Hello!! Back after long remission

Hi all!!

I’ve been mooching around the site today and recognise some names. Hi to everyone!

To those who don’t know me... my story in a nutshell... had baby #1 no probs. Got itp. Tried for baby #2 for 2 years. Finally had him and pregnancy seemed to put me in remission. He’s nearly 3 now!!

But I’ve got the tell tale symptoms creeping back in. Unexplained bruising, a few scattered petechia.

I’ve been feeling pretty stressed out. Both kids have just had chicken pox so I’ve been quarantined with them. Haven’t gone out for a blood test. And I’ve been postponing my haematology review for months... I asked to be discharged 12 months ago and they keep sending for me..... Maybe they do know best!! Lol!

Anyway... have a review on weds, am prepared for a lower count and trying to psych myself up for the fight if necessary. Last time around they insisted I was hospitalised if my count was below 30... not a chance that is happening this time around!!!

Anyway... just thought I’d say hi whilst I’m sneaking around & catching up with people’s journey!

Welcome back (though of course it is too bad that you are dealing with the ITP again!)

Congratulations on the nice remission! I just wanted to concur on your assessment that you do not need to be in the hospital for counts below 30. Don't let them try to do that to you, especially with young children.

Really the main issue is what kind of symptoms you are having. My last count was 11, but I have determined that I'm not going to change my treatment (currently on 25mg of Promacta) unless I get blood blisters in my mouth. For me that is my "it's time to do something about these counts" symptom. Everyone is different. If you are having runaway monthly cycles and excessive blood loss or massive nosebleeds, then you are probably going to want to look at some treatment options. If your counts are even vaguely near 30 and you just have some bruising, you may be fine with just checking bloodwork and doing watchful waiting if you don't have more symptoms. (Sidenote: a count of like 24 and 30 just aren't that different, even though many doctors have "line in the sand" count numbers that determine whether or not they will do something. I think that mentality is pretty silly, and you need to evaluate symptoms and count trends instead of just "oh, we got a single count of 25, time to do a massive intervention!")

Just wanted to say hi and stick to your guns about minimal treatment. Don't feel bad about not managing the ITP in the interim with a hematologist either. I've had ITP since I was a kid and went through long periods while in college or young adulthood when I wasn't following up with anyone. My body definitely lets me know when my counts are not sustainable and require help :lol:

Hi Kat! I remember you! I'm glad that you've been doing well. I hope your counts are not back down....please let us know! Congrats on the babies!

Hello Katsim.
I'd say you are living proof that when it comes to ITP and pregnancy, ANYTHING can happen. Pregnancy causing remission?? LOL, it's like sometimes down is up and up is down and one doesn't know when.

If counts are low, isn't the easiest thing to do is either 1) get pregnant, or 2) take birth control pill and steroids long enough to cause another partial remission? Ok, maybe #1 isn't a good choice, LOL.

Momto3boys - yes! That’s the pep talk I need. I used to be all over this and turned up to a second opinion armed with all my research downloaded onto my kindle! Lol! So far it’s just bruises - I’ve had these before so I’m not too worried. I can’t recall what my “panic now” symptom was... hmmmm.... I only really remember my legs and arms covered in petechia when my count was 1. Bit late then though... haha! I might dig out my old notebook, I’m fairly sure I made notes at the time.

Sandi - hi again! I will update you - my appointment is tomorrow. No new bruising etc so maybe it was just a randomly off week?!

Hal - LOL! The side effects of option #1 are too much to handle. Haha! I can manage babies beautifully... but longer term I now have two children who have learned to argue with each other! (Think: “your hand is in my space” type arguments!). Option #2 is sounding promising

Ah, thanks for posting! Hope you are all doing well

just got back from the hospital. I have a new consultant! Young and very aware of how protocol has changed in recent years... I think I still impressed him with my run down of the last 6yrs of my ITP! Lol! I was so psyched up for an argument I gave him the full run down, in detail!

Anyway... long story short is that it’s a false alarm. My count is 51 which is lower than it has been for a while but still a number I’m very happy with

I’ve always had symptoms when I’m on or around 50 - I have guessed it’s clotting factors changing around that figure. But anyway... it’s all good news.

That's good! I'm glad you like the new doctor...it makes a world of difference!