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TOPIC: After 2 years of no issues...nosebleeds

After 2 years of no issues...nosebleeds 1 month 3 weeks ago #66213

  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
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On April 15 I "celebrate" 2 years of ITP being in my life. Please read that with as much sarcasm as possible. So, I have been as low as 10 but I showed no signs of being low. Never dealt with bruising or bleeding (outside of my major bleeding event when I was diagnosed). I did deal with exhaustion but that was it. I had a CBC last week and I was at 63. All of a sudden last week I started getting spontaneous nosebleeds. At first I blamed a change in weather and told myself my count was just checked and was ok. In the past 4 days, I have had 4 nosebleeds...sometimes in the morning sometimes at night. They typically last between 15 to 20 minutes and do eventually stop. Is this something that I should be worried about? I go for another CBC in 3 days...just looking for advice pleae.
I am afraid to call my doctor...I have a lot of anxiety about this especially so close to my "anniversary ".
Thank you!
Mandy
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin

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After 2 years of no issues...nosebleeds 1 month 3 weeks ago #66214

  • poseymint
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Good that you are getting your counts checked soon! Thats the only way to know. That said, are you having other symptoms like petechiae, bruises, or blood blisters in your mouth? or bleeding gums when flossing? People get nose bleeds that have normal platelet counts- as you know, so it might not be a crash. Could be from dryness.

Another question: Are you taking anything that is a natural blood thinner? Omega 3/fish oil supplements cause me to have big bruises. Also turmeric is a blood thinner that I get bruises from. Ibuprofen and aspirin knock out the effectiveness of platelets. I currently am all bruised up from taking Advil for neck pain- I look like my counts are under 10! But just got them checked and they actually are higher than usual at 109. Good luck and try not to worry- If they are stopping in a reasonable length of time, thats a good thing!

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After 2 years of no issues...nosebleeds 1 month 3 weeks ago #66216

  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
  • Posts: 23
  • Thank you received: 3
Thank you for your insight! I am not having any bruising or petechiae. My inner bottom lip feels bruised which sounds stupid but I am an aggressive brusher. That has been ongoing and my doctor said he is not concerned about that. I am hoping that it is just dryness! Last night I rubbed a little neosporin inside my nose and woke up without a nosebleed today so I am hoping that is a good sign!
I am taking a prenatal vitamin because we are hoping to start trying to get pregnant in June, as long as all is well. That has fish oil in it but I have been taking that for a while with no issues. Other than that I have taken nothing to promote bruising/bleeding.
Thank you for your help! Good luck to you! Mandy
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin

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After 2 years of no issues...nosebleeds 1 month 3 weeks ago #66239

  • karenr
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Mandy, here is what I just posted on the General Issues thread about nosebleeds:

Diagnosed with ITP in 2000, I have had major nosebleeds since 2011. In 2014, I asked my hema about transexamic acid, and he replied:
" I would not recommend transexamic acid - it is approved for use in patients with hemophilia, not ITP. It has been associated with serious blood clots."

Here are techniques I have used to stop big nosebleeds (the kind that last 5 or more hours):
I have nosepinchers so that I can have free hands sometimes during a bleed. Nosepinchers do not not usually provide enough pressure to stop a bleed, but it is good to be able to use your hands at times. When a bleed starts, I spray my nostrils with decongestant spray like Afrin (this causes capillaries to constrict). Then I spray hemastatic gauze (like BloodStop products) with decongestant spray and insert into my nostrils. I've also used the BloodStop plugs. I apply firm pressure. If the source of the bleed is high, pressure doesn't help much, alas. I use ice on my forehead and the top of my nose as well as on my nostrils. I keep a waterbottle nearby with a straw--important to keep drinking water. I keep my nosebleed kit (pinchers, hemastatic gauze, Afrin) near me at all times.

As soon as possible after a bleed, I contact the head-and-neck people, who cauterize any bad spots they see. Chemical cauterization lasts a while, usually. Electrical cauterization--which is very uncomfortable--produces longer lasting results.

I keep my nostrils moist with products like Aquagel (vaseline okay, but heavier) and nosesprays that aren't solely saline. I also use a steamer to keep my nostrils moist during dry days.
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After 2 years of no issues...nosebleeds 1 month 3 weeks ago #66241

  • Antsonparade
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  • I was diagnosed with ITP in May 2017 after being rushed to the ER with a hemoglobin level of 4 in April. I had surgery to stop the bleeding and received 5 units of blood and 3 units of platelets. I had my platelets monitored weekly and in May I dropped t
  • Posts: 23
  • Thank you received: 3
Thank you so much for your suggestions! Thankfully they have not lasted hours but I like to be prepared for everything with this because things just seem to happen so quickly! I think i will be getting a kit together just in case...even if i just keep it in my car that would be good. One of my biggest fears is for this to occur while i am driving.
We do have a humidifier in our bedroom and at my office and it seems to help!
Thanks,
Mandy
-Mandy Diagnosed May 2017, IVIG in May 2017, Rituxan Aug. & Sept. 2017, lowest 10, highest 461 after IVIG "You are braver than you believe, stronger than you seem, and smarter than you think..." Christopher Robin

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