ITP and blood clot

Hi everyone!! Has anyone here with ITP ever had a blood clot? Long story short, I moved 6 months ago and had to start seeing a new hematologist. My counts have stayed at the 80-150 range on their own. About 3 weeks ago I got sick, had a nose bleed for 2 days, other bleeding symptoms, and my counts plummeted to >4. My hematologist basically freaked out a little and threw at me: 2 IVIg treatments, high-dose dexamethasone (steroid), and Lysteda (similar to Amicar but cheaper)*. 4 days later I had a horrible pain in my leg and 2 days after we discovered I had a blood clot. So essentially the low platelets were over-corrected.

So now I am on Lovenox injections, an anticoagulant. Kind of scary for someone with ITP. SO what I'm asking is - has anyone else with ITP had to go on an anticoagulant, how long were you on it for, and did you have an adverse reactions or episodes (i.e. platelets then going too low, etc)??


*side note: I realize I should have been more forceful in insisting that one IVIg treatment always does the trick when this happens, but she also should have been familiar with my history records and known that. Also, I had horrible side effects from the steroid - I would not recommend it and I will not ever take it again.

Yes, others have had blood clots for various reasons. Some people with ITP are actually more prone to clots than people without ITP.

You can do a search to find other threads that might help.

KD, what was your platelet count when you had the blood clot? Had you been sedentary before the blood clot?

I've never had a blood clot, but I have been on anticoagulants twice--once after each knee replacement. This is standard because some people don't move enough after a replacement. First replacement, I had Lovenox, for 3-4 weeks. That was not fun, giving myself shots three times a day, but I had no other problems. This last time (November 2012), the doc felt that Warfarin (Coumadin) was safer than Lovenox, but I had trouble keeping my numbers even because I couldn't keep my diet uniform. (Right after surgery I had trouble eating anything, and then I had trouble regulating my greens.) Doc decided I was at low risk for blood clot, so took me off Warfarin after two weeks. My platelets didn't seem affected by either anticoagulant. In both cases, my platelets were unusually high because surgery confused the organ destroying my platelets. I was too uncomfortable in both cases to be sedentary--I moved around a lot.

2 days before the ultrasound that found the clot my counts were 350K.....and that was 3 days after all the infusions and medications, so there's no telling what my counts were 3 days earlier. I had been pretty sedentary that week due to being sick and having a constant nose bleed, but I am usually very active - work out 5-6 days a week. My counts yesterday were 127, so they are slowly coming down but then again, they may go up again as they sometimes do on their own.

Thanks for the input! I am definitely over giving myself a shot every day and will just feel better once I can come off the injections. My doc wants to do another ultrasound tomorrow and I have a feeling (hopefully) I'll be able to come off it then since my leg has not hurt in over a week and it wasn't deep vein to begin with!

KD, have you done any research on Lysteda? This drug is suppose to clot your blood. At least that is what I've heard about Amicar. I would do a little research on this drug to see if this helped contribute to the blood clot.

Just sort of my thoughts. I know with ITP we are all prone to blood clots. (By the way, during July/August 2010 during my last episode of ITP, I think I had IVIG at least 5 times!)

Good luck to you and hope you are feeling better.
Dee Dee

DeeDee,

I did do some research on Lysteda. I'm pretty sure it was just the combination of everything considering 1 IVIg does the trick - I should have just put my foot down as my doctor obviously did not do her homework on my history. I was just happy she was doing anything since at about hour 36 of my nose bleed she told me it was not a blood problem and I needed to see my primary care. Although, I have been hospitalized before with an infection and had 3 IVIgs within 4 days and didn't get a clot, so likely one of the other medications or combination!

I did regular IVIg treatments for 10 years, anywhere from every 2 weeks to every 2 months). When I moved and started with this doc we stopped that and my counts had been fine (80-150) until I got sick. Personally, the scary part for me about being on an anti-coagulant is that my ITP has never been in remission and it's always a crapshoot as to what my counts will be (could be 250, could be 30 on any given day).

Thanks for the input!

Kd,

Glad you are feeling better. Considering you have had ITP for 10 years, I think you are going fairly well! Since your platelets don't usually go below 30, I wouldn't worry too much. But, like you said, it could have been a combination of the medication; you just never know with ITP.

Good luck to you and hope you continue to do better and feel better!

I was diagnosed with ITP on Dec. 19, 2012. By Jan. 23, I was in the hospital with a platelet count of 22 (it was either 22 or 16, I can't remember which) and pulmonary embolism thanks to the dvt in my right leg.
Confused the heck out of me. Confused the heck out of my doctors. It didn't seem like there was enough time to stop and ponder "why?" within 45 minutes of the CT scan that found the blood clots in my lungs I was started on heparin and in the ICU.

Eventually, I got to come back home and now I do injections of lovenox twice daily, which my doctors estimated I would do for at least the next five months. Yuck!

Did it scare the heck out of me? Definitely. I'm not as worried anymore. I do CBCs Mon. Wed. Fri. to make sure my platelet count stays up. If it falls below 75, I'm the lucky winner of more IVIg.

As everybody said before me, it's not rare. Once you get over the initial "how the heck did this happen?!" shock, everything goes back to normal.

If you want to compare lovenox horror stories, I'm around!

Hi Kay,
Do the doctors know what caused the blood clot? I am not sure what a "dvt" is. Your platelet count isn't really that bad. Mine went all the way down to 1 and stayed there for 10 days. Nothing would budge it for a while, not even the IVIG.

Does the lovenox keep you from having further blood clots? Everybody does have a different story to tell.

Good luck to you.
Dee Dee

DVT - Deep Vein Thrombosis

You have to keep counts up in order to use blood thinners. Sometimes it's a tricky thing to balance.

I was placed on blood thinners (Lovenox and Coumadin) this past summer after having an abnormal VQ scan that showed perfusions in my lungs. My platelet count was in the normal range at the time, and we're still chasing that abnormal VQ scan, with the top radiologists at one of the top hospitals in the US nagging my pulmonologist to repeat the lung scan, pulmonary function test, and echo because they refuse to believe I had no symptoms despite all of the perfusions. After 10 days on blood thinners, we repeated the VQ and I still had perfusions. I'm repeating the scan again this week, along with the echo and pulmonary function test. I'm curious to see what they find now that my platelet count has dropped.

Being on blood thinners TERRIFIED me. The only problem with bleeding/clotting I'd ever had was the ITP, and all of a sudden I was on a medication that could cause bleeding. The smallest sign of bleeding (nose bleeds, petechiae) flipped me out. Luckily I did not have to be on blood thinners for long because they did not have any impact on the perfusions, but I wanted to say that your fear is completely understandable, at least to me.