Life with lupus once you're off the meds?

[kyliexc]

Hey lupies!

I was diagnosed last March with SLE, and since then my meds have been tapered off to hydroxy & methotrexate - which my body is responding pretty well to. Docs are saying that we should wait a year or so before we think about reducing anymore. I was just wondering if anyone has had the experience of getting being taken completely off meds and how it worked out for them? Did symptoms come back?

[Kimplr]

I have been off methotrexate for about a year. The only lupus med I take now is hydroxy. I’ve been doing pretty well- I do still flare but relatively mild compared to before I was put on medication. I used to have serious joint pain- but I haven’t had it for about a year.

[kyliexc in reply to Kimplr]

Thanks for your reply! I used to get terrible joint pain, and I was worried about life without meds - so that's a bit of a relief to hear.

[Melba1]

Hello, what meds were you on before these?

I tried stopping hydroxy a few times but each time, a couple of months later, I reflared badly and then it took a while to get it back under control with hydroxy taking a while to work again and having to have steroids too. I think hydroxy is relatively mild so I presumed most of us stay on it forever as it does keep things under control and stop it progressing.

It’s a very hard decision isn’t it? I have spent years being desperate to get off all the meds but only recently accepted that in my case I never will.

Lupus is such a diverse disease though that some people can be med free if stable and if you don’t have organ involvement and your rheumy says it’s ok to try then I’d be tempted if it was me. I’m on hydroxy, rituximab, have had various DMARDs and been on steroids on and off for years but have been on them constantly a year now. I keep trying to negotiate dropping steroids with my rheumy as I’d LOVE to be rid of them but he is very loathe to let me. I didn’t listen to him a couple of times and reduced anyway and got really ill so I’ve learnt the hard way to follow their medication instructions!

Good luck with it

X

[kyliexc in reply to Melba1]

Thanks so much for your reply!

Before these I was on prednisolone as well, but tapered off those thankfully after my body was stable enough. While it would be good to 'go back to how life used to be', and to be med free - I think I'd much rather be on these than experience anything like my last flare up, which also happened to be my first! But thank you so much for your response. Hopefully I can taper off a little bit more, but we'll see! X