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first period since diagnosis...

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13 years 6 months ago #22884 by DanielaG
first period since diagnosis... was created by DanielaG
Hi everyone,

I was diagnosed almost a month ago when my period was going into the 12th day...

I started my period this morning and I am very afraid of what could happen(because my diagnosis began with my period)

My counts were at 219 on Monday, am I worrying for nothing?

This is all still very new to me. Any advice would be great.
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13 years 6 months ago #22885 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
I am in the same boat as you, expecting my first period within the next 2 weeks and am also unsure what to expect.

do you mean 219,000 platelet count? If yes then that would be within the normal range and would hopefully mean you should experience a normal flow (fingers crossed)
The following user(s) said Thank You: DanielaG
  • 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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13 years 6 months ago #22888 by Sandi
Replied by Sandi on topic Re: first period since diagnosis...
Daniela:

If you experience a long or heavy period with those counts, you have something else going on that requires a GYN.
The following user(s) said Thank You: DanielaG
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13 years 6 months ago #22892 by DanielaG
Replied by DanielaG on topic Re: first period since diagnosis...
I have just become incredibly paranoid since this diagnosis.

My counts are 219,000 yes. Is this high enough that ITP would not affect my periods?
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13 years 6 months ago #22893 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
well my dr said the 'Normal' range was between 150,000 and 400,000 so I would keep your fingers crossed for a fantastic not flooding next period. I believe positivity is half of the journey :)
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13 years 6 months ago #22897 by DanielaG
Replied by DanielaG on topic Re: first period since diagnosis...
Thanks so much for the positivity, I agree.

I'll keep my fingers crossed for you in a couple of weeks as well!
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13 years 6 months ago #22954 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
a bit off topic but my platelets are now at 80,000 up from 9000 on tuesday. I am very excited. Going for my next test today and will get my results on monday. Fingers crossed to be in the 'normal' range.
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13 years 6 months ago #23017 by DanielaG
Replied by DanielaG on topic Re: first period since diagnosis...
That is great news! 80,000 is safe and hopefully they will be even higher by the time you get your period!
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13 years 6 months ago #23049 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
well excellent news, I am now at 268,000. I can relax for a while and not be so paranoid. Not a bad increase for only being on the treatments for 1 week. I hope they stay up as I am tapering off the prednisone from tomorrow :)
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13 years 6 months ago #23065 by Ann
Replied by Ann on topic Re: first period since diagnosis...
I react like that with pred too. It's good to have something that works quickly and well in case you ever need it in emergencies. Good luck with the taper.
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13 years 6 months ago #23309 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
well that was interesting...I just had the lowest volume menstruation in living memory LOL. No getting up in the night, no rushing to the loo several times a day to check for leaks...those platelets must have been quite low for ages and because I have not been to the Dr. in at least 5 yrs I never knew. Super slow getting last blood test result, hopefully should get it tomorrow. currently on 40mg of prednisone too, lowering 10mg per week....the shakes and the crazy are subsiding thank goodness...
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13 years 6 months ago #23591 by DanielaG
Replied by DanielaG on topic Re: first period since diagnosis...
Sorry for the late reply!

I'm so glad your period was lighter than normal. And it's incredibly interesting because before my diagnosis I had heavier periods one month and noticeably lighter the next...so perhaps mine were fluctuating as well hmm...

In any case, I'm glad for you. How are you doing now?
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13 years 6 months ago #23593 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
I think our periods could be a key to platelet levels and self monitoring (not saying to avoid the Dr), which I like. I prefer to know the signs my body will send me (when I take the time to listen).
I am good at the moment, saw the Hemo the other day and basically he said anything over 30,000 he would be happy with. I was quite reassured by that.
Monthly bloood tests now, going to 25mg of prednisone from tomorrow and feeling pretty good all round. Waiting to see what my next period has in store for me :)
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13 years 6 months ago #23596 by DanielaG
Replied by DanielaG on topic Re: first period since diagnosis...
I agree about listening to your body, (and also, I wouldn't avoid the doctor either) I think it's important to self-monitor and recognize what is going on in your life while your counts are stable, and what (if anything) changed when the are lower.

My hemo says the same thing about 30K...I am determined to stay a little higher than that, but I agree it definitely is reassuring to hear that is acceptable.

What was your last count? Glad you're well!
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13 years 6 months ago #23600 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
last count on the 26th of March was 208. Will have to wait a month for the next count and yes, I too am aiming higher than the 30 but it is a relief to know 30 is still ok :)
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13 years 5 months ago #24206 by krsnanandini
Replied by krsnanandini on topic Re: first period since diagnosis...
I am very excited, I had a blood test yesterday and my platelets are now a fantastic 217,000

I am so very pleased. I am currently on 10mg of prednisone and droping by 2mg per week now. I am also taking the Maharishi Amrit Kalash nectar and Ambrosia tablets (Ayurvedic medicine) If anyone wants to know the website I am going to for my products please email me (I was buying from Ebay but have found a proper site now)

I have another blood test in a month so hopefully I am able to report the same count or even higher
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13 years 5 months ago #24218 by DanielaG
Replied by DanielaG on topic Re: first period since diagnosis...
Great count! That is great news.

Keep up the good work:)

I went to the doctor today and I'm still at 200-ish so he doesn't want to see me for a couple of months. I'm going to start back on a green-food powder and I've eliminated gluten from my diet(I've found that my stomach is flatter and I don't get an upset stomach as often.)

Keep me posted!
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