Hi all - I used to post here a little bit on the old board. Just coming for some advice & reassurance...
Backstory - dx'd with ITP when I was 10 - 19 years ago, on the heels of mono. Totally asymptomatic. Have never been treated, really (counts usually between 20 - 60K), minus one time to get some dental work done (Couldn't seem to sustain a count above 50K at that point - 3 yrs ago) - treated with WinRho - very limited success. Managed to get a 50 count long enough to get some root canals done - had no trouble (Last year, I took a bit of a calculated risk, and ended up getting more dental work done, without treatment, with zero problems with massive amounts of freezing - not my most responsible moment, but I've never had bleeding issues, so took the chance).
Since becoming pregnant - I recognised that I would be high-risk. I have a super wonderful high-risk OB/GYN plus a "Medical Disorders in Preg" (internal medicine) Dr. who is also very competent. I discovered early on as I was transferring my records from offices out of province, that my lab work came back indicating that my platelets were "very large". I vaguely remember this from when I was a kid. When I got my new OB - I requested we do manual counts, as I had done some research and found that the machine count can sometimes miscount oddly-shaped platelets. Suddenly, from the 37K I was sitting at previously, I had 60 - 65K!! I was pretty amazed as they seemed to be very stable and we all decided not to treat until pre-delivery (and even then we wouldn't) provided they stayed comfortably above 50K.
Last week after my CBC (count of 50K), I got a call from the Dr. that they wanted me to come in for treatment. I had decided early on that I was pretty opposed to being on Prednisone as I have had a family history of people really suffering mentally on it - plus they wanted to do a mg/kg and my preg weight is about 100kg.... I had an argument with the internal med Dr. about it, but my OB agreed to back me up, so we decided if treatment was necessary, we would use IVIG as a first course. I went into to hospital to get first round of IVIG. They came to do a CBC, I requested a manual count - the head of the phlebotomy refused to do it, and where my count had been 50K upon admission, it was now 29K. I figured, either way, no sense in arguing since more treatment would likely increase the odds of raising my counts. Sadly, not the case.
I went to the Dr. yesterday for my 39 wk check up - platelets at 44K (manual count). Got a machine count CBC yesterday, and I'm down to 25K. I keep making motions to insist on getting a manual count, but realistically, when I go to deliver - they will refuse, so I've resigned myself that it will just be better to compare similar numbers/methods - everyone is more comfortable with seeing the numbers go up and down in small increments, which is more likely the case if we don't switch between manual and machine counts.
She put me on Pred as follows (no argument here, I just want to be safe for delivery and have a healthy baby) - yesterday 50mg, today 60mg, tmrw 70mg, Sun. 70mg. (She did not think, with the time frame we are working with, that it would be responsible to put me on 100mg...I heaved a sigh of relief) She may want to induce me on Sunday depending on my counts and what my body seems to be doing.
I'm wondering if anyone else has had a similar dose of Pred (after other failed treatments) and what kind of results (if any) you experienced in the extreme short term? Did they have to taper you from such a short but high dosage? What are platelet transfusions all about? Is there any chance the IVIG may just be taking it's sweet time to work (had treatment on 18th & 19th Dec)?
I know realistically, I will have no epidural (which is why I'm not excited about induction), and if I need a C-section it will be under general anaesthetic, likely requiring a platelet transfusion...I'm just trying to wrap my head around what I can look forward to...
I consider myself very lucky to have had ITP this long and be so clueless about treatment. I read other folks' stories on here, and my heart goes out to them. I have very limited experience with the roller coaster of treatment, and for that I'm grateful. Thank you in advance for any advice you can offer & good luck with your own counts.
