Azathioprine for Ocular Sarcoid

Posted by jerriarizona @jerriarizona, Oct 19, 2022

I was recently diagnosed with ocular sarcoidosis. I've been on a low dose of Azathioprine for about 3 weeks. I've seen improvement and a reduction of swelling around my eye. While I'm grateful, I'm struggling with the medicine -- nausea, headaches, fatigue, low appetite. I don't have a good sense from the doctor about the duration of treatment. Wondering if others would share their experiences with the drug, in particular how long was your course of treatment. Thank you so much.

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Becky, Volunteer Mentor | @becsbuddy | Oct 19, 2022

Hello @jerriarizona I’m glad that you’re seeing some improvement even though the medicine bothers you. What you are experiencing, nausea and fatigue, can be very common when starting a new medicine. Usually the side effects go away as your body adjusts to the medication. Side effects can be a real pain in the neck, can’t they?! One suggestion is to take the medicine at night time, if the doctor says it’s OKAY.

Good questions to ask your doctor may include:

What's the most likely cause of symptoms?
What kinds of tests do I need? Do these tests require any special preparation?
How might this condition affect me?
What treatments are available, and which do you recommend?
Are there medications that might help?
How long will I need to take medication?
What are some of the side effects of the medication you're recommending?
I have other health conditions. How can we best manage these conditions together?
What can I do to help myself?
Are there any brochures or other printed materials that I can have?
What websites do you recommend for more information?
Don't hesitate to ask other questions during your appointment.

Have you spoken to your doctor yet about the problems you’re having?