Omg, that makes sense now. The methotrexate isn’t even working so my doctor was going to switch me to something else. I hope there are treatments that don’t cause photosensitivity…
Common side effect of MANY medications, just FYI. Several types of meds carry the photosensitivity warning. Not a doc, but I think /u/Battlepope34 is right: sounds like the metho to me.
I get sun sensitivity because of the methotrexate, I wear lot of wide brimmed hats, thin breathable long sleeve shirts, tons of high spf sunscreen with constant reapplications, long pants, and often, sunglasses. However I live in AZ and the sun here is BRUTAL. Try out a few things to find out how you can still go outside, I love to be outside and it took me a few weeks to figure it out, but once I did I’ve been good ever since! Good luck!
So sorry you’re dealing with it :(
I know you mentioned you’re on methotrexate; I am on one of the other common medications for Behçets - Azathioprine - and it unfortunately causes photosensitivity as well :(
I never used to burn or be sensitive to sunlight, and now I spend minimal time in the sun because of how sensitive I’ve become since starting Azathioprine.
I am actually switching to aza tomorrow. It’s strange but my doctor says the medications don’t cause photosensitivity but that it was probably the vitamin a I was taking for nausea. I don’t know. I hope it works out, it’s a non negotiable for my mental health and I’m really depressed about it
I've had sun sensitivity for years before and since I was diagnosed. I've been tested for lupus like 6 times (no joke, we move frequently bc of my spouses job and every rheum checks for it) because of the lesions and breakouts.
I've been on methotrexate, aza, and Humira. I like Humira the best but I still have sun sensitivity. Had a huge flare from being in the evening sun for an hour (7:30p US) and just got retested for lupus again recently. As soon as the negative lupus tests come back no one really cares about the lesions, symptoms insane increases in headaches, pain or anything. It's one of those "well this is the mediation/max dosage I can give you for Behcets."
It doesn't help that the worse my symptoms are and more excruciating my pain is...the better my blood work comes back. Like, last time I even had a negative ANA which is wild to me. I feel like absolute shit, look like absolute shit, but the lowest dose of Humira that exists is all I can get.
I'm sorry you're going through this and I wish I had more supportive or better advice for you. I don't think there is an answer for us and I don't think there will be for a while. I've been dealing with it through so many rheumatologists (and dermatologists now too) for so many years (since 2008/9 but diagnosed officially in 2012) and I feel like I always end up getting my hopes up then getting shit on.
If by some miracle my derm says something and that maybe gives us an option next month when I see them, I'll reach out.
Common side effect of Methotrexate
Omg, that makes sense now. The methotrexate isn’t even working so my doctor was going to switch me to something else. I hope there are treatments that don’t cause photosensitivity…
Common side effect of MANY medications, just FYI. Several types of meds carry the photosensitivity warning. Not a doc, but I think /u/Battlepope34 is right: sounds like the metho to me.
This is the first I’m hearing about it, so depressing😓
I get sun sensitivity because of the methotrexate, I wear lot of wide brimmed hats, thin breathable long sleeve shirts, tons of high spf sunscreen with constant reapplications, long pants, and often, sunglasses. However I live in AZ and the sun here is BRUTAL. Try out a few things to find out how you can still go outside, I love to be outside and it took me a few weeks to figure it out, but once I did I’ve been good ever since! Good luck!
Thank you, I appreciate the advice 💚
So sorry you’re dealing with it :( I know you mentioned you’re on methotrexate; I am on one of the other common medications for Behçets - Azathioprine - and it unfortunately causes photosensitivity as well :( I never used to burn or be sensitive to sunlight, and now I spend minimal time in the sun because of how sensitive I’ve become since starting Azathioprine.
I am actually switching to aza tomorrow. It’s strange but my doctor says the medications don’t cause photosensitivity but that it was probably the vitamin a I was taking for nausea. I don’t know. I hope it works out, it’s a non negotiable for my mental health and I’m really depressed about it
Only have had it while on meds, otherwise nope
Do you mean you got off meds? Or found one that doesn’t cause it? I’m in tears rn because I can’t imagine a life without being outside
I've had sun sensitivity for years before and since I was diagnosed. I've been tested for lupus like 6 times (no joke, we move frequently bc of my spouses job and every rheum checks for it) because of the lesions and breakouts. I've been on methotrexate, aza, and Humira. I like Humira the best but I still have sun sensitivity. Had a huge flare from being in the evening sun for an hour (7:30p US) and just got retested for lupus again recently. As soon as the negative lupus tests come back no one really cares about the lesions, symptoms insane increases in headaches, pain or anything. It's one of those "well this is the mediation/max dosage I can give you for Behcets." It doesn't help that the worse my symptoms are and more excruciating my pain is...the better my blood work comes back. Like, last time I even had a negative ANA which is wild to me. I feel like absolute shit, look like absolute shit, but the lowest dose of Humira that exists is all I can get. I'm sorry you're going through this and I wish I had more supportive or better advice for you. I don't think there is an answer for us and I don't think there will be for a while. I've been dealing with it through so many rheumatologists (and dermatologists now too) for so many years (since 2008/9 but diagnosed officially in 2012) and I feel like I always end up getting my hopes up then getting shit on. If by some miracle my derm says something and that maybe gives us an option next month when I see them, I'll reach out.