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Hi, and wow, the last week was horrid!

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14 years 9 months ago #10557 by Dotty
I had a possible staph infection (swelling something on my jaw bone) and got a scrip for Bactrim... on day 10 (the lst day of the scrip) at 2 in the afternoon I noticed some red spots on my legs. Had night school so brushed it off and went to class. During class my mouth felt funny.

Got home, went to change into jammies and my legs were petechiae all over, and I had black spots on my lips. I thought, ok, not good, Bactrim allergy? Called my doc and the on-call told me to go to the ER, so they could give me a steroid shot, and come in to the office next morning.

No such thing. By the time I got to the hospital my mouth was filling with blood blisters, with PLT counts too low for their machine to measure, I was admitted. (See all that below) I had never been admitted to a hospital before in my life, I'm nearly 40, been quite healthy other than a bout with lyme/babesiosis 4 years ago. Over a few hours my mouth was so swollen with blood blisters I could neither open or close it all the way, and was in a lot of pain. The BP cuff left my arm completely bruised, complete with red vertical lines from where the cuff puts on pressure.

PLT infusion brought me all the way up to 12k, and the hemo said, all my other blood-work being just fine, auto-immune ITP. Apparently, if it was just from the Bactrim they wouldn't have been so low, and the transfusion should have brought me back up to 40-50k.

I'm still bruised all over (especially bad where they drew blood over and over) and miserable on prednisone and have a follow-up on Wed... hoping the IVIG continues to work and I can try a taper off the pred, without ending up back in the hospital over Christmas.

I've spent two days reading here, figured I'd sign up and say "hi".

P.S. I chose "Dotty" as my name because my legs still are covered in red petechial dots!

Dotty
12/13/10 counts too low for their machine to measure.
PLT transfusion brought me up to 12k
2x IVIG in-patient with Pred
1x IVIG out-patient at 60 mg pred/day
12/16 76k
12/22 320k and dropping Pred to 40 mg/d. Yay!
12/27 336k, dropping pred to 30!
1/5 227k down to 20mg pred
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14 years 9 months ago #10558 by Dotty
Replied by Dotty on topic Re: Hi, and wow, the last week was horrid!
Sig not showing...

12/13/10 counts too low for their machine to measure.
PLT transfusion brought me up to 12k
2x IVIG in-patient with Pred
1x IVIG out-patient at 60 mg pred/day
currently 76k

Dotty
12/13/10 counts too low for their machine to measure.
PLT transfusion brought me up to 12k
2x IVIG in-patient with Pred
1x IVIG out-patient at 60 mg pred/day
12/16 76k
12/22 320k and dropping Pred to 40 mg/d. Yay!
12/27 336k, dropping pred to 30!
1/5 227k down to 20mg pred
More
14 years 9 months ago #10559 by eklein
Replied by eklein on topic Re: Hi, and wow, the last week was horrid!
Hi Dotty!
Sorry to hear about your horrible week! Maybe the ITP was part of your reaction to Bactrim, and getting off it might put you back on track. Sometimes drug induced ITP is just an acute reaction that can be short lived. Be sure to let us know what happens.
Welcome - Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 9 months ago #10560 by Sandi
Replied by Sandi on topic Re: Hi, and wow, the last week was horrid!
Hi Dotty - it is possible that the antibiotic caused an acute reaction. I wouldn't necessarily agree that the transfusion would have brought you up higher if the thrombocytopenia was just due to Bactrim. However, sometimes drugs can cause a permanent autoimmune chain reaction. You can still achieve a remission. I've had drops like that from Amoxicillin and did rebound.

Good luck - I hope your counts continue to rise!
14 years 9 months ago #10564 by
Well you have had a heck of a time bless your heart! I hope being off the Bactrim and
getting some treatment will bring your count up to stay.

Bactrim is one I can't take, sulfa drug. I've had a drop due to injections but not to
a medication that I know of.

www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000814#a684026-sideEffects
If you experience any of the following symptoms, call your doctor immediately:
-unusual bruising or bleeding

Take care and keep us posted!
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14 years 9 months ago #10567 by Bunnie
Replied by Bunnie on topic Re:Hi, and wow, the last week was horrid!
Sorry that you've had such a bad week! Like other posters, I also see drops when I take antibiotics (Augmentin, Amoxicyln), so that's the likely cause.

"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra
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14 years 9 months ago #10570 by Dotty
Replied by Dotty on topic Re:Hi, and wow, the last week was horrid!
Hmm, it seems names don't show unless in the sig file? Bear with me while I learn my way around.

Thank you all for the warm welcome!

It certainly seems to me that the Bactrim is what precipitated my reaction, but the Hem seems to think it's going to respond chronically at this point, altho, I forgot to mention a supposed viral thyroiditis I'd had maybe 3 years ago, which he seemed to see as an indicating factor of it being auto-immune.

I certainly thought I looked pretty yellow on my second night in the hospital, altho that was gone by the next morning, and could have also either been caused by the bactrim or possibly my body trying to process all the blood in places it didn't belong.

From reading on here, it doesn't seem as if most ITPers present with such sudden and acute symptoms. Most mention petechiae, long/heavy periods or gum bleeding, with oral mucosa hemorrhage mentioned only once or twice that I saw (and I've been poring over this place for days!) ;-)

His next line of treatment, if the Pred taper results in another drop (which seems highly likely) seems to be rituxan. My hubby has NHL and has had a number of rituxan infusions; he also has transverse myelitis, for which he was put on pred, but I'm at the same dose he was on, albeit 50 lbs+ lighter. Within a year he needed hip surgery for avascular necrosis... core decompression which was unsuccessful, so he's looking at a replacement at some point in the future. Currently, hubby has some swollen lymph nodes and they're watching him with quarterly CT's to determine when to treat... but it seems I'll be the one getting the next rituxan treatments around here, likely.

How much do people typically see a rise in their PLTs after IVIG? I didn't get all my numbers after each transfusion, but I think it was 12k-30sth-40sh-76k... which wasn't, apparently, as much as the hem was hoping for, since he said he would taper my pred dose if they went up enough, and he decided not to do that.

He is concerned about a sudden drop w/ a taper, and seems to think that if he keeps me at a higher dose for longer it will, as I've read people here say "reset my system" and keep them up... maybe... but having seen what the (lower dose by body weight) pred did to my hubby I'm scared to stay on it, and scared to go off and start hemorrhaging again. I guess he's hedging his bets.

Erica, I think I will defo fill out that form but I want to get my other counts first.. the ones from when I was in the hospital, to give a fuller history.

I hate that my next appt is on the 22nd. I'm scared because a bruise I had on my foot, a week old, which had faded to a nice light blue, now has a new nice red tone on it, because I tend to put that foot under my thigh as I sit... in other words, the pressure from the weight of my thigh has given me a bruise on top of a bruise. :-(

Note, in the pic, the bruises not just from the very careful blood draws, but the bruise on the side of my arm from the BP cuff, and the red lines also from the BP cuff, this pic taken 5 days after said BP cuff was used. Oddly, these bruises look darker now than a few days ago.

-Dotty

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Dotty
12/13/10 counts too low for their machine to measure.
PLT transfusion brought me up to 12k
2x IVIG in-patient with Pred
1x IVIG out-patient at 60 mg pred/day
12/16 76k
12/22 320k and dropping Pred to 40 mg/d. Yay!
12/27 336k, dropping pred to 30!
1/5 227k down to 20mg pred
More
14 years 9 months ago #10571 by Dotty
Replied by Dotty on topic Re:Hi, and wow, the last week was horrid!
lol, wrong pic, that is my leg.

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Dotty
12/13/10 counts too low for their machine to measure.
PLT transfusion brought me up to 12k
2x IVIG in-patient with Pred
1x IVIG out-patient at 60 mg pred/day
12/16 76k
12/22 320k and dropping Pred to 40 mg/d. Yay!
12/27 336k, dropping pred to 30!
1/5 227k down to 20mg pred
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 9 months ago #10585 by Sandi
Replied by Sandi on topic Re:Hi, and wow, the last week was horrid!
Dotty - there are plenty of people that present like you did. Everyone has different stories of how they were diagnosed. My counts were at 50 when I was diagnosed (no symptoms), but only because I happened to have a CBC at my GP's office. A few weeks later, counts were 8 and I had bruises like yours. If I hadn't had that CBC in the first place, I would have ended up with a story like yours. Some people have been "caught" sooner than others, but knowing about it when counts were in the 50's didn't make much difference since I didn't treat then anyway.

You don't have to wait for an appointment to get a count done. Most doctors will allow a CBC without an appointment if you think counts are dropping. I had CBC's all the time without seeing the doctor. If counts were down, I'd get a call about the next plan.
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14 years 9 months ago #10599 by Dotty
Replied by Dotty on topic Re:Hi, and wow, the last week was horrid!
Glad to know I'm not a complete freak of nature. ;-)

I actually have a new bruise on my foot... I sit with one foot tucked a bit under the other thigh, and that has, apparently, caused a bruise. If I see any more serious signs I guess I'll go in to the doc earlier than Wedn. I don't imagine my PLTs are still at 76k or even anywhere close with bruising like that for so little, especially since I dropped a wooden bench on that foot 2 days before hospitalization and it didn't bruise as badly as it's bruised now. I still have so many petechiae I don't know if I could tell if I got new ones.

It's comforting that so many on here have experience with very low counts and seem to take it all in stride. I'm not there yet, still pretty scared about all of this.

Dotty
12/13/10 counts too low for their machine to measure.
PLT transfusion brought me up to 12k
2x IVIG in-patient with Pred
1x IVIG out-patient at 60 mg pred/day
12/16 76k
12/22 320k and dropping Pred to 40 mg/d. Yay!
12/27 336k, dropping pred to 30!
1/5 227k down to 20mg pred
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 9 months ago #10600 by Sandi
Replied by Sandi on topic Re:Hi, and wow, the last week was horrid!
It is scary at first. We've all been there!
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14 years 9 months ago #11097 by Dotty
Replied by Dotty on topic Re:Hi, and wow, the last week was horrid!
Ugh, down over 100k. Still fine at 227k, but if I see another drop or two like this one in the next few weeks docs gonna wanna talk rituxan... and the pred is messing me up big time, and I have all kinds of Major Stuff happening in my life right now. I need to be well rested and thinking clearly!

Dotty
12/13/10 counts too low for their machine to measure.
PLT transfusion brought me up to 12k
2x IVIG in-patient with Pred
1x IVIG out-patient at 60 mg pred/day
12/16 76k
12/22 320k and dropping Pred to 40 mg/d. Yay!
12/27 336k, dropping pred to 30!
1/5 227k down to 20mg pred
More
14 years 7 months ago #12884 by Dadio
Replied by Dadio on topic Re: Hi, and wow, the last week was horrid!
Hello,

We are new to this site and ran into it searching side affects of Bactrim, specifically related to ITP. Our son was diagnosis with the condition a little more than a month ago. It was found during a routine DR visit. He is a wrestler and we were going for a routine skin check form bc of a reaction to clothes detergent. I had picked him up from practice and noticed the purple dots on him and figured the rash had been rubbed. He was on the last few doses of Bactrim at the time we went in for the visit. They saw the petechia and did the CBC to find his platelets were at or below 5000. We were at the hospital that night.

They gave him an infusion of WinRho which took almost 48hrs to kick in but did and since has bounced back. Needless to say we were in the hospital for 4 days. He was released on a Saturday and by the following Monday his #'s went all the way back up to 379,000. After that and over a 2 wk period they dropped 200,000 (he has been doing the CBC test weekly). Great news is the last 2 visits the numbers have gone back up over 250,000!

They told us it was probably caused by a bad cold he had 3 to 4 wks prior but I'm still questioning the Bactrim. Even the Pharmacist wrote in red sharpie on the medicine literature (that was not read)........Allergy ??? The serious side effects did mention blood disorders. Guess it's tough not knowing.
14 years 7 months ago #12908 by
Dadio,

Many, if not most, of commonly prescribed drugs and Over the Counter (OTC) drugs have been known to affect the platlets in a susceptible person. Sometimes it might be the cumulative factor of a few different OTC drugs, then adding in the Bactrim, and WHAM! ITP. (Benadryl, Tylenol, Ibuprofin, Valtrex, most common antibiotics, etc., just to name a few) Vaccinations can also have that affect. The MMR, DPT and the current flu shoot have all been implicated in increased cases of ITP. So, it could be your son had a few of these close together, and it resulted in ITP for him. I would caution against keeping him away from any drug known to cause thrombocytopenia , as it does seem that once you've had it, you seem to be more sensitive to it happening again. If you ever want to research a drug to see if it might cause ITP, just google the name of the drug or product, plus "thrombocytopenia", which is usually how it's listed (rather than ITP) Also, they usually don't list this side effect under the Patient section. It's always listed under "Side Effects for Professionals", or something to that effect, which is usually way at the bottom.

The good news is, it sounds like your son may be one of those with an acute case, and he'll not have any further problem. His platelets have come back at a very nice level. Hopefully he will stay there.

The bad news is, there's no definitive proof that a particular substance or event was the causative factor, and the chances that many doctors would ever admit to the fact that the drugs they prescribed were harmful, is slim to none.

So, educate yourself, as well as your son, and have him avoid those drugs, as much as possible. There are other ways of treating the common, everyday ailments of life, that don't involve drugs. You may want to check out the Natural Treatment section of this forum

Good luck to you both,
April