Initial Count 6,000 after 'virus' like symptoms...

So, my name is Bridget and I'm a 34yo mother of a 16 month old wonderful baby girl, Loralei. Around 7 months pregnant, I began getting symptoms of what was later formerly diagnosed (after the pregnancy b/c they couldn't do anything while pregnant) as Ulcerative Collitis. I was given Asacol HD as a treament 14 months ago literally was symptom free within a month. This past April, my husband and I had a little 'too much fun' during Mommy/Daddy time and I ended up pregnant again. My symptoms of the UC began almost immediately and much more severe than the last time. I felt something was very different this time and unfortunately miscarried at around 7 weeks. From that point on until recently been struggling to control the UC with various different meds, but nothing seemed to be working this time, in fact, my bleeding was so bad (rectally, sorry), that I was constantly calling my GI only to go sit in her office and get a new med with same results. Bloodwork was being done, but nothing was showing....let's ff to the week of Sept 6th......My daughter was getting over a virus she picked up at daycare. I started really feeling horrible, fluish, around that time and started with no appetite, super tired and then not being able to keep anything in at all. That Thursday, the 6th, I was seeing double and my boss insisted that someone bring me to the hospital as I looked that poorly. Well, by the time I got there, I was shaking and in pain.....very disoriented and just couldn't really even sit up straight. They doped me up with morphine, after me asking not be....and then started with tests. They came back in shortly after the first draw to inform me that they had to re-take my blood b/c the results were too abnormal and they thought that there was a mistake made. Said my platelets were at 9,000. When they came back, they said, they had actually dropped to 6,000 (in this time, I was constantly going to restroom and I even told them that it felt like I was just 'bleeding out'). They did an xray and ruled out internal bleeding as my other counts were normal. They almost immediately paged my primary and he ordered a round of steroids (prednisone) to try and jump start the platelet production. It seemed to work very well, aside from the steroid induced psychosis it caused in which I wanted to rip my own face and everyone else's off (que the large dose of ativan to make me even more confused). My platelet count went up to 47,000 within 2 days and kept climbing. My symptoms of the virus went away and they discharged me after 4 days with plans to follow up with my NEW GI (one that actually listened to me), the hematologist that had my case, and my primary care. My GI did a colonoscopy/endoscopy and barium contrast and ruled that my UC looked very controlled (probably from the steroids too, which I'd never had) and that I could probably stop taking the Asacol HD that I was back on (which, I found out per the information pamphlet, CAN cause ITP). So, last week, I felt a little weird and crampy...I had an extra pregnancy test left in the cabinet and well, did the test and it came up positive! (I guess the celebration after the hospital stay did me in..... I confirmed with a blood test last Friday in which I had to scramble to call all the dr's to find out what to keep taking and what to stop taking. I seemed to be doing very well with the steroids, now with counts over the 200,000 range.....until today. I've been doing weekly blood-draws, and have been on 30 mg of prednisone/day (along with ativan, zoloft, culturelle, prilosec, and until recently, asacol HD). I went into the hematologist today (have an OB appt tomorrow) and got my blood drawn per the usual and redid my HCG test for pregnancy to make sure the hormone counts went up. My Dr. assured me that they were very confident the case of ITP was isolated and virus related and that I could start my taper off of prednisone. This was so exciting as I also stopped ativan, zoloft and asacol hd and was just happy at the notion of a healthy, drug free pregnancy. Well, later this afternoon, my GI called me to follow up with her conversation with my Hema. My platelets dropped from last Wed from 200,000 to 120,000 today......so no taper....and now, no sure virus-induced ITP. More like I have it, so now we need a plan. So, now, I'm only about 3 weeks pregnant, and I'm scared, and I feel angry and confused and really don't know what to feel about this entire process. I feel like my initial GI completely ignored warning signs that I was clearly communicating and that I could have possibly been treated a while back. I guess I'm just looking for anything at this point....... even if it's a virtual hug

Bridget:

Hello. It's very possible that the virus triggered the ITP, but sometimes the ITP does not just go away when the virus does. It might take something to bump you into remission, such as a longer bout of steroids or another treatment. This can take some time.

You feel that your GI could have treated a while back - do you mean ITP? If so, it wouldn't have made much difference. Treating now or six months ago would probably still have you in the same situation (unless I am missing something).

You are doing the right thing at the moment - monitoring and treating. There might come a time when you get fed up with the steroids and at that point, you start looking at other treatments. In the meantime, try to relax. We've all been where you are and it does get better.

Sorry I had to laugh a bit with your "mommy/daddy" time comment
There are many things that can trigger ITP. Chemicals in the food we eat and the air we breathe or meds taken. I feel mine was triggered by a virus and further comprimised by depression. As Sandi said, a virus could have triggered it, but counts will not necessarily rebound once virus is gone. A treatment may be needed to kick start the count again. Try to relax!! Stressing out over it will not help you!! It will get easier!! Virtual HUG!!

So, my platelets dropped again this week. This time down to 77,000. I can only loose 27,000 to hit the minimum threshold (50,000) for a safe pregnancy. I'm still on 30 mg of prednisone/day. Also, my UC symptoms subsided for a little bit and my GI Doc told me to stop my meds for that b/c they were unneccessary. Now, though, those symptoms have returned as well. My Hema does NOT know why I am failing the prednisone and I'm waiting to hear if I have to be readmitted. I'm so frustrated and scared

Bridget:

Many patients find that counts drop after tapering. Your hemo should not be surprised about that. Happens all the time. The higher the dose, the better the response. When the dose goes down, sometimes the platelets do too.

There are a few other treatments that you can try if need be. I hope you have a high risk OB/GYN.

At this point, you need to stay calm. I know that's hard. Many women here have had successful pregnancies with counts much lower than 50,000. Of course it's not the ideal situation, but it can be done. It's important to have good doctors who are experienced with ITP. Miscarriages do happen, but they are usually not ITP-related. Some women have a disorder called APS and two of the symptoms are low platelets and miscarriages. As odd as it sounds, it actually causes blood clots, even with lower than normal platelets. This might be something to bring up with your hemo; it wouldn't hurt to get tested.