ITP Patient since 2000 - Feeling Lost and Scared

Hi!

I was diagnosed with ITP 11 years ago. I went to my OB-GYN for my PCOS and was asked to see. Hematologist and get bloodwork done. Tests later, my platelet count was down to 2000 and I was immediately transfused with 6 bags. I underwent bone marrow aspiration. I was put on steroids for 6mos, from 60mg daily down to zero eventually. I was in remission for 10 years, count staying above 150k until platelet started fluctuating again last year. Again, I went through bone marrow aspiration and 6 months of Prednisone. Everything seemed ok and stable again. A couple of weeks back, I noticed severeal light petechiae on my body, mostly on my legs and feet. Blood test later, i'm below normal again at 73k. My latest count is 67k, a couple of days ago.

I have been feeling very weak and exhausted after doing the simplest of tasks. I always get dizzy as well. More and more petechial rashes have also been showing up on my legs, arms, shoulders, feet, etc - never dark big areas but rather 5-15 dots per area.

I don't want to take Prednisone again. I hated the side effects and have not been able to lose the weight gain since stopping intake of Prednisone last March. Is this something I will just have to live with for the rest of my life? Will I have a chance of getting pregnant and giving birth safely?

What should I do now?

Thanks!

Jamie

How has ITP changed your lifestyle? Have you had to make drastic changes in your activities, diet, etc? Is there any type of food I should eat much more of to help with my ITP?

Hi Jamie! Glad you found us.

There are other treatments that you can discuss with your doctor besides Prednisone. Rituxan is one of them, and has given many of us a long remission. It's a once a week infusion that takes about 6 hours. They are given for four weeks. Most people have very few side effects and can work the day after and do everything they normally do.

I don't know if you will have ITP for the rest of your life. I was diagnosed in 1998 and did Prednisone on and off for a year and a half. I then had a remission for a year and a half, but was back on Prednisone on and off for a few more years. Then I did Rituxan in 2003 and had a year of remission, did Rituxan again after that (2004) and have been in remission since.

Most woman can successfully have babies, especially if they can get counts up like you can.

What you should do now is learn as much as you can about other treatment options and discuss them with your doctor. When your counts get to treatment level, you will probably want to treat then. ITP never changes my lifestyle; I worked and had three kids and couldn't change that, so my life just kept going normally.

Foods or diets do not usually help ITP, but while you are on Prednisone, it's best to limit salt and sugar and try to exercise.

Thanks, Sandi. Most recent count is 58k. I will ask my hematologist about Rituxan.

Have you ever heard of snakeweed as herbal alternative treatment for low platelet count?

No, I haven't, sorry.

Sorry to hear ITP is rearing it's uglyness again. I would talk to your Dr about Rituxan. I will not do Prednisone again. Have had two Rituxan treatments. Last one is 2+years.
I have not really had to make any drastic changes.
Good Luck.

Thanks Dean! My latest counts were 38, 54 and 50. I did ask my doctor about Rituxan but she wasn't very keen on it.

Some doctors do feel that way, but Rituxan is a widely accepted ITP treatment option. How do YOU feel about it?

Do some research on Rituxin. It is your choice to make, despite you Dr's thoughts. Also check to see if your insurance will cover it. The day before my 4th treatment of the second round, I received a letter from my insurance stating that the entire treatment is being denied. The stress of that sure did not help matters!!!!

Your doctor may be more agreeable to low dose rituxan which appears to work just as well for ITP as the standard dosing and is safer and cheaper. It is given as four 100mg doses.