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Birth Control and ITP

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14 years 9 months ago #11177 by vanja1085
Birth Control and ITP was created by vanja1085
Hello everyone...

I'll just do a quick introduction as I just found this website and haven't had a chance to go through the posts and see if anyone has posted about this topic. I got diagnosed with ITP November 2008. I'm a female and was 28 at the time. My first treatment was 70 mg of prednisone and I continued to take that and tried to decrease with no success. My count at first was 9,000 and with prednisone went up to 200k +. But as soon as I tried to come off pred the count would go down. I was really tired of being on it, so I suggested to my doctor to try platelet transfusion. We tried it while on prednisone only because I was going to Africa for 2 months and I wanted to make sure that I had prednisone as it worked for me. This was November 2009. When we came back in February I slowly started to wean off of pred. In May 2010, I finally came off to see how my body would react. My count went down to 20k and stayed between 20k to 25k. End of July 2010 I had another platelet transfusion. A few days later I ended up in the hospital with extreme pain on my right side and I couldn't breathe. I ended up there for 9 days with blood clots on my lungs and was put on coumadin (sp?).. As I was in the hospital they wouldn't let me take any other medication so I stopped taking my birth control (Alesse 21). They told me that my blood clots were a result of birth control but here's the kicker. I've been off birth control since August 4th and now with coumadin my platelets are 95k. In october I decided to take an IUD but without any hormones. My platelets are slowly climbing up and 2 weeks ago it was 68k. Then for the past 3 days I stopped taking coumadin and did my blood tests yesterday and platelets came back at 95k. Now I'm wondering if all along this birth control was causing my low platelets. I was on it from October 2007 and I got diagnosed Nov 2008. I guess I just have to wait and see if it improves and cross my fingers. But it's some positive news and I'm hoping to give this as an option for all the ladies and something to look into as well.

Vanja
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 9 months ago #11180 by Sandi
Replied by Sandi on topic Re: Birth Control and ITP
It could have been the birth control. I'm curious - were you told to stop taking Coumadin?
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14 years 9 months ago #11182 by vanja1085
Replied by vanja1085 on topic Re: Birth Control and ITP
Hi! No I wasn't told, I'm just on vacation and forgot to take it. I went back on today. My doctor tells me to stay between 2-3 for INR so if it goes over, I reduce the dosage or skip a day. I'm supposed to take it for 6 months and I'm now finishing my 5th. I have to do another CT scan in couple of months to check for blood clots. Usually if I skip a dose I would feel the pain within hours but even though I missed 3 doses, I haven't felt anything. So maybe the blood clots have dissolved. But it certainly gives me hope that my platelets would go up on their own once I'm drug free. =)
14 years 9 months ago #11183 by
Replied by on topic Re: Birth Control and ITP
You know I wouldn't mess around with those blood clots & medication - I would carefully be doing what I was told. Blood clots kill! My cousin died 10 months ago due to a blood clot.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 9 months ago #11201 by Sandi
Replied by Sandi on topic Re: Birth Control and ITP
Tough thing to balance. I have had antibodies that cause blood clots, so I would actually prefer to have lower than normal platelets. I just take daily aspirin for now, but wish my counts would just stay between 50 and 150.