TOPIC:

Hello my name is Laura I am 30 years old and was diagnoised with ITP about 3 months ago. I am so confused with all that has gone on in the last few months. I have a 5 month old son and breastfeeding, since being diagnoised I was hospitalized 3-4 times and was told I could not feed my son:( so had to pump and dump ( so sad about that). I am currently on prednisone 50mg along with folic acid. I was doing ok even though my counts seemed to be going up and down. As of the last few days, I have bruises all over along with petechiae. I am confused my doctor tells me I now have to decide on a treatment. My options were IVIG, slpenectomy, or these new medications he told me but did not suggest due to me breastfeeding. I am confused while in the hospital I was given multiple transfusions and IVIG which worked for a short time only. Now I was thinking of trying IVIG once again but was told about it possibly not being safe for my baby?? My doctor says I cannot be on steroids for any longer ?? I have tried to do research but have only found mixed reviews. I just want to be safe are any other mothers who have gone through this?

Laura - I'm sorry you are going through this. You may also want to try the Adults w/ITP board. They may also be able to give you some advice. I know... I'm not much help, sorry.

Thank you for the reply anyway:)

Hi Laura - Everyone is different but I can only tell you my story which is a bit similar. I was diagnosed 8 months after my baby was born (and breastfeeding). Platelets were below 10 and I was covered in bruises and petichiae and had mouth blisters - had no idea about ITP.

I had IVIg and decadron (40mg x 4 days) which slightly raised my count but they dropped within 2 weeks. The ITP was raging. I had more IVIg which worked for 2 weeks. Then I started a prednisone taper (60mg then down) which keep my count good until I was off it a few months later. I knew I wanted another baby so I wasn't ready to try other drugs. I alternated IVIg and decadron pulses for a few months, treating with one or the other every 3 weeks. I always responded but my count would tank below 10 within 2 weeks. Tired with all the hospital days for IVIg, I started another prednisone taper for 5 months. By the end of that taper, my ITP faded away and my platelets stabilized around 120 out of nowhere!

I know I was very lucky. My ITP was bad for a year and has been in remission since (2 years now). I've since had a second baby.

I did thorough research about breastfeeding, steroids and IVIg. IVIg is totally safe. Those molecules are too large to be transferred through breastmilk. The risk is if one day they discover IVIg was contaminated because it is a blood product (just like how they discovered blood contaminated with hep C). It's not likely.

Decadron pulses (high dose 40mg x 4 days) does pass some steroid through breastmilk becausee the dose is so high, however, it would take a long time of repeated exposure to cause an effect on your baby. You can also feed the baby, then take the dose (it's once per day) and you don't need to pump and dump. Benadryl is bad for breastfeeding.

I'll look for my previous posts on this where I sought expert advice on drugs and breastfeeding. Toronto sickkids hospital has a great resource for this: www.motherisk.org/women/breastfeeding.jsp

Hang in there. Unless you are not responding to anything, try to put off splenectomy for at least a year. Sometimes remission happens. It happened to me. It might come back but I can reserve my spleen until then or longer.

Giselle

Dr. Hale is the expert and has a new site: www.infantrisk.com/category/breastfeeding

The forum is for health care professionals to post but its searchable. The old forum is also searchable.

Below is a quote of a post from the old forum where someone asked about IVIg as a treatment for a different autoimmune disorder:
neonatal.ama.ttuhsc.edu/cgi-bin/discus/discus.cgi

"I have a mom that is suppose to start treatment (total of 5 days) for this syndrome. She will be getting IVIGM immunoglobulin treatment. I called our hospital pharmacist and they also agreed with me that continuing to breastfeed would be OK. They stated the molecules are so large that it would be difficult for it to pass into breast milk. We also agreed that is normally present in adult human blood so why should it present a problem.
This mother's mom is a nurse and she stated she found an article dated 2003 that stated it was contraindicated with breastfeeding. I would still like your opinion. I don't have any information other than this as far as dosage or the article name/publisher etc. Could you respond as soon as possible. The mom starts therapy today. She only called me last night. I did a search on here but could only find info on the IVIGM.
THanks very much,
Jena

response:

Jena:

I'd agree with you and your pharmacy staff. IVIG is primarily IgG which only minimally transfers into human milk, and then only in the first few days postpartum. And then it stays in the GI tract.

I could not find any data on PubMed concerning IVIG use in breastfeeding mothers. I would not be concerned about its use in breastfeeding mothers.

Tom Hale Ph.D."

Hi Laura- I was also recently diagnosed. I have a 7 week old baby, and started having ITP symptoms when he was 3 weeks old. My platelets were at zero, so I was sent to the hospital for two rounds of IVIG. I nursed my baby through all of the IVIG, and my hematologist assured me that it is safe. Steroids didn't work for me, so I an being tapered off of them. The IVIG only kept my platelets up for a week or so, and then I had an IV of Win-Rho, another blood product that is similar to IVIG but more specific and only takes an hour to infuse. Results can last much longer than IVIG results, and it is also safe for breastfeeding. It is a blood product given to pregnant women, too. I just had the Win-Rho last week. My platelets were at 211 a week after. Now I'm just hoping that they stay high for as long as possible. My dr also tested me for the H.pylori bacteria, and prescribed an antibiotic for that. I'd love to hear what you decided to do. This has been so frightening, especially with a newbirn to care for, and I don't know anyone else with ITP, to talk to. Does your doctor thing that pregnancy triggered ITP for you? Mine doesn't think so, but it seems to me that they must be connected somehow!