Remember Me     Forgot Login?   Sign up   •  Web site Help & Info


1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Hi there

12 years 9 months ago #17133 by monesue
Hi there was created by monesue
Hi all, I just wanted to come somewhere where people understand the stress that ITP while pregnant can cause. I've had ITP since I was 5 and struggled with it until my late teens when I just had occassional bouts. When I fell pregnant with my son 5 years ago I refused to take steriods when my count dropped to 9 at 16 weeks and so began the IVig treatment. I (like a lot of you I'm sure) loathe steriods. I was worried about the possibilty of having to take them for 24 weeks! Anyway my son was born at 34 weeks when I stopped responding to the IVig and he was born with a count around 90 which dropped to 21 and he had IVig and has been great every since! He's just away to start school.

So here i am again - 5 years later. Only this time I am pregnant with twins!! My haemotologist loves me!! I am currently 20 weeks pregnant and my count staretd to drop around week 12. 4 weeks earlier than last time. I'm worried that I may stop responding earlier as I started having treatment earlier. I've had 2 treatments so far. I respond well and count shoots up to a peak of 200 and lasts about 18 days. i've yet to have a full cours erthough because I've had a terrrible reaction both times. My first dose was over 2 days and I only managed 1 and the 2nd time we tried a 5 day course taking it more slowly and I only managed 2 days before the headaches began. Horrible horrible headaches. Anyone else experienced them? It was like something was contracting and expanding the the back of my head and hurt if I moved my head. I had the shivers and shakes as well. :(

So now I'm due round 3 and I'm trying a different brand of IVig to see if I have a better reaction. I hope so. I've had this so long that I'm usually fairly blase about it but for some reason this time round I feel pretty down about having to go through this all again. Maybe because I've done it before? Maybe becasue my son is on holidays and I'm missing out precious time with him before he starts school? I really am not sure. Maybe I'm just hormonal and feeling sorry for myself. Who knows?!!

ANyway I just though I'd come here and say hello as I figured you ladies would understand where I'm coming from.....

Susan x

Please Log in or Create an account to join the conversation.

12 years 9 months ago #17226 by brittany
Replied by brittany on topic Re: Hi there
i was diagnosed with ITP during my pregnancy and was treated with prednisone(wich i hated- swelling,acnea,mood swings) When I delivered my son he had to stay at hospital due to very low plt counts. he was given multiple IVIG treatments and was able to come home after 9days. He is perfectly healthy now thank god!
After my delivery i became very ill (we assume from low immune system, i had appendectomy, c-diff, other probs).
my son is 19months old and i still live with ITP (which hemo told me it would most likely go away after pregnancy)
I get IVIg evry 2month approx when my platelets drop below 40...
yes frustrating! lol
i experienced headaches but i think from the prednisone and maybe my gestational diabetes. now my headaches are from the IVIg i think

Please Log in or Create an account to join the conversation.