Newly diagnosed and starting IVF

Hello! I am so pleased to find this forum!!! Recently I found out I had ITP when starting IVF. My levels have been 39, 43 and currently 50. My haematologist told me the issues are during the 3 trimester with regards to not being allowed to have an epidural and bleeding concerns for c-section. I am due to see the haematologist tomorrow where I believe he will start me on pregnisone.

CAn you please help me with the following questions; -

1. Is steroid treatment really necessary if most people relapse anyway?
2. CAn egg pick up be cancelled if platelets are too low and why?
3. Is a count of 50 really a health concern if you feel well?
4. WHy do they start you on steroids before TTC if only to bump up your levels in the last trimester?

Thanks for any feedback. As I said, I am new to this.

Those are all great questions for your hematologist. In general, there would be no rush to start steroids if you do not have bleeding symptoms. I don't think anyone here can tell you if lower platelets would affect "egg pickup".

Hi

It seems that treatment is different country to country and even hematologist to hematologist. My doctor would not do any treatment on me if my platelets were over 20...not even steroids. I found it ridiculous when I was first diagnosed but now that my platelets have actually dipped multiple times and that I have been treated with 2 bouts of steroids and many IVIG treatments (during my pregnancy) I understand what he meant when he said that the treatment is worse then the disease. My first experience with steroids was at a very high dosage (100 mg) and lasted 5 months (I was not pregnant at that time). At the end I had horrible joint pain in my hips and my knees (not everyone gets this kind of side effect though). Now with this pregnancy they put me on 5 mg of steroids and IVIG treatments every 3 weeks. I had a horrible reaction to the IVIG treatment the first time they gave it to me...insane migraines strong enough to make me vomit...now they actually have to give me pre-medication before the treatment to avoid the side effects. A lot of the treatment for ITP is hit and miss...not every treatment works on all patients. Not all patients will get the same side effects. I consulted with 2 high risk OBGYN before getting pregnant and they both assured me that the max my platelets could drop while pregnant is 10% and that sometimes they don't even drop. I calculated and my platelets dropped 50-55%. It's sad to say but sometimes they just don't know...all the research and the preparation that you can do is good...but the disease will decide it's own course. The best thing is just learn to go with the flow. Don't stress out at every little thing that can happen because you'll drive yourself crazy. If it happens, you'll deal with it and make the best decision that you can about it. Good luck and don't worry about the third trimester...that's a ways away!! And since you have ITP they monitor you and the baby very closely...even more so when you reach the end of your pregnancy.

Hi lunanox,
Gosh I just finished reading your ITP and miscarriage posts. It sounds as though you are in a happier place now. I can't imagine the emotional and physical pain you went through.

Saw haematologist today who said my levels at 57. I thought,`Awesome, see you later!` But no! He said as I was about to start trying for a baby that he needed to trial it to see if my body responded. I wasnt overly happy about that as side effects sound shocking. I agreed to trial it for a few weeks and that's all. Like you said, I can worry about that at the third trimester mark. Got to get pregnant first. .

Hi from Australia BTW. It is common practice here to give steroids for levels below 50. But we are an over medicating society.

What were your levels to start getting petechiae?

It's not really common in the US to treat below 50. Maybe 10 years ago it was. My hematologist doesn't even want to start discussing treatment until I drop below 30K, and she's pretty conservative.

Australia is so far behind!