New to Autoimmune Diseases, concerned blurry vision

PMR is Polymyalgia Rheumatica, right? Just making sure.

I am moving bone density test to the top of my to-do list. Thank you for your feedback.

Yes.

I’m sorry to hear you have vision issues also. I can understand and appreciate how a neuro-optometrist was a life and sanity saver for you. A neuro-ophthalmologist had been suggested to me so now I’m curious how different or similar their approaches are, I’ll have to research it. What made you decide on a neuro-optometrist? Thank you for your feedback.

Correction: Some breakthrough headaches and bloodshot eyes, mostly in morning, mostly LEFT eye, not right eye as I originally posted.

I also wonder if connection between ice pick headaches over my left eye in the past and my current blurry eyes being worse on my left eye. I’m beginning to wonder about a few other symptoms from the past that would come and go like years ago I had jaw pain, thought it was TMJ, saw a specialist at the time, I think an ENT, at the time was told to give jaw a rest by limiting extra chewy food for a bit and it improved. Never thought of it again until rheumatologist asked about jaw pain. Same goes for neck pain, have herniated discs in neck and have suffered on and off over the years with neck pain, stiffness, and headaches from it, usually triggered by lifting and carrying a lot, which I do at work when have events. Haven’t had neck pain for a while, but again never thought of it until rheumatologist asked about neck pain.

Not sure if I’m overthinking these things.

The prednisone has not changed the blurry vision. I had it right before I started to see the rheumatologist and started the prednisone and it continued through all levels of prednisone (60mg to 40mg to current 20 mg). I was on the 60mg of prednisone for about 10 days when I had the biopsy so there could be a chance the prednisone reduced the inflammation and affected the biopsy results.

Yes, sed rate and CRP were positive/high. Not sure about ANA, I have to check.

Sorry to hear you aren’t making progress, I hope you do. Thank you again for your feedback.

I first saw my optometrist then a respected neuro-ophthalmologist who both basically dismissed my symptoms as my eyes checked out fine physically. My continued research led me to getting evaluated by a NORA Neuro-Optometrist, who are eye care providers with specialized training in the evaluation, diagnosis, and management of neurologic and neuro-ophthalmic conditions. I had multiple issues with how my eyes were working together which caused blurriness, headaches, light sensitivity and other symptoms that I wasn’t even aware of until after diagnosis and treatment. Make sure where you go has trained staff to provide vision therapy. I experienced improvement almost immediately once I began vision therapy. The NORA website is a great resource for researching your symptoms.

Sorry to hear about your vision issues. It’s good you went to ophthalmologist.

I stopped driving day and night. The bright sun hurts my eyes and I need really dark sunglasses if I’m outside or a passenger.

Thank you for your feedback and reassurance I’m seeing right people and asking the right questions.

I’ll check out the NORA website. Thank you.

Hi,

Sorry about your blurry vision. I hope you are OK.

I am female 44 years old with autoimmune disease diagnosis scleroderma with very similar intermittent severe blurry vision problems (predominantly left eye), similar severe eye pain problems, including severe headaches/migraines, and intermittent color vision saturation loss, as well as morning uveitis (“red and veiny eyes”), intermittent photosensitivity (days to weeks of pain and severely hating office lights, and sunlight is too bright, etc.)

For me, it was elevated blood ammonia (hyperammonemia) contributing to my blurry vision issues and many other neurological issues.

What has helped me with reducing blurry vision and other neurological issues:

1. L-ornithine L-aspartate (LOLA): 6g-12g/day divided doses - to reduce ammonia

2. Eating 0.25 ounces of liver pate about every other day or so for “meat based” Vitamin A (retinol). Vegetable based Beta carotene or supplements didn’t work for me. I make the chicken liver pate at home from the $3 tubs of chicken livers at Whole Foods. Don’t eat too much liver, just a bit, otherwise Vitamin A (retinol) toxicity. Know that 0.25 ounces is just a small bite of liver pate.

3. Eating less protein overall, moderate protein diet - to reduce ammonia.

4. TUDCA tauroursodeoxycholic acid: 250mg-750mg/day - to help bile and fat soluble vitamins (A, E, D, K) digestion and eyes. You can read about TUDCA how it also helps with photosensitivity. It has taurine in it which also helps the eyes. It’s basically bile to help you digest to get nutrients to your eyes. I have autoimmune scleroderma so I have malabsorption issues of the stomach.

5. Probiotics (Lactobacillus GG, S. Boulardii, Bifidobacterium) - to reduce ammonia

6. Asking my doctor for alternate prescription drugs or dose reduction - to avoid drug-induced hyperammonemia. See WHO list of drug-induced hyperammonemia.

7. Re-assessing my use of over the counter pain killers that can also cause drug-induced hyperammonemia. See WHO a list of drug/induced ammonia.

8. Sometimes: Very low dose doctor prescribed Lactulose (2.5 to 5mL/day, approximately, which is the pediatric dose) - to reduce ammonia if neurological/vision symptoms severely worsens.

9. Blue-Blocker Sunglasses: I bought the orange tinted blue blocker overlay glasses for really bad days so I can at least drive and go to the grocery store and withstand the lights. I don’t need them as much anymore if I focus on reducing my blood ammonia and ensuring Vitamin A (retinol) to my eyes, by using the methods mentioned above.

All the above is for people with liver disease or overworked livers, who need to reduce their blood ammonia levels. I don’t have any of the biomarkers for liver disease and according to all the tests my liver is considered fine/normal…. but my mom had autoimmune primary biliary cirrhosis/cholangitis (PBC), so I could be on my way to eventually getting PBC. For now, besides autoimmune scleroderma, I have a diagnosis of what is known as “covert encephalopathy”, where blurry vision is one of my neurological symptoms. In addition to genetic issues, likely, some of my various medications over the years probably contributing to my ammonia inching up over time. See WHO list of drug-induced hyperammonemia. All these compounding factors can “add up” to elevated ammonia over time or at least intermittently.

Note that testing the blood levels of ammonia often don’t correlate directly to the severity of the encephalopathy in “covert encephalopathy” so my doctor and I have to go by my symptoms. Moreover, as an outpatient, it takes the lab 7 days to get ammonia results anyway.

It took me years to figure out my increasingly worsening “blurry vision” was associated with ammonia. Some of my eye damage is probably permanent, although I hope for improvement. For me, none of the MRI’s, CT’s or any of the opthamology or neurology tests ever revealed anything. Rarely, if ever, is a blood ammonia test ever done unless you have obvious “overt encephalopathy.”

Neurological symptoms of “covert encephalopathy” can easily be brushed off as fatigue/pain, emotions/stress, aging/being-tired, just a headache/migraine, just neck pain, etc. So, my blurry vision was brushed off as everything it wasn’t: allergies, dry eyes, too much cell phone use, stress, sleep, aging, etc.

Focusing on my liver health and methods of reducing ammonia helped reduce my blurry vision and my vision loss. My migraines, fatigue, pain, cognitive issues, emotional balance, etc. also improved. Again, I just say “reduce”, not “eliminate.” There is definitely more going on than just ammonia, but reducing my ammonia helped systemically with everything, my blurry vision included. I have to be satisfied with any improvements, even if not perfect resolution.

It is very frightening to experience blurry vision and potential vision loss, and light sensitivity can be very ‘emotionally frightening,’ to put it mildly.

I hope your vision is going to be OK. I surely don’t know, for sure, if it’s an ammonia issue for you, and I hope you have a receptive doctor who might consider “covert encephalopathy” as a possibility and who can advise you on what to do to help you. Maybe if you also have it, you can catch/reduce your elevated ammonia before it goes on unknown as “covert encephalopathy” for too many years like me. Good luck!

References
1. Drug-associated hyperammonaemia: a Bayesian analysis of the WHO Pharmacovigilance Database, 2022, Alexander Balcerac.

NOTE: I have mutated genes for porphyria (FECH) and retinitis pigmentosa (TRNT1 mitochondrial disease) so it is uncertain if my blurry vision problems are entirely ammonia-related or if those vision/light related mutated genes are factors. The belief is that my porphyria genes and mitochondrial disease genes could just be making my eyes more susceptible to the effects of the elevated ammonia. than what most other people without the genetic susceptibility and compounded by my autoimmune scleroderma disease would experience. I don’t know if you have ever had genetic testing. Either way - Regardless of whatever the genes say, all of the above ammonia reducing methods, and TUDCA, and meat-based Vitamin A (retinol) helped me improve my blurry vision and light sensitivity and headaches/migraines, neck pain, etc. Your eye issue seems very eerily similar to mine, which is why I’m writing such a detailed post. Best of luck with your doctors help!