Blind and Visually Impaired Community
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I might be able to get my sight back but it’ll Cost my health (self.Blind)
submitted by finallystrong
I lost my central vision a couple of years ago. All this time, I’ve had doctors scratching their heads, with everything from psychosomatic to MS thrown out as diagnoses.
I’ve finally got a great doc, who thinks I might have steroid dependent atypical optic neuritis. The only way to know for sure is to try taking the meds. But, they have some pretty scary side effects and I can’t take them long term, so will switch to immunosuppressants aka chemo at some point, which is just as scary. If I start and stop, or even reduce the dose, my sight will deteriorate further.
It feels like utter madness to even give the meds a try. I’d made peace with my sight loss for the most part, and hearing that there might be a way to get some of it back, at this stage, has made me very, very angry. Why wasn’t I offered this years ago?
It might not even work given that it’s been so long and there’s probably permanent damage. And trying could result in losing the little vision I have left, either immediately or after a few years, once the immunosuppressants stop working. My sight has been stable for a year, so it really feels like a big risk.
Has anyone been in a similar position before?
I’ve finally got a great doc, who thinks I might have steroid dependent atypical optic neuritis. The only way to know for sure is to try taking the meds. But, they have some pretty scary side effects and I can’t take them long term, so will switch to immunosuppressants aka chemo at some point, which is just as scary. If I start and stop, or even reduce the dose, my sight will deteriorate further.
It feels like utter madness to even give the meds a try. I’d made peace with my sight loss for the most part, and hearing that there might be a way to get some of it back, at this stage, has made me very, very angry. Why wasn’t I offered this years ago?
It might not even work given that it’s been so long and there’s probably permanent damage. And trying could result in losing the little vision I have left, either immediately or after a few years, once the immunosuppressants stop working. My sight has been stable for a year, so it really feels like a big risk.
Has anyone been in a similar position before?
CosmicBunny97 13 points 1y ago
Unpopular opinion, but if I were you, I wouldn't use the medication. Keeping your health in tact and continuing to make peace with your sight loss sounds like the better option, especially if you're coping fine with your vision as it is.
finallystrong [OP] 2 points 1y ago
That’s what I’m leaning towards too. But, I’m having trouble justifying the decision to myself - I keep wondering what if. What if the side effects are mild, what if I don’t have complications - and the worst - what if I could drive again? I recently sold my car, and I almost don’t want my sight back because I’ve already done so much to move on. I’m so tired of all the upheaval. But, I don’t want to look back in a few years and wish I’d chosen differently. I suspect I’ll feel that way whatever I choose.
CosmicBunny97 2 points 1y ago
That's a really tough decision. I'd honestly say weigh up the pros and cons. I'm personally happy being blind (though I've been low vision all my life, so I've never been able to drive) and yeah, there's times I wish I could see again, but ultimately I'm pretty content. I just think do what's best for you and your quality of life.
vwlsmssng 5 points 1y ago
Lots of people take immunosuppressants to treat rheumatoid arthritis and other autoimmune diseases. Steroids act fast but have big side effects, $1 type drugs act slowly but can be tolerated long term, and if one doesn't suit you there are a lot of alternatives.
finallystrong [OP] 3 points 1y ago
Thanks, it was so helpful to read an overview of DMARDs. The bit that scares me the most is the increased risk of heart disease, infection, cancer - but to the point of needing checkups every 1-3 months. Plus, the risk is long term, even after stopping, and presentation of these complications are often atypical, so harder to find. $1 I’m really at a loss. Hopefully my doctor can give me some more guidance, but it feels like a pick your poison.
vwlsmssng 4 points 1y ago
All drugs (at least in the UK) come with leaflets describing what the drug is, what it is for, how to take it then a list of disconcerting and sometimes disturbing side effects. The catch is, the disease being treated will also have many side effects such as loss of quality of life or increased risk of death. There is no law that mandates the listing of disease effects and side effects so you can't trivially compare the pros and cons of taking or not taking the medicine or suffering the disease. You'll just have to write your own list.
AccomplishedArtist5 3 points 1y ago
What meds and what side effects?
It's a really tough call. My wife has RP and Autoimmune Retinopathy (the reason I'm on this sub). Nothing to be done for the RP, but the AR can be treated with some serious meds - methotrexate and IVIG. Side effects are awful, but it has arrested the progression of the disease and seems to have helped restore some retina cells. For her, it's worth it to save her little remaining eyesight.
Investigate the SE's and the downside if you stop. No easy answers.
Good luck to you.
It's a really tough call. My wife has RP and Autoimmune Retinopathy (the reason I'm on this sub). Nothing to be done for the RP, but the AR can be treated with some serious meds - methotrexate and IVIG. Side effects are awful, but it has arrested the progression of the disease and seems to have helped restore some retina cells. For her, it's worth it to save her little remaining eyesight.
Investigate the SE's and the downside if you stop. No easy answers.
Good luck to you.
finallystrong [OP] 1 points 1y ago
Thanks for sharing about your wife, it‘s so helpful to hear about actual experiences. Amazing that she’s had some retina cells restored, thats what I’d be hoping for too. Did it take a lot of trial and error to find the right treatment?
Interestingly, my doc thinks my condition is autoimmune related and [eyewiki](https://eyewiki.aao.org/Autoimmune-Related_Retinopathy_and_Optic_Neuropathy_(ARRON)) puts both retinopathy and neuropathy together. I’ve got Crohn’s, which is somehow I’m remission but still causing trouble.
No idea on specific meds yet, doc said 50mg oral steroids for a month, then immunosuppressants if successful. From reading, I’m guessing probably prednisone then methotrexate. I’m trying to get another appointment before starting treatment so I can ask all my questions.
Interestingly, my doc thinks my condition is autoimmune related and [eyewiki](https://eyewiki.aao.org/Autoimmune-Related_Retinopathy_and_Optic_Neuropathy_(ARRON)) puts both retinopathy and neuropathy together. I’ve got Crohn’s, which is somehow I’m remission but still causing trouble.
No idea on specific meds yet, doc said 50mg oral steroids for a month, then immunosuppressants if successful. From reading, I’m guessing probably prednisone then methotrexate. I’m trying to get another appointment before starting treatment so I can ask all my questions.
AccomplishedArtist5 3 points 1y ago
Yes, the treatment for AR are pretty experimental and it is really difficult to diagnose. Her doc is a specialist at the Casey Eye Institute in Portland OR and is pretty much THE guy for this. Started with methotrexate until the SE's just got to be too much. Stopped everything for a while then started monthly IVIG treatments which is the current therapy. Took a lot of work to get the infusion rate dialed in and other SE under control.
ParakeetYeeet 2 points 1y ago
I'm on cyclosporine for an ocular issue (immunosuppressant) it's not a big deal and it doesn't impact your health much at all. Take the pills.
My side effects on the worst day include: a mild headache, mild nausea, and mild drowsiness.
90% of the days (after the first 2 weeks) were side effect free
My side effects on the worst day include: a mild headache, mild nausea, and mild drowsiness.
90% of the days (after the first 2 weeks) were side effect free
TechnicalPragmatist 2 points 1y ago
Maybe save your health your health seems more important here.
Blindness isn’t that bad and not worth risking it.
What about get some blind pride on and get your hands dirty and live the blindie or blinky way?
Blindness isn’t that bad and not worth risking it.
What about get some blind pride on and get your hands dirty and live the blindie or blinky way?
RunsOnBoltCoffee 2 points 1y ago
Have you ruled out LHON via genetic test?
finallystrong [OP] 1 points 1y ago
Yes, and all other mitochondrial conditions. This is the last remaining option for a diagnosis that’s not idiopathic. On the plus side, my medical vocabulary has increased!
RunsOnBoltCoffee 2 points 1y ago
Yeah. There are other extremely rare mutations that they don’t test for on that panel, and I’m sure there are with any number of other mitochondrial diseases out there. I wish you luck if you decide to go through with it.
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