Has anyone ever had drug-induced lupus from Carbamazepine?

Hi, I seem to be slowly succumbing to an autoimmune system failure. I now have subclinical hypothyroidism, anaemia, neutropenia, possible Sjogren's syndrome and a rash that looks like a discoid rash, which you get with lupus.

Apparently this is not completely unknown, if rather rare. Has anyone else ever got 'drug induced lupus' from taking Carbamazepine, or any other anti-convulsant drug? Did you have ANA testing? Did your 'lupus' go away after you came off the drug (assuming you did!). If so, how long did it take?

I'd love to hear from anyone who has any experience of this, either personal or second-hand.

There is a rare and sometimes life-threatening reaction to Carbamazepine called Stevens Johnson Syndrome. It's more common in people of south Asian descent (if one in 10,000 can be said to be common). But a good many more patients report rash or hives from Carbamazepine, at intensities short of intense reaction.

When I started down through your initial list of subclinical issues, Lupus immediately occurred to me. However, conclusive diagnosis of Lupus can be difficult and take quite a bit of time. I think it would be smart to consider switching meds with your neurologist's supervision. Trileptal is a tailored drug close in chemistry to Tegretol but with fewer side effects. Gabapentin is effective in reducing if not eliminating pain for many.

Regards, Red

Hi, I’ve often wondered about this as I’ve been on anti- convulsants (carbamazepine my main one) for a long time…
I’m not a doctor, based on my personal research, it’s wise to discuss alternative medications ( like the ones Red mentions above) and never take carbamazepine again as it could cause the same reaction. Once off the med, the symptoms should go away with time.
Talk to your doctor about this right away . I hope with time the extra auto immune issues will settle. Let us know how you’re doing.
(( hugs )) Mimi

Thanks for that, Red. I'm actually trying to come off Carbamazepine currently, as I am in a period of remission (I hope!) So switching at this moment in time would just slow things up and add more confusion, but certainly, if I can't get off the drug, I would definitely consider switching to a different medication. I have had Gabapentin, but didn't find it very helpful, so doubt if that would be a good replacement. However, I've never tried Trileptal so that is one to keep in mind.

All that said, there is some doubt in my mind as to whether this is being caused by Carbamazepine, or whether Carbamazepine is just aggravating a pre-existing condition (I did have neutropenia, for example, before medication, just not so badly) . Hopefully the doc will agree to ANA testing, which might clear things up a bit.

Richard A. "Red" Lawhern said:

There is a rare and sometimes life-threatening reaction to Carbamazepine called Stevens Johnson Syndrome. It's more common in people of south Asian descent (if one in 10,000 can be said to be common). But a good many more patients report rash or hives from Carbamazepine, at intensities short of intense reaction.

When I started down through your initial list of subclinical issues, Lupus immediately occurred to me. However, conclusive diagnosis of Lupus can be difficult and take quite a bit of time. I think it would be smart to consider switching meds with your neurologist's supervision. Trileptal is a tailored drug close in chemistry to Tegretol but with fewer side effects. Gabapentin is effective in reducing if not eliminating pain for many.

Regards, Red

Hi Mimi, thanks for replying. As I just said to Red, there is some doubt in my mind as to whether this is being caused by Carbamazepine, or whether Carbamazepine is just aggravating a pre-existing condition (I did have neutropenia, for example, before medication, just not so badly), so I would like to have testing to see if an autoimmune problem is really occurring. It will give me a baseline to measure things against if I manage to come off Carbamazepine. That way, I will be able to tell if the autoimmune issues, if that's what they are, are improving or not. And, hopefully, then I will be able to tell if this is a drug problem or something more deep-rooted.

Mimi said:

Hi, I've often wondered about this as I've been on anti- convulsants (carbamazepine my main one) for a long time...
I'm not a doctor, based on my personal research, it's wise to discuss alternative medications ( like the ones Red mentions above) and never take carbamazepine again as it could cause the same reaction. Once off the med, the symptoms should go away with time.
Talk to your doctor about this right away . I hope with time the extra auto immune issues will settle. Let us know how you're doing.
(( hugs )) Mimi