Chronic Uveitis & Meds for lifetime...?

[jmh4leo]

I’ve had Uveitis for around 15 years & after several years of severe long term flares, permanent loss of sight in left eye (due to botched cataract operation & lens replacement, many injections in the eyeball & long term steroid use) I was in remission for about 5 years. But for the last 6 months, a rare bacteria in my eyes caused a nasty infection & triggered the uveitis out of remission in both eyes -they are actively inflamed & have been for 6 months with the infection recurring every time I stopped FML drops. After 3 courses of FML They put me on a 4 week course of Pred Forte, (used that many times previously) but this consultant has said when I’ve finished this course of Pred to continue using FML steroid drops FOR THE REST OF MY LIFE and to never, ever stop. Is this correct? I’m thinking of asking for a 2nd opinion but wondering if anyone else has been given this advice? I have other auto immune conditions also just FYI (rheumatoid disease, osteo-arthritis, psoriatic arthritis, recurrent knee effusion, degenerative spine disease, Crohns Disease, ulcers on colon, faecal impaction, severe psoriasis & atopic eczema, Raynauds, De Quervains, inflammatory auto immune disease) I work full time and can’t take these FML drops for life as they seriously affect my ability to work as I have blurred vision in my working eye with these drops and I cannot give up work for financial reasons! Any lived experience or advice most welcome - Thank you

[Becky_MacularSociety Partner]

Good Morning Jmh4leo,

No one here is medically trained and so cannot replace the advice you have been given by your specialist. The Macular Society are not familiar with the treatment of Uveitis either.

If you want a second opinion, you are welcome to request that, if at the same hospital that is something you can request from them directly, if you'd rather see someone at a different hospital, this needs to be done via your GP

All the best,

Becky

[jmh4leo in reply to Becky_MacularSociety]

Many thanks 😊

[fed13]

I'm so sorry for you: you do have a lot to contend with. Do by all means eek a second opinion. I wish you the very best and much sympathy. xx

[jmh4leo in reply to fed13]

Thank you so much 😊

[Bluegreensea]

Hi jmh4leoI am really sorry to hear of all your current, and ongoing health issues.

What a lot to deal with; this must impact on your mental well-being too.

I am sure the nice folk on this forum will respond to you over the next 24 hours.

Meanwhile, my tuppence worth of advice, is to seek help from someone who will take a holistic approach to your problems.

A herbal practitioner, or Chinese medicine practioner for example.

I believe everything is connected.

Eat well, immerse yourself in nature, turn off the Wi-Fi overnight if you don't already.

Wishing you peace and better health for 2021.

BGS

[jmh4leo in reply to Bluegreensea]

Thank you so much 😊

[Bluegreensea]

Hi again jmh4leo

I'm sure you've come across similar articles...this doctor does not advise long term use of steroid drops at all - 'suppressive, not curative.'

You are captain of your own ship.

drweil.com/

[jmh4leo in reply to Bluegreensea]

Thank you so much 😊

[Rosalyn-helpline Partner]

Dear jmh4leo,

These links may be of interest to you:

uhb.nhs.uk/patient-involvem...

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

uveitis.net/uig/supportgrou...

Kind regards,

Macular Society Advice and Information Service