TOPIC:

Hey! I'm new to this site and had a few questions about pregnancy and ITP. I was diagnosed with ITP when I was 6 years old, and now am 21, so there for now have chronic ITP. The last year or so I have been think a lot about how I can or if I even can give birth. I have gone through pretty much every treatment you can think of growing up, including a splenectomy and none of them worked. The only medication my doctor has found the some what works pretty good is methotrexate. I know I can not have a child while on methotrexate, and would have to be off it a year or so before I can even start trying. But my doctor has been talking about having me possibly try this treatment called rituximab. I really don't know a whole lot about it. He said if that didn't work our next step would be steroids. The steroids work and all, but only enough time to keep my platelets up for at the most a coupe weeks or so, and I'm not really sure how well it would be for me and a baby to be on steroids my whole pregnancy or if it's even possible. I also I'm curious of there are any other treatment that I can do others the these two that are safe for a baby and I. Thank you for taking the time to read.
Haley

I don't know about the other treatments but i can give some advice about the steroids. Prednisone isn't typically safe to give until at least after the first trimester, but your platelets will drop pretty much right away. That may not be a problem depending on where your numbers usually hang out. For me, I am usually around 50,000 and once i got pregnant they dropped to about 20,000. Even on the steroids the highest i ever got them was around 35,000. my advice, is find a great specialist you are really comfortable with (if you haven't already) and talk to them. If you do become pregnant it will be really important to have a good specialist on your side for the whole thing. I didn't the first time around and it was not a good experience at all. It's great that you are planning ahead! best of luck!!

Haley:

I have never heard of Methotrexate being used to treat ITP. How long have you been on that and how are your counts? That just doesn't sound right. Have you tried Promacta or N-Plate? Rituxan is a far more common treatment and is used by people here all the time. You shouldn't get pregnant for a year after Rituxan also.

There have been a few women here over the years who have chronically low counts, and they have been able to have successful pregnancies. Some with the use of steroids and some with the use of IVIG. Check out the posts by Kelirae...she is about ready to deliver any time now.

Sorry it took me so long to reply. I have been on the Methotrexate for about 8 years. For the last 7 and a half years it has kept them up in the higher normal range. Recently my counts have been fluctuating all over the place. This year I have had to major drops, and needed steroid pushes to get them back to normal. I don't believe I have ever tried the Promacta or N-Plate. Though I was very young when I had all my other treatments and could have. I was told I was refractory to all the treatments. I was 10 when I had my splenectomy it worked for about a year. With out treatment my platelets run anywhere from 2 to upper teens. Thank you all for the information on the pregnancy.

Haley:

N-Plate would probably be much safer than Methotrexate. I was on MTX for Lupus and have some horrible permanent side effects. Since it's no longer working, I hope you can get off of it now. It's really not a good (or viable) ITP treatment. Counts do not need to be normal for most daily living.

If you don't mind me asking what were some of your permanent side affects. I just found out today that my AST is 137 and my ALT is 263. My primary care doctor is concerned and doesn't want me taking my Methotrexate anymore. But my Hemotoligist doesn't seem to concerned, and doesn't think it has anything to do with my Methotrexate. When I was first put on it by a doctor at children's my mother was told if any of my liver counts come back abnormal that I was to stop taking it. So I'm not really sure if my new doctor knows to much about this drug.

I really think you need a new Hematologist. Seriously.

I am sorry that I ever took that drug. I took the pills for about six months, then did the injections for about a year. I ended up with permanent lung damage and have a nodule on my lung. I'm always short of breath. I have to have CT scans every year to check on it. I also was left with bowel problems but I won't go into detail with that. MTX is a heavy duty drug. As I said, I have never seen anyone with ITP treated with it and I've been here on this forum since 1998. You're too young to have damage from a drug like that.

Some doctors try too hard to get counts into a normal range. That is not necessary and the toxicity of some meds can be worse than living with lower than normal counts. There are so many other options now...you have more choices.

Hi, am new to this group. Here is my itp journey. I have had itp from 14 years. I came to know when i got my first periods at age of 13 years. It was heavy uncontrol continues for 15days. Then my doctor prescribed me pills to stop bleeding. Then it stopped. I have had treatments for itp with dapsone ,steriods, dexa, celcept, rituximab, spleenectomy those all was for temporary rise nothing put me in remmission. For periods i tried depro provera, trenexa but nothing was much effective. Only progesterone hormones (primolut n ) is effective. Am still using it to stop bleeding. Confusion is that even with high counts my periods are heavy and uncontrol. So my hemo refer me to gynae that is is related to gynae prob and gynae did an ultrasound only and sent back to hemo that its related to itp. My platelets count always ranges btw 35-45 without any other bleeding symptoms except heavy periods. Now am married and i want to get pregnant so am worried with all these probs, my questions are
Is there possibility to get pregnant while using progestrone hormone? Is it like contraceptive?
Can i get pregnant is there is period cycle like that?
What should i do? Anybody have same problem like me and have baby? I will really appreciate your advises