A lot of differnet drugs-want more kids

Hi everyone!
I have had ITP for 16 years, it has been in remission for most of those years.
The past year and a half has been awful!

In the last year and a half I have had my spleen removed, been on Nplate, steriods, rituxin, nad azathioprine.

I am currently refusing to take anymore steriods, the rituxin was done in early September & it failed, now the dr has me on azathioprine and IVIG.

Has anyone out there been on any or all of these drugs & then had a child??
I know the rituxin takes a few months to leave the body, but what about the azathioprine? One dr told me I could get prenent on it then the warning lable says it is harmful!
I want to just have the IVIG and try to keep my counts stable with that.

We are also suffering from infertility so we will be trying again after the holidays & the dr uses IVIG during my transfer. I am so scared and confused, hopefully someone out there has been down a similar path as me.

Thank you - Jessica

Jessica - sorry you're going through this. I think rituxin can take weeks to kick in. It's okay to do IVIg only if they'll let you. There was a girl here who basically had IVIg every week for most of her pregnancy. good luck.

I have also been down this same road over the past couple months after falling back out of remission. Ive had spleen removed, rutuxan, nplate, and now maybe danazol. Me and my husband want to also start having children but are not for sure about the drugs I have been on and what I can take during the pregnancy. Please post back if you find out any answers

Thanks
Jen

Hi Jenn,

Hate to hear that you are going through the same up's & downs as me. After posting my situation on here, someone wrote me back & said the imuran can cause double sex organs in a baby!! One drug I know for sure that you can be on during pregnancy is the IVIG. I also suffer from infertility and get infusions before and after my transfers. When I do get pregnant I will have to have the IVIG throughout the first trimester.
When you and your husband are ready that is one drug to look into. What is danazol? Good luck to you & please let me know if you have any other ddrugs out there that are safe during pregnancy. I will do the same!

Jessica

Jessica
Ive tried all the treatments you have minus the spleenecomy. I am currenlty 14 weeks pregnant. So far everything seems good and no bleeding issues. I stopped the Imuran as soon as I found out I was pregnant. as well as the plaquenil although that can be taken while pregnant I choose not to. I have been told that I will need IVIG before during and after delivery to ensure I dont bleed out. My goal is to make it as long as I can with no steriods. My counts have been 30-40 so far out and although my ob isnt thrilled my hema has assured him that if my counts drop lower Ill go in for IVIG. It was very scary finding out I was pregnant considering all the drugs I was on. I did rituxian last november/december. Rituxian takes a while to work sometimes up to 8 weeks or longer. But it can be done, the whole pregnancy thing. I see a high risk ob and he checks the baby every month. All my blooodwork is normal minus the platelets. I will have blood and platelets donated for me and the baby 3-4 weeks prior to my delivery just in case either of us needs a transfussion.

Tigereyes (not sure of your real name),

Congratulations on the pregnancy! It is very exciting and I wish you luck. I want to thank you for responding to my post, I too am so afraid to get pregnant again considering all the drugs I have been on and that I am currently on now.
I do have a quick question for you. How long did your doctor tell you to wait to start trying for a baby after your round of rituxin? I was forst told (before I agreed to the treatment) that I should wait three months, now that it is over he is telling me 6 months!!! I have also read reports where women are pregnant and get the rituxin! So confusing.
I have agreed to stay on the Imuran until we are ready to start trying again (because we are IVF I know when will be trying). As my counts go up & down I am currently getting IVIG and will throughout my first trimester when we are pregnant. I am refusing any other drug at this time (first time off steriods in 1 1/2 years).
Good luck to you and please keep me posted! I know the IVIG is a safe for you & the baby, it is what my fertility doctor has me get before and after my embroy transfere.
Are you having family members donate platelets? That is a great idea!
Also, when I was pregnant with my son, my platelets were at an all time high, praying that happens for you. Also, they say it is not passed onto the fetus, so God willing you and your baby will have a healthy pregnancy and delivery! Again good luck!
Jessics

My counts are normally very low. 30,000 range. I have a CBC weekly. I am current not on any treatments. I had to have a break last year after the failed Nplate. I have had my spleen removed, steroids, whinroh, IVIG ( which works but doesn't last), and now contemplating Rituxan because Michael and I want to have a baby. I'm scared about everything. I've read that I can have the IVIG throughout the pregnancy, or the Rituxan, but then no, my hemotologist says my counts are too low. I don't know what to do. This is the only support outlet I have found and I have never met anyone with ITP before, so I feel alone in this.

Thanks,
Shay

Hi Shay,

There is a girl on this discussion who is currently 14 weeks pregnant & her counts are around 30-40. The IVIG is safe before and during pregnancy, steriods are safe for the fetus as well. If you do the rituxin you have to wait a few months for it to be out of your system before you start to try. I too read that you can have the rituxin while pregnant, but that does make me nervous.
I know the NPlate is not good during pregnancy (it is a bone marrow stimulant that passes directly to the fetus). I am on imuran (which my dr said it was ok then I hear all of the awful side effects for a fetus). I am waiting until after Christmas to try again and than I too will have the IVIG & maybe steriods, and that is it in my system.
I know it is scary, but pregancy is possible with ITP, we were blessed with our son 5 years ago with no problems during the pregnancy. You have to be your own advocate and let the doctors know what you want! Good luck to you and please keep in touch!
jessica

Jessica,
My hema said ideally 1 yr. Becuase rituxian typically staying in your system for that long. His reasons being is that there arent many if any studies of the effect of rituxian on a fetus. My pregnancy wasnt planned, it just sort of happend. Dont get me wrong I am very happy. I did rituxian in november and december of last year so it was 7 months later that I got pregnant. So far everything is good. I couldnt have asked for anything more. My counts are 30 again down from last month and now Im iron defficent(nothing new Ive always been iron defficent). My hema is hopeful that my counts will begin to rise during the 2nd trimester. I am having family and friends donate blood and platelets just in case. My mom and brother are O so they will specifically be donating for the baby, since Im not sure what blood type the baby will be. It is all precautionary--but better to be safe then sorry. I was on the imuran until I found out I was pregnant once the test came back positive I stopped all meds..without doctor approval but it was what I felt was necessary at the time. All my doctors are working together for the best outcome for the two of us.

Im very excited to find out the sex of the baby...on Nov 11. Sheesh 5 weeks seems like such a long time away.

BTW my name is Jennifer

Thanks for the insight. We have like reading the information on this site. No treatment really needed. I'm completely healthy right now, I just have a low count. No bleeding issues or itp complications in over a year. We can get pregnant with a count above 20,000. We have learned that as long as the m counts stay in the 20-30 range everything is fine. In my third trimester, IVIG would be used to increase my counts to above 50,000. I can have a natural birth. We have read this over and over confirm this with OBGYN and Hemo. We have also learned that all the conflicting information is based on different people and Dr.. learning what is safe for individuals and what proven safe has been a wonderful experiences for Michael and I. This site and reading everyone's response let me know that I am not alone. I still feel alone when the CBC jumps all over the place but quit so much. Thanks!!!