Questions for Those Experienced with ITP

Deln,

So happy to hear your surgery went well. I wish you all the best and quick healing. One thing I have learned about ITP it's just not predictable....stress no stress, happy or sad if it wants to act up it's coming in. :silly:

Sandi is right about steriods and joint pain...I have terrible joint pain. Walk like a little old lady at times.

Take gently care of yourself.

Deln,

So glad you got through your surgery. I had mine last year and everything went fine. I
know it's easier to "not to worry" than to do, but please try not to stress too much and
get some rest.

I hate even getting my CBC for my platelets; it's like if I don't know what they are, I
will not worry about it. That's how I am. I would just as soon not do the test.

Rest and get better!

8/17/2015

Got the 'packing' out of my nose from the surgery, still have some stints in it. When they took the packing out 5 hours ago, I've had a constant bloody nose. I wouldn't say it's running like a stream, but I could only imagine how tough this would be to have this surgery on platelets under 10,000 like I was at. I don't know how the bleeding would stop?

8/18/2015

Good evening. Tomorrow is 7 days post op and I'm finally getting the nasal splints removed.

I noticed something though which makes me think either my platelets are low, or I've just been running bloody noses awhile so my body isn't as platelet ready elsewhere.

I noticed that when playing zround with my kid, he left a little mark on me from where he grabbed me hard and squeezed the arm. So there's a little cluster of red dots there.

So, clearly I'm worried once again.

It's either

1. My platelets are now low again.

I've taken the following drugs over the past 9 days.

- Ciproflaxicin
- Tylenol
- Hydrocodone
- Oxy Codone.

I'm thinking either one of these drugs has gotten me low, (but I could come back up after i cease using them all)

Or

I may be heading towards another ITP episode.

This far, no wet outputs, which is my tell tale sign for under 5,000 platelets.

Does anyone have a theory or experienced low drops when using the above drugs, only to climb back up upon discontinuation?

8/25/2015:

Good afternoon all. I had a nice 'write up' yesterday, but the PDSA server must have had problems and it all didn't go through.

Basically, I am quite anxious. I have a feeling that (and hope) that either the Ciprofloxacin or the excessive Tylenol use (less likely) has given be this drug induced ITP episode. I'm hoping, of course, it's drug induced, and that once the last of the drugs clear my system and allow my body to restore the platelets in another 7-10 days, all will be better.

Symptomatically, I do not yet have a blood blister in the mouth, which is my tell tale sign for under 5,000. I have small dots on the ankles, lower legs, but it's so difficult to decipher whether these are new, or old. I'm not sure how long these petechia last, what, 4 days maybe?

Definitely anxious as I know I'm 'low', but do not want to get a blood test and then be immediately treated with Dex.

Petechiae will usually last as long as counts are down and tend to get worse as time goes on. If they clear up, that can be a sign that counts have gone up some. Just watch your symptoms and get a count if they get worse.

Hang in there Deln. I know it's not always easy, but as long as you are not getting any symptoms, that is really important. I was on a lot of drugs this last year and a half and was able to keep my platelets up. I just try to mainly worry about the symptoms--and when I am extremely tired, I try to get in a nap to rest.

I will be praying for the best for you.

Hello all,

I seem paranoid... i check myself in the mirror at least once per 1-2 hours!

Are you now off all the extra medications and feeling okay? Try not to worry so much; that makes it worse.

Hi Dee Dee,

I am currently not taking any medications. (I am fighting a head cold or something though, maybe just allergies to weather changing).

This stuff is facinating in that, if this ITP inducement was due to a drug, it would be good to know moving forward.

The question is, what Antibiotics DO NOT cause an induced ITP episode ? Perhaps it could be mitigated, knowing that even if platelets decrease to where symptoms are noticable, they will ultimately cease upon completion of the antibiotic, and you just have to 'deal with' symptoms for 7-10 days....

At least, that is the hope.

It doesn't work that way. There are no known antibiotics that will not cause a drop. Any drug has the potential to do that. Most of the time, people do just fine.

If your counts are down (and you don't know that for sure), it could have been caused by the anesthesia. Or the trauma from having the surgery. Or the cold. Or it could just be a coincidence. Some people experience drops in counts during allergy season. Or, a combination of all of the above.

Thanks Sandi.

A lot of this seems to be trial and error, and blind coincidence.

Here's the thing that makes me think it's not the surgery itself. Later that day I noticed on my arm some petechia pressure marks. I deduced that was where the blood pressure cuff was pressing on me during the surgery. Hence, I believe it was occurring prior to surgery. I was taking an antibiotic prior to surgery (CIPRO). I highly suspect this drug to have lowered my platelets, if this is indeed actually drug induced.

I'm afraid to do my sub-cutaneous infusions now, because I have to poke myself with 4 needles, and don't want to have bruising/bleeding.

My count drops if I have a head cold

So you think your counts were low during the surgery? You said you had petechiae later that day. It should have been brought to the attention of the doctors.

Del,
If you are concerned about your count, rather than just guessing about what they might be, can you just go and get the blood draw? If they are down, you can decide to just wait it out and see what happens and if they are ok, you can stop thinking about it. I just had a count (123,000) and yet I had petechia on my legs and was sure things were bad but it turned out just fine. My doctor allows me to come in any time for a test, perhaps your doctor can do the same. Checking out your body every hour won't change your platelet count. Knowledge is power! Good luck,
Emily

Deln.

I agree with Emily, and interestingly enough I have petechia for the first time with a count of 49. No sign of it at all with counts under 30 even when I was in single figures.

My consultant told me very early on if you are not actively bleeding you are not in danger so do not let ITP rule your life.

Please stop worrying
Anne

8/31/2015

Hello everyone, thank you for your responses.

This has all been very interesting. I think I had it correctly pegged down to the Cipro antibiotic. Upon completing the course of antibiotics, within 4-8 days later, the symptoms began to resolve themselves.

This is all quite interesting and useful to know in the future. I'm wondering if it's just this particular 'class' of antibiotics (CIPRO / LEVAQUIN ) or other types as well.

The 'good' news though, is that even if I need to take these, I know that the ITP symptoms will cease when the medication stops. It's only temporary, and thus, doesn't actually require treatment, like the viral-ITP trigger did in March.

9/7/2015:

Well, I'm back at it again. Petechaie on the legs, mouth, etc....

And, this is about 6-7 days now after taking a different antibiotic - CEFTIN.

This is unreal, I don't get why antibiotics are driving my platelets down to the ground. Maybe it's because I have a viral illness, and thus, there's nothing to treat with antibiotics, so they just attach antibodies to the platelets.

Now we'll see how long the symptoms last. I stopped taking the drug yesterday, so my last dose was like 9 am yesterday.

It might not be caused by the antibiotics. You might have to try to accept that. You keep looking for something to blame, but sometimes ITP does whatever it wants. We've all had drops for no particular reason.

Have you had a count done as suggested? Come on, Deln - you are right back where you started both with symptoms and the stubborn attitude.

I'm with Sandi - get a count done.

Maybe it is the virus not the antibiotics causing the count drop

Hello -

I have my suspicions that my count decrease is correlated with antibiotic usage. I'm going to wait 4-6 days to see if my symptoms cease. (Just like on the CIPRO).

Also, it could be viral too, but my stronger suspicion is it is the antibiotics doing this to me.

I guess there's nothing to do but test the theory and wait.

Deln:

How are the symptoms? Do you still have blood blisters? If so, blood blisters are a warning sign. Don't ignore the warning for the sake of trying to prove a point.

Hello Everyone,

I'm still alive with this ITP, lol. It's been 5 full days since my last antibiotic. It seems that the petechaie and symptoms are ceasing, though it is difficult to tell because the petechaie on extremities take awhile to disappear. I'm trying to see if there are any NEW petechaie or new bruising in the last day or two.

What I'm curious about is whether one's blood can be tested to determine if antibiotics are the culprit. Kind of like how they do a blood culture and add antibiotics to see which one responds. I'd wonder if they can determine if an antibiotic is introduced to my blood, if it attaches antibodies to my platelets?

I still need to wait, probably until Wednesday or so, which is about 10-12 days out, to test my theory if it was indeed the antibiotic. If so, I'm going to need to have a long chat with my doctor.

This would also be a "break through" for me if I'm able to pinpoint a cause of platelet destruction stemming from antibiotic usage.

As far as I know, it's not possible to do that. They can do that for quinine because those are specific, identified antibodies that will always cause a serious platelet drop for individuals that are sensitive to quinine. As far as ITP and antibiotics, it does not occur that often and it just isn't done. Most people are not on antibiotics that often.

I have had drops twice due to Amoxicillin, or it could have been a coincidence. I stayed away from that antibiotic for about ten years. Then I needed one one day and my doctor said Amox would be the best one so I agreed. No platelet drop and I've used it a few times since. With ITP is is difficult to determine the difference between cause and coincidence.

I don't get how you know it is the antibiotic and not what the antibiotic is treating. Skipping an antibiotic because platelets might drop will probably lead to the discovery that a serious infection also causes platelets to drop--or if they rise that it's not worth the other issues that come with a serious infection.

I think it's probably the infection causing the drop and not the antibiotics but you could test it by taking the antibiotics when you are well and see what happens. Of course even then it could be coincidence so you'd have to do it a few times.

Taking antibiotics uneccessarily isn't a very good idea though. You may build up resistance to them

9/17/2015

So I'm about 9 days after ceasing the Ceftin antibiotic usage. All petechaie have healed or are nearly healed. No new markings or bruising.

That's two antibiotics and two platelet plummets, followed by recovery 7-10 days after stopping.

This just doesn't seem like pure coincidence to me, there's an obvious correlation here.

As thrombocytopenia is a known adverse reaction to cefuroxime (albeit rare) I'm surprised you were given it in the first place Dein