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ccunning
@ccunning

Posts: 5
Joined: Jan 31, 2018

VKH (Vogt koyanagi Harada) :

Posted by @ccunning, Sun, Mar 4 10:44am

One of the troubling aspects of treatment is the vulnerability to other infections. I began a course of prenisolone; that was replaced by methotrexate. I had to stop the latter (with the specialist's agreement) when an extended bout of the flu lasting two months ended in severe bronchitis. Now I have resumed the methotrexate, as my vision gets blurrier. I also have cataracts in both eyes, so blurriness may come from them as well as VKH. One day at a time.
Would appreciate hearing from others fighting this disease.

REPLY

Hello @ccunning — welcome to Mayo Connect. I did a search of the discussions on Connect and could not find one with a post on Vogt-Koyanagi-Harada (VHK). I'm hoping your new discussion will be viewed by someone with similar health problems and they will join in the discussion. I did find some information by doing some searching that may be helpful if you have not already seen it:

NIH – Vogt-Koyanagi-Harada disease:
https://rarediseases.info.nih.gov/diseases/7862/vogt-koyanagi-harada-disease

Medscape.com – Vogt-Koyanagi-Harada Disease Treatment & Management:
https://reference.medscape.com/article/1229432-treatment

I used Google Scholar (https://scholar.google.com/) to find this research type article.
Novel treatment regimen of Vogt–Koyanagi–Harada disease with a reduced dose of corticosteroids combined with immunosuppressive agents:
https://www.tandfonline.com/doi/abs/10.1080/02713683.2017.1383444

Here are the rest of the search result links for the phrase "treatment of vogt koyanagi harada disease" – lots to choose from:
https://scholar.google.com/scholar?as_ylo=2018&q=treatment+of+vogt+koyanagi+harada+disease&hl=en&as_sdt=0,24

I like "One day at a time…". It's one of my favorites and a good outlook for those of us with rare or difficult health problems to manage.

Hoping you find some answers soon.

John

@ccunning
Hello,
I too have VKH. I understand what you mean about frequent infections with methotrexate.. It can seem like an endless cycle of infections.. even if the VKH and uveitis is 'quiet', other illnesses pop up and seem to drag on for an age! From what I've heard this seems typical with this medication. Although with VKH being so rare, I find that the majority of people I've chatted to are taking MTX to deal with other autoimmune conditions such as Rheumatism. I'm sorry to hear about your cataracts, I hope they can be treated. Please feel free to private message me if you would like to chat.
All the best

@johnbishop

Hello @ccunning — welcome to Mayo Connect. I did a search of the discussions on Connect and could not find one with a post on Vogt-Koyanagi-Harada (VHK). I'm hoping your new discussion will be viewed by someone with similar health problems and they will join in the discussion. I did find some information by doing some searching that may be helpful if you have not already seen it:

NIH – Vogt-Koyanagi-Harada disease:
https://rarediseases.info.nih.gov/diseases/7862/vogt-koyanagi-harada-disease

Medscape.com – Vogt-Koyanagi-Harada Disease Treatment & Management:
https://reference.medscape.com/article/1229432-treatment

I used Google Scholar (https://scholar.google.com/) to find this research type article.
Novel treatment regimen of Vogt–Koyanagi–Harada disease with a reduced dose of corticosteroids combined with immunosuppressive agents:
https://www.tandfonline.com/doi/abs/10.1080/02713683.2017.1383444

Here are the rest of the search result links for the phrase "treatment of vogt koyanagi harada disease" – lots to choose from:
https://scholar.google.com/scholar?as_ylo=2018&q=treatment+of+vogt+koyanagi+harada+disease&hl=en&as_sdt=0,24

I like "One day at a time…". It's one of my favorites and a good outlook for those of us with rare or difficult health problems to manage.

Hoping you find some answers soon.

John

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Thanks so much for the links, John. I'd already checked a few of them (e.g., NIH) , but will now follow up on the others you've posted.

Hi, Bluebell! It's certainly a rare disease! The cataracts aren't ripe yet (love that ironic term), but I'm feeling the VKH effects on my reading. Very frightening and annoying as well. (I'm a retired English lit prof, so trouble reading is something I'm impatient with.) I'm on my way out of town for a bit, but would very much like to PM you when I return. Thanks! c.

Welcome to Connect @ccunning and @bluebell1,

Since one of the first symptoms of Vogt-Koyanagi-Harada (VKH) disease is uveitis, I'd like to invite @jlfisher56 @cahnny @sebley12 @apriltbo1995, to to join in and share their experiences.

I see that Mentor @johnbishop has provided some great resources, and while doing a bit more research about VKH, here's what I found in the Orphanet Journal of Rare Diseases https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0412-4#Sec2

– It appears that the disease is divided into 4 stages: prodromic, acute uveitic, convalescent and chronic/recurrent.

–New highly effective drugs with less toxicity in the management of VKHD are continuously being searched. One example is the strong steroid difluprednate, which was used topically, at the onset of diagnosis, and promoted complete resolution of exudative detachments with improvement of visual acuity. New biological agents are also being pursued such as secukinumab and gevokizumab.

– Cataract formation was reported in 10–42 % of patients. Cataract surgery should be postponed until the uveitis is inactive for a minimum period of 3 months. Systemic corticosteroids (0.5–1 mg/kg/day) should be given starting 1 to 2 weeks before surgery and then tapered after surgery accordingly to the intensity of inflammation

@ccunning, @bluebell1 would you be able to share a few more details? When were you diagnosed with VKH? Have you or the doctors considered any alternative to methotrexate? What are your biggest concerns at present?

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