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  #1  
Old Fri Dec 4, 2009, 01:54 PM
B-OK B-OK is offline
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Unhappy Blocking of periods, low platelets and oral contraception

Hi all,
I am 7 months after splenectomy and 5 months after ATG on 300 mg CsA, my counts are rather low however they are steady for about 4 months: Hb 8.4-8.9; WBC 2.5; Platelets 28-35
I was prescribed contraceptive pills to block my periods because of low platelets, I was taking them without stop for about 5 months, actually all this time I was having breakthrough bleedings so I decided to quit taking pills and have normal periods, they were very heavy and lasted for 10 days at least, after they are stopped, I have no more bleedings and wanted not to take pills any more, however my platelets went down to 18 and I had transfusion.
So I consulted gynecologist-hematologist and she told me to start taking contraceptives without stop again. She also told me one strange thing that on Csa I should take them till Csa is tapered otherwise I may have menopause beforehand
I am a bit confused, sounds strange, does anybody get in touch with similar problem? How your doctors cope with low platelets and periods?

Appreciate yr help,

Yuliya (27 years)
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  #2  
Old Sat Dec 5, 2009, 12:42 AM
Hopeful Hopeful is offline
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Hi Yuliya,

There is an interaction between Cyclosporine and birth control pills. According to the Gengraf pamphlet, birth control pills increase Cyclosporine concentration. So, maybe when you stopped taking the pill, your levels dropped and so did your platelets. This is just my theory but would explain why your doctor wants you to stay on them the whole time.

I was not on the pill and am taking Cyclosporine. My periods were MISERABLE when my platelets were low. Although it FELT like I was bleeding to death every month, my platelet counts never dropped significantly during my period. So, I think there is something else going on with you that may be because of the Cyclosporine/pill interaction. Have you checked your Cyclosporine levels recently?

I've never heard of the risk of early menopause, but than my hematologist is not a gynecologist, and I am 43.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Sat Dec 5, 2009, 12:11 PM
KimO KimO is offline
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Maybe Lupron?

My daughter had her ATG treatment at 19 and at the time had a period that they could not get to stop -- even with a double dose of oral contraceptives. The gynecologist said it was the combination of a fibroid and because her liver was stressed from the cyclosporine and the contraceptive was metabolized by the liver. She ended up treating her with Lupron, which is a shot that basically puts your body into menopause for three months. It's very expensive but it did the trick. She received that once every three months over I think it was around 9 months to a year. By that time her counts had recovered enough that they switched her to oral contraceptives to keep her period light but let her have her period normally. Normally I would have been very against messing with her hormones to that extent but we had already ended up in the emergency room with hemorrhaging and did not want a repeat of that experience.

Kim O. - Mom to Shauna, SAA 10/07, ATG 12/07, counts in normal range and off cyclo 4/09.
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  #4  
Old Sun Dec 6, 2009, 08:59 AM
squirrellypoo squirrellypoo is offline
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I was on the pill prior to my bmt apart from the cycle of Ivf I had to do yo freeze embryos (god the older women don't know how good they've got it doing this stuff later in life!), but I'd been on those for years so my dr just said to take them back to back. Since my transplant they've had me on Norethisterone to stop my periods (but it is not a contraceptive) so as to not affect my counts. I've not had any side effects from them so for me it's been great - so much less hassle than periods and the pill - I'd take it for
life if I could!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)

Last edited by squirrellypoo : Sun Dec 6, 2009 at 09:01 AM. Reason: Stupid iPhone autocorrected ivf into OCD!
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  #5  
Old Thu Dec 17, 2009, 12:23 PM
Missyblue Missyblue is offline
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I am a 48 year old female and I was Dx 11/07. At the time I was Dx I was having very heavy periods and was miserable. After the ATG treatment I had a 2 1/2 month period, I would get transfused and it would go right through. My Gyno put me on Zovia (strongest oral contaceptive) 2 x daily and I still had breakthrough bleeding. In June 08 I had an inter-uterus ablation (past child bearing years) and still had breakthrough bleeding they then put me on the Depo Lupron every three months for a year, my last shot was July 09. I have not had any bleeding as of yet but I have had hot flashes from hadies and they think an accumulation of everything has put me into menopause. If you get the Depo Lupron shot get it cleared through your insurance first because they are very expensive ($2200.00 per shot).
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Melissa, diagnosed VSAA 11/07, ATG 11/07, Dx PNH 01/09: Off Cyclosporine, Counts stable but low
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  #6  
Old Sun Dec 27, 2009, 01:19 AM
Deanna16 Deanna16 is offline
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hi there! when you day " Platelets 28-35" does that mean when you get your lab work done the platelet line says 28 or whatever number?? Mine reads 136 (which my lab and doctor consider low) i'm just new to all of this and trying to understand if it's a real number your sharing or a decimal. (I have a good handle on RBC and WBC as they have been what I am use to showing up as low...trying to understand the platelets now) )
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~Dee~ ) 29yr, wife and mom of 3 :: Dx Moderate AA 9/09, treated with IV iron, currently "watch and wait" :: RBC,Platelets "ok" - low WBC and ANC
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  #7  
Old Wed Dec 30, 2009, 10:32 PM
JEZ JEZ is offline
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Quote:
Originally Posted by Deanna16 View Post
hi there! when you day " Platelets 28-35" does that mean when you get your lab work done the platelet line says 28 or whatever number?? Mine reads 136 (which my lab and doctor consider low) i'm just new to all of this and trying to understand if it's a real number your sharing or a decimal. (I have a good handle on RBC and WBC as they have been what I am use to showing up as low...trying to understand the platelets now) )
The normal range for platelets is 150,000 to 450,00. When a lab says 28 - 35 I assume it means 28,000 - 35,000. Your platelets at 136,000 are low at just below the normal range but not critical. Are they trending down? Did they suddenly drop? Or are they trending up after treatment? What the labs mean in your particular case can be many things...
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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  #8  
Old Sun Jan 10, 2010, 07:09 PM
Deanna16 Deanna16 is offline
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ok, that's what i thought Thank you! I just wasn't sure. I've been on a steady decline since May. I know I'm not critically low, but I didn't notice (the Dr. did though) until I became "low" technically to the lab (or just below normal as you put it.
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~Dee~ ) 29yr, wife and mom of 3 :: Dx Moderate AA 9/09, treated with IV iron, currently "watch and wait" :: RBC,Platelets "ok" - low WBC and ANC
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  #9  
Old Tue Apr 17, 2012, 08:37 PM
glitterandlace glitterandlace is offline
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The first time I had AA they had me on male hormones to stop my period. =-(
I responded to the ATG, cyclosporin and steroids. This time that I have AA my body must be used to it or something,,, because my platelets are 15-25 and luckily periods only last 4-9 days. I am not on chemo this time, but cleaned up my diet tremendously. I heard if you eat a ton of fruits and veggies you are less likely to bleed out. But still every time I have my period I am scared to death and wonder if this is the time I am going to bleed to death.
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  #10  
Old Wed Apr 18, 2012, 03:51 PM
Karenish Karenish is offline
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I am 52 this year - before diagnosis I was convinced I was peri menopausal...periods erratic and had stopped for a few months, hot flashes, hair growth on chin (male hormone kicking in), I was on the pill so doc would not do the female hormone test as the result would be compromised by the pill - so then had diagnosis SAA in january 2011 - had rabbit alg, and during serum sickness slight spotting....then nothing until about 2 months later and a period began, incredibly heavy, but, platelet infusion brought it to an end. After this scary experience I was put on Northesterone to stop periods completely, my consultant didn't really want me too, but I insisted.
However last transfusion was before christmas, (recently had platelets but that was only to remove hickman line which had failed) and counts currently hb 8.5 plates 30. I have experienced the most itchiest of rashes which has stopped me from sleeping, and scratching like a banshee in work which was embarassing! So this month I stopped taking the northesterone to see what happens, I am having a period, its no heavier than it used to be, but it is very bright red and low abdominal pain. I am still on cyclo - but strangely enough, no hot flashes anymore, clinic did a female hormone test on me and I have the same levels as a teenager, so menopause is way off for me according to that!!! I will never know if all the peri menopausal signs were really AA starting, or whether rabbit ALG has somehow put back my biological clock. My mum had her menopause in her mid 40's!! By the way, the itchy rash is subsiding, been off the northesterone 2 weeks now.
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  #11  
Old Sun Apr 29, 2012, 07:01 AM
MelanieW MelanieW is offline
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For those of you on BC pills to control periods due to AA/ low platelets - I have a question. Do you take the entire pack including the sugar (placebo) pills or do you skip the sugar pills and go right to a new pack?

My doctor has me skipping the sugar pills but I was thinking of taking the full pack to see what happens. Is this completely silly?

Last week's counts: HgB 9.2, Platelets 13,000, WBC 3.2 (that was 8 days post PRBC and platelet tx)
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Melanie, age 52. Dx AA 11/11, ATG 3/12, partial response, still on tacrolimus
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  #12  
Old Sun Apr 29, 2012, 10:28 AM
CatherineJ CatherineJ is offline
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Melanie

I would skip the sugar pills and skip having your period with your platelets so low. My period can get very heavy and my platelets have only gone as low as 60. My doctor said it's ok to skip your period, but you should have your period at least four times a year to avoid too much build up in your uterus. So I'd say wait maybe two or three months, then have your period. When I wait that long it's more 'solid' so to say and controlled, rather than before when I would bleed through my clothes because of low platelets.

Hope this helps you.
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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  #13  
Old Tue May 1, 2012, 01:48 PM
mscrzy1 mscrzy1 is offline
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I agree with CatherineJ. I also wanted to pop in on the conversation to warn that the depo shot isn't always the way to go either. When I was suffering with AA, they thought they would try the depo shot to get my periods to stop, but I ended up almost bleeding out. I had grapefruit sized clotting and never stopped bleeding with excrutiating cramping. I ended up hospitalized for about 4 days to get my bleeding to stop and pump me up with loads of blood. After that, they did say that with the depo, some people stop bleeding altogether and others start bleeding and never stop. Just a little heads up.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil

Last edited by mscrzy1 : Thu May 3, 2012 at 11:52 AM.
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  #14  
Old Wed May 2, 2012, 06:18 AM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by CatherineJ View Post
I would skip the sugar pills and skip having your period with your platelets so low. My period can get very heavy and my platelets have only gone as low as 60. My doctor said it's ok to skip your period, but you should have your period at least four times a year to avoid too much build up in your uterus.
This is exactly what I've been told, too. Heck, even when I was healthy and on the pill I'd take the packs back-to-back just for the convenience of having less periods!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #15  
Old Thu May 3, 2012, 11:43 AM
amberb amberb is offline
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I'm having to change my method of birth control as well. I have the Implanon implant, but I will get my period for 21 straight days some times. My doctor didn't like that, so I am going to have the implant removed and he is putting me on a progesterone injection that will stop my period. Maybe the injection is a better option than oral contraceptives? It may be worth asking your doctor.
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Amber, age 24, diagnosed w/ SAA and treated w/ horse ATG 7/11, rabbit ATG 1/12, on cyclosporine. Started Desferal infusion for iron overload 7/12.
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  #16  
Old Sun May 6, 2012, 04:16 PM
Karenish Karenish is offline
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Unhappy

Quote:
Originally Posted by Karenish View Post
I am 52 this year - before diagnosis I was convinced I was peri menopausal...periods erratic and had stopped for a few months, hot flashes, hair growth on chin (male hormone kicking in), I was on the pill so doc would not do the female hormone test as the result would be compromised by the pill - so then had diagnosis SAA in january 2011 - had rabbit alg, and during serum sickness slight spotting....then nothing until about 2 months later and a period began, incredibly heavy, but, platelet infusion brought it to an end. After this scary experience I was put on Northesterone to stop periods completely, my consultant didn't really want me too, but I insisted.
However last transfusion was before christmas, (recently had platelets but that was only to remove hickman line which had failed) and counts currently hb 8.5 plates 30. I have experienced the most itchiest of rashes which has stopped me from sleeping, and scratching like a banshee in work which was embarassing! So this month I stopped taking the northesterone to see what happens, I am having a period, its no heavier than it used to be, but it is very bright red and low abdominal pain. I am still on cyclo - but strangely enough, no hot flashes anymore, clinic did a female hormone test on me and I have the same levels as a teenager, so menopause is way off for me according to that!!! I will never know if all the peri menopausal signs were really AA starting, or whether rabbit ALG has somehow put back my biological clock. My mum had her menopause in her mid 40's!! By the way, the itchy rash is subsiding, been off the northesterone 2 weeks now.
To bring you all up to date, the period started to come to an end, when all of a sudden I started to bleed even more heavier than before...went into hospital to explain - they gave me something ....acid to stop the bleeding, let me stay of northestrone up shot of it all is that consultant has referred me to gynae because I said this was no normal period, the bleeding has stopped considerably but is still there 3 weeks on, very low abdominal pain which almost feels like wind, consultant thinks maybe ovarian cyst, or the like! I am of that age as they say - he is happy for me to have regular periods and said to bleed for the 5 days and then start taking these tablets that stop the bleed, apparently he does not like northestrone one bit which is why he was reluctant to put me on them in the first place!!! he agrees that my iron levels will fall slowly with monthly periods, we just have to manage the loss of blood. Exjade was causing eye problems...well we think it is!! oh the joys! xxx
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Old Sun May 27, 2012, 05:29 AM
glitterandlace glitterandlace is offline
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Hi I answered your question before but was just checking up on it again...... My periods were about 10 days when I was first diagnosed with AA. I think as long as your periods STOP is the main thing.... They should only take such drastic measures with women if their periods are NOT stopping and they are literally bleeding to death. Normal periods can last up to 7 days. Your periods are only 3 days longer than the longest normal period. It is really up to you, if you think that you need to take those drastic measures when your period is stopping all by it's self and only a little longer than usual. My last period was only 4 days,, and then I lightly spotted for 3 more. My platelets are 15 right now. Upon first diagnosis of my AA I would bleed for 10-14 days but they always stopped. I say listen to your body. As long as they don't last longer than 15 days and they are stopping with out extremely affecting your counts, Maybe you don't need to mess with your hormones unless it becomes life threatening?
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  #18  
Old Tue Jun 19, 2012, 04:32 PM
Karenish Karenish is offline
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To bring all up to date with my previous posts.... I have what they call a fibroid on the womb, which caused the heavier than usual period - nothing at all to do with AA but the fact that I am in the menopause even though blood test said I wasn't!!! I have not had a period since, but if I do then they will operate to get rid of it to stop me bleeding so much that my counts drop. Now hovering around 9.5 which is an increase but still not enough to cope with severe blood loss.
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