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Breastfeeding and MS

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  • #16
    The story from Sring could almost be mine! I was diagnosed September 2010 when my daughter was 11 months old (and breastfeeding), following a severe case of unilateral facial numbness (spent the night in ER with suspected blod clot in brain). However, following a very clear cut MRI that was indisputable everything moved really fast from then. I was offered places on clinical trials for oral medications but was then discounted because i was breastfeeding. Then i was given a list of drugs to choose from including Rebif, the interferons, and Copaxone (my neuro said they are all basically the same in terms of effectiveness and to pick one that i could live with in terms of regime and side effects) but that i could not start any while breastfeeding because there were just too many unknowns. So I held off. I was not ready yet to quit breastfeeding - i had a very difficult delivery (long labour - emerg c-section -hemorrhage- 2L blood loss - required transfusions) and because I was in bad shape breastfeeding was a real battle to get going. But after many many tearful sessions we figured it out and finally enjoyed it.

    Sadly my return to full time work and daycare for my girl gradually brought our breastfeeding journey to an end although i did pump at work for 2 months and would recommend it to anyone (it is not as scary as you initially think it will be). So then I began copaxone.

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    • #17
      my post got lost long story short. I've been diagnosed since May 2005, I stopped taking Avonex in July of 2006, gave birth Sept 2007. No major relapses until recently. I'm currently nursing a 12 week old. I'm scheduled to get steroids tomorrow. I don't know the dose, but I'm assuming it's an injection since I have to go to my doctor for it. I co-sleep and my son nurses 2-4 times overnight. I have a small freezer stash, but I don't know if it's 24 hours worth. I will probably call in the am for the exact treatment and call the hotline. I really don't want to stop nursing for any length of time; we both find it comforting, especially since I work full time.

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      • #18
        Dear kflesch,

        Steroids are compatible with breastfeeding in low doses and for short periods of time. When you find out how many milligrams you will be receiving, you can call us at 806-352-2519 or post the information on the forum. Be sure to let us know what steroid you will be taking as there are several and each are a little different.

        Sincerely,
        Cindy Pride, MSN, CPNP
        TTUHSC InfantRisk Center

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        • #19
          Cindy,
          I was wondering if the study you mentioned here has been finished and if you have any results? I was diagnosed in April 2011 with MS and my son was 6 months old at the time. I really felt that it was important to continue breastfeeding until he was a year old. My neurologist agreed that I could postpone treatment, which he has suggested as Copaxone. I began weaning my son in August, but it going much slower than I imagined. This Monday was his first birthday and it has made me become more concerned about how to proceed from here. The doctor said that I would need to stop breastfeeding when I start the medication, but from these posts and other information I can find, it seems that because of the molecule size and the nature of the drug it may be possible to continue to wean my son and start the medication. Any information that you could provide, would be greatly appreciated.
          Last edited by skierklp; 10-25-2011, 09:59 PM.

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          • #20
            Dear Krista,

            Glatiramer (Copaxone) is a mixture of polymers of four amino acids. They are large polymers which limits their ability to enter breastmilk. There are no data on how much glatiramer gets transferred into breastmilk, but Dr. Hale states it is highly unlikely due to its large molecular weight and is probably compatible with breastfeeding. He suggests pumping and discarding milk after glatiramer administration and then waiting an hour before breastfeeding. The interferons beta 1 A and B have been studied and transfer into breastmilk is essentially nil. Their molecular weight is even larger than glatiramer; and therefore are compatible with breastfeeding. The Copaxone study is still in the early stages; therefore, no results to report at this time. Let me know if you have further questions.

            Sincerely,
            Cindy Pride, MSN, CPNP
            TTUHSC InfantRisk Center

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            • #21
              I am currently nursing my 9 month old son, but I will probably need to resume taking Copaxone after taking a break while TTC and pregnant. I want to continue nursing him until he is ready to wean, whenever that is. I am so glad to find this forum and glad that there are other moms out there in the same situation & that Dr. Hale is providing this information for nursing moms!

              For other moms who take Copaxone & nurse--what time of day do you do your shot? It seems like alot of us are cosleepers & night nursers.

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              • #22
                Do you have any new information on the study? I am anxious to hear how the copaxone study is progressing. Thank you.

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                • #23
                  Dear skierkip,

                  Thank you for your interest in the copaxone study. We are still in the beginning stages getting funding, protocol information etc. We will keep you informed about data when it becomes available.

                  Sincerely,
                  Cindy Pride, MSN, CPNP
                  TTUHSC InfantRisk Center

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                  • #24
                    Hello. I just had my daughter December 28, 2011, prior to getting pregnant I stopped using Copaxone. I was just diagnosed August 2010 and became pregnant May 2011, therefor I was not on the treatment very long. I am very new to MS and do not have too much experience with the disease. I am breastfeeding my daughter and plan to continue. My Nuero advised me to check with my Pediatrician to see if he felt it was safe to start back Copaxone, as I really needed to do so. My pediatrician felt that if it was safe for women to take during pregnancy that breastfeeding should be fine "in theory" and if any is discreeted into the breast milk it would be at such low amounts it would not cause harm to the child but overall there's not enough research blah blah, you all know how that story goes. It's my decision whether I wanna start up and continue to feed. My pediatrician is very against using formula so for him to encourage me to continue made me feel a lot better. My neurologist is convinced that things will get much much worse for me if I do not resume treatment... Therefor I decided that I would give it a chance and start my copaxone and breastfeed. I want to continue to breastfeed for at least 1 year. I really hope I can do so. I would love to hear more on the studies that have been done as well as help with any research.

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                    • #25
                      Dear sgttswife,

                      Copaxone (glatiramer) is a synthetic polypeptide made up of four amino acids (building blocks of proteins). We do not have data on how much glatiramer enters breastmilk, but because of the large size of the molecule, it is unlikely to enter breastmilk in large amounts. There have been two case reports of breastfeeding infants who scratch their face shortly after their mothers take glatiramer; therefore, it is suggested for mothers to pump and discard their breastmilk after glatiramer administration and then wait two hours before restarting breastfeeding.

                      Sincerely,
                      Cindy Pride, MSN, CPNP
                      TTUHSC InfantRisk Center

                      Comment


                      • #26
                        @RosieBC

                        It's been a while since you asked this but in case you haven't resumed your copaxone...
                        I have been taking Copaxone and nursing for a few years. I do my shot in the afternoon to avoid her most popular times she wants to nurse and have been successful with that.

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                        • #27
                          I was diagnosed with MS in 2006. Went on the CombiRx double blind trial (I was recieving Avonex and Placebo Copaxone). Had 7 relapses during this time. I got pregnant in 2008 while on drug, and have been fairly relapse free. Had a postpartum relapse a 6weeks PP with my daughter, pumped and dumped or 3 days for high dose steriods, and then didn't have another relapse for 3 years- when she night weaned in 2011. In 2009, after daughter was 1 year, I started copaxone however I did not tolerate it well, so I came off at 18 months. Have just had my second child (Son is 12 weeks old). Daughter is still nursing (almost 4) as well as my son. I'm drug free, although having a mini-argument with my neuro about DMD. I refuse to wean, he doesn't want to prescribe unless I do. I'm healthy so I'll just stay drug free for now.
                          I do however want to confirm Gadolinium as used for MRI is safe. I was JUST told by the Radiologist to pump and dump for 48 hours. By my own research, I don't plan on doing any such thing, but want to confirm that I don't need to pump and dump.

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                          • #28
                            Dear Legna,

                            Minute amounts of Gadolinium enter breastmilk. Dr. Hale recommends to pump and discard at three hours after the dose then resume breastfeeding. This time frame allows 75 percent of the drug to be eliminated. Waiting 9 hours would allow all of the drug to be eliminated. Virtually none of the drug is absorbed orally by the breastfeeding infant.

                            Sincerely,
                            Cindy Pride, MSN, CPNP
                            TTUHSC InfantRisk Center

                            Comment


                            • #29
                              Hi Cindy, I was wondering if you had any updates on the Copaxone study. I was telling my neuro about it today and was wondering about its progress.

                              Thanks!

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                              • #30
                                copaxone, older nursling

                                Hi! I've just been diagnosed with MS after my first known exacerbation, where I had IV
                                high dose methylprednisolone for a week. My son is nearly weaned, at age 3 and a half,
                                but after the steroids course and another ~5 days before deciding that it was safe for him to
                                resume so we could end our nursing relationship a little less abruptly, he has nursed for a minute or two every few days when he asks. I expect that between his age, the 10+ days without nursing or engorgement during the steroid treatment, and the very occasional frequency of nursing as he finishes weaning, he's not even getting more than few drops of milk anymore.

                                I am soon to start daily injections of copaxone, and wondering if there has been any progress on the study on copaxone, and whether the molecule size and the amount of milk obtained by an older child who nurses for a brief check-in a few times a week would be reason to feel comfortable with finishing weaning at his pace rather than a second and final abrupt ending when I begin the copaxone.

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