Please read my story. I am desperate.

[prudentfactor37]

So background I have had issues since December 2019 when I first developed CNV and I was given Avastin to help. I received an indifferential dx of PIC/POHS at this time. I received routine injections in my right eye once there was recurrence after the first injection until I became pregnant in spring 2020. I continued to be monitored and everything in my eye was quiet and fine until I was a little over a month postpartum. I began noticing issues in both eyes but was more concerned that it was in my left because I’d never experienced that. Saw an RS and they compared previous scans and notes and said there were definitely changes, so I got an oral prescription of prednisone and a referral to a uveitis specialist. Saw specialist and they DX’d me with PIC. Did all my labs, jabbed me with Avastin, kept me on oral prednisone, and started me on humira. Eventually tapered steroids and my problems were gone until end of March/beginning of April 2022. I started having issues again and I couldn’t get through to my specialist (hospital didn’t inform me she had left the state) so I found the specialist I had watch over my pregnancy (they had opened their own practice). Got in with her in an emergency visit the day after I called her. She did OCT’s, FA’s, and slit lamp exams, routine labs, etc. when I began seeing her it was confirmed I had CNV again although I had been receiving routine every 4 week eye injections since February of 2021. So I got another avastin injection, but I still noticed other issues even though they weren’t popping up on OCTs or during a slit lamp and there were no obvious signs of inflammation and then one day the problem area I had finally popped up. (Note there were times I was going to see this doctor 3 days in one week so heavily monitored). This brings us to June of 2022 and I’m Immediately started on 40mg of prednisone which really seemed to help a lot along with routine injections every 4 weeks. CNV occurred again in September 2022 but was so small I didn’t even notice it myself. By this time I was given an official diagnosis of Multifocal Choroiditis (no panuveitis). This whole time I continued to be on humira, prednisone (attempting a taper), and had added 25mg injections of methotrexate. Eventually tapered to 10mg in Oct 2022, and everything failed from there. I had inflammation start again in both eyes. I went back up to 40mg and from there my prednisone increased. My rheumatologist took me off humira, and kept me on MTX and prednisone until I could start Remicade/Inflectra in January of 2023. I received the highest dose for these infusion every 6 weeks. I failed remicade and at the time of failure my prednisone dose was 100mg. After 6 months and getting worse I was able to do a chemotherapy (Cytoxan/Cyclophosphamide) to be steroid sparing and help reduce or get rid of inflammation. After 6 months (all the time they would let me do) my prednisone was down to 15mg and I was started on 3,000mg of Mycophenolate Mofetil. I stopped chemo at the end of October 2023. I have been fine on my regimen of MMF and Prednisone for a year and then this November I developed CNV again in my right eye for the first time in 2 years. I am forced to believe that there is and has been inflammation that isn’t able to be detected on the scans as they were unchanged for months yet this week I decided to up my prednisone from 15mg to 17.5mg and I went for an emergency visit on 12/27 because I thought I was noticing change in my left eye but my lesions in my left eye have all shrunk down which indicates to me I’ve had some level of inflammation going on this whole time we just can’t detect it and I didn’t notice any visual changes either. I have put in a message to my rheumatologist because I want to know if I can add another immunosuppressant along with MMF to help with this. Although if I had it my way, I want to be able to be treated with Chlorambucil another chemotherapy which has been known to induce long term remissions in people with severe refractory cases of posterior uveitis. I have no idea where to get this treatment from, I don’t know what I’m supposed to do, this new CNV is effecting my central vision more than usual and according to scans and slit lamp exam I have no signs of new scar tissue or fibrous tissues to indicate scarring but it looks different to me and there’s a new gray speck/line right in my central view that I can’t see through it isn’t the same as where I can’t see there’s still distortion. I’ve never had a scar that isn’t round and this one is like a thick line similar to the shape of rice. I don’t know what to do. I can’t keep living like this. This disease has taken my 20s from me, stolen a lot of my joy in motherhood due to my fears and the uncertainty of it all, my body has underwent so much physical pain and trauma from these medications I’ve been on. I have fibromyalgia now, I have muscle wasting, the prednisone caused such severe swelling I have horrid stretch marks, I have high blood pressure, etc. What am I supposed to do? I know this is starting again because this is how everything presented in April 2022 with CNV first and it was downhill from there. I am unwell, as feel like I just want to disappear because I don’t want to keep living this way. How do I convince my doctors to do the treatment I want to do? How do I cope with further central vision loss?

[Meep944]

I cannot speak on anything except that you are describing as the "thick line similar to shape of rice" in the central vision. I had this a year of Avastin injections, and no scar tissue showed on exam or imaging. I was switched to Eylea and continued for 3 years. The lime, or in my case lines, continued to worsen. I switched specialists, and the new specialist noted two bands of scarring near the macula. I have been discontinued on injections because I am stable for now anyway, but tue new specialist says he would not recommend injections going forward unless absolutely necessary because of a phenomenon termed "Avastin crunch" where these bands of scar tissue shrink following an injection and create traction which can detach the retina. Not sure how this helps you, but maybe get another opinion, especially because you are in the USA, and there are some truly incompetent and dismissive doctors here.

[wanttosee in reply to Meep944]

Not sure I can help much...I was given Avastin for Wet Degenerative Macular Disease starting a year ago and my vision cleared up remarkably. I have had no issues with Avastin other than floating bubbles immediately after injection that would do away after a few hours but now the doctors switched me to a new medication as the main manufacturer of Avastin has stopped production. My new medication is called Cimerli 0.5. I did read up on Avastin and why they stopped production and apparently there were issues with quality control and unsterile products. Maybe Cimerli is something that would work for you.

[RosMacularSociety Partner]

Dear prudentfactor37,

Just to make you aware, the impact of the diagnosis of any eye condition, and indeed any stage in the process, is generally compared to experiencing a bereavement. I have copied a link to our booklet, Emotional impact of sight loss:

macularsociety.org/media/2r...

Our services are UK based, but the following organisations may be able to provide support services for you. It is worth reaching out to them:

AMD Alliance International: 877-263-7171

Macular Degeneration Foundation: 1-888-633-3937

Macular Degeneration Partnership: 888-430-9898

Macular Degeneration Association: 855-962-2852

The following two links regarding PIC may be useful:

macularsociety.org/macular-...

macularsociety.org/support/...

The following links may also be of assistance:

eyewiki.aao.org/Punctate_In...

uhb.nhs.uk/punctate-inner-c...

moorfields.nhs.uk/eye-condi...

rnib.org.uk/eye-health/eye-...

Olivia's Vision may be able to provide you with some useful information regarding Uveitis, including other sources of support and contacts:

oliviasvision.org/

Kind regards,

Macular Society helpline

macularsociety.org