How to get rid of this itp thing

[s00rena]

Hi. I try to be brief.

I was diagnosed with itp on March 2018. Had a terrible 7 month of steroids and 5 rounds of rituximab with a stomach bleeding.

Switched to Nplate and did fine for a year on one vial that I could inject every 10 days instead of 7 days but after a trip to turkey without any disease and a count of 120k two weeks prior, had a stomach bleeding again which now switched to the second vial. Now I'm taking around 6 mcg/kg and self-injecting but counts fluctuate. Ever since I switched to the second vial, I felt it constantly requires a greater dose after months/years so I'm frustrated it cannot be done indefinetely.

I live in Iran and looking to apply to the US for Ph.D. and thanks to God, I got a good resume. So as you might know we have some problems in Iran. Anyway, the situation is stressful because in another country there are no relatives and life is gonna be hard.

What should I do? To be honest, itp start after some stressful interval of my life and in the past year I have had stress because of immigration and also requiring greater dose of nplate slightly over many months and counts being around 30-50k sometimes. Is there any way I can get rid of this peacefully?

I have read many stories on PDSA and here people quitting meds after doing some effort, mostly regieme change, but personally my regieme is not unhealthy and the #1 suspect is the stress. Has anybody on the earth successfully managed their itp by fixing their mental state? How?

Oh, regarding splenectomy, I'm afraid like a mad dog. You don't know how much I hate operations and doing this gamble.

In the past couple of months after getting a count of 30k two months in a row, the stress was really high and I check my mouth frequently ever since. It is not good I don't know what can I do.

All I want is counts greater than 20k and I don't think it's hard to do!

Thanks.

[RobertSp]

There are some similarities to my situation. At the time of diagnosis I was in a high stress job. The condition may have been preexisting but I don't know. Several treatments were tried including splenectomy. The effects of that lasted for about 4 or 5 years.

When I retired and started using eating foods, the counts have stayed above 30 without drugs. The condition has been static now for 16 years.

[s00rena in reply to RobertSp]

Hello. Very promising. What did you do to counter the stress? It was possible to avoid stress only after you retired?

And can you please give me more details about foods please?

You answer is very helpful and I really appreciate it sir. You know how heavy this burden is.

[RobertSp in reply to s00rena]

My job includes emergency call out . So yes retiring reduced a lot of stress. The same job facilitated regular platelet counts. I noticed small fluctuations in the counts. I kept a journal to corelate the fluctuations with various foods. I recommend such a journal for anyone who has ITP. After some observation time, I noticed that certain foods would elevate the count and others would lower it. These effects may not be the same for everyone. For me, almonds, walnuts and cashew are good but flax seed is bad. I think a good variety of quality meats is good and a good daily intake of organic vegetables is good. I had bee getting an IvIg treatment when the counts would drop. And a get bad side effects from prednisone. So that was to be avoided when possible. I have maintained counts above 60 for many years without treatment. More recently they have dropped into the 30s. But I have been without drug treatments for 15 years.

I suggest: 1) discuss with your doctor/specialist, 2) keep a journal of what you eat and compare to the platelet counts. If you can discover several food which give small count increases and put them together you may get an increase in total that works for you.

[s00rena in reply to RobertSp]

Thanks sir! It must be the best feeling in the world to live "off treatments".

[Anthonyh7]

You may find the following video helpful as it goes through all of the current ITP treatments and how they work - youtu.be/lcC329pd-fY(Not working as expected?)

[s00rena in reply to Anthonyh7]

Hi. Thanks for your reply.

The news are promising of course and Professor Newland is famous in the itp world.But what I ( and many people in this forum was ) is getting of this "itp train" somewhere in our lives and not being on the medics for life. I know many people have recovered and I was just curios to know about those very real stories.

Thanks.