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Stable count for 3 years now going down and scared 11 years 10 months ago #1647

  • capecod1217
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Hello,

I was diagnosed about 4 years ago with ITP, I am now 40 years old. I had been as low as 60,000 that they found and then had gone back up to the 90,000 range and was stable at that for 3 years. I went to the hospital last Friday for a hysterectomy and they had to stop surgery because my platelet count was 57,000. I have an appt today with a hematologist (this is a new one for me as I have just moved to a new state). I have never had to have any treatment before and now they are talking about putting me on steroids to raise the count so I can have the hysterectomy. After hearing what people have said - I dont really want to take steroids. I know right now my counts are high compared to a lot of people with ITP so I am grateful for that but very concerned that they wont stay that way. I just moved and I am getting married in September. I dont want to start my new life this way. I dont want my new husband to be taking me in and out of the hospital all time. I guess I'm just really scared as to what they will tell me today and how little options there seem to be for people with ITP.

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Re:Stable count for 3 years now going down and scared 11 years 10 months ago #1649

  • AmeliaP
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Dear Capecod,

Hello! Don't be afraid and don't worry! You need to have a better attitude and think
Positive! I am 69 years young! :) My first experience with ITP and low Platelets started the end of October 2008. I wasn't even aware of what I had. I was at work one day and my nose was bleeding like a post nasal drip all day. I went through 2 boxes of tissue. I went home that night to find a rash all over my legs and chest and black spots on my tongue. I thought I had allergies, so I went and got tested and found out I had NO allergies. I called my Internist. I went in to see her and she looked at me and called the Hematologist at the hospital. He said to send me right over. When I saw the Hematologist, he took a CBC test to check the Platelet count. My Platelets were under 10,000. He told me, I must have a guardian angel on my shoulder as for this low I could have had a stroke or bled to death. Shortly after the test, I was admitted and given an IV hemmaglobin to increase the platelets. Then I was put on 40 MG of Prednisone. Prednisone is a steroid. It does have its side effects. I found that for me, it put some weight on me, but that is all. I was told alot of women and men get this blood disorder later in life. My only down fall was that being of Italian decent, I inherited the Mediterrean Blood disorded called Thallessiam(Enemia). This is genetic. I also had a bone Marrow test and it came back negative. I have been dealing with this disorder since 2008. I am in Florida now for the winter months. My Hematologist in the north said he wanted me to be tested while I was down here so I go every 2 to 3 weeks.. I have been trying to take more vitamins and I take OMEGA3(it helps the Immune system)Eat more Antioxidant foods. Also, this disorder they don't know what causes it in people. As I have read and found this site, I am AMAZED to see all types of people from children to Teenagers and us Adults with it. I can tell you my platelets are at 114,000 and 2 weeks ago they were at 61,000. I just went back on Prednisone 2 weeks ago. So you see, it will work. Your Hematologist will adjust the Prednisone. There are other medications out there that will increase Platelets. As you know drugs are very costly! Prednisone is inexpensive and it works. You need to have a better outlook and have some High Hopes. There are alot of people and alot of stories of what ITP and low platelets are doing to us. Keep the Faith. Prayers are a good start! The Lord is with you! Keep the Faith.
Amelia M Petre

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Re:Stable count for 3 years now going down and scared 11 years 10 months ago #1656

  • tortie
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Capecod: I'm having surgery in a few weeks and I'm only getting an IV of winrho. You can ask your hema for a temporary increase in platelets by using either IVIG or Winrho instead of pred. Most of us here with experience wouldn't take pred for counts above 30 or 40k unless there were bleeding symptoms. Hopefully they're only thinking of putting you on pred for short term and only for the surgery.

Amelia: be cautious about omega 3 and low counts. Everything might be okay with lower counts but if you notice more bruising it can be from things like omega 3, green tea etc.
If you're not having more bruising then keep on using it. I just wanted you to be aware that it can make a difference in clotting. I have experienced this when my counts are under 20k, I don't take it as often. My aunt use to snowbird to Florida and I would go visit once in awhile, I miss that. Hope you're loving it.

Michelle

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Re:Stable count for 3 years now going down and scared 11 years 10 months ago #1669

  • capecod1217
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Thanks so much for the encouragement. It sometimes seems overwhelming to me but I do know that I am very lucky that my counts aren't lower and I am grateful for that. I am trying to think positive and once my count is higher and the dr. is willing to do the surgery, I will feel much better I am sure. I just hate feeling icky everyday and I do know that the hysterectomy will help a lot of the pain and general unwell feelings. I am very glad I found this site, it's nice to talk to people who know what a platelet count means and how scary the initial diagnosis can be.

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Re:Stable count for 3 years now going down and scared 11 years 10 months ago #1670

  • capecod1217
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Thanks Michelle,

Yes they have decided to put me on the high dose of steroids only for 4 days to see if my counts go up.. then they will know if I respond to that treatment and if so then they will put me back on for a day or two right before surgery. The hematologist I saw today was wonderful, much better than the guy on Cape Cod. I was a little nervous being here in KY not knowing the Dr. I just cant wait to get the surgery over so I can start to feel better, the symptoms from the cyst and other issues going on just make me feel horrible most of the time. I am much more encouraged now and hopefully the counts will go up to a level the Dr. is comfortable with. Thanks so much for the advice.

Tami

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