LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » How common is Steven-Johnson Syndrome?

 - UBBFriend: Email this page to someone!    
Author Topic: How common is Steven-Johnson Syndrome?
feelfit
Frequent Contributor (1K+ posts)
Member # 12770

Icon 1 posted      Profile for feelfit     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Ocean
Frequent Contributor (1K+ posts)
Member # 3496

Icon 1 posted      Profile for Ocean     Send New Private Message       Edit/Delete Post   Reply With Quote 
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???

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1619 | From Ohio | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
feelfit
Frequent Contributor (1K+ posts)
Member # 12770

Icon 1 posted      Profile for feelfit     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 3975 | From usa | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Ocean
Frequent Contributor (1K+ posts)
Member # 3496

Icon 1 posted      Profile for Ocean     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Good luck to you. I think you will be just fine.

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1619 | From Ohio | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
pab
Frequent Contributor (1K+ posts)
Member # 904

Icon 1 posted      Profile for pab     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
ott70
LymeNet Contributor
Member # 18237

Icon 1 posted      Profile for ott70     Send New Private Message       Edit/Delete Post   Reply With Quote 
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?

Posts: 194 | From Colorado | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
feelfit
Frequent Contributor (1K+ posts)
Member # 12770

Icon 1 posted      Profile for feelfit     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
kellyb2411
LymeNet Contributor
Member # 15467

Icon 1 posted      Profile for kellyb2411     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi,

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  |  IP: Logged | Report this post to a Moderator
feelfit
Frequent Contributor (1K+ posts)
Member # 12770

Icon 1 posted      Profile for feelfit     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
kellyb2411
LymeNet Contributor
Member # 15467

Icon 1 posted      Profile for kellyb2411     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.