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Need Your Opinion

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14 years 7 months ago #13254 by brishti
Need Your Opinion was created by brishti
I am 26 year old Female, diagnosed with ITP in march 2003, was treated with Prednisone(Works good but I refuse to take it all the time becoz hate all the side effects:dry: ), IvIg(worked for a wk only), Winroh(never worked), Splenectomy(unsucessful)and Last Rituximab(Worked very good from May 2007 to january 2011).
So I am back to the ITP boat again with 14k plateles :( ( CBC was done on March 09,2011).Was temporarily treated with IvIg untill I see my hema on march 22nd, 2011.I talked to my Hema over phone & she was telling me either I can choose Rituximab or the other medicine(I don't recall the name , but she was telling me if i take that medicine I have to take it rest of my life...).As with IvIg my platelets stay stable only for 7/8 days & if I take Prednisone I have to take it for longer period (more than 6/7 wks :angry: )I don't wanna take pred.The fact is that I was planning to have a baby ASAP... but if I go for Rituximab or the new one I guess I would not be able to get pregnent for a period of time.At this point I am unsure what should I do...What's your opinion? Do you guys have any idea about that new medinice that i have to take for rest of the life ...?

Waiting for your opinion & Thanks in advance!

Recent CBC:
February 14, 2011- 20k(treated with prednisone for 2 wks)
February 25, 2011- 989k
March 04, 2011 - 650k
March 07,2011 - 141k
March 08, 2011- 27k
March 09, 2011- 14 K (Treated with IvIg,Will get the next one on March 14,2011)

Dream as if you'll live forever, live as if you'll die today.

Nowrin
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14 years 7 months ago #13264 by jennaouellette
Replied by jennaouellette on topic Re: Need Your Opinion
Unfortunately I cannot speak to your medication questions (have not needed treatment as of yet)....but just wanted to let you know that I just turned 27 yesterday and would also like to start a family soon. Just thought it might make you feel better to know you're not alone.
ITP SUCKS!!!! I hope you find an effective treatment that works with your lifestyle soon.
The following user(s) said Thank You: brishti
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14 years 7 months ago #13265 by jsylvester
Replied by jsylvester on topic Re: Need Your Opinion
Initially diagnosed in 08, rituxin remission til 2010, had spleen removed, was on prednisone and dexamethasone and then took rituxin tx again with no luck initially so had nplate x 4 and then finally a remission. I was going to get pregnant with the ITP and take prendnisone the entire pregnancy, which is healthy for me and the baby. There arent really many options while pregnant. I personally decided not to get pregnant until remission, I was too scared to battle platelet counts of 1,000 while being pregnant. It took from april til september for the remission but even after taking all those meds we were pregnant in November. I have read discussions on here trying to find answers if I should try to get pregnant while having low platelets before my remission and it seems some people do fine but me personally I did not want anything to happen to me or the baby. I still have a CBC monthly and counts have been 300,000 plus.
The following user(s) said Thank You: brishti
14 years 7 months ago - 14 years 7 months ago #13266 by
Replied by on topic Re: Need Your Opinion
Sorry brishti - I would never voice an opinion about a drug of any kind to someone who wants to/is planning to/is pregnant. That's another life involved.

What you should do is get with your OB/GYN and do some talking. And if you don't know anything about this new medicine your OB/GYN should be able to answer your questions - and if he doesn't know anything about this new medicine then he should look into it and learn all he can so he can talk to you about the pros & cons [and maybe get together with your hematologist too].
  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 7 months ago #13267 by Angel85
Replied by Angel85 on topic Re: Need Your Opinion
I think what she means with the pregnancy issue is not that she doesn't want to be pregnant with low counts, it's that certain drugs, they advise not to become pregnant while on it or for up to 12mths after u have finished treatment as they don't know what effects the Meds have on a baby
The following user(s) said Thank You: brishti
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14 years 7 months ago #13270 by brishti
Replied by brishti on topic Re: Need Your Opinion
yah u r rite angel,that's what I was trying to tell.if I take rituxin i can't get pregnant may be for next 1/2 yrs ...but I was planning a lot ....:(( ITP suckssss.

Dream as if you'll live forever, live as if you'll die today.

Nowrin
  • 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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14 years 7 months ago #13278 by Sandi
Replied by Sandi on topic Re: Need Your Opinion
Brishti:

I agree with Melinda. I'd talk to your OB/GYN.

Rituxan worked for you the last time for a while. You'd have to put off your plans of getting pregnant for now, but it seems it would give you a good shot at another remission.

The other drug is probably N-Plate or Promacta. I don't get the "you'd be on it for the rest of your life" comment. Not necessarily true. You could have a remission OR other, newer treatments could replace it. There have been other people on those treatments who have stopped using them.

Good luck with your decision!
The following user(s) said Thank You: brishti
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14 years 7 months ago - 14 years 7 months ago #13307 by brishti
Replied by brishti on topic Re: Need Your Opinion
Thanks for your opinions.Yesterday I talked to my Gp & she was telling me she spoke to my hema , hema said to her that her plan is to give me Rituxan again.I was just wondering if I take Rituxan how long do I need to wait to get pregnant, i mean if it's 2-3 years, it's gonna be so longer waiting period, I can easily wait 12 months max ...

Going to see my GYN on march 21,2011, will ask him too...

Wish IvIg works for me this time & no need to take anything else...:unsure:

Thanks

Dream as if you'll live forever, live as if you'll die today.

Nowrin
  • 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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14 years 7 months ago #13308 by Sandi
Replied by Sandi on topic Re: Need Your Opinion
The Rituxan manufacturer suggests waiting one year before getting pregnant.
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14 years 6 months ago #13357 by lili
Replied by lili on topic Re: Need Your Opinion
Hi Brishti,

I see you're from Canada and I think that I remember that you're even from Ontario. Either you or your doctors could contact MotherRisk at Sick Kids hospital in Toronto. They track the use of a lot of drugs in pregnancy and could probably give you more info. I know that they do this for all of Canada and I think for other places as well.

Many years ago when I was taking a new drug and was thinking about getting pregnant, my doctor contacted them and they sent us all of the information they had. This wasn't much since the drug hadn't been out long. They knew about 6 births, all to mothers who were taking other drugs as well, and there was at least one birth defect in the lot. It wasn't proof that the drug I was taking was the culprit, but it was not reassuring. So I decided to get off of the drug before getting pregnant.

Rituxan is less new now so they'd likely have more information. It would probably make your decision easier one way or another.

Lili
The following user(s) said Thank You: brishti
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14 years 6 months ago #13372 by brishti
Replied by brishti on topic Re: Need Your Opinion
Thanks a Lot Lili & yeah I am from Toronto ...thanks for remembering me :kiss: .I will must ask my doc about that, will try to gather all the information I need before I get pregnant.

Dream as if you'll live forever, live as if you'll die today.

Nowrin
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14 years 6 months ago #13628 by brishti
Replied by brishti on topic Re: Need Your Opinion
Hi Guys There is an update!I had my blood work done on 22nd march,2011 after the 2nd shot of IvIg on 14th March.My Platelet cout is 951K...not sure if the IvIg is working for me!Had seen my hema, she thinks the ivig is working good for me now(in 2007 before my splenectomy, i had only 50 k plts after the ivig treatment & it lasted only 5/6 days).She also said that as i was doing very well after the rituxan (may 2007),The reason of my sudden platelet drop might be an infection(as I was visiting my backhome that time)!So there are two possibilities now: 1) May be IvIg is working good OR 2) My Platelts are autometically increasing! She is gonna monitor me now!She asked me what's my future plan about the treatment, if I would like to go for rituxan again.I told that I will wait & see how everything goes.If IvIg works good for me(i mean if my plts stay stable for a month with ivig)I would not go for rituxan.I would love to have IvIg once a month.

Have seen my GYN too. He said if I take rituxan I can't think to get pregnant for a yr or so.He also told me that i cannot take any medicine in the first trimester of pregnancy.He also told me that I am ok to try to get pregnant after the platelts are setteled down.So I decided to wait couple weeks to see how everything goes , will take the advice from my hema as well, then will go for it.Lets see if the plts remain high like this & hoping for the best!

Thanks

May 28,2007-151k(last Treatment of Rituxan)
February 14, 2011- 20k(treated with prednisone for 2 wks)
February 25, 2011- 989k
March 04, 2011 - 650k
March 07,2011 - 141k
March 08, 2011- 27k
March 09, 2011- 14 K (1st shot of IvIg)
March 14, 2011-2nd shot of IvIg
March 22, 2011- 951k

Dream as if you'll live forever, live as if you'll die today.

Nowrin
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14 years 6 months ago #13649 by CindyL
Replied by CindyL on topic Re: Need Your Opinion
With a count of 951, I don't think I would even be thinking about any treatments for now.
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14 years 6 months ago #13666 by brishti
Replied by brishti on topic Re: Need Your Opinion
Thanks Cindyl but my hema was discussing the furute plan about the medicine, i mean if just incase my plts drop again then what should we do.Now she is just gonna monitor me by having my Blood work done every week.

Dream as if you'll live forever, live as if you'll die today.

Nowrin