Please help me with medication advice

[SLS2103]

Hi everyone

I'm hoping someone out there can help.

Can you please tell me if the medications prescribed are meant to completely fix our symptoms or reduce them so they're more manageable?

I'm really struggling at the moment.

Thanks, Sarah

[Tanitani]

reduce the symptoms mostly although sometimes they can put you in remission for some time.

[SLS2103 in reply to Tanitani]

Thank

[Tiggywoos]

hi Sarah I’m sorry you’re really struggling 😔. You ask a good question and to be honest I always thought it was a case of “damage limitation “. I guess some people do get complete relief .

My rashes cleared up in 6 months (pretty typical time span from what I can gather) but other symptoms have always stayed . I think the best way to think of medication is things could be worse if we weren’t on it .

Sending you a big hug 🤗 and the best advice I could ever give you is be very very kind to yourself and post on here when you need help and advice xxxx

[SLS2103 in reply to Tiggywoos]

Thank you for your response. It really helps to hear from others, especially when they're so kind. 😊

[Tiggywoos in reply to SLS2103]

ah you’re very welcome .. sorry I wrote that when I was bit tired so forgot to say it’s worth keeping an eye on iron and B12 levels and magnesium. If these are too low or too high they won’t help your symptoms x

[Tiggywoos]

sorry forgot to say it probably also depends what medication you are on . I take hydrox and Mepacrine but I see you are on MTX. I’m sure one of the lovely forum people will comment for you xx

[MusicalFurbaby]

Hi SLS, unfortunately for many of us, the meds give some benefits but don’t provide complete relief. And some meds are better for different things; one medication may reduce pain while another keeps rashes under control. And some medication takes months to kick in, so it can be hard to tell how effective it is at first!

As an example, I am on hydroxy which has reduced my sores and rashes by about 90%. My specialist stated he was happy with this result; I still get breakthrough sores, but he said that was pretty good for this med. Hydroxy is also supposed to help with fatigue and joint pain, but sadly, I have not experienced those benefits. You never know until you try!

[SLS2103 in reply to MusicalFurbaby]

Hello and thank you for the response. My question was triggered by the fact that a nurse said I shouldn't get any more symptoms after having been on methotrexate for a few months. I suspected it was just because lupus is rare and not many medical professionals are exposed to it, but wanted to check with those in the know ie everyone on here!!

[MusicalFurbaby in reply to SLS2103]

Yes, it helps to check things out with fellow lupies! And you never know, you may get further benefits from the metho down the track. I hope things improve for you!