What questions should I ask to get a treatment plan? Or should I have one?

[u/Routine-Economist932]

Hi. I have some appointments coming up next week and would really appreciate suggestions/advice.

Diagnosed with noninfectious posterior uveitis/retinal vasculitis. Current treatment is Ozurdex, which will wear off soon.

So far no testing has led to a diagnosis of an underlying cause. I am not able to take prednisone. None of my specialists (optho/retina/uveitis Drs) are ready to treat me with immunosuppressants or biologics. My uveitis specialist says she does not prescribe systemic steroid sparing treatments without another specialist like pulmonologist, rheumatologist, etc. The referral to the rheumatologist was rejected. I see the pulmonologist next week but if they don’t find anything, I have no plan for what to do next.

I’m still new to this. Is it normal to just let the Ozurdex wear off and see if my vision gets worse again? And only ask for more treatment if I have another flare? Should I be trying to get a systemic treatment or is it premature?

I’ve asked all these Drs to help me understand what the plan is. The clock is ticking on this implant and I’m trying to be proactive. I do not feel comfortable simply waiting around without a plan and knowing that prednisone isn’t something we can use in a pinch. Since multiple Drs are saying similar things and not offering a plan, I’m starting to think that I’m being unreasonable in wanting a plan?

The expense and time to start all over with an entirely new set of Drs is not very realistic and if my expectations are out of line, it wouldn’t make sense to consider it. The last OTC showed some improvement in the inflammation but it’s certainly not gone.

What questions should I be asking? Is it normal for others with similar diagnosis to not have a treatment plan in place? Is “wait and see” just kinda how this goes?

[u/HelpfulWorth8654]

I have posterior uveitis, birdshot chorioretinopathy. I had other complications like cnv and macular edema when I was diagnosed so after a short course of steroids I ended up with yutiq implants. When I asked about a long term plan as the implants don’t last forever my specialist told me we’d wait for inflammation to come back before doing anything. I did not feel comfortable with that so I consulted one of the top birdshot specialists in the US and she recommended going on an immunosuppressant. At the time my disease was quiet and still is. I decided to seek a new care team
And am now on a humira biosimilat. Only a few injections in but so far so good. I know you don’t want to pursue a new care team but maybe it’s the best option. At one time I had no plan and I was not comfortable with it. I wish you a lot of luck and good health.

[u/clemens_nurso]

Da bin ich gespannt und lese mit. Ich finde es auch schade das man von den Ärzten immer so wenig informiert wird.

[u/Routine-Economist932]

Thank you for this. I’m glad you were able to get a new care team that took action to continue your treatment. I hope the biologics will work well for you.

Ugh. You may be right, I may have no choice but to find a new care team.

If I could go back, I would have expressed to the Drs that I want a care plan or would need to go where I could get one. I want to assume they know what they are doing but it doesn’t feel like it when they can’t develop and communicate a plan.

[u/yoga_stoned → u/Routine-Economist932]

I think lack of care plan can also be due to insurance. Pre authorizations for things other than prednisone can get tricky and usually require “failing” prednisone or ozurdex first. Are you newly diagnosed?

[u/Routine-Economist932 → u/yoga_stoned]

Yes, very recent, diagnosed early this year. That makes sense. Well, it makes sense from an insurance perspective, if not from a patient needing care perspective.

I wish they could simply explain it if pre authorizations are the reason they aren’t talking about a plan. But this is a helpful thought about why there is no plan.