In remission when moved to different country

Hi..

Just wanted to mention my wife's case here and if anybody had any experience with getting into remission by moving out to a different city, state or country..
Which again creates hope that environmental factor play a big role in triggering ITP.

My wife was diagnosed with ITP on last year’s thanks giving weekend (November 2010), her count was 15K at that time.

Her Hemo started her on 60mg Prednisone and her next CBC showed the count as 170K and we got so excited….Hemo cut down the dose to 40 Mg and for the next two weeks her count dropped to 120K and then to 60K. Her dose was increased to 60 MG again and next week again her count went up to 185K.
This time he reduced the dose to 50 Mg and her next week blood work revealed the count as 135K and and 110 K a week after (so 6 weeks on this medicine and her count was dropping on 50 Mg prednisone but was going up on 60 Mg)

My wife was scheduled to travel to India the next day and looking at 110K her Hemo panicked and wanted her to start Rituxan before she leaves, we refused because we did not want to risk the chance as she was supposed to travel 20 hrs on her own and was not sure if Rituxan can create any trouble for her.

Now here is the interesting part, one week in India and she gets her blood work done (she was stil on 50 Mg dose) and her platelet count goes up to 160K. For the next 6 weeks while she was in India she had her count above 200K and her hemo kept of tapering 5Mg prednisone every week.
Also, she was taking Papaya leaf extract there.
She came back to US in the last week of Feb and she continued to take papaya extract and slowly got tapered off prednisone by the end of March. Througout her count was above 200K.
Again on April 20th we observed petchia and got scared and her CBC showed the count as 10K, doctor started her on Prednisone and she was also infused with 4 course of Rituxan everyweek. Now it has been 4 weeks since her last dose and we still don’t see any rituxan response.
We are still baffled how her count was so good during her 6 weeks in India, was it late Prednisone response (I totally doubt as her count was constantly going down with 50 Mg after 6 weeks of prednisone and how come it suddenly started going up), or the papaya leaf extract (which she still takes in US but no luck now) or the change in environment/country (if that is the case she would like to go back for a short term (may be 4 weeks) and if it works great.. else she may have to undergo Spleenectomy)..Its not a easy decision for her to go there.. as it may cost her job (more than 4 weeks of Vacation may not be possible) and also the expense we will have to incur there..
Any response would help us a lot in making the decision.

Thanks!

We've had a few people report platelet count changes related to altitude. Most said higher altitude = more platelets, but I think some said the opposite. Was there any altitude difference from where she was living to India?

Also there might be some environmental trigger, like maybe mold or an allergy where she normally lives? Or some chemical in a home or office? These things are possible but really hard to pin down.
Erica

Thanks Erica!

Infact we currently live in Cedar Rpids, IA and its elevation is 810 ft (247 m) and in India the place she was in was at 80.71 metres (264.8 ft) so it was at lower altitude so I am not sure if that would have been the case.

I seriously belive that it must be some allergen or environmental trigger because she got this disease just one month after getting into a new job at a different location, but it is a desk job.. it doesnt look like any chemical or mold exposure there.. but who knows


Has anyone seen a delayed remmision to Prenisone.. like after 6-7 weeks of treatment on prednisone and suddently the same dose (50 mg for her) which was decreasing the count starts increasing the count.. I wonder if that is the reason for her remission for 3 months .. but I hope it was not..

Shomi - I have seen the strangest things happen with Prednisone over the years, so it's impossible to say what did it. That's what is so hard about ITP, it's hard to pin down what works and what doesn't when there are a few things going on at the same time.

Some people claim that plane rides make their counts go down, so if her counts had tanked, you might blame that. It's a never-ending chase to find out what made counts go up and what makes them go down. Sometimes, there is no explanation (not that you can find, anyway).

Thanks Sandi, I hope we can find the solution some day, I am hoping that someone else might have the same experience with ITP (moving out and getting remission) and that can help me in pinning down to something.
The hunt continues...

Are you guys attending the Boston conference.. we are thinking of attnding it and will ove to meet you guys!l

Shomi we moved from high altitude to sea level, an overseas move - that was right after I was diagnosed and on 60mg of prednisone. That move, and another, before we moved back to the States & high altitude once again did nothing for/to my count.

Thanks Melinda.

How did you Pin down to gamma globulin injection.. were your diagnosed just after that shot...

Also, can you tell what medication worked and what did not for you...

I am still baffled how my wife got into remmission for 3 months after she moved.. and then got back the disease again so trying to look into various factors..

Hoping some day I have the answer.. ITP mystery continues...

Shomi - everyone starts out hoping to find the answer. Unfortunately, very few ever do find one. It can be helpful to read about autoimmunity in general. It can help you to understand the complexity of it all. Good luck to your wife - tell her to join us!