Possible return of low counts

Hi all,

Been a while since I bothered with questions but have been in and out of the form from time to time.

To recap my wife was diagnosed with ITP in November of 2011 with a count of 1, she went through many treatments to include steroids, IVIG, and Rituxan. In January 2013 her counts returned to normal shortly after her 2nd Rituxan infusion; she only did one round of Rituxan.

Since then her number dipped below 150 (130's to 140's) a couple times. Recently after an acute respiratory illness that appeared to be the flu, she started to see brusing on her arms and legs (nothing big but enough to cause a little anxiety) and decided to get a draw done. It came in at 147. Her normal hemo appointment was today and it has since gone down to 108. I know counts go up and down but when should we start to be concerned?

Also for those who have been successful with Rituxan have you experienced similar dips? Did it require any medical intervention?

Thanks,

Concerned Hubby.

Hello. I remember you and your wife well! Counts often go down with illnesses and many times they rebound on their own in a few weeks. I wouldn't even start to worry until counts hit 50k, then you'd want to have a plan in place for treatment if they dropped below that. Rituxan is only successful until counts begin to drop to an unsafe level. Then it's considered to have worn off and time for another treatment, whatever that may be.

Yes, I've had two drops below 50. Had a bit of a panic attack, but waited to see if they went back up on their own, which they did.

I'm in a sustained rituxan remission and my counts have dipped at least several times below 100 but return to over 200. They dip due to some insult, like pneumonia/antibiotics. Then climb back up.
Erica

Sandi, Cindy, Erica,

Thank you all for the replies...we're crossing our fingers. We're taking our 4 yr old to Disney in October and I dreaded that she would have a drop on or around the time we were supposed to leave on our trip. I'm hoping she follows a similar pattern by remaining at a safe level and a return to *normal* safe level.

Thanks again and hope everything remains safe.

Jay

If that would happen, there are ways to get counts up so that she could take the trip. You have advance notice, so you can use that to your advantage. Keep us posted!

Don't wait around for the other shoe to drop - that's not good for you or your wife! What happens happens and you 2 will deal with it. I'm sure there is a way to bring her counts up if they are too low around the Disney trip time.

Be positive, ok?! You 3 will have a great trip to Disney!

[We moved to Tokyo very shortly after my diagnosis and while I was on 60mg of prednisone - nothing was going to stop me from that move! Life goes on in spite of platelets.]

Hi,
It is quite difficult to say in Itp that when or why symptoms returns suddenly.
It's been bit while i have not posted any question here though I kept on posting the monthly platelet count results of my wife after her Rituximab treatment which happened in Dec'13. From last five months her count are +200k and we were quite happy. From last six months she is on daily dose of 100mg Dapsone only.
But today she noticed a red spot in her mouth, similarly she used to have during very low counts. Bit afraid now and going to have her platelet count first thing in the morning.

Yogesh

Hi Yogesh,

My wife has been similar with the exception of the spot in the mouth. She's been "normal" up until a few weeks ago where we've seen a trend downward from 165, 148, 108, and now she's due for another draw on Tuesday. Her hematologist had arranged for a check during the summer during that time her count was in the 160's. Since then its been a slow but steady decline. Two weeks (or so) ago she noticed a few small bruises on her legs and one on her elbow. She went in for a count and that's where we got the 148, the Dr. had asked for another count 7 days later seeing my wife had a dealing with a pretty nasty upper respiratory infection that had flu like qualities; at that draw it was shown to be 108.

She has been sick however its been a couple weeks since her last upper respiratory event. Her hematologist is not at all concerned but we're a little nervous seeing two years ago around this time is when she was diagnosed and started seeing symptoms before she crashed down to 1 as discovered in routine blood test with her endocrinologist.

I wish you and your wife the best.

Jay

Thanks Jay,

Her blister was disappeared when she woke up today morning but to be on the safer side we decided to check her count.
She got her count check today and as per the report, platelet count is 349k. I rechecked with lab attendant and he confirmed the same. Dose not seems the reason for her blister, quite possible she got scratched with her teeth but the blister was similar to she used to get during low platelets count and scared us completely.

Feeling bit relaxed now, Thanks to all PDSA members it’s been great support ever .

Wish you all the very best for your Disney trip.

Yogesh

Yogesh:

I'm glad that it turned out that her counts were fine. When things like that happen, it's a good reminder to try not to worry when things like that occur because it could very well mean nothing.

All,

Good news is wife had a draw today and her count has stablized for now, latest was 116 vs 108 on 9/24/2014. Her Dr. recommended another draw in a month....

Thanks again to all the responses and helping keep the sanity level somewhat normal. Never good seeing someone or reading about others deal with chronic illness.

I wish all the best.

Jay

That's great news, Jay! Her counts probably reacted to the virus and she might just rebound. Looks like that Disney trip will be a go!