Broke a 5 yr remission. Back to the boards!

I was area51 on the old boards. I was diagnosed in the summer of 05'. I was treated with steroids and winrho. Modular helped stretch out time with treatments. I then got married & a year later was expecting our first daughter.

I was in remission ever since then (5 years), until recently. I had another beautiful baby girl on Jan 17th of last year. The last 2 months my counts have been low. Last month I had a count of 15,000 accompanied with hemmorage. I had to be annoyingly hospitalized to get winrho because of the black box warming.

5 weeks later I'm back to 16,000. No bleeding this time. I think my second baby girl took me out of the remission. I just got ivig for the first full dose (first dose was on the operating table with the emergency birth of my first--I had an anaphalactic reaction/was very scary). Doc felt premedication would fix that issue. It did. I had absolutely no side effect.

This morning I have a headache. Is that typical? How long does it usually last for everybody?

It is odd that in both pregnancies counts were around 80-90k. Like I said my counts continued to stay high after my first. But my second LO seems to have taken me out of that. Anybody had something like this happen?? Or are my immunities down?

Nice to be back! Um...sorta lol

Kara

Hi there Kara - first of all you all look amazing in the photograph.

One thing I have learned however about ITP is that there is nothing normal. What happens to one may not happen to another.

All I can say is that I have been diagnosed since 1994 and have periodic drops from time to time. This year being the most awkward and all I know is that yes, I did experience headaches/mini migranes in May. I had put it down to that since having had septicemia five years ago I then developed virtigo appears to have faded into migranes. It wasn't until Dougie's mother posted on another site that I linked the connection that the migranes may not just be innocent migranes but telling me of a platlelet drop. One symptom I do get since having had septicemia which I think the general doctors probably would tell me is panic. But I think it is more than panic. Last year I was tired of the symtom and innocently went to A&E and to cut a story short was had 37 platelets. If I had even thought it was a platelet issue I would have contacted Sheffield - I live in England.

Boxing Day was my next drop which recovered till end of May. Well I had been aware through out if being strictly truthful but sat on it. During Lent this year I did experience what only term I know the dr's say and StressPac people say is panic at one point. Later my platelets dropped. It could be panic in that my body senses the change somewhere... But it isn't conclusive enough for me to ring up heamatology team.

All I know is that you learn what is normal to you and then something changes anyway so it seems. I never had hemerohage so wouldn't know what is normal there. Just know that yes I have experienced headaches/mini migranes with ITP so it seems and so has one other poster on these boards.

Glad you knew how to get back here though you can post in between time as you might have an answer through your own experience that another poster may be looking for.

You have a fab familyB)

Gosh has it been that long? Amazing as I remember your having your first daughter as if it was yesterday and here you are with another. Welcome back, although sorry you have to come back.. you know what I mean.

OMG, it's hard to believe it's been that long, Kara! Congratulations on the new little girl. What's her name? What a beautiful family picture you've posted.

Until I started getting pre-treated for IVIG, I had severe headaches and would be down and out for the count for at least 3 days. Now, if I need a treatment, I get pre-medicated and the side effects aren't nearly as bad.

Good to see the update, but not the reason why.

Kara! Long lost family member! Sorry to hear about the counts, but very happy to hear from you. Congrats on new daughter - gorgeous family!

Nice picture, what a beautiful family! I remember you from before too, I was in remission from 2006-May 2011, my old user name was deedee53.

Yes, IVIG gave me terrible! headaches and felt flu-like after also. It did raise my counts though, but was only temporary.

Hey Guys!! Thanks so much for writing and it was so sweet that some of you remembered me! Thank you for all the compliments on my family..Feeling VERY blessed to have a wonderful family and still planning for more

So I didn't have the anaphalactic shock reaction to IVig like I did the first time but it was a delayed allergic reaction the next day (sinus headaches for 2 days, asthma in bad shape, congested, eyes itchy) but it only lasted a few days---and guess what?! My counts are at 242k!! I think we have found a new treatment for me. How long does the effects last for ya all?

My counts stayed in the safe range for 3 months after IVIG.