Drug induced Lupus | Arthritis Information
My sister went to the doctor thinking she has RA symptoms and wanted to get it checked out.
My sister is all freaked out. She was told she has drug induced Lupus. The only drug she is on is zoloft. She has been on it for 11 years. This drug is not suppose to cause lupus.
How do they tell if it's drug induced or the regular lupus??
Hope someone knows something about this. I am worried for her.
Thank you.
Hey Thinn -
I Googled DIL and Zoloft and got some hits. This is one. The other was somebody being treated fro depression on a med that was withdrawn from the market.
Interestingly, the second link said DIL can manifest years after the exposure.
General DIL info -
Please don't worry - this will resolve on it's own. And if it helps at all - I don't really 'believe' in DIL.
Has she been on any antiobiotics recently?
Hugs,
Pip
Better to have DIL than regular lupus since DIL should cease once the drug has been stopped (although it make take some time to get it out of your system). This is what I was told about Enbrel anyway. I was suspected to have DIL because I presented with a rash several times. http://www.rheumatologynews.com/article/S1541-9800(08)70371-5/fulltext
i was really bitchy in my original post..I would like to aplogize to Pip for my tone
Buckeye
buckeye2008-06-20 12:21:30 [QUOTE=buckeye] Gee Pip..we should all feel better because YOU dont believe in DIL. Why because you have an intensive medical and scientific background? Because you have conducted the double blind studies that show that the symptoms of DIL come from something else? Or is it simply becase DIL is also considered a possible side effect of minocin and if DIL existed that would mean that your drug of choice also has a risk of a serious side effect[/QUOTE]
Bingo....... Thanks Pip.
The real problem now is that my sister is on zoloft. She is on no other drug. I asked her this morning if she has been on any antibiotics lately and she said "No".
Zoloft is a really hard med to get off of with extreme withdrawel symptoms.
Very bad depression and suicide thoughts. My sister has tried to get off a few years ago
and when she got down to 25mg she just couldnt take it.
I have 2 sisters on zoloft and my other sister lost her daughter to cancer and went on it and she can never go off no matter what , maybe if she was hospitalized.
Anyway, Zoloft must be the culprit. I am sure that many RA sufferers are on it as well.
By the way, Does every thread have to turn into an argument???????
Whats going on with you guys????
Some people have luck switching to a low dose of Prozac (maybe 10mg every few days) when trying to discontinue SSRI's with a short half-life (Paxil, Zoloft, etc). Prozac's half-life is much longer (over a week) so the withdrawal symptoms are not nearly as troubling.
Hessalina - did they test you or just say DIL? What did they do and what did you switch to? Did it go away?
Hey Thinn!
Please don't forget to have your sister go to the FDA website and report this as an adverse reaction. One of the sites I'd seen showed a few people saying their Lupus came on after Zoloft. They're not connecting the dots - we need to do that for them.
How did your sister wean from Zoloft. I'm not familar with the drug, but I'm thinking it might be a SSRI??? If it is, please go to the Partnership for a Drug Free America and look up the stuff they have there. Try SSRI's and also Phen-fen. I can't remember what they call it - serotonin syndrome??? but it's when you try to just stop or wean incorrectly. One doc said you have to 'shave' the pills on the way down so as to avoid what you just mentioned. But it can be done.
Also, loved Jas's suggestion. That might help alot.
As for the DIL - my research for it's use with antibiotics is what makes me say what I did. At the time I was trying to decide if the RB was a bunch of crackpots as well as figure out what my risk would be. It doesn't matter that it was 'rare' - if its some freak off the wall possibility - it was going to happen to me. I also researched the even more rare "Minocin Induced Pneumonitis" as my lungs are the weakest part and I was betting I'd get hit there too.
What I decided after a few months of research is that DIL - in response to antibiotics anyway - is nothing more than a "Jarisch-Herxheimer" reaction and my plan of action was to lower the dose and maintain on the minimum tolerable dose and 'cough my lungs out'. I figured I didn't want the buggers in my joints, and I sure as hell didn't want them in my lungs. Then I was going to hog-tie my doc and make him write up my experience as a case study. Technically, I would have been a 'study of 1' - but it would have been in the public record.
The problem is, when APer's get MIL or MIP they freak out and stop the med. What we usually do is switch to doxycycline and the stuff eventually goes away. When it's your lungs tho, many people won't even try to see if it's a herx. There was one person on the RB that quit when she got MIP.
So, I'm expecting something and my 6 month herx was a case of pneumonia. I mean, it was the worst case of pneumonia I'd ever had and I get pneumonia regularly. Mind you, at this point our house is wall to wall boxes, we're moving across the country in 2 weeks, I'm stressed to the nth degree, and I get the herx from hell. I could not breathe, couldn't lie down in bed, was burning up, and it was horrible. And I'm 2500 miles from my AP doc with only a new doc as my PCP. I was convinced they were going to say MIP and try to pull my Mino from my hands. Over my dead body! So, we're making plans to leave the car and just drive me to LA with the UHaul so they couldn't do that.
It was amazing. First time I ever beat off pneumonia with only one course of levaquin. They even downgraded my pneumonia after telling me I would need to be hospitalized with IVs. I didn't get to be my case study because nobody used the word 'MIP" tho. Sigh.
But it is my opinion from my researcch. Your mileage may vary.
Finally, in Lynn's post, she made a very interesting point.
Minocycline-induced lupus was first reported in the early 1990s, and more than 250 cases have now been reported to the World Health Organization.
That's a pretty good record for a drug that's been prescribed since the 1960's. That's less one a year!
To me, the most interesting point to MIL is they only started reporting it in the 1990's. The year after the MIRA study came out.
Hugs,
Pip
Pip, Mys sister is still on the meds ( Zoloft) because she was never able to get off. Now she will have to I guess.
You know, It looks to me that we can have a reaction to any medication at any time. And maybe it ends up looking like Lupus. But it's very clear that it is not lupis if the symptoms were brought on by some meds you are taking. Sudden alergic reaction. Sister has been on this drug for 11 years. Her body is probably toxic from them.
Jas, That does sound like a good idea. She will be seeing her doctor on the first (RA Doc)
So, it will be interesting to see what he suggests. I am fearful for her because I will hate to see her going through so much pain.
Pip, If these meds are working for you than you are so right in sticking with them. When my enbrel stops working that's what I will go on. These biologics always scared me. I now have nodules on my lungs that werent there when I started this medication. They are watching it but it still sucks.
I was always so healthy before I got RA.
Hugs back to you Pip.
Thinkthinn2008-06-20 10:51:21"serotonin syndrome" is different from the discontinuation syndrome which happens with some SSRI's. The serotonin syndrome is a serotonin overload - it can cause high fever, muscle rigidity, and death. It's a medical emergency. The discontinuation syndrome is a feeling of malaise (and sometimes electric-shock sensations in the head/neck/spine) which happens when an SSRI (particularly one with a short half-life) is stopped. It's not life-threatening, but it is damn annoying.
Jas, Have you ever tried to get off zoloft? How long have you been on?
[QUOTE=Thinkthinn]Jas, Have you ever tried to get off zoloft? How long have you been on?
[/QUOTE]
About a year this go'round. I took it several years ago and had no problems. I merely stopped taking it one day. I was only taking 50mg (same as now).
The discontinuation syndrome is worst in Paxil, I believe. It has a very short half-life - that's why they came out with Paxil-CR.
Jas, I hope I dont sound too dumb but, what does it mean when it has a short half life.
Thanks
That's the time it takes your body to break down/eliminate half of the original dose. Something with a half-life of a few hours has to be taken a few times per day; something with a longer half-life might just need to be taken once a day. The half-life and dosing schedule also help determine how long it takes you to reach the therapeutic dosage (how long it takes to "build up"). Something with a short half-life disappears pretty quickly, and your body may be left saying WTF when you suddenly stop taking it. Drugs with longer half-lives take longer to "fade away" from your body; withdrawal can be gentler with them. Prozac has a very long half-life; Paxil and Zoloft have short half-lives.
O.K so she's in the WTF category.
Thanks
[QUOTE=Thinkthinn]O.K so she's in the WTF category.
Thanks
[/QUOTE]
Yep. She might have better luck switching to Prozac for a month or so; it's easier to quit.
Pip-my derm did ANA and CCP blood tests and they were normal. Lupus, like RA, can take awhile to diagnose but so far I seem to be OK. Naturally by the time I got into see my Derm the rash was gone so she couldn't do a biopsy. I have rashes that come and go. In fact I am getting over another one-this one seemed localized so i didn't try to see a Dr. I'm starting to feel like a hypochondriac. Also, no one seems to give me any answers and the rashes go away on their own. I haven't stopped any meds. I am on Enbrel, synthroid and an occasional allergy pill/nosespray.Jasmine, you make some good points here plus....thinkthin....what about her trying a different antidepressant such as lexapro, something more specific? There are other options out there. I like her idea of switching to prozac to wean off.
Maybe later if she is still having some depression she can go on something else.
I hope not though. Maybe after she goes off she will discover she can do without.
Thanks everyone for sharing your ideas and thoughts on this subject. I am going to give her a call this evening pass those ideas to her.
hi thinkthinn-this is your niece J-was doing some research for mom and realized this was you-in response to your question on how the doctors know whether it is dil, according to a case study i read, the prescence of antibodies against the histone proteins means it is drug induced. her histone level was 127 whereas a normal range is 0-96.
Jas - so would it be Serotonin Syndrome with hallucinations, bells palsy, tics, etc. or would it be the other?
Hi Ocircles - but why antibodies? This is what confuses me.
Pip
Buckeye -
Thank you.
Pip
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