feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Okay, I have been having some odd feelings about medications lately.....premonition like. I hope that it is just my severe anxiety surfacing....
But, my fear is about developing Steven-Johnson Syndrome....that is a BIG fear as it is an often fatal outcome.
Has anyone had or known anyone with this reaction? As I have read, sometimes medication does not even appear to be involved in developing this.....so what is it really?
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Feelfit,
SJS is rare. From my research it seems to be more common in certain antibiotics, like Bactrim. I did a LOT of research on Bactrim after my sister got hives that lasted over a week and she was on all kinds of antihistimes. They were HUGE hives too, her back, legs, arms, lips, face, ect. It was scary. After that I swore I would never take Bactrim, read of too many deaths, lots of websites about how Bactrim should not be on the market.
With that being said...most likely it is anxiety. I have done the same thing, worried that I would get a severe allergic reaction. Not all SJS is fatal, catching it in the early stages is key from what I understand. It is real though and very scary, but at the same time, it is rare.
For me personally, if I got an kind of rash from an abx, I would go see a doctor to make sure it wasn't the beginning of SJS.
Do you have a rash, or are you just worried in general about it???
feelfit
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Member # 12770
posted
Ah Ocean,
Somehow I knew that you would have some info on this!
No, I don't have a rash, I think it is my swallowing and breathing that I worry about. I only had a slight rash one time and that was on IV Rocephin.
What I did was read about Steven-Johnson Syndrome becasue it just "popped" into my head. I should not have read about it. Now I have myself in a tizzy.
I think it is because I am to start treating for bartonella next week. That is new and so are the meds, rifampin and levaquin. I am afraid of levaquin.
And you know how bad my anxiety is, so now I'm really cookin!
Thanks for answering. Only someone who has this anxiety would understand.
Feelfit
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Ocean
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Member # 3496
posted
Hahaha...and why did you think I would have a reply??? Just because you know I have been freaked out beyond belief to take a medication? That I have read and obsessed about every possible side effect no matter how rare???
I'll own up to it...My mom is the same way. I'll blame it on her, lol!
SJS is more of a skin disorder from what I've gathered. You generally get a blistering of the skin, some people have had all the skin on their body fall off. Again..it's rare and more common with Bactrim.
I mean LOTS of people have reactions to Peanut butter and I can't even tell you the number of pounds I've eaten in my life!
I will tell you that I was on Cipro back in 2000 which is in the same family as Levaquin. My appendix ruptured and I got peritonitis, so I got some good IV abx and was on Cipro for 2-3 weeks.
I felt SO good mentally! I guess I didn't realize how depressed I'd been for a few years since getting Lyme, though I didn't know I had Lyme then.
I told an LLMD that I loved Cipro and he said if I wanted to go on it, he would prescribe. At that time I was wanting to try rife, so I said maybe later. But I'm thinking of calling him up and requesting it to do during rife (like rife one month and do a few weeks of abx, then rife another month, ect).
I mean I felt so good I was calling my mother and telling her that I felt incredible!! Then last fall...my reaction of feeling good made sense!
I haven't heard of Levaquin really causing SJS, just watch for any tendon pain. I didn't have any while I was on it (though it was only a few weeks).
I know how you feel though..any chance you could have someone muscle test you for allergies to it? I had 2 different doc's do that for me with the Doxy and Omnicef. Tested allergic for Omnicef, but not Doxy. Doxy was very very powerful for me.
posted
One of the posters here did get Steven-Johnson Syndrome. She was very sick and she recovered. I don't know if she recovered 100%. This was a few years ago.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
I took Bactrim for a week, stopped it about two weeks ago. My eyes were real red, more so than usual, I had joint pain, a sore throat, and little red blisters in my mouth. I also had SJS on the mind and stopped taking Bactrim.
Not sure it was SJS-related, but the sores in the mouth were enough to cause me concern.
I have now been feeling like crap for about a week. I think the Bactrim helped me in the beginning, but now I wonder if I had an allergic reaction and now made the Lyme bugs angry.
I was actually feeling fairly decent before taking the Bactrim and now I feel about as bad as I have since the beginning of this crud.
Anyone know how long Bactrim hangs out in your system before it's fully purged?
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Good thing you stopped Ott. ESP with the blisters and red eyes....those are things to look for.
Hope you feel better soon!
Posts: 3975 | From usa | Registered: Aug 2007
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I took bactrim for about 2 days a couple of months ago and got an itching skin rash so stopped it. For the next 2 days I had terrible burning of the skin, etc and I was petrified that I was going to develop SJS, luckily I didn't, but I was a mess from worrying about it.
This was a big reminder for me of how dangerous antibiotics can be and that we shouldn't be so blase about them.
I recently weighed up the possible side effects of levaquin and after my experience with Bactrim I decided that the possible side effects weren't worth it. I couldn't put myself through the worry again.
I am trying to get better and don't want to end up crippled so at this point in time thats not for me.
Kelly
-------------------- Sx Start Jan 08 (test neg, but herxing)Susp Lyme, Bart + Babs??
ABX Doxy 400mg + Amox 1g Jun - Sep 08 Rifampin 600mg + Biaxin 1000mg Tinidazole 1000mg/day - Sep 08 to June 08
Currently taking Salt/C 15g (himalayan salt)
85-90% better Posts: 231 | From Australia | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I am not too confident about taking levaquin either Kelly. Seems that other options that are less risky should be used first. If all else fails, THEN one might consider a flouraquin...
Just my thoughts.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I agree feelfit.... I know many who have been fine, but the ones who end up on crutches and having ongoing problems turn me off.
-------------------- Sx Start Jan 08 (test neg, but herxing)Susp Lyme, Bart + Babs??
ABX Doxy 400mg + Amox 1g Jun - Sep 08 Rifampin 600mg + Biaxin 1000mg Tinidazole 1000mg/day - Sep 08 to June 08
Currently taking Salt/C 15g (himalayan salt)
85-90% better Posts: 231 | From Australia | Registered: May 2008
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CD57
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Member # 11749
posted
I actually got SJS from Sulfa/Bactrim when I was in college. I didn't know what it was but on day 2 of it, my roommate saw my back and shoulders and told me to go the student health center. They told me it was SJS and to stop it.
The rash went away immediately and I am now fine. But will never touch Bactrim again!
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I actually got SJS from Sulfa/Bactrim when I was in college. I didn't know what it was but on day 2 of it, my roommate saw my back and shoulders and told me to go the student health center. They told me it was SJS and to stop it.
The rash went away immediately and I am now fine. But will never touch Bactrim again!
I think it is very, very rare, BTW.
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