Enbrel induced lupus | Arthritis Information

 

Has anyone here developed Enbrel-induced lupus? I just came back from a dermatologist appt as I presented with a chest/back body rash. She is testing me for lupus for lack of a better diagnosis.

If it is drug induced I believe it reverses itself when you stop the drug. Is this true? And if Enbrel is stopped can you take any other biologics?

I'm reeling from this news as Enbrel had given me my life back and now I don't know what to expect.

I have read a little about the drug induced lupus, and yes most times it goes away once the med that is causing it is stopped.

That's odd. Most RDs will try to steer people away from AP with the (very rare) drug-induced Lupus possibility, but as far as I know it's not even mentioned with Enbrel.

I know in Minocin induced Lupus most of the time the Lupus will go away after the drug is stopped.

Good luck in your search for a replacement therapy.http://www.skintherapyletter.com/treat/psoriasis/etanercept_enbrel.htmlThis might answer your other question joonie2008-05-07 13:12:50Ok got this from about.com It is an extremely rare side effect of Enbrel

http://www.emedicinehealth.com/lupus_systemic_lupus_erythematosus/page2_em.htmLynn492008-05-07 13:28:18What lupus symptoms did you have? I ask this because I've had some really chapped lips for like three weeks and nothing is helping it. Now i have a red itchy rash going from the corner of my mouth to my jawline and a little under my nose.

I haven't used any different products for cleaning or makeup. Infact I've stopped putting make up there and no lipstick. WAs using chapstick like crazy but today I'm trying aquaphorJoonie, thanks for the links.

Honey, I have a rash on my chest, stomach and back. It lasted only about 4 days and was extremely itchy. This is the third time I've gotten it.I haven't used biologics, but my family doctor stated that he would never give biologics for just that reason.  The bad side effects like this have taken several of his RA patients over which is very sad. Bubba-Looking at the possibility of lupus in the face, I have to say I would have made the same decision to start Enbrel. I believe the Enbrel induced lupus is reversible once stopping the drug. But I hope that if my ANA titre comes back indicating an elevation (and therefore somewhat confirming lupus is possible), that they will let me continue Enbrel as long as the only symptom is a rash. Enbrel has given me a quality of life I could only have dreamed of a few years ago. My biggest fear is being taken off of it and going back to that miserable life.

That being said, I would be saying something very different if I developed MS (which is NOT reversible). Apparently Enbrel can unmask a latent tendency toward MS.Why is it that anything I read about these biologics makes it seem like the side effects are so very rare but here I read about everybody getting them or knowing someone who got them?I used Enbrel for almost 8 months and never had any kind of side effect. It just didn't reduce the inflammation enough. I also know someone, who used to post here, who has used Enbrel for 9 years with no problems at all. Lynn492008-05-08 05:15:28Most people don't report when they are NOT having any issues.I don't have any side effects with enbrel or mtx. [QUOTE=wanttobeRAfree]Why is it that anything I read about these biologics makes it seem like the side effects are so very rare but here I read about everybody getting them or knowing someone who got them?[/QUOTE]

My opinion is that the studies were done on relatively small groups and the side effects look rare, but the longer the med is on the market and the more people try it, the side effects are actually revealed to be more common.

Voixx/Bextra - perfect example.  They hid the studies showing the negative side effects and used the ones that didn't, and it took forever for those side effects to be taken seriously.  In the mean time, I personally know two people hospitalized for cardiac events on those meds!
Well, so far on this forum no one has reported enbrel induce lupus. [QUOTE=hessalina] Most people don't report when they are NOT having any issues.[/QUOTE]

I don't agree with that assessment. People post positive experiences with as much frequency as negative experiences.
[QUOTE=Lynn49] I used Enbrel for almost 8 months and never had any kind of side effect. It just didn't reduce the inflammation enough. I also know someone, who used to post here, who has used Enbrel for 9 years with no problems at all. [/QUOTE]
[QUOTE=Linncn] I don't have any side effects with enbrel or mtx.[/QUOTE]

I think the side effects are under reported. [QUOTE=Gimpy-a-gogo] [QUOTE=hessalina] Most people don't report when they are NOT having any issues.[/QUOTE]

I don't agree with that assessment. People post positive experiences with as much frequency as negative experiences.
[/QUOTE]


Ask any restaurant manager - how many people call up to complain, vs how many people call up to say that their dining experience was normal, uneventful, etc?

Where I work, our customer service department has yet to have a customer call to tell us that everything is just fine with their equipment.  We only hear from them when there are problems.  At our industry trade shows, when customers talk with each other, most of the conversations revolve around problems and how to solve them - not uneventful, normal operations.

Read customer based restaurant reviews on the internet. Most of them are positive.
Or people's book reviews. Comparing an open forum to a department DEDICATED to complaints sucxh as a customer service desk is illogical. People report positive drug experiences on this board ALL THE TIME, so your restaurant analogy is completely irrelevant.
Also, the people who come here and report adverse side effects are already here BEFORE these side effects happen, so it doesn't make sense to say you're only hearing from people with negative experiences. I would say that makes the case that we're hearing from a pretty average cross section of user experiences, of which a lot are negative.

That's why I stick by my opinion that negative side effects from these drugs are under reported.Yesterday while I was looking for the links I posted on this thread... I saw articles from the Lupus foundation that showed people having drug induced lupus on just DMARDS. Problem is when our symptoms are BAD we know we have to  take risks & meds may be necessary evils but when you are in a gray area....it gets tough to make decisions.WantotbeRAFree - I'd like to think that one of the reasons the Enliven nurses continue to call is to report such information. I know that is probably wrong because whenever I have had an issue, no matter how small, they generally are not allowed to offer help unless it has to do with explaining the injection process.

But there are people that will sue over Enbrel-Induced-Lupus which, I hope, would create such a record (even it if is alleviated by discontinuing the drug). Because the diagnosis of lupus IS reversible, does it really matter much from a medical standpoint? Like any drug with intolerable side effects, you move onto the next one. That, of course is easier said by the medical profession than done by the patient experiencing yet another failed attempt at living a normal life.

I don't know the answer to the possible problem of under reporting. All I know is that, STILL, no one on this forum has come forward with this issue which is what this thread was all about. So I have to think it is rare and that some how I may have picked the winning lottery number.i have read statins are not reported by gps when patients
have side effects.. and manufactures are hiding the negative
results.. must loook for the articles..

my own gp will never admit a drug has caused side effects.
i think Money is involved here...

Boney....*raises hand*