Drug induced lupus - what to expect?

[PurpleNDH]

I’ve been lurking here for a while and feel a fraud as my diagnosis is DIL, so apologies for what must be a trivial question to those of you in it for the long haul.

The Rheumatologist discharged me once she’d identified the cause of my symptoms and told me to discontinue the drug causing the problem, which I’ve done. That was at the end of January.

I was so pleased to finally have a diagnosis that I didn’t think to ask her what to expect. I gather that it could take several months for things to improve but I’m having a rollercoaster of a ride. I’ll have 1 or 2 really good days where i almost feel ok followed by 3 or 4 hideous days where I can barely move.

Does anyone know if this is to be expected?

Thanks for reading!

[charlotte_g]

Hi PurpleNDH,

Oh my, please don’t feel a fraud. If you feel bad, it doesn’t matter what your diagnosis is and even to have lupus symptoms for any period is no fun!

I would guess that on the days you feel ok, it would be easy to push yourself too hard / do too much and then you have a bit of crash and feel horrible.  

I’m only recently diagnosed but I understand the trick is as soon as you start to have an inkling that you’re doing too much, slow down. It’s better not to overdo it if you can.  

I don’t know what symptoms you are having, but if you have a rash you should probably stay out of the sun as that can make it worse. You can get topical treatment if the rash is bad/ uncomfortable which might help in the short term. (I have Protopic which works for my rash - which is like psoriasis).  

Lots of antibodies seem to have a half life of about 6 weeks I think, so when you stop taking the drug I guess your body should stop making antibodies, but you will have existing antibodies in your system for a few months (depending on how long those antibodies live for).  

In terms of fatigue, pain etc. I find it can be helpful symptomatically to eat anti-inflammatory foods. (Eat lots of colourful, leafy vegetables (vegetables like broccoli may help your liver process drugs), oily fish, nuts, seeds, olive oil and limit refined sugars, cakes, biscuits etc).  It might help you feel better.

I’d also get a vitamin D test personally if you can - no harm in making sure that’s at a good level. 😊  Hopefully your symptoms will resolve reasonably quickly. I would guess if you’re not feeling better in a couple of months, you should refer back to your diagnosing doctor.  

And as well ask the doctor who prescribed the medication that triggered your DIL, for an alternative class/type of drug if you still need it.

I hope you feel better soon.

Best wishes, Charlotte