long time no post- remission after splenectomy

Hi ITPers

Havent posted here in some time.

I diagnosed in about 02 or 03 and a few years after that could only keep my numbers safe (around 20-30) with prednisone.

THen in fall of '11 my number plummeted to zero to single digits despite IVIG and prednisone. I didn't respond to the recommended highest dose of Nplate, but did eventually respond to an even higher dose. WIth my numbers in the 600 I had a splenectomy and in the following weeks, my numbers settled in the 300s (never had Nplate again).

Just had my yearly bloodwork today... 345. So I remain in remission and mine is a successful splenectomy story.

I wish good health for everyone -

Mark

Hi Mark,

I'm really glad to hear that you have been so successful with your ITP! So, basically, your
platelets stayed in the 20-30 range for 9 years? Can you think of anything that might have made them plummet to the single digit range? There have been a few others on the forum in the 20-30 range and was just wondering what your thoughts were on what might have caused it. I feel, for myself, it can be stress, too much exercise, and too much work. These are for myself.

Just thought I would ask. We all have our own theories and you have had ITP for quite a while.

Good luck to you and thanks for letting us know.

Dee Dee

Hi Dee Dee

I think there are three possibilities regarding why my numbers plummeted.

1) I had just gone through a period of very high stress at work that had lasted for several months. THis period ended a week or so before my numbers dropped.
2) Over the years I had tried every possible medical strategy to get off of prednisone, with the exception of Nplate or romiplostim. The day before my numbers dropped I started taking the drug rapamycin as part of an experimental trial. Rapamycin is used to prevent transplant rejection. However, no one else in the trial (as far as I know) had seen their ITP get quickly worst like I did.
3) just coincidence.

So who knows? I'm entering a similar period of work stress now and so I'm glad to see my numbers havent dropped. I'm trying to deal with stress with meditation and mindfully maintaining a state of equanimity. It gets easier with age, I think...

Mark

Thank you for your reply, Mark. So, I think stress is number one on a lot of our
lists. Please work on reducing it this time. This is what I do. Like I mentioned, I had
my first bout of ITP in 2006 and my remission lasted for 4 years. My 2nd bout came in 2010 and it's almost been 5 years this July.

On my second bout in 2010, I was a lot more sick than the first time and it took over 6 weeks to
get my platelets to stay out of the single digits. But, like you, I did stop one of my medications that is known to lower your platelets (sinequan). I think I may have become allergic to it. It's a good thing that you stopped the rapamycin because it could have had worse side effects down the road.

Wishing you the best, and at least you have learned how to work with your ITP.

Dee Dee