when to worry about a high platelet count?

so i got a platelet count of 443 today, up from 180 last monday. two days of levofloxacin antibiotics left for pneumonia, and on 50mg of prednisone. am thinking of going out of town for the weekend...but should i be worried about such a huge spike in my counts?

when this high of a count happened last month (483), i crashed back down to 0 within days. the doc also called me at that time worried about an infection (pneumonia) and promptly put me on antibiotics for it (azithromycin, which didn't knock it out, hence why i'm on levofloxacin now), but neither he nor his nurse have called me today with any concerns...not sure if i'm being unnecessarily paranoid or not.

was diagnosed on april 9th and have been in & out of emergency 4 times since then (my nose likes to bleed for days at a time when my platelets are low), with counts ranging from 483 to 0 within days, and also received 1 dose of vincristine two weeks ago which seems to have my counts steadily increasing. IVIG only stabilizes me for a few days at a time, and i crash hard as soon as dexamethasone leaves my system. overall i feel better this week than i have since diagnosis...but counts are still all over the place. wondering if this is normal/when to be worried. i've been off work this whole month too & really feel the need to get out & enjoy some time with friends this weekend.

Well, that is a hard question to answer. I need to know the timing of the treatments in accordance with the high counts and platelet drops.

Both IVIG and Decadron are known for shooting counts up followed by a drop. It's pretty typical for those treatments and they are not great for long term use or stabilization.

If your counts are up now only because of Prednisone, it's probably time to discuss a taper with your doctor.

Your count is not seriously high, but people with ITP tend to have a greater risk of blood clots for several reasons. One of those reasons is when counts spike quickly, the risk goes up. Another reason is that people with ITP tend to have larger platelets which are stickier and work better. Another reason is that people with ITP also have platelet microparticles...tiny platelet fragments that can also cause clots. I'm not telling you that you need to be alarmed in any way, but it's best to try to avoid those spikes if possible. If you're going to go away and you take a long car drive, be sure to stop and walk around every so often.

I'd think about a second opinion if I were you. Vincristine is a horrible drug that is rarely used for ITP. It can have some permanent side effects. There are much better options out there. Very few doctors would even mention that drug as an option.

after my initial drop i was given IVIG in the hospital and put on 40mg of dexa for 10 days & then told to stop cold turkey (luckily i've been on steroids before for my ulcerative colitis & started tapering myself during those 10 days). while i was on that was when i got the platelet count of 483/high white blood cell count & my hematologist called me concerned about pneumonia & put me on the first course of antibiotics. about 3 days after coming off the dexa & 5 days of receiving the high platelet count, i had to go to emerge again because i had crashed & had a serious nosebleed again. lasted 4 days & they had to put a rhino rocket in my nose. more IVIG, platelet infusion, and put on 60mg prednisone, discharged same night with 24 platelets only to return 2 days later with a count that had dropped down to 6 again. this was when they decided to try one dose of the vincristine & my platelets steadily went up for a few days before i finally got discharged from the hospital again. that was almost two weeks ago & i have actually been feeling steadily better since then, but then i got this sudden high platelet count yesterday & don't know what to think. also don't know if i should be worried that i did crash again 2 days after being put on prednisone - i'm on a lower dose now than i was then.

my hemotologist says he would not give me vincristine again - this was something they decided to do in emerge. his next line of defense if the prednisone can't stabilize me is a drug called eltrombopeg.

the drive is about 2.5 hours, lots of gas stations to stop at on the way. wanted to visit some friends over the weekend, and its also a slightly smaller city where my boyfriend lives so was going to stay with him for a few days - being off work & sitting in my apartment alone every day is driving me nuts at this point.

Well, all you can do is monitor counts now and see if Prednisone is working. If not, Eltrombopag is a good next option.

Go have some fun. I wouldn't think there is any reason you couldn't go.