TOPIC:

Hi everyone! So, lately I’ve been doing ok being off of any treatments or medications (levels in the 200Ks last 4 weeks). However, I am currently sick with Strep Throat and my GP has prescribed Amoxicillin in conjunction with my hemo. I am really worried about how this will affect my platelets, especially since I’ve been doing so well lately Does anyone have any anecdotes on Amoxicillin use and platelet levels? I’m also worried about having a reaction as the last time I took it, it made me burn and itch all over my body to the point where I couldn’t sleep at night. I told both hemo and GP this, but they insist any antibiotic would’ve done that to me (because of my undiagnosed ITP at that time, from what I understood?). I was instructed to go ahead and complete 7 days of 2x a day Amoxicillin caplets. Any replies greatly appreciated, thanks in advance! Hope everyone’s doing alright

For me, my count is far more likely to be affected by the infection than the antibiotics. If you need the antibiotics then you have to take them no matter what the effect on your platelets, but most people do just fine.

Hey Claudia.
Being of treatment for 4 consecutive weeks? (Knock on the woods) WOOW !! That's the best news one can hear in PDSA
As far as I know, cold itself can bring platelets down, I don't know about antibiotics. But It's quite RARE that you have a full relapse due to a strep throat. Go ahead and enjoy being in remission. You don't know how much we'd like to experience what you are feeling now!
P.S: By remission, I meant living a drug-free life. It may take a couple more month that you are officially in REMISSION B-)

Lman thank you so much for your response and your kind words! You’ve put me at ease, which I know is also important as I don’t want to stress out on top of having Strep and taking antibiotics :/ I was reluctant to go for fear of antibiotics causing a flare up, but as JJ said, I have to take them to kill this particularly nasty Strep. Thanks again, how have things been for you?

I have switched to monthly tests, But I'm hovering around 110k. To be honest, I have been a little disappointed after my last incident:(
you know, In the next two years I'll finish my BSc, I'd wanted to apply for a better university oversees, but I see that probably no insurance oversees won't accept to pay $100k a year for free.
All I know is thatI'm still too young to succumb And I must kick the hell out of this tricky disease (But I do not know any straight non-invasive way )

By the way, Claudia, after all these ups and downs and considering the fact that you don't know what happens with your itp later, Would you tell me How does it feel? Living a day (a week) without any pill! any drug! any injection! How do you see the world outside?

Lman, those are awesome levels, hooray!! sorry to hear your plans have been thwarted by this unpredictable disease! I would say having been off of all meds for over a month and keeping normal counts is amazing...it’s like I have my old life again! But at the same time, I also know there are no promises with ITP and it’s hard not to freak out about relapsing at some point down the road All I can do is try my best and keep vigilant about any symptoms that pop up. I’m still on weekly blood draws, but I’m hoping my hematologist will switch me to once a month soon!

There's still a couple of more years to come
Even if I didn't recover for my masters, I'd apply for PhD then

Carcamoc
I have taken antibiotics for bacterial infections 2 or 3 times since I was diagnosed 5 years ago. No effect on my count.
The only 2 things that really seem to cause my count to plummet are viral infections and high stress levels.

Mrsb04 that’s a relief to hear, thank you

Lman I wish you luck in your future endeavors, & I hope your levels continue to hold!!

I think I would jump on probiotics for those 7 days and for maybe a month afterwards.

Perhaps there is something interesting to know about by looking through these posts on 'Amox':
pdsa.org/discussion-group/search.html?query=amox&searchdate=all&order=inc&childforums=1&limit=30

Hal: I agree, I actually had already thought about that & I’ll take a look through those posts, thanks! Hope you’re well!!

Probiotics are good even if you are not taking an antibiotic

So far I've had no problem with counts when on an antibiotic - but no way can I take amoxicillin or any penicillin again
thanks to serum sickness to amoxicillin.

Uhhg. Those posts. Doesn't look good for Amoxicillin.

Read the first two pages or so. Read that Sandi believes it was Amoxicillin that triggered her ITP. Don't remember her mentioning that before. Then found this on Wiki.
"A nonallergic amoxicillin rash may also be an indicator of infectious mononucleosis. Some studies indicate about 80-90% of patients with acute Epstein Barr virus infection treated with amoxicillin or ampicillin develop such a rash."
en.wikipedia.org/wiki/Amoxicillin#Nonallergic_rash

So there is some sort of link between Amoxicillin exasperating EBV and then triggering ITP. This needs further investigation.

Hope you get through it ok. Odds are probably very well on your side.

Hal Sandi has Lupus and last I heard [unless I'm wrong] her ITP is due to or 2nd to lupus.
What happens to one doesn't necessarily happen to the other!
Did that wikipedia article say there is a link between amoxicillin triggering ITP? I did not see any reference to ITP in that article, did you? The reference used for that 80-90% quote is from 1977, rather old.

This is part of what Sandi wrote in August 2010 - notice the word "suspected" and the rest of it, some wise thoughts:
"I have had two suspected platelet drops after taking Amoxicillin, but I have not discouraged any one from using it. Two reasons: 1) it may not affect them as it did me, and 2) my experience could have been a coincidence and there is no way to prove that it caused counts to drop. I would not blindly state that a certain drug could cause harm to everyone because it may have happened to me. "

Hal I saw Sandi’s posts as well and it did make me worry at first, but this time around on Amoxicillin has been a lot smoother for me. Hasn’t caused me any itching or rashes/hives at all. I also realize everyone is different and until I go through something myself, I won’t really know how I’ll respond to it...so here’s to finding out if my system can take Strep and a round of Amox lol!!

I hope all goes well and there is no reason for it not to do so!
Strep infections can be dangerous, good thing yours was caught and is being treated!

MelA thank you so much, I appreciate it

MelA, take a look at this post:
pdsa.org/discussion-group/6-general-itp-discussion/26694-celexa-caused-my-itp.html#27395
Bear in mind. Originally she had only ITP and not Lupus. I'm pretty sure that is what she was referring to - how she 'acquired' ITP.

The chain of events I mentioned/theorized was Amoxicillin -> EBV -> ITP. So absolutely. The connection between the three was strictly by me and not Wiki. Wiki made the connection between Amoxicillin and EBV. Sandi's comment made the connection between Amoxicillin and ITP.

Thought I would update here after my latest follow up with hemo. This week platelets held steady in the mid 200Ks even after the Strep & Amoxicillin. I’m going to stay vigilant in case of any late effects, but for now I was finally switched to once a month labs and a follow up in 3 months. I’m very excited to finally slow down after what feels like forever of constant labs, doctor’s visits, and hospital stays. Hemo seemed comfortable with crediting a late response to Rituxan for this remission and hopes I can get years out of it as others have. Thanks for reading, I hope you all have been doing alright

Great news Carcamoc

That's good to hear Carcamoc!

Carcamoc10 wrote:

Hal I saw Sandi’s posts as well and it did make me worry at first, but this time around on Amoxicillin has been a lot smoother for me. Hasn’t caused me any itching or rashes/hives at all. I also realize everyone is different and until I go through something myself, I won’t really know how I’ll respond to it...so here’s to finding out if my system can take Strep and a round of Amox lol!!

Don't want to let this one go by. Some questions Carcamoc. With a mid 200 count, we must learn from you

Is it correct to say that you've had rashes/hives from Amox or other antibiotics in the past? But not this time?
In Sandi's posts she commented that counts would fall with Amox. Then, sometime later, Amox no longer crashed them. I am wondering if Sandi took Rituxan between those events. That is, perhaps Rituxan cleared out enough EBV so that Amox no longer caused a reaction.

So I wonder the same thing with you. Do you no longer have problems with Amox now that you've taken Rituxan?
Have I got the situation correct?

Hal, amox has never given me a reaction before last year. I had only ever had a bad allergic reaction to an antibiotic they gave me after labor and delivery some 8 years ago. I never found out which one it was, unfortunately. But anyways, then last year (either early or mid 2018) I took myself to the doctor because I felt god awful and feared I either had Strep or a sinus infection. Strep swab came back negative, but urgent care doc still prescribed a round of Amox just in case :/ I took it but noticed after a few days that I was itching all over my body constantly. At night, my skin even burned and I had a bunch of little rashes on my stomach. I decided, probably not smartly, to stop taking it since it was prescribed just in case anyways. I figured I had developed a reaction and have kept that in mind since. I informed my GP about that, but she rightly still prescribed it for a reason I don’t quite understand. She decided along with my hemo that I’m not truly allergic to it and to go ahead and take it since any antibiotic could potentially cause a flare up of the ITP. The Rituxan was done earlier this March, if you recall, by the way. Let me know if you have any other questions

LOL, not truly allergic to amoxicillin because you didn't go into anaphylactic shock, so ok to take. Oh my.

But no reaction to Amox this time, right? I bet there is more to know about antibiotic reactions and EBV motivated ITP. Maybe the skin reaction is an indicator as to whether one has become candidate for ITP relapse.

Notice this study investigating Spironolactone affects on EBV. They used the antibiotic Doxycycline to stimulate EBV replication.
"Spironolactone blocks Epstein–Barr virus production by inhibiting EBV SM protein function"
www.ncbi.nlm.nih.gov/pmc/articles/PMC4822607/