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Heavy menstrual bleeding 9 years 8 months ago #31602

  • monisha
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Hi all
I am new to this forum.I have ITP from the age of five.I had initially taken steroids as there was no improvement my hematologist advised to stop.My platelet count always lies between 10-30k.After the age of 13 I got bleeding problem.So my doctor advised to take birth control pills.Last year those pills also not responded then I was prescribed danazol(200 mg) and azathioprine(50 mg). I getting vomiting sensation when using azathioprine,so I stopped.Currently I am taking danazol only and it stopped my periods for past six months.Now my platelet count is 6k.

If any one come across the same bleeding problem.Kindly let me know how you overcome this problem.
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Heavy menstrual bleeding 9 years 7 months ago #31904

  • 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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When my counts were low and I had heavy bleeding, I was prescribed a BC pill called Provera. It stopped the bleeding completely. Maybe you could try that or something like it. I'd talk to your doctor.
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Heavy menstrual bleeding 9 years 6 months ago #32538

  • Jaymee-Lee3007
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When I had ITP my doctor prescribed me with a drug called tranexamic acid. It reduces the heaviness of your period a lot without completely stopping it. I had no side effects from it and I can't think of any side effects that my doctor told me. All you have to do is take the tablet for the first 3 days of your period. I'm not sure if you wanted a drug that would completely stop it or not, but I hope I helped! :-)

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Heavy menstrual bleeding 9 years 6 months ago #32556

  • Vdeutsch85
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Monisha,

I am on Apri right now, which has really helped reduce the amount of bleeding during my periods. It really has been a lifesaver!
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Heavy menstrual bleeding 9 years 5 months ago #33798

  • monisha
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Thank you

I am using tranaxamic acid for more than 9 years.It reduces but it longs for more than a month sometimes.

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Heavy menstrual bleeding 9 years 1 week ago #37998

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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Just started BC last mouth along with Tranaxamic Acid. Yesterday started period but last week I spotted the whole week. Started full blown yesterday, I can tell the TR-acid works. After the first pill or twice it has slowed down a good bit. My husband has said I look very white, last month I bled for 3 full weeks until I started the BC and Tr-acid. But I am going for CBC on Wednesday, I also have a nasty headache.

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Heavy menstrual bleeding 9 years 1 week ago #38025

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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The periods are awful sometimes with itp and I can't take birth control I just wanted to let you guys know in an emergency I am given mergesterol it stops the bleeding until your under control I ended up in the hospital almost three years ago with two pints of blood left and this stuff saved me it's not for long term just thought it might help someone

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Heavy menstrual bleeding 9 years 1 week ago #38062

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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I've been bleeding for 2 weeks now, I'm now on BC and last week was spotting. Really started up on Sunday, Monday & Tuesday heavy today and yesterday light. Counts yesterday 10K (they are also testing my iron) will get re check on Friday.

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Heavy menstrual bleeding 9 years 1 week ago #38066

  • Rob16
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I know this is 'Secret Women's Business' but maybe I can be helpful here.
Not all BC is the same. Some is progesterone based, some estradiol, and some is a mixture.
Sandi takes Provera, which is completely progesterone based, with excellent results.
Vdetsch85 takes Apri, which I think is a mixture, and says it helps.
Kelirae24 took mergestrol acetate in an emergency to control bleeding. Megestrol is a man-made progestin similar to progesterone.
Ellen (pre-ITP) was taking straight estrogen (replacement) without progesterone and developed heavy bleeding. Her doctor had her scheduled for a D&C when I learned of the role of progesterone/estrogen balance wrt menstrual bleeding. She discontinued estrogen and began using natural progesterone cream, and her symptoms disappeared completely; and she avoided an unnecessary medical procedure. Once again it pays to know more than your doctor (but don't tell them that!).
If you are having heavy bleeding, you might want to switch to Provera or another progesterone based BC. Also: progesterone-containing IUDs; natural progesterone cream.
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Heavy menstrual bleeding 9 years 1 week ago #38071

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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Thanks Rob

I will look into them, I just got another call back doctor wants to do iron infusion 12/5 and 12/12 (will be there for about an hour). That was the first availability (at least I know why I'm always cold).

I know both ways BC's and iron don't have a effect on my counts (nurses have told me that many times). But I know having heavy periods can make my iron low...

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Heavy menstrual bleeding 9 years 1 week ago #38081

  • openhanded
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Hey Amber,

Have you looked into getting a Mirena? I have one, and it's made my periods almost nonexistent.

It's used to treat heavy periods, endometriosis, and anemia. If you can get passed the insertion pain, it's generally smooth sailing after that.

-Kristina
Diagnosed: August 2013, lowest count 2k.
Treatments: IVIG, Prednisone, transfusions.
Current Count: 233k, 12/23/2013.
Currently: Watching/waiting.

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Heavy menstrual bleeding 9 years 1 week ago #38083

  • Rob16
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Mirena releases Levonorgestrel, which is in the same family of hormones as progesterone. That is why it reduces uterine bleeding.

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Heavy menstrual bleeding 9 years 6 days ago #38089

  • 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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Yikes! A man! A man!

Just kidding, you've been helpful, Rob. I took Provera years ago....about 13 years ago now. Only needed it once, put up with the bleeding most of the time.

I just saw a scary segment on Mirena. Many women are having permanent problems from those inserts. People with ITP have to be careful about BC since it can raise the risk of clotting. ITP can be a thrombic disorder as well as a bleeding disorder, especially after splenectomy or while using TPO's.

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Heavy menstrual bleeding 9 years 6 days ago #38095

  • Rob16
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I think that estrogen is the culprit with BC-related thrombosis. Progesterone alone appears to not cause these problems, at least not to the same extent.
The problems I have heard of with Mirena are not thrombotic, rather: sepsis, perforation, etc.

www.ncbi.nlm.nih.gov/pubmed/22872710
Assessing the risk of venous thromboembolic events in women taking progestin-only contraception: a meta-analysis.
CONCLUSIONS:
Published data assessing the risk of venous thromboembolism in women prescribed progestin-only contraception are limited. In this meta-analysis of eight observational studies, the use of progestin-only contraception was not associated with an increased risk of venous thromboembolism compared with non-users of hormonal contraception. The potential association between injectable progestins and thrombosis requires further study.

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Heavy menstrual bleeding 9 years 6 days ago #38103

  • openhanded
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I think that estrogen is the culprit with BC-related thrombosis. Progesterone alone appears to not cause these problems, at least not to the same extent.
The problems I have heard of with Mirena are not thrombotic, rather: sepsis, perforation, etc.


Indeed, I was informed of all of the risks with Mirena with perforation, embeddment, etc... and I definitely made the right choice getting it. I chose it because I wanted to avoid estrogen in my bc and with a lower dose hormone.
Diagnosed: August 2013, lowest count 2k.
Treatments: IVIG, Prednisone, transfusions.
Current Count: 233k, 12/23/2013.
Currently: Watching/waiting.

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Heavy menstrual bleeding 9 years 6 days ago #38118

  • 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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The problems I have heard of with Mirena are not thrombotic, rather: sepsis, perforation, etc.


Agreed. The women I saw had horror stories.

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