Hi, I haven’t been around much (mostly because my PsA was an uncontrolled disaster and I was dealing with that and all it entails and there wasn’t shit anyone could do about it, lol.) But something new has popped up and I’m hoping to lean on the knowledge of the community again.
Just curious if anyone else has experienced this. I’m currently undergoing possible dx of Optic Nerve Toxicity due to Methotrexate and have been referred to a neuro-opthamologist after 15mo of monitoring my visual field acuity and optic nerve imaging with my optometrist. Yesterday’s appointment showed that things seem to be getting worse so she referred me out and I have an appointment with the neuro-opthamologist next month (she’s also sending a letter to my Rheum and I’m wondering if I should just not take my mtx this week ).
I might be a little freaked bc I know that damage to your optic nerve is really bad and can’t really be repaired. I’m also worried about other possible causes (neurological issues like stroke or MS - especially since I’ve had some other weird symptoms like muscle spasms and my facial nerves freaked out after a migraine one day). I’m extra worried bc the neuro got me in much quicker than I expected (it’s usually 3mo) for an early morning appt, but maybe COVID is working in my favor there.
I’m finally on meds that seem to be working for my PsA and the mtx is supposed to help prevent antibodies to my biologic (Remicade). I don’t want to go back to where I was last year when I could barely function due to pain and swelling - I’m finally getting better and able to lightly exercise without excruciating pain… Ugh.
There is not a lot of research that connects the two and none that I have come across where it has happened with low dose MTX unless there is also folate deficiency. Not saying you don’t have what you have or what its caused by. BUT an immediate call to your Rheumie is order. When was the last time you had folate levels done? She also needs to rule out Occular Amyloidosis which is autoimmune caused and a far more common with PsA patients.
I’d not be waiting for letters I’d be on the phone daily or more till I spoke to my Rheumy The condition CAN be reversed if handled promptly delaying you MTX a few days until you get word isn’t likley to cause many if any problems. Here is a great Bibliography and brief article to readup on: Ocular side effects of anti-rheumatic medications: what a rheumatologist should know
I’d be surprised if I had a folate deficiency since I’m on 3mg/day, but I don’t think we’ve ever actually tested levels (I get a CBC panel ran every few months and have my inflammation markers checked). And so far it’s just thinning of the optic nerve (interestingly symmetrical according to my optometrist) with some loss of peripheral vision acuity (more so in my left eye). Last time I talked to my Rheum about it she seemed to think it was probably unrelated to my meds, so idk. I’m planning to hold my mtx until I see the neuro-opthamologist though (or until I hear back from my Rheum - I’ll def be sending her a message tomorrow).
Just a quick update in case anyone else reads this:
I stopped mtx the month leading up to my neuro ophthalmologist appointment and when I went in she said everything looked fine and I aced the field test. Apparently my optometrist’s office majorly dropped the ball and didn’t forward the tests she’d done with me to the neuro so they had nothing to compare with and sent me on my way. (Which was frustrating as I lost an entire days work from the appointment because they dilated my eyes and I couldn’t frelling see well enough to work without giving myself a migraine).
My Rheum and I discussed and decided I’d stay off the methotrexate for now and try out sulfasalazine.
I’ve been off mtx for almost two months now and I am noticing some interesting… Differences? I’m far less brain foggy (I have some of my vocabulary reach back, and just feel overall sharper in the thinking department) and I no longer sleep solidly like a dead thing through the night (though I oddly feel more rested?). And I just generally have a tad bit more energy. Some if that could be due to the Remicade working, but judging by the swelling in my feet and hands I’m thinking it’s at least in part due to not taking mtx any more. Not sure she’ll ever get me to touch the stuff again after this.
If it helps I simply couldn’t function on mxt, leaving aside that it had me resident in my bathroom. I totally loathed the fact my brain couldn’t work on it at all.
I haven’t been on here for years but thought my story might help. I was on mtx, sulfa, prednisone, naproxen, oxycodone, oxycontin and codeine for over 3 years. For me mtx was hell and subsequently found out that it was causing me permanent liver, kidney, eye & lung damage. I was able to quit all of those meds after managing my PsA with diet (after being diagnosed as coeliac & lactose intolerant). My diet is extremely strict but it beats the damage that cocktail of meds was doing to my body. I am almost symptom free but live with the damage done over those years.
I’ve contemplated diet changes before but I’m severely picky and have appetite issues even without the host of meds I’m on. I’m kind of afraid that any kind of restrictive dieting will just result in a return of my eating disorder (barring a diagnosis such as celiac of course, but I have zero signs of either that or lactose intolerance). I’m very much a “rather not eat at all than eat something I’m not in the mood for” type of person (which earned me the ability to make myself “safe foods” when I was a kid and dinner was a no go for me ).
You have to do whatever works for you, PsA not fun at all and I’ve done years of research on drugs prescribed by docs. Most just manage the disease and don’t actually put it into remission, we all have a trigger that turned it “on” & hopefully you can find the “off” button for your PsA. All the best
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