Going back on a med that caused an allergy?

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kirsten

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I'd really like to get an idea of whether any of you went back onto a medication that you had a Stephen Johnsons reaction to? Or a med that was suspected to have caused a Stephen Johnsons reaction.

I have two docs looking after my epilepsy: 1x psychiatrist, and 1x neurologist. The psychiatrist was, a year back, saying that we could rechallenge me on Lamictal if we weaned it on very slowly. (I had a Stephen Johnsons reaction on it about three years ago, and trouble is I was also on Topomax at the time so nobody knows which of the two caused the problem.) My neurologist says that rechallenging is far too dangerous and it isn't an option to try Lamictal or Topomax ever again, and that there was now a whole group of meds similar to them that I couldn't take either.

I so badly want to go back onto Lamictal because my seizure threshold is so terribly low. I barely care if I do get a reaction. I just would like to try it out.
 
I've retried meds that I've found I've been allergic to only to find again that I'm still allergic to them.
I've had every med in the Tegretol family except original tegretol I'm med resistant to.
 
Going back on a drug that has caused Stephen Johnson syndrome, even just to see if it was the actual drug that caused it, can be life threatening. Stephens Johnson syndrome can kill people quickly. My psych I have been using it for years as a mood stabilizer) warned me of side effects and that I needed to get to an emergency room ASAP to avoid those dangerous effects if they have started. When my neurologist upped the dosage of it by 200mgs daily he warned me too. I would rethink that idea. I know you are desperate right now but it isn't worth the chance! Take care of yourself. :)
 
My psychiatrist keeps on flipping back and forth between yes, we should rechallenge and no, it absolutely is not an option. Today she said it'd be a good idea. I guess I'll just have to see what the neuro says next week. The reason I'm willing to take the risk is because my risk has been very high for a long time anyway, with all the seizures, and since I don't have further medication options, it seems as though there is no choice but to go back to one of the rejected ones until next year.
 
I agree with Penny. Stephens Johnson Syndrome can be life threatening and why in the world would a well-informed dr. even consider putting you on a drug that they suspect may have caused it in the first place? Sure, the risks for seizures are high also. I suggest waiting to hear from your neuro since they are usually better informed on these meds.

Refresh my memory, has the neuro mentioned the VNS since you don't have any further options as far as meds?
 
Yes, Cint, we are definitely going to look at surgery options in January. I say 'surgery options' because now that there is a new procedure that is FDA approved and better indicated for me, it might be a case of choosing that above the VNS. But certainly one or the other. But I have to wait till January because I have to upgrade my medical aid to cover the surgery and I can only do that in December--my provider doesn't allow in-year upgrades. My psychiatrist is not actually handling my seizure meds anymore. My neuro is, and I know he's firmly against the idea of lamictin. I guess I've just been having a day where I've been feeling particularly helpless, so I was considering pressing my neuro about it again next week. The other option, which I really dislike even more than the Lamictin idea, is Tegretol, which gave me really bad hyponatremia with cerebral oedema. That can be fatal but it takes longer, so you can pick it up in time to treat it but getting over Stephen Johnsons was five times faster than the hyponatremia--that had me down for four months or so and my cognitive functioning never recovered.
 
Okay, let me rather get down to basics. that will work better. I am allergic to penicillin. Really, really allergic. Instant reaction, facial swelling, and all that. So I know for a fact that if I ever took it again, I would have exactly the same reaction. I know that will never change. Is Stephen Johnsons the same? Does it always exist with the medication that caused it or is there a chance you might not have it again with the med you took when you had it last?
 
I would suggest speaking with your pharmacist to get his/her input on SJ. Also asking if you are now more susceptible to it is an excellent question. I have found the pharmacist to be an excellent resource. Their specialty IS medication, and typically would be the first to receive information about medications, side effects, etc. etc. They are constantly getting alerts from drug companies, FDA, and other organizations about any issues good and bad. A family member is a pharmacist, so that's how their level of expertise and training. They are not used enough by people as a resource, as people seem to assume their doctor (regardless of the specialty) will always know more about meds and supplements, and this most often is not the case. Okay, I'm off my soapbox now lol.
 
Thanks Jen. Another excellent suggestion from you. In my country, which is not even a litigious one, pharmacists are refusing to be forthcoming about what they know but I did, after much running around, manage to find an oldie who is willing to share his knowledge so I'll make a stop there in the next few days.
 
Okay, let me rather get down to basics. that will work better. I am allergic to penicillin. Really, really allergic. Instant reaction, facial swelling, and all that. So I know for a fact that if I ever took it again, I would have exactly the same reaction. I know that will never change. Is Stephen Johnsons the same? Does it always exist with the medication that caused it or is there a chance you might not have it again with the med you took when you had it last?

Its the same. It will flare right up when taken again. Its a horrible raction to lamictal. If I could think of how to post links I would. Its just like taking penicillin and other things you are allergic to again. Its always there waiting to pop up again. I definitely would not try penicillin again after the reaction I had and they say it will be worse next time maybe lethal. In your case with SJ I wouldn't take the chance either! :hugs:
 
I had such a no-brain day today that I went right past the pharmacist and forgot to go in and talk to him. Duh. But if SJS is always there, it's always there, so let me go back to treading water one day at a time.

P.S. links kinda post themselves automatically. Just copy control C the link in your search section (where it says www.whateverthesiteis.com and paste control V into your post. It'll turn blue by itself.
 
This is probably a stupid question, but were they sure it was SJS rather than a hypersensitivity reaction? Is SJS something they do actual tests for? If so I'm sorry you had that reaction. I had a reaction to Lamictal last Friday myself and thought I was off it too, but it was hypersensitivity (Rash and flu-like symptoms) and I'm still on it. I know how you feel, I practically begged to stay on it at a lower dose (and that is what we did and I'm fine on it now). SJS does seem to be something not to mess with, but I have read studies that rechallenges have been successful when done at SUPER slow rates--and I read so low it was like 5 mg a week, and slowly adding to 10 mgs a week, something like a 6 month titration. I think it was a pubmed article, can't recall.
 
Not a stupid question at all, Lindsay. I was on the Lamictin in 2009, so I don't remember which tests my doc did to diagnose SJS. She certainly didn't do a skin biopsy. I just went online to have a look at the diagnostic criteria and I see that doctors sometimes do a biopsy, so I'll also ask my neurologist what he thinks about that. My reaction lasted for a couple of months and it was very severe. At the time, though, I still had plenty of other medications available to try. Now I don't.
 
I can tell you my reaction was a rash everywhere, and a fever, chills, cough, body aches and muscle weakness. They diagnosed a hypersensitivity reaction, and yours sounds like it was different. I was raised up a week too soon, from 200 to 300 mgs (I didn't have any 200 on hand but did have 300, and the nurse said to go ahead and take 300, $*!$* nurse). We dropped me back down to 200 and I'm fine on that. If i had sores in my mouth or swollen lips, swollen face or closing throat or any of those bad markers I would have gone off it too.
 
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