Has anyone had experience of drug induced lupus?

[cathie]

Just collected a copy of the letter from my consultant to the GP. She says 'it is possible that the infliximab has led to a lupus-like syndrome' which is one of the reasons for taking me off it. I am not convinced - as you probably know. She said 'she has recently had her anti-DNA antibodies tested and these are positive showing a titre of 19.8. Her ANA is 1.160. What on earth does this mean?

Incidentally - I know you'll all say this - I am requesting a meeting with her for clarification on this and other issues! But I'm interested in people's experiences.

[earthwitch]

Those blood tests do seem consistent with lupus (the anti- DS DNA one is definitely a lupus one), so it would seem a valid concern. Drug-induced lupus does go away when you remove the drug that caused it, so yes, taking you off the infliximab was the right thing to do. What I'm less sure of is whether you will be able to try another anti-tnf again, or if you can try it, how long they want you to wait before you do so. I'm guessing they will wait a while and do the lupus testing again to make sure that it was drug-induced lupus and wasn't just a coincidence that you have also developed the primary form of lupus. Its definitely possible to have both lupus and RA together, but in your case with the lupus blood tests showing up after you had been on infliximab its far more likely that its the drug-induced form.

I guess it really all means that you need to have another good conversation with the rheumatologist about what your treatment plan should be now.

[helixhelix]

The ANA test is used for several different auto immune diseases, but mainly lupus - as is the anti-DNA. And the resuts show that yes you have built up some antibodies in your blood stream that are suggestive of lupus. So sorry! That's all you need right now I guess. But at least it shows that the consultant had a reason for suggesting that you come of Infliximab - but why in heaven's name didn't she explain this at the time instead of upsetting you so badly by just saying that that she thought you were in remission! That's really bad practice to my mind, as well as being mean. Grrrrr....

And yes, a proper conversation is called for so hope you get an appointment soon. if not I think some stamping of feet will be required at the very least. Pollyx

[heatherp]

Hi Cathie - I have both RA and lupus (not drug induced as I tested positive for all these antibodies at initial diagnosis, as well as anti-ccp for RA). The anti-ds DNA is very specific for lupus and not found in many (in fact never heard of it in any) other autoimmune diseases. ANA can be positive in RA as well as other ones....May be worth asking if they ever tested these anti-bodies in your case before? How long ago were you diagnosed and what were your blood tests then?

I'd imagine if they suspect it is drug induced lupus they would keep you off infliximab and see if the results improve. If they do, they may try another anti-tnf, but if not there is one biologic that is approved for both lupus and RA, which my consultant is currently applying for funding for me for - Rituximab. I have always been told that for RA I'm not bad enough for it, mainly because most joint pain is in feet which don't count for DAS, however have just found out that my constant low white cell counts and lymphocytes seem to be caused by lupus, and can't go onto any of the DMARDS so consultant feels confident about having rituximab approved!

Good luck in your case - hope you get to the bottom of it and don't suffer too much in between meds!

[Hidden]

Oh no Cathie poor you. I agree with Polly - it's most unfair that she didn't explain her hunch with you at the last consultation and didn't discuss alternatives either. Rotten for you really - so sorry but I hope Heather's input has helped especially re Rituximab as a possible alternative? Tilda x

[MrsFitz17]

Hi Cathie

I had drug induced lupus after being on golimumab for 2 months. If it is drug induced it should go away once you are taken off the drug that caused it. I was able to go back to enbrel after the golimumab had had sufficient time to clear from my system. Unfortunately the enbrel didn't work the second time round and I have since had rituximab which also failed and started tociluzimab last week. As far as I know the lupus has now gone, I wish I could say the same for the RA.

Hope you feel better soon

Mary

[cathie]

Thankyou everyone. I'm a bit too tired tonight to reply properly but I will read all tomorrow and pull out some very helpful hints. Watch this space.