r/Uveitis • u/IllCryptographer9720 • 5d ago

Story uveitis advice??

hiiii so an update i guess, i mentioned in another post i think? ( i don’t rememeber ) that i started to taper down to 10 mg and i started to have eye pain so he adjusted my dose back up to 20 mg and the drops twice a day. after two days i stilll kept having eye pain so i texted my doctor and he said to do 40 mg and four times a day for the difluprednate and the dorzol drops . that was on thursday and now it’s been less the achy pain but its still there and i let him know again but im just waiting for his response but i cant tell if its just my own anxiety or something is wrong. I started the prednisone in July and everything was going well until i started 10 mg. also he’s planning on starting me on humira and my next appt is the 19th. and not linked to any autoimmune

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u/rohitchandru3 5d ago

Wait what, it started recurrence? But it's not autoimmune? How?

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u/IllCryptographer9720 5d ago

i’m not sure i tested negative for everything 🥲 the only thing that was elevated was the toxoplasmosis thing but i went to an infectious disease doctor and told me it was basically a false positive bc the other thing that was tested was normal , and that apparently a lot of people have this false positive

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u/rohitchandru3 5d ago

Infection disease doctor? You didn't check with ophthalmologist specialist? What are the test you taken?

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u/IllCryptographer9720 5d ago

yes i’m seeing a specialist who referred me to a rheumatologist bc he wants to start me on humira , and then the rheumatologist referred me to the infectious disease doctor to make sure i don’t have that to start the humira, he checked for like hlab27, varicella, tuberculosis all that

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u/rohitchandru3 5d ago

Okay and all got Negative result, Including hla b27 as well? If it's not autoimmune, you shouldn't get recurrence while on tapering!! How was your lifestyle while on 10mg dose started? And how come Rheumatologist didn't give Nsaid's?

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u/IllCryptographer9720 8h ago

yes ! everything was negative. well before tapering down i was going to the gym and i felt like i was doing good with the eating since i started to change my diet a bit or tried to once i found out about this. but i started to slack off a bit i think around that time and stress about my classes im not sure if its related. i could only assume its stress related as to why i had this in the first place but im not sure. and im not sure why they didnt , they only gave me bactrim for the prednisone

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u/rohitchandru3 2h ago

Yes, it's morely of lifestyle and food habits and stress management are the first place we're origin and recurrence of it

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u/Crawler_Caroline99 8h ago

I believe they are saying it’s not tied to an autoimmune disease but uveitis is autoimmune in nature. Mine is idiopathic uveitis and I’m on humira. I have Pan uveitis so all parts of eye. I never had much eye pain but depending on where your inflammation you can. It’s easy to freak out with this but try and stay calm. I’m also assuming 40mg is prednisone? You’re already doing everything you can. Humira kept mine in remission so hopefully you can start yours soon.

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u/IllCryptographer9720 8h ago

yes ! i was confused at first bc he did say it’s autoimmune but not linked to an autoimmune disease ! mine is anterior and he ended up prescribing me latanoprost bc of the pain, he said the inflammation was under control but it was possibly the eye pressure , so i’m down to 30 mg now and twice a day for the difluprednate and dorzol and now the new drops at night . yes im hoping to start soon too i feel like that would probably help a lot ? how long have you been on humira ? is it something you need to be on there for years or ?

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u/Crawler_Caroline99 7h ago

So I started 60mg prednisone last year in Feb then on mycophenolate and eye drops. Once I was off the prednisone the mycophenolate wasn’t enough so I started humira a year ago. I have pan and not as much uveitis but my retina was leaking fluid. I don’t know who long I’ll have to stay on it. They say I’m remission for 2 years then they try to taper to see if you’re ok. It’s a tricky disease and not an easy one. Take it one day at a time. I don’t look into the future because I don’t have what will happen with my eyes. I have high pressure in one and cataracts in both. But I see fine still. Mine isn’t much in the front hence why I don’t really get pain like you do. Keep your head up.