TOPIC:

Hi all.
I just wanted to tell my story, if there is anyone here that can relate and in hope for a little advice.

I'm 28 years old, from Iceland. So excuse me, my English is not perfect.
I'm currently in my 14th week of pregnancy and diagnosed with ITP since 2006. This is my first pregnancy. I've never had any treatment, before the pregnancy, just regular check ups with my haematologist all these 8 years since diagnosed with ITP. I have never had any serious symptoms, just a very light skin bleeding on my ankles (don't know what it is called in English). My platelets have always been around 25-60.000 per microliter.

I saw my doctor when I was 8 weeks pregnant and she told me that the platelets need to be around 40-50.000 while pregnant. I also see a high-risk OB.When I was 9 weeks pregnant my platelets fell down to 37.000 and my haemo prescribed Prednisone 50 mg a day. They spiked up to 100.000! So she lowered the dosage down to 40, then 35, then 30 mg. My latest count was 70.000 and my blood is drawn every week.

The prednisone is not very pleasant. Fortunately I do not have many side effects (yet..), but my skin is horrible! Acne all over my chest, neck, back and shoulders and also on my face! It's one of the side affects that is not really serious, but very uncomfortable and difficult to hide. Fortunately the climate is cold here, so I can were sweaters and scarf or a shawl to hide most of it.
My mood has also been a little down. I relate this to the prednisone, since I am normally a happy person. The acne is not really helping the situation, sometimes I just want to call in sick for work and not go out of my house at all.

If you have any advice on dealing with the acne and the mood swings on prednisone, it is greatly appreciated!
Thank you for reading and hope you have a wonderful day!
Lilja

Hello Lilija,

I wouldn't know what to say really, but,
I imagine looking forward would be the right thing. Think about the goal, the purpose of all this mess. If they can stabilize your counts and you deliver a healthy baby, that's what's important.

You remind me a lot of my wife who was also diagnosed some time ago and never had any treatment and barely any symptoms. Now she is pregnant and we are actually in the hospital because of a mild and short bleeding. (Off topic though)

All I can say again is hang in there, ignore the side affects if you can and think forward.

Desafina.

Hi I'm also pregnant with itp I'm 32 weeks and also 28 years old now and my counts have been anywhere from 4-83 with treatment ( which is ivig) I get ivig 3 times a week. steroids don't work on me anymore I have had itp for 11 years. The first few years I was on prednisone their rough but it will only be for a little while, after baby if you need treatment try something else long term steroid use is not good. Good luck with your pregnancy it's not easy but it'll be worth it

Keil! You're almost there. You got to a safe point as far as the baby, that's great!

Hi liljarut
I am also 14 weeks. I have had ITP for almost 5 years now. Somehow my body got better on its own after the docs kind of got tired of treating and I started trying a lot of natural things, so before pregnancy my counts were in the 80's. Slowly they have been going down since pregnancy and are now at 13. I have to take IVIG next week. For now they have put me on a very low dose of steroids 10mg. 10 mg never used to have an effect on me but I will see how I do this time. My hematologist is new and I think not very familiar with this so is very cautious.

I am really down today as I haven't had to deal with treatments for a long time. I hope IVIG is safe for babies.i know steroids are not recommended in the first trimester as there is a chance they could cause cleft palettes on the baby but we are both in second trimester so should be ok.

Mdgal

Thank you for all your replies

I think the only thing I can do now is to ignore the side affects and think forward, it will all be worth it in the end!

Good luck to you Kelirae24 and MDgal, and to your wife desafina!
I somehow feel better knowing that I'm not alone in this battle, and you guys are doing well. Makes be believe I can do this and everything will be okay. My biggest fear is that my baby will not be okay.

All the best to you!
Lilja