuritis or neuralgia in that eye, no doubt caused by the GCA.
Have you talked to your rheumatologist about referring you to someone and getting you in sooner? Have you talked to him about increasing your steroids at all? Personally, I don't worry too much about the pred as long as I feel good....I was all the way down to 1mg and my Actemra in November when I had to go in the hospital and get pred IV, then 60, then 20 and today I took 10 mg. Time will tell...but please see if you can get in sooner. I hope you call your rheumatologist, too.
Vision changes should be seen by a professional so you can 'label' it. All the best and please let me know.💞
Thank you Grammy. I stopped Actemra because I was worried about being on 2 immune suppressing drugs instead of only 1. Also, I believe Actemra was causing horrific headaches because when I stopped it, those headaches stopped.
I'm seeing my Rheumatologist this week. But I'll message her today and ask for a referral asap!
I read about your recent problems last night. Man, you've been through so much. I hope you get a break from so many setbacks. Your kind and positive attitude has always brought me hope. Thank you. xo
There is always hope...but, thanks to HU, I learned I had to be proactive too. I hope you can talk to the nurse and see what they say about increasing Pred.
Sometimes...two drugs are better than one; at least they were for me. I was taking 125mg of pred at the beginning...I was so wired~! My biopsy by the vascular surgeon was described as "a severe raging case of GCA." It took me four years to get to one mg. with the Actemra. You are wise to call the rheumy and maybe you can discuss future med.
When I was a teen I had seizures....I took my meds, no seizures. So, I'm positive when I am not down flat and grateful for meds, sometimes the side-effects are worth it. Please let us know...💞
I went to get an eye exam today and the optometrist told me that I have narrowing of my optical nerve, she believed from GCA, and that I need to see a retina specialist asap. I plan on calling on Monday, but the wait for a new doctor in California is usually about 4 months
You need to see an Ophthamologist to clarify - or a rheumatologist - and a large dose of Pred if it GCA.. and asap means exactly that- not 4 months .
Answer to question… yes a narrowed optic nerve can lead to blindness…and if it’s GCA - then steroids…
Hi Dorset Lady, yes I have GCA. I was on high doses of prednisone in the beginning, 60mg, and have tapered to 15mg. Are you saying I need high dose again? This vision problem has been going on for a few months, maybe the whole time I've had GCA. I had chalked it up to the steroids making my vision fuzzy, not knowing there was damage.
Just because you couldn't get below 15mg with Actemra doesn't mean it wasn't working. There are at least 3 mechanisms that cause inflammation in GCA but Actemra only works for one of them because biologics are extremely specific in what they do. Then you need enough pred to manage the other inflammation. But the Actemra is doing a LOT. There are other IL-6 inhibitors now that they could try.
It is possible that there is another cause of the AION of course.
Hi PMR pro, I stopped the Actemra because it wasn't helping me to reduce my steroids down. After having a flare, I wasn't able to reduce from 35mg for months because of severe headaches. I believe Actemra was giving me horrible headaches because they have disappeared since I stopped taking it. I was also concerned about being on 2 immune suppressant drugs, not just 1.
If I take a large dose of prednisone, how long should I take that high dose? I think this has been an issue for months but I blamed the steroids making my vision fuzzy.
You need a doctor - asap. However it works in the USA. With all the faults of the NHS, the optometrist could have sent you to an eye emergency clinic. Is it easier to get an appointment with an opthalmologist (eye doctor)?
England has done far more research into GCA than the States and it is wonderful that these eye emergency clinics have been created. That is a blessing for all in the UK.
Here in the States, seeing a specialist requires a referral from your primary care physician. Most people I know do see an opthalmologist for routine eye exams, and he would have referred her. But like everywhere ....it has to begin with the individual advocating for themselves...all of you on HU taught me that and it changed the course of my treatment.
It seems we have an easier time getting into a specialist but you still have to be referred if you want your health insurance to pick up the bill. I feel like potterylady got the support and guidance she needed from the forum, thanks to you and all the others.💞
They are actually triaged by optometrists, two levels, minor and urgent, so if you have a eye problem there is someone on the high street in the nearest town who can examine your eyes with all the equipment an ophthalmologist will have. They can treat simple stuff and send serious things to the nearest hospital with an eye department. They replace the ED/ER I suppose because most don't have an eye specialist.
Wow, we don't have eye emergency clinics here. I found where I want to go and will call tomorrow morning when they open. It's a neuro optometry clinic in San Francisco at respected UCSF. If they can't get me in soon, I'll go to plan B, whatever that is, but it will involve getting help ASAP. Thank you for your help!
That sounds like an awesome move... Don't take no for an answer! Is it a clinic where you will need a referral from your primary care or rheumy? Possibly, when you talk to the rheumy's office...you can relate what you have learned and he can CALL the neuro optometry clinic. From my personal experience, neuro-ophthalmology is exactly what you need after what you were told. I remember the day my opthalmologist said to me...I'm only an opthalmologist...you need a neuro specialty.
My guy is also a professor and always has a few students come in and look👨🏼⚕️👨🏼⚕️ at my optic nerve. We are not common birds.💞
When I read what you wrote about needing a neuro-ophthalologist, I looked it up and found one. I'm so glad you mentioned that!! I didn't know there was such a thing. And yes you gotta advocate for yourself. I learned that years ago while dealing with my children's health.
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