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Posted 3/18/2018 5:19 PM (GMT 0)
I am on Bactrim...(with Ceftin and Mepron) and a couple days ago I got a 'lesion' just below my left clavicle. It's roundish and red, with some skin shedding.

Yup..I'm freaking about Stevens Johnson syndrome.

I also found a lesion on my left leg...but it's not a round shape....so probably not related.


I am calling the Nurse at the J Clinic to find out what I can take instead.

I've already seen all the SJS photos...so not sure I can continue to take it now...no matter what the nurse says...as I'm thoroughly freaked out.


Apparently there isn't a test they can do to confirm it.......
Posted 3/18/2018 5:22 PM (GMT 0)
Apparently my second antibiotic paired with the Bactrim can also cause SJS - Ceftin...saw it on one of the lists...when I was frantically googling. shocked
Posted 3/18/2018 6:05 PM (GMT 0)
I'm sorry girlie and thanks for the reply on my other Bactrim thread.

I told my pharmacist I was nervous to take and she said so many take it with very little issues. The pics are scary but I think it is rare. That being said I am not allergic to anything, and If I were you and saw something I would stop just to be sure. I was also told by a GI nurse quite a few antibiotics can cause this so its like, what do you do.

Were darned if we do and darned if we dont. (thats not being positive. sorry smile
Posted 3/18/2018 6:16 PM (GMT 0)
It seems to be more common with Bactrim tho:

sjsupport.org/?page_id=688%20Source:%20Stevens-Johnson%20Foundation
Posted 3/18/2018 6:36 PM (GMT 0)
Well I'm just glad Cocaine and Ginseng dont have asterisks.
That would be the end of my Saturday nights! smile smile smile

JK

(we need the humor)
Posted 3/18/2018 6:46 PM (GMT 0)

Rinzler said...
Well I'm just glad Cocaine and Ginseng dont have asterisks.
That would be the end of my Saturday nights! smile smile smile

JK

(we need the humor)


Lol. tongue
Posted 3/18/2018 9:37 PM (GMT 0)
bump
Posted 3/19/2018 1:12 AM (GMT 0)
i've been taking bactrim since mid-2016 and never had a problem with it. i'm not worried at all at this point about SJS as it so very rare.

when you started taking bactrim did you come down with flu like symptoms? from my understanding that's how SJS starts.

personally i think you're being a bit paranoid.
Posted 3/19/2018 1:52 AM (GMT 0)

Rikky1 said...
i've been taking bactrim since mid-2016 and never had a problem with it. i'm not worried at all at this point about SJS as it so very rare.

when you started taking bactrim did you come down with flu like symptoms? from my understanding that's how SJS starts.

personally i think you're being a bit paranoid.


True, it is rare. No, I didn't have any flu-like symptoms.
What I read is it 'often starts with flu-like symptoms'.

Paranoid...or cautious? confused

I wouldn't have thought anything if I didn't have this strange lesion...and it's several days now...not going away.
Posted 3/19/2018 8:28 AM (GMT 0)
Girlie only 20 pills got me ...permanent damage ! ...but if your feeling better? Blocking paba and folate in anemic people is not good medicine imo
Posted 3/19/2018 1:57 PM (GMT 0)
Girlie,

My mother was given bactrim last year for a UTI. During the very end of her treatment, she started itching. The itching grew worse and became a full blown reaction. It was horrible. She literally went out of her mind from both the reaction and the drugs prescribed to treat it. She did not get SJS but I was very concerned that she might as severe as her reaction was. The reaction to the drug is not a true allergic reaction, so antihistamines like Benadryl have little effect. They prescribed prednisone and another drug, which I don't know the name of, that the pharmacist gave her a strong warning about because of her glaucoma. The whole thing was so bad that she has very little memory of what happened.

My point is you don't have to get SJS to have a horrific reaction to sulfa drugs.
Posted 3/19/2018 2:44 PM (GMT 0)
I would hope they could switch you to something else - just to be safe. If it continues maybe switch out ceftin.
Posted 3/19/2018 3:01 PM (GMT 0)
Ive decided not to take my morning meds - don't want to take the Mepron without the abx.


- the lesion is looking a bit better...so will probably resume treatment this evening...without the Bactrim.
Posted 3/19/2018 3:13 PM (GMT 0)
Girlie,

Do you think this lesion could have anything to do with bartonella?
Posted 3/19/2018 4:34 PM (GMT 0)
Girlie,
I was on same RX, and had what looked like a bad reaction on both forearms. Talked to my doc (doc said It's hitting it in your skin, so I decided to push-on and skin did clear up, but did last +/- 2 months, I went on to have great improvement with this combo. Doc said had seen this before.
Posted 3/19/2018 6:14 PM (GMT 0)

WalkingbyFaith said...
Girlie,

Do you think this lesion could have anything to do with bartonella?

No I don’t think so - haven’t had this type of lesion before - and I’ve treated Bart with Rifampin for several months
I mean I guess it’s possible but it’s a strange lesion with the pieces of skin around it.

With SJ syndrome I’ve read (and seen) that the skin peels off so that’s why I thought of it.

I’ve had several different marks/rashes over the past few years from the infections/treatments but this is not like any of them.
Posted 3/19/2018 7:14 PM (GMT 0)

Kirky98 said...
Girlie,
I was on same RX, and had what looked like a bad reaction on both forearms. Talked to my doc (doc said It's hitting it in your skin, so I decided to push-on and skin did clear up, but did last +/- 2 months, I went on to have great improvement with this combo. Doc said had seen this before.

But did you have a round lesion - with some skin shedding around the outer edge?

I've had rashes...that don't resemble this at all...but this one is different.
Posted 3/19/2018 7:23 PM (GMT 0)
Wikipedia's list does NOT have Ceftin...so that may not be true - here's their list:

Name Other names
Acetaminophen[ Paracetamol, Tylenol
Allopurinol
Amoxicillin
Ampicillin
Azithromycin Zithromax
Barbiturates[
Carbamazepine
Ciprofloxacin/levofloxacin/Gemifloxacin[citation needed]
Clozapine Clozaril
Diclofenac
Ethosuximide[citation needed]
Glutathione
Ibuprofen
Isotretinoin Accutane
Lamotrigine Lamictal
Modafinil
Nevirapine[citation needed]
Norfloxacin
Oseltamivir[citation needed]
Penicillins
Phenytoin
Sitagliptin[citation needed]
Sulfonamides
Tetracycline



Interesting - Amoxicillin, Acetaminophen , Ibuprofen are on the list...

Here's another list (SJS Foundation) - Ceftin not listed here either.
Antibiotics

Sulfa based drugs *

Bactrim *

Septra *

Penicillin

Amoxicillin

Azithromycin

Erythromycin

Ciprofloxin

Anticonvulsants

Lamotrigine *

Tegretol

Dilantin

Phenobarbital

Valproic Acid

Phenytoin

Carbamazepine

Barbituates

Cocaine

Ginseng

NSAIDS

Ibuprofen – Motrin

Naproxen

Allopurinol *

Almost any medication can cause Stevens-Johnson Syndrome
Posted 3/19/2018 10:00 PM (GMT 0)

Girlie said...

Kirky98 said...
Girlie,
I was on same RX, and had what looked like a bad reaction on both forearms. Talked to my doc (doc said It's hitting it in your skin, so I decided to push-on and skin did clear up, but did last +/- 2 months, I went on to have great improvement with this combo. Doc said had seen this before.

But did you have a round lesion - with some skin shedding around the outer edge?

I've had rashes...that don't resemble this at all...but this one is different.

I've also had various rashes from lyme and co, but this particular one did not look like a typical rash that i had ever in the past. Firstly it lasted for a long time, like I said perhaps 2 months or so. Secondly it looked more like it had damaged my skin, it was more sore like than blotches or scratches, I thought for sure I was going to have scars, but luckily that did not happen, thirdly it looked like roundish sores, some had white dots in centre rather than one large red area. fourth the skin did flake around the edges of the sores, lastly it was located on various parts of my body; arms, legs, back, face, neck etc. but mostly legs, feet, arms and the temple area of head.

At the end of the day for me it was worth it to push on, made great improvements. I would say don't stop because SJ came up on a google search.

Post Edited (Kirky98) : 3/19/2018 4:46:21 PM (GMT-6)

Posted 3/19/2018 11:03 PM (GMT 0)
Kirky - before I even was prescribed the Bactrim, I was aware of the StevensJohnson Syndrome.

But, just because it comes up on a google search..doesn't mean it should be ignored, anyway.

I've now got a bit of a sore throat. great! I saw that listed on one of the symptom lists.


I called the J clinic and they actually got back to me...I think because it can be a serious issue.
They asked if I could send photos...which I just did.
Posted 3/19/2018 11:22 PM (GMT 0)
Hi Girlie,

Just want to say I hope its not any thing worse than what you already have been going through . We know Lyme and co is bad enough.

Just thinking of you and sending prayers and positive thoughts your way. Stay strong and lets hope this is just a bump in the road to your full recovery and its over soon.

I will add that early last year when I added in Bactrim to the malarone and azith, that is what brought out strong Bartonella symptoms and the pimples/sores on my scalp.

Maybe the Bactrim is just good at helping to peel away the other layers of different infections for some of us and letting us know what else we have to attack and treat.

Take care and remember you are in very good hands at Dr J's.
Posted 3/19/2018 11:59 PM (GMT 0)

goshawk said...


Maybe the Bactrim is just good at helping to peel away the other layers of different infections for some of us and letting us know what else we have to attack and treat..

Lol - but it’s literally “peeling away the layers”.

Thanks goshawk - I feel better that someone at the clinic got back to me - and asked for a photo.

My husband told me not to take anymore for now - and he’s not usually that cautious - so I’m going to take my other meds this evening but not the Bactrim
Posted 3/20/2018 12:39 AM (GMT 0)
girlie you must be someone that buys insurance for everything including a piano spontaneously falling out of the sky and hitting you because you know, you need to be cautious ;o) just kidding.

so when i first started trying to take bactrim end 2015 i got a pretty quick reaction my eyes dried out and i kept rubbing them and i looked like i was 110 years old! seriously it was awful so i called my LLMD and he told me to stop.

i determined at the time i was having some allergic type reaction to bactrim. well i decided to try it again when i switched to Dr. J in DC and i was fine. i was like WTH?

what i think happens is when we start new meds/protocol we can get all sorts of weird reactions. these could be mistaken for allergic type reactions but are not. this is different for everyone but you can see with me the eye thing caused me to believe i was allergic when in fact it was a reaction of the bugs getting their butts kicked and since i never had that happen to me before i blamed the abx.
Posted 3/20/2018 1:38 AM (GMT 0)
I'm hoping for you this turns out to be nothing and you can carry on your treatments.
Posted 3/20/2018 1:59 AM (GMT 0)

Rikky1 said...
girlie you must be someone that buys insurance for everything including a piano spontaneously falling out of the sky and hitting you because you know, you need to be cautious ;o) just kidding.

so when i first started trying to take bactrim end 2015 i got a pretty quick reaction my eyes dried out and i kept rubbing them and i looked like i was 110 years old! seriously it was awful so i called my LLMD and he told me to stop.

i determined at the time i was having some allergic type reaction to bactrim. well i decided to try it again when i switched to Dr. J in DC and i was fine. i was like WTH?

what i think happens is when we start new meds/protocol we can get all sorts of weird reactions. these could be mistaken for allergic type reactions but are not. this is different for everyone but you can see with me the eye thing caused me to believe i was allergic when in fact it was a reaction of the bugs getting their butts kicked and since i never had that happen to me before i blamed the abx.

Is dry eyes a symptom of SJS?

I do understand that we get some weird reactions...and I've had plenty of rashes...believe me. Little dots on the top of my right foot......a big red patch encompassing my whole mid/lower back area, I even had one to show the NP at my Initial Consult at the J Clinic in February. It was different again.

None of those have concerned me...but this is strange. It's not really a rash...it's like a blister with skin peeling...and then theres another one on my shin...although it's not round...

So, I will just see what 'they' say once 'they' see the photos of it.
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