peglem Posted May 24, 2011 Report Share Posted May 24, 2011 My daughter had been on lamictal for @ 4 years. I finally got her off of it in February of this year. A few weeks after she was completely off- she got a lupus like thing. That's when I found out that lamictal can cause drug induced lupus- so that is another possible side effect. Still don't know if it was the lamictal that caused her problem, since she had been off a while before the lupus symptoms started, and she tested positive for strep. But her anti-histone antibodies were elevated and that is a marker for drug induced lupus. We had a few more minor lupus like episodes previous to going off of it- but nothing as bad as what we saw after. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 24, 2011 Report Share Posted May 24, 2011 My daughter had been on lamictal for @ 4 years. I finally got her off of it in February of this year. A few weeks after she was completely off- she got a lupus like thing. That's when I found out that lamictal can cause drug induced lupus- so that is another possible side effect. Still don't know if it was the lamictal that caused her problem, since she had been off a while before the lupus symptoms started, and she tested positive for strep. But her anti-histone antibodies were elevated and that is a marker for drug induced lupus. We had a few more minor lupus like episodes previous to going off of it- but nothing as bad as what we saw after. Peg -- So sorry about that reaction and, frankly, a little alarmed by it. What is the prognosis? Does it/did it clear over time? Was there a treatment for the reaction, in particular? I can only find reference to a "lupus-like reaction" in the literature, and this is noted as being a "post marketing experience," i.e. independently and voluntarily reported, without any studies duplicating it. So just wondering how you're dealing with it? Link to comment Share on other sites More sharing options...
peglem Posted May 24, 2011 Report Share Posted May 24, 2011 My daughter had been on lamictal for @ 4 years. I finally got her off of it in February of this year. A few weeks after she was completely off- she got a lupus like thing. That's when I found out that lamictal can cause drug induced lupus- so that is another possible side effect. Still don't know if it was the lamictal that caused her problem, since she had been off a while before the lupus symptoms started, and she tested positive for strep. But her anti-histone antibodies were elevated and that is a marker for drug induced lupus. We had a few more minor lupus like episodes previous to going off of it- but nothing as bad as what we saw after. Peg -- So sorry about that reaction and, frankly, a little alarmed by it. What is the prognosis? Does it/did it clear over time? Was there a treatment for the reaction, in particular? I can only find reference to a "lupus-like reaction" in the literature, and this is noted as being a "post marketing experience," i.e. independently and voluntarily reported, without any studies duplicating it. So just wondering how you're dealing with it? She's mostly recovered from it. Once she tested positive for strep in the hospital, they put her on clindamycin for 2 weeks and rx stength naproxen. But following that she tested positive on rapid/neg on culture twice- so I really don't know if she had strep or not and neither the rheumy or the psych thought it could be caused by the lamictal that long after being off of it. So we're left wondering...could have been a combo of the lamictal and other things, I guess. Lamictal does have a reputation for interacting with other drugs. Anyway, I'm glad she's off of it. I wonder if the lamictal itself was masking the lupus symptoms and then when we went off it- the anti-histone antibodies persisted past the lamictal clearing her system, as antibodies have a longer half life than the medication. If you see things while your child is on a lower dose- its a lot easier to get them off of it. Allie was on 200mg/day when I started to wean and I took it very slowly- In hindsight, I wonder if some of the smaller lupus episodes we saw were the result of reductions- I didn't correlate because she's got so much going on all the time and its hard to tell (especially since her communication is so poor) what is caused by PANDAS/female cycle/bad day... At any rate, drug induced lupus does go away when the drug is withdrawn. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 24, 2011 Report Share Posted May 24, 2011 She's mostly recovered from it. Once she tested positive for strep in the hospital, they put her on clindamycin for 2 weeks and rx stength naproxen. But following that she tested positive on rapid/neg on culture twice- so I really don't know if she had strep or not and neither the rheumy or the psych thought it could be caused by the lamictal that long after being off of it. So we're left wondering...could have been a combo of the lamictal and other things, I guess. Lamictal does have a reputation for interacting with other drugs. Anyway, I'm glad she's off of it. I wonder if the lamictal itself was masking the lupus symptoms and then when we went off it- the anti-histone antibodies persisted past the lamictal clearing her system, as antibodies have a longer half life than the medication. If you see things while your child is on a lower dose- its a lot easier to get them off of it. Allie was on 200mg/day when I started to wean and I took it very slowly- In hindsight, I wonder if some of the smaller lupus episodes we saw were the result of reductions- I didn't correlate because she's got so much going on all the time and its hard to tell (especially since her communication is so poor) what is caused by PANDAS/female cycle/bad day... At any rate, drug induced lupus does go away when the drug is withdrawn. Well, I'm very glad that she's recovered from it, and I hope the other issues resolve as best they can, as well. A part of me knows full well that, in using some of the medications we're driven to try, we're potentially "dancing with the devil" as so many of the side effects and long-term ramifications aren't well-identified or documented for years. In the end, I guess the best we can do is weigh the pros and cons and make the best, most informed decisions possible. Thanks for sharing your experiences; it gives one more food for thought. Link to comment Share on other sites More sharing options...
EAMom Posted May 24, 2011 Author Report Share Posted May 24, 2011 (edited) I'm finding the huperzine A to be kind of interesting. It looks like it's also supposed to be good for seizures...and might help with memory (hmmm...maybe I should try it for myself!!). Here are some reviews from Iherb http://www.iherb.com/Source-Naturals-Huperzine-A-200-mcg-120-Tablets/6335?at=0 re: memory: http://www.wellbella.com/article.php?ArticleID=5588 re: seizures/huperzine A. Here's a link (see pages 6-8) from 2007 http://www.hms.harvard.edu/hmni/On_The_Brain/Volume13/OTB_Winter_07.pdf and a case report where huperzine was used to treat seizures in a bernese mountain dog: http://www.ncbi.nlm.nih.gov/pubmed/19616481 Ohh...and a few reviews have mentioned that huperzine helped with their Lyme dz (brain fog etc). Edited May 24, 2011 by EAMom Link to comment Share on other sites More sharing options...
peglem Posted May 24, 2011 Report Share Posted May 24, 2011 I'm finding the huperzine A to be kind of interesting. It looks like it's also supposed to be good for seizures...and might help with memory (hmmm...maybe I should try it for myself!!). Here are some reviews from Iherb http://www.iherb.com/Source-Naturals-Huperzine-A-200-mcg-120-Tablets/6335?at=0 re: memory: http://www.wellbella.com/article.php?ArticleID=5588 re: seizures/huperzine A. Here's a link (see pages 6-8) from 2007 http://www.hms.harvard.edu/hmni/On_The_Brain/Volume13/OTB_Winter_07.pdf and a case report where huperzine was used to treat seizures in a bernese mountain dog: http://www.ncbi.nlm.nih.gov/pubmed/19616481 Ohh...and a few reviews have mentioned that huperzine helped with their Lyme dz (brain fog etc). If you try this with your daughter, please let us know what happens! I did try galantamine for Allie- years ago, when she was 7. It gave her headaches and made her ragey! What has worked better for her is CLO and bethanechol (which mimics acetylcholine in the body). Friday was Allie's last day of the regular school year. I've taken her off of everything except ibuprofen and her nighttime melatonin/valerian. Gulp-no zith! I want to see if her regular flora can stabilize. I guess if she gets sick, we'll at least be able to figure out what the heck is making her sick! Link to comment Share on other sites More sharing options...
EAMom Posted May 24, 2011 Author Report Share Posted May 24, 2011 hi peg, I just ordered some. I'm going to try on myself first. Dh tends to be very conservative about trying new things...so it's possible he'll veto the idea for dd. Link to comment Share on other sites More sharing options...
EAMom Posted May 24, 2011 Author Report Share Posted May 24, 2011 btw...we ended up stopping ibprofen (we were giving 1x daily long term) b/c dd's iron levels were so low. Link to comment Share on other sites More sharing options...
peglem Posted May 24, 2011 Report Share Posted May 24, 2011 Ibuprofen reduces iron? Crap! Allie was a bit low on her last blood draw. Link to comment Share on other sites More sharing options...
EAMom Posted May 24, 2011 Author Report Share Posted May 24, 2011 (edited) Ibuprofen reduces iron? Crap! Allie was a bit low on her last blood draw. well, I don't think it reduces iron per se...but it could cause bleeding (eg.gut) which could contribute to anemia...so we stopped just as a precaution. It probably wasn't necessary to cut out the ibuprofen. but it was an easy thing for us to give up. We're supplementing with iron now b/c dd's was really really low (she hadn't been taking a multi vit). btw...iron def. is super common Edited May 24, 2011 by EAMom Link to comment Share on other sites More sharing options...
tpotter Posted May 24, 2011 Report Share Posted May 24, 2011 Our DS has been on Lamictal for about 4 years for seizures (that no one's really sure are true seizures, but maybe related to PANDAS.) Anyway, we truly realized that it was taking the "edge" off the rages, and some of the other issues, when we took him off the lamictal in the hospital while having a 7 day eeg. He escalated again, and when we slowly tapered him up again, it was obvious what the lamictal was doing...taking the "edge" off. I just assumed that it was the fact that it's a mood stabilizer and an anticonvulscent. Link to comment Share on other sites More sharing options...
smartyjones Posted May 24, 2011 Report Share Posted May 24, 2011 for seizures (that no one's really sure are true seizures, but maybe related to PANDAS.) tpotter -- i know you see/have seen pretty much all the big names - one of whom i believe also has a speciatly in this -- but, have you considered migraine headaches? Link to comment Share on other sites More sharing options...
smartyjones Posted May 24, 2011 Report Share Posted May 24, 2011 (edited) e Edited May 24, 2011 by smartyjones Link to comment Share on other sites More sharing options...
melanie Posted May 24, 2011 Report Share Posted May 24, 2011 So Namenda and Rizole are simular ? Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 24, 2011 Report Share Posted May 24, 2011 So Namenda and Rizole are simular ? They appear to have similar attributes and result in some similar behavioral impacts because they both help modulate glutamate in the brain. As best as I can make out, though, they have different action profiles. Namenda (or memantine) actually blocks glutamate receptors so, theoretically, however much glutamate is floating around and available, the receptors remain oblivious to it in part, and that results in fewer "excitatory behaviors" that occur when more glutamate is being taken up by the receptors. Meanwhile, riluzole seems to have a less direct activation as its primary methodology is to block sodium channels which in turn inhibits the release of calcium ions; the calcium ions are what appear to stimulate glutamate receptors, making them more sensitive to the glutamate available in the brain. A key difference seems to be that namenda has actually been found to bind to NMDA glutamate receptors while, thus far, there's no evidence that riluzole actually binds to any receptors. I guess in the end, as lamictal is also thought to block sodium channels, its form of activation is more similar to riluzole than to namenda. Link to comment Share on other sites More sharing options...
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