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ITP Support Association
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I took the Rutuxan treatment back in Dec. and have had my blood tested every 4 weeks the past 4 months. Until now my platelet numbers have increased to 133-thousands, but I just got tested and found my platelets decreased to 33 period❗️I was shocked❗️I thought I was doing so well. I am crushed. In the same week I received good news that my latest CT Scan was clear, too. I know I feel fortunate that I am clear of cancer for now. But, the number for my platelets is so disappointing . Recently, two joints in thumb has been enraged with pain. My thumb has been sore for months , so I'm wondering if I have RA. Can RA bring my platelets down like I have witnessed? If anyone can relate please let me know.

2 Replies

Hi Darby,

My nephew has ITP. He has been stable for a year three months. He did the rutuxan treatment and it work while doing it and I sometime after that. Then platelets starting dropping 10,000 at the time till eventually he was down to 10,000 then 7,000.

After that He was going to be given a medicine (I apologize I don't remember the 2 pill medicines I will mention here, but can I ask him and look for names.)

We as family told him not to do the first choice medicine the doctor suggested because of the horrible side effects that affected joints , nausea and clots.

He took the second choice medicine and I realize a while ago that medicine can provoke clots as well. But I have to say the medicine( pill ) has work for him. I will name and post it again.

My nephew is 21 going to 22 right now

He can't make platelets. The medicine does the platelets for him.without the medicine his platelets start dropping.

He works and study but I do think he does suffer from light fatigue. But keeps going.

Our advice and I start it because I research other people's comments and read a little information I found out about ITP and like to pass the advice here:

Follow your doctors directions but also research read other people's situations and read anything you can about it.


I told my nephew and that's is for him not to worry about curing ITP. To get use to it to make it part of his life.

And the have priorities:

Priority one to stabilize your platelets with the doctor recommendations.

But under priority one should be strong in your faith that it will all right and it will work out.

Then also try natural supplements ( research them well because they can affect your platelets or your health in the wrong way.

Try eating good food,

Lower sugar down, eat more wheat, 7 grain bread, no white rice but brown rice, exercise, etc

Second write a journal of any of the changes to do with food , exercise, medicines, allergic pills, events write down hours days occasion so you can keep track nd understand your condition and maybe ultimately help you cure your ITP condition.


Assume ITP it is going to stay for a long time. Eventually might go away, when how and why no one knows but it can go away.

4th and most important advise to my nephew do not worry, live with it. Your goal to keep platelets at 30,000 no more no less.

More that's great! Less look at that journal, do we need exercising if we log off? Read and research other people's experiences that help so much to learn and understand your own condition.

The doctor is going to strive for you to reach 150,000 platelets that's his goal and if you get there is good if not 30,000 is you goal!

Sometimes it went to 10,000 at the beginning for my nephew.you are susceptible to bleed internally but try to be careful when you are at that number and maybe wear a ITP wrist bracelet , but live your life as normal as possible don't spend your energy worrying about it at 10,000 you are more fatigue. Do as much as you can to live normally.

The medicine and treatment with side effects for ITP is more harsh and can be more damaging than the condition. That's why our goal for my nephew is 30,000 he won't bleed internally, he would have to be carefully, from accidents. when he did cut himself by accident then it took a little longer to stop. more important less stress on his mind and body. Living a normal life as possible.

Eventually your doctor and you will get to a medicine or treatment that can help you stabilize.

My nephew probably got this (speculation) from allergies? A vaccine? His immune system has not Been the strongest since he was a baby, but he is doing good, better than stable. And I thank god for the faith!

He is 70,000 platelets for most of the year. It dropped immediately if he forgot his medicine for a few days but go up again.

The medicine he is taken is the one that makes platelets and probably has brought other changes to his body that we don't see and he has not notice.

Every month he goes for a blood test to Measure his platelets.

Darby, it will work out. You are in journey that it will require you to work different things out, but you will stabilize your platelets, just make sure to research read other reviews what your doctor next medicine or treatment side effects are, so you can maybe take another medicine or treatment.

Your health is in your hands., research and ask questions don't be intimidated by the doctor knowledge.

I hope you can and others can see the light with this testimony.


Hector 123, thank you so much for taking the time to reply. Everything you replied is true and comforting. Thanks again!


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