TOPIC:

Hello,
I just found this site by accident while Google searching to try to find information about Promacta and pregnancy. It is wonderful to see so many people supporting others with ITP and to read about others' experiences.

My ITP background:
I was diagnosed with ITP in April 2012. At the time, I was under a great deal of stress: working 40+ hours a week, finishing my bachelor's degree (graduation first week of May), and getting married at the end of May. I was admitted into the hospital with a platelet count of 7,000. I went through a couple rounds of platelet transfusions and ivig only to barely get out of the dangerous range and into the low 30,000. Steroids didn't seem to be working either, and they left me feeling awful (muscle pain, swollen joints). Three days before my May 26th wedding, I had my first NPlate shot which worked to jump me over 100,000.

I have been receiving the NPlate shot regularly since, and for the last year or so I have been getting blood work once a month (platelets always around the 100 level) and I receive a shot. Recently, my doctor has suggested Promacta which I started a few days ago. I will know Wednesday how I am responding to the pills. (I made the switch for convenience due to the restrictioned hours of where the NPlate is administered and the possibility of a new job on the horizon.)

Prior to taking the first dose of Promacta, I pushed my doctor to let me experiment with going without treatment since I had been consistently at around 100 every four weeks. This time my platelets came back at 78, and I was heart broken. I know it was wishful thinking that I could maintain in the 100s without Nplate, but I didn't expect it to be lower at the 4 week blood draw. I don't know why they dropped after getting the same results every four weeks for an entire year. I was sick with flu like symptoms when I had blood work, so perhaps that additional strain on my body caused the lower level? I don't really know. Regardless, I started the Promacta.

I can't help but feel like this is a life sentence... now that I started the pills, I can't help but feel I will never be able to stop it. My husband and I very much want children, and everything I read says not to with Nplate or Promacta. I'm devasted, because I know that I did not respond much to ivig, steroids, and transfusions. Has anyone had success with having a baby while getting treated with NPlate or Promacta?

Thank you for taking the time to read my story, and any feedback is appreciated.
Angela

Angela:

I'm glad you found us. I'm sure you'll get some advice.

First of all, I think it's great that you only dropped to 78 after stopping N-Plate. Many people drop to single digits if they skip a dose. If you were sick, that could have had something to do with it, but you can't know for sure.

Second, the dose for both N-Plate and Promacta should be adjusted so that a person stays around 50k. That is the protocol at this time.

Third, please don't assume that these drugs will be for life. People have actually gone into remission while using N-Plate or Promacta. If that doesn't happen for you, there are other treatments that you can try if and when you decide to start a family. There have been a lot of articles lately about a Rituxan/Decadron combo causing long remissions. You shouldn't get pregnant for a year after Rituxan, but remissions can last longer than that. Many women have successful pregnancies while having ITP.

Platelet transfusions are not really a treatment, and people with ITP do not usually get a rise in counts for more than a few hours. IVIG is also pretty temporary for most. You're not alone there. Steroids are hit and miss. Many patients get a response but it doesn't always last. There are still other options that you haven't tried yet.

ITP is generally manageable and most can live a perfectly normal life with a few adjustments. Just take things one day at a time and try not to worry about the future. Anything could happen and there is every reason to hope that things will work out.

Hi Angela,

I'm in a similar boat to you so thought I'd tell you about my journey so far. I am 32 years old & am lucky enough to have a little girl who will be 3 in February. My husband and I were just starting to try for a second baby when I was diagnosed with ITP in December 2012. Throughout the whole process I have repeatedly told my haematologist that I wanted to have another baby - I was even referred for a second opinion because I had refused some treatments on the grounds that they could I couldn't try for a baby whilst taking them. I have so far refused rituxan (wait 12 months before trying), nplate & promacta (no evidence that they are safe in pregnancy) and some of the drugs I was asked to take alongside prednisolone (alendronic acid can stay in your system a while and cause birth defects).

I have had an indium scan and have found that my platelets are being destroyed in my spleen. As splenectomy (IF it works) would be a drug free solution, this is my current preference for treatment in the future.

If I could go back 12 months I would try rituxan - the 12 months has passed anyway without us being able to try for a baby. This is because, in my case, I was only responding to prednisolone whilst I was taking the contraceptive pill, which I started taking again in April 2013. I am currently very, very fortunate.... I came off the contraceptive pill in December, expecting my counts to drop, but they rose one week before I stopped it and have stayed in the low 70's ever since. I'm not convinced it will last long, but I'm willing wait to treat until my counts drop below 20 and my consultant agrees with me on this because he now knows how important this is to me.

My experience has been that my haematologists want to find something that works to keep my platelets in a safe range. I've had to really shout and kick up a fuss about wanting another baby to get them to listen to me. I've had to decide that I am willing to live with low counts & number numerous hospital visits and possibly even surgery to get what I want. And I'm still not there 13 months down the road, but I'm getting closer.....

Based purely on my own feelings and experience - if I were you I'd start pushing to consider other treatments that potentially would let you try for a baby. But that's just me.

Good luck hun - I understand how horribly frustrating and difficult it is to feel 'stuck' in a situation where you're healthy, but only as long as you're taking a drug which stops you from making the choices you want to. I have good days and bad days in dealing with it. I hope you find a solution that works for you.

Kat xoxo

My daughter (28) was in the same situation with Graves Disease. To treat her hyperthyroidism, she was on a drug that causes horrible birth defects. The babies can be born without most of their skin. She was warned not to get pregnant. She wasn't ready to have children anyway, but is in a relationship. She couldn't use birth control because of a risk of clots. We always knew that when she wanted to start a family, she would have to choose a different method to treat and get stable well in advance. Her only options were one other medication that causes liver problems, having her thyroid removed, or having her thyroid irradiated to destroy it. She knew she never wanted the radiation and the other med is only a band-aid, so she had her thyroid removed last year. Now she has to take a different pill (for life), but it is not known to cause birth defects. She could start a family if she wanted, but is not yet regulated with her thyroid levels. That has been a whole other problem.

Autoimmune problems are tough all around. I hope it works out for both of you.

I am 28 years old and was diagnosed with itp December 28,2012. IVIGs worked 3 times for me for about three times each. I did not respond to prednisone or IVIGs. I responded well to Nplate, but counts were all over the place, was very achy and was tired of weekly shots. I'm currently Promacta and have responded with no side effects. However, this is not an option during pregnancy.

I think I've decided against splenectomy. My sister battled thyroid cancer last year at 22. I also have Graves' disease so I know I have autoimmune issues. I'm a teacher, so I'm constantly exposed to germs. Everything in my gut tells me that it's not a good choice for me personally. I worry about developing cancer or another autoimmune disorder and needing my body to fight it. I also worry about having to be on immune suppressants and basically being double suppressed.

My hope is that I will go into remission after a few years in Promacta. However, I have recently come to terms with the fact that I would like to adopt a baby if I can not have one of my own. There are orphaned children in the world and I feel that I could raise one and love him or her just as much as if I gave birth to it. I struggled with this issue for a while. I had a melt down at chipotle in front of my parents. My dad said I would love to have a grandchild but I don't care who physically gave birth to him or her, he or she will be my grandchild. Then he said think about how much you love your dogs, who you treat like kids but are adopted, now multiply that love times a million. That's how much love you would feel for a child.

My boyfriend of 5 years really wants the best for me. He reads most of the articles on pdsa and is pretty against splenectomy for me. He would be open to adoption as well.

Vdeustch - i hope your sister is well again. I can only imagine how hard it would be to see my little sister battle something so scary!

Everything you've said plays on my mind if I think about splenectomy too much and I don't disagree with any of your reasoning. I suppose I try to avoid thinking about the "what it's" - even if that is a bit naive!!

I think it's very admirable that you & your boyfriend are considering adoption. It's certainly another option and there are so many children who need good homes! I think if we didn't already have our daughter, it's something we would be thinking about very seriously. However, my personal battle at the moment is about having another ourselves or stopping at one. Adoption isn't something that hubby and I feel we could face right now - I need more time to come to terms with not having the family I imagined. That might change in the future though.

Good luck to you and hopefully we'll be back here in the future talking about the new additions to our families - however long it takes & whichever route we take to get there

I really do hope we eventually talk about new additions to our family. It's def not an easy road. Of course I am here to talk and support any choices that you make! Good luck!