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pattym
@pattym

Posts: 7
Joined: Aug 22, 2018

Drug-Induced Lupus

Posted by @pattym, Thu, Oct 11 9:26pm

Hello everybody, I developed an autoimmune disorder this summer, and my rheumatologist is in the process of trying to diagnose it. The possibilities in the mix right now are drug-induced lupus; lupus; psoriatic arthritis and reactive arthritis. I have a mildly positive ANA (1:160), a strong-positive for histone antibodies, and a positive for chromatin antibodies. My symptoms have mostly been myalgia and arthralgia, with some swelling of entire fingers and toes, mild serositis (chest pain), mild Reynaud's and before I was treated, extreme fatigue and malaise. There is no history of autoimmune disorders in my family, save for a cousin of my mom's who has rheumatoid arthritis. For what it's worth, I'm in my mid-40s and am white. I stopped taking the possible offending medication (zonisamide) about two months ago, and slightly prior to that, got started on methotrexate. My symptoms have significantly reduced since then, but I still have some pain and stiffness in my fingers from time to time, as well as on one side of my jaw. I've also been having nerve pain on the top of my head, but that may be unrelated. From the reading I've done, drug-induced lupus usually goes away within a few months, but sometimes can take up to half a year to go away. I'm guessing that given that I'm on methotrexate (15mg), my symptoms would reappear to some extent if I stopped taking it. This makes me wonder if I have one of the other possibilities, other than drug-induced lupus. However, I also feel a little worried that maybe we haven't correctly identified the medication that's triggering all of this. Unfortunately, I have severe, frequent migraines and allergies, so I'm on a slew of medications and supplements for that. In particular, I'm taking gabapentin, and wonder about that, given that it's in a category (anti-seizure medications) known to trigger reactions in people. I tend to have pronounced negative side effects to meds, so it wouldn't surprise me if this were drug-induced lupus, but who knows. Thanks SO much for any thoughts you have.

REPLY

Hello Patty and welcome to Mayo Connect! I’m sorry to hear what is happening to you and I personal know how frustrating it is to deal with autoimmune conditions. I am currently in the process of being diagnosed with Lupus and I meet 6 of the 11 criteria for diagnosis, which you only need 4. It’s great you are already seeing a rheumatologist, they are the best people for autoimmune conditions. Has yours run any other bloodwork and have they considered any other medication treatments? Also, has there been any imaging done for the chest pain? That symptom alone can mean a lot of things but with lupus it can be inflammation around the lining or the heart of lungs that causes it.
Now, anti-seizure medications is on the list for DIL, however, I’d speak with your doctor before you cut the medication (which usually has to be tapered off for most people) to see if it the medication or you have to consider other conditions rather than DIL. I saw Lupus, Psoriatic Arthritis and Reactive Arthritis are options on the table but has RA been considered since from what is stated above you do have that in your family history? Also, since your symptoms are improving on Methotrexate that is good, it can take a while but that is one medication that is used in Lupus as well as many other autoimmune conditions, stopping it could bring back your symptoms especially since you don’t know for sure which condition this is. My best suggestion is look at all conditions that your MD has suggested and do as much research. Then make an appointment to speak with him/her to bring up further questions or concerns.
Now if this is true DIL then it could take, like you said, months before you notice a true improvement. Your doctor took you off the original medication, the reason they may not have taken you off the gabapentin is to figure out what medication it is causing DIL that way it can be documented and no health care provider in the future will attempt to put you on it again. Again, I’m so sorry you are going through this as any form of lupus can be frustrating to deal with but hang in there and good luck.

I hope this helped!

Marilyssa Trujillo

Hello @pattym, I would like to add my welcome to Connect along with @nikohl7 who has offered some great suggestions. Another tool that I use that you might find helpful is Google Scholar (https://scholar.google.com/) which finds a lot of research and medical information. It also lets you sort the links it finds by date to see the latest information first. I did a search using the phrase drug induced lupus and here is what it found:

https://scholar.google.com/scholar?as_ylo=2018&q=drug+induced+lupus+list&hl=en&as_sdt=0,24

As far as the gabapentin, here is a site that describes it's usage along with Lyrica.
Lyrica vs. Gabapentin: Differences between Pain Relief and Uses
https://www.medicinenet.com/lyrica_vs_gabapentin/article.htm

@pattym, are you able to ask your rheumatologist why the gabapentin was prescribed? I'm guessing it has something to do with nerve pain but I have no medical training or background.

John

@nikohl7

Hello Patty and welcome to Mayo Connect! I’m sorry to hear what is happening to you and I personal know how frustrating it is to deal with autoimmune conditions. I am currently in the process of being diagnosed with Lupus and I meet 6 of the 11 criteria for diagnosis, which you only need 4. It’s great you are already seeing a rheumatologist, they are the best people for autoimmune conditions. Has yours run any other bloodwork and have they considered any other medication treatments? Also, has there been any imaging done for the chest pain? That symptom alone can mean a lot of things but with lupus it can be inflammation around the lining or the heart of lungs that causes it.
Now, anti-seizure medications is on the list for DIL, however, I’d speak with your doctor before you cut the medication (which usually has to be tapered off for most people) to see if it the medication or you have to consider other conditions rather than DIL. I saw Lupus, Psoriatic Arthritis and Reactive Arthritis are options on the table but has RA been considered since from what is stated above you do have that in your family history? Also, since your symptoms are improving on Methotrexate that is good, it can take a while but that is one medication that is used in Lupus as well as many other autoimmune conditions, stopping it could bring back your symptoms especially since you don’t know for sure which condition this is. My best suggestion is look at all conditions that your MD has suggested and do as much research. Then make an appointment to speak with him/her to bring up further questions or concerns.
Now if this is true DIL then it could take, like you said, months before you notice a true improvement. Your doctor took you off the original medication, the reason they may not have taken you off the gabapentin is to figure out what medication it is causing DIL that way it can be documented and no health care provider in the future will attempt to put you on it again. Again, I’m so sorry you are going through this as any form of lupus can be frustrating to deal with but hang in there and good luck.

I hope this helped!

Marilyssa Trujillo

Jump to this post

Thanks so much for your supportive and encouraging note, Marilyssa! I'm really sorry to hear that you're in the middle of being diagnosed with possibly lupus. Waiting to get a more definitive diagnosis and treatment is difficult, to be sure. I agree with you that doing a lot of research is the best course of action. I've already done a lot of reading on uptodate.com, which is an excellent resource, that I highly recommend, if you haven't used it yet. (I checked with several physician friends who say that they use uptodate all the time.) They do charge, but as a lay person, you can get a week of access for a relatively low amount, and then you have a treasure trove of information designed for physicians.

@johnbishop

Hello @pattym, I would like to add my welcome to Connect along with @nikohl7 who has offered some great suggestions. Another tool that I use that you might find helpful is Google Scholar (https://scholar.google.com/) which finds a lot of research and medical information. It also lets you sort the links it finds by date to see the latest information first. I did a search using the phrase drug induced lupus and here is what it found:

https://scholar.google.com/scholar?as_ylo=2018&q=drug+induced+lupus+list&hl=en&as_sdt=0,24

As far as the gabapentin, here is a site that describes it's usage along with Lyrica.
Lyrica vs. Gabapentin: Differences between Pain Relief and Uses
https://www.medicinenet.com/lyrica_vs_gabapentin/article.htm

@pattym, are you able to ask your rheumatologist why the gabapentin was prescribed? I'm guessing it has something to do with nerve pain but I have no medical training or background.

John

Jump to this post

Thank you, John, for your thoughts! I've gone to pubmed and uptodate.com for info, but Google Scholar is a good idea, too. The gabapentin was prescribed by my neurologist for my headaches. And it's not listed as being a potential trigger of drug-induced lupus. But, several medications in the anti-convulsant category ARE potentially triggers of drug-induced lupus. And, since my symptoms haven't subsided after being off zonisamide (an anti-convulsant prescribed to me for my migraines), I'm starting to wonder if something else I'm taking is triggering this.

@nikohl7, meant to answer your other questions: yes, a chest x-ray was done, and my rheumatologist was extremely thorough in testing for everything under the sun. The only abnormal results for me were ANA, histone antibodies and chromatin antibodies. I'm very confused, too, about whether chromatin antibodies ever show up in people with drug-induced lupus.

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