Autoimmune Retinopathy

@colleenyoung, thank you for reposting the direct links to the papers! Yes, at the moment the plan is to follow a parallel therapy with 3-grams of oral valacyclovir daily for 1-week and then 1-gram daily for an additional 3-weeks. I'm aware that is a long shot since the literature is rather anecdotic, but if my hypothesis is correct the potential benefits greatly outweight the risks. I had the chance to encounter a team of doctors that was ready to listen to my points and, after their medical evaluation, agreed to perform an attempt. This is very important for me because, in any direction this will go, at least I know that no stone was left unturned...

I'll be interested to hear the results of your treatment, and if this is right for you, when you noticed any changes (hopefully improvements). I appreciate your sharing it here.

@colleenyoung, I'll definitely let you know!

@colleenyoung Just to let you know... After almost two weeks of valacyclovir treatment I see no noticeable improvement or stabilisation!
In the literature responsive patients noticed rather quick benefits, so I guess it doesn't work for me. 🙁
In any case this is an approach that I would not exclude beforehand as the potential benefits outweigh the risks.
I'm extremely grateful to my physicians for letting my try this therapy: I knew it was a remote chance, but at least I won't live with the "what if" doubt for the rest of my life.

Darn, @drrex. I know you knew this was a remote hope. None-the-less, it was a hope that is now a disappointment. That's always hard to accept. What's next for you?

I'm now undergoing a cycle of plasmapheresis which will be followed by Rituximab. The feeling is however that the symptoms are escalating with the therapies. I wonder if they are missing something?!

I am searching for a diagnosis. I've been on immunosuppressive drugs for years. My PCP says I need them. My rheumatologist says I need them. I recently sought an opinion from UAMS and the "head" of the rheumatology department there says I should stop taking them, which I find a little odd since they never even took a blood sample. But this has been my case for years, doctors disagree and give conflicting direction. I initially had extremely red eyes. The whites of my eyes turned blood red, so much so that I would frighten small children when I looked at them. I was prescribed immunosuppressive drugs and everything seemed to go well for over ten years. Last year, while on hydroxychloroquine, my ophthalmologist noticed some changes to my eyes and recommended I discontinue hydroxychloroquine. Due to Covid, I was several months without any immunosuppressive drugs. During that time, my eyes again became inflamed and I noticed a dramatic reduction in my sight. There is some visible "scarring" on my left cornea. Subsequent testing confirmed additional damage to my eyes. That's when I sought consultation at UAMS and, thinking this was an autoimmune issue, visited the rheumatology department, after months waiting for my appointment. I discussed the UAMS recommendation to discontinue immunosuppressive drugs with my PCP and rheumatologist who advised against it. So I'm still taking drugs hoping it will at least slow the progression of my loss of sight.

Trying to self-diagnose, I found Autoimmune Retinopathy which sounds like an avenue to investigate. But my question is this: Where can I get an expert evaluation hopefully leading to a reliable diagnosis? My PCP mentioned the Mayo Clinic in passing, but no follow up ever occurred. So can I contact the Mayo Clinic directly? And with whom should I speak?

Any advice would be greatly appreciated.

Hi @alfleagle, my apologies for not getting back to you sooner. I concur that now would be a good time to consult Mayo Clinic. You can self refer by contacting the Appointments Department. See the contact information here: http://mayocl.in/1mtmR63

You can also ask your doctor to submit a referral.

It must be so confusing to get multiple opinions. Often getting a second opinion at a large medical facility like Mayo Clinic can bring everything together. A recent study conducted at Mayo Clinic found that 88 percent patients who visited Mayo Clinic for a second opinion were found to have their initial diagnosis changed or modified as a result of a second opinion. See more here:
- Three Reasons Why Getting a Second Opinion Is Worth It https://connect.mayoclinic.org/blog/transplant/newsfeed-post/three-reasons-why-getting-a-second-opinion-is-worth-it/