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  • Breastfeeding and MS

    Did you suffer from Multiple Sclerosis while breastfeeding? If so, tell us your story including and hardships or questions you encountered. This will help women who are currently going through a similar situation.

  • #2
    I was diagnosed with MS in August of 2010 when my daughter was 7 months old. I was in denial, and I flat out refused to accept the diagnosis until I saw 3 different doctors. They all told me the same thing -- you have MS. I had one episode of facial numbness and the "classic" MS symptom called lhermitte's syndrome (causes tingling down your spine when you lean your head down -- chin to chest).

    I refused any treatment until my daughter was over one year of age because I was nursing, and I didn't think any of the MS meds were compatable with nursing. I knew I wanted to nurse for as long as possible, but AT LEAST for the first year. Honestly, when I was told I had MS my biggest fear was that I was not going to be able to nurse anymore! I wasn't even worried about what my life might be like years down the road....just nursing my daughter.

    After doing a little research I found out that Rebif is listed as an L2 by Dr. Hale, and I was ready to take Rebif and continue nursing. (Even my pediatrician, who is familar with Dr. Hale's work, was okay with me continuing to nurse while taking Rebif.) Then my neurologist threw me a curveball when he told me he would rather me take Copaxone because it is "less toxic." I researched Copaxone and found it listed as an L3. I found this odd since my doctor told me Copaxone was "less toxic", but after talking with Dr. Hale I found out that the only reason Copaxone is listed as L3 is because there are no studies on Copaxone and mother's milk. Based on my discussion with Dr. Hale and my pediatrician I decided to take the medicine and continue nursing. I started the medicine on January 6th, 2011, and I have been nursing ever since with no problems.

    When I spoke with Dr. Hale he said he was planning to do a study on Copaxone and mother's milk in the very near future. I see that "cpride" is the moderator for this thread -- do you know anything about a study on Copaxone and mother's milk?

    Comment


    • #3
      Dear sring,

      Yes, Dr. Hale is planning to do a breast milk study with Copaxone probably within the next six months. If you would like to participate, please e-mail me your contact information. I will keep you updated on when the study is to begin.

      Sincerely,
      Cindy Pride, MSN, CPNP
      TTUHSC InfantRisk Center
      cynthia.pride@ttuhsc.edu

      Comment


      • #4
        Dear Sring,

        I will deliver my second child in June and plan to breastfeed. I also plan to resume taking Copaxone while breastfeeding. With my first son, I was told not to breastfeed because I could not while taking Copaxone. I am very excited that there is more information out there now and I will be allowed to breastfeed this baby.

        I took Rebif for about 7 months before I got pregnant with my first and I had to stop taking it because it was damaging my liver. I began taking Copaxone in December 2008 and took it until July 2010 when I stopped to get pregnant. I LOVE Copaxone. It did not have the horrible side effects I felt with Rebif and after several months on Copaxone I felt completely back to normal. The injection, as you know, is every day, and is painful, but it is totally worth it. Hang in there! I would love to keep up with you and your experience nursing while taking Copaxone.

        Comment


        • #5
          I am newly diagnosed with MS and will be starting copaxone within the next few weeks. I have a one month old son and desperately want to nurse him for at least a year while not sacrificing medication so that I can be the best mom on both fronts. My husband and I are confident in Dr. Hale's information that copaxone is too large to pass into breast milk and so are planning to resume nursing as soon as I'm done with my ultra high dose of steroids. I would love to hear any new/emerging information or at least confirmation of our decision. I am also willing to participate in the study that is indicated for sometime this year.

          Comment


          • #6
            Dear Blythe,

            There are no data available on transfer of glatiramer into milk, however it is highly unlikely due to its large molecular weight. It is probably okay to use during breastfeeding. We have had case reports of infants that itch and scratch their face when breastfeeding shortly after the mother takes glatiramer. Dr. Hale suggests pumping and discarding milk after glatiramer administration and then waiting an hour before breastfeeding. A suitable alternative is interferon beta-1 which has an even larger molecular size so is even less likely to be secreted in breast milk. We will keep you updated on the copaxone study. Thank you for your willingness to participate. Please send me your email address so that I may have a way to contact you.

            Sincerely,
            Cindy Pride, MSN, CPNP
            TTUHSC InfantRisk Center
            cynthia.pride@ttuhsc.edu
            Last edited by cpride; 10-28-2011, 08:53 AM.

            Comment


            • #7
              Natalizumab and fingolimod?

              I was diagnosed with RR MS in May 2008 and advised to start taking interferon. However, by July 2008 I was pregnant and my symptoms improved. I have been breastfeeding my 25-month old daughter and did not start to ovulate again until February of this year, when I relapsed. The past few months have seen a worsening of symptoms - I have had one course of high-dose methylprednisolone, during which my milk almost dried up - and when I see my neurologist next week I am in little doubt that they will advise me to start taking DMDs. Given how active my MS is at the moment, I think they may well suggest nataluzimab by monthly infusion. Fingolimod has yet to be approved for prescription on the NHS, though that's expected to happen this summer. An MS nurse told me it would be a second line treatment, though.

              I am deeply saddened at the prospect of not being able to have another child, but I realise I have to stay as well as possible. In addition, neither nataluzimab nor fingolimod are officially compatible with breastfeeding, so I face the prospect of weaning my daughter before either of us wish to do so. I realise she has had a fantastic run by anyone's standards, but it will be a psychological wrench at a very difficult time. Can you advise me on how much is known about the safety of these two drugs while breastfeeding? They are considerably more effective than interferon, glatimir and copraxone, but I do not want to put my daughter at any risk.

              Comment


              • #8
                Dear Elpis,

                Nataluzimab would be the preferred choice over fingolimod during breastfeeding. There are no breast milk studies on either drug, but nataluzimab has minimal oral bioavailability which means even if it was in your breast milk, the child wouldn't be able to absorb much, if any, of the drug. Natalizumab is also a large molecule and so the transfer into milk is likely minimal. Dr. Hale states that nataluzimab is unlikely to be detrimental to a breastfeeding infant, but until milk levels are studied, we do not know for sure. Since your child is older, the amount of milk that the child takes in daily is much less than in the first year of life which also decreases the amount of medication she would be exposed to. Observe baby for itching, flushing, nausea, tiredness, or paleness. Fingolimod has an oral bioavailability of 93%. The drug has the potential to decrease the heart rate, cause elevated liver enzymes, and cause macular edema. The drug also increases the risk of infection. Due to these potential side effects, high bioavailability, and lack of breast milk studies, Dr. Hale does not recommend fingolimod during breastfeeding. If you have further questions, please call us at the InfantRisk Center, 806-352-2519. We are open 8 to 5 Monday through Friday, Central Daylight Savings Time.

                Sincerely,
                Cindy Pride, MSN, CPNP
                TTUHSC InfantRisk Center

                Comment


                • #9
                  Dear Elpis,

                  Amitriptyline would be preferred during breastfeeding instead of pregabalin because we have studies on it. Amitriptyline's RID is 1.9% to 2.8% which is how much of the drug gets into the breast milk. The time amitriptyline will be highest in your milk (Tmax) will be at 2 to 4 hours after you take the dose so avoid breastfeeding during that time, if possible. The typical dose is 15 to 150 mg twice daily. Side effects to observe for are sedation, and dry mouth although unlikely due to the small amount in breast milk. Also, since your child is older, she will be able to process medications well herself. Dosulepin which is dothiepin also is compatible with breastfeeding and can be used if it is working well for you. The RID is 0.8% to 2.2%. The Tmax is 3 hours after the dose. The typical dose is 75 to 300 mg per day. Studies with dothiepin have found no untoward effects in the breastfeeding infants. Diazepam has a RID of 7.1 %. The preferred benzodiazepine during breastfeeding is lorazepam because the RID is 2.9% and the half life is shorter at 12 hours compared to 43 hours for diazepam (half life means that half of the drug has been metabolized out of your system in that length of time).The Tmax for lorazepam is 2 hours and diazepam is 1 to 2 hours. Observe for sedation in these medications. You can discuss these medications with your physician and decide which would be best in treating your condition. Let me know if you have further questions.

                  Sincerely,
                  Cindy Pride, MSN, CPNP
                  TTUHSC InfantRisk Center
                  Last edited by cpride; 06-15-2011, 11:05 AM.

                  Comment


                  • #10
                    Soon to be breastfeeding

                    I was just diagnosed with MS at the end of May. Currently I am 29 weeks pregnant and plan to breastfeed. The neurologist is wanting to do a lumbar puncture and start medications after i have my daughter in september. I'm interested in what medications are safest to use for MS while breastfeeding. I have an appt with the neurologist at the beginning of august and would like to present to him the ones that are safe so that he may put me on one of them so i can still breast feed my daughter and use medication rather than delay medication and risk an attack.

                    Comment


                    • #11
                      Dear Rachel,

                      The most common medications that are compatible with breastfeeding that are used in the treatment of Multiple Sclerosis are Copaxone (glatiramer), Interferon Beta 1A & 1B, Solu-Medrol or Depo-Medrol (methylprednisolone),and Tysabri (natalizumab). There is no data available on the transfer of glatiramer into breast milk, but the drug has a large molecular size decreasing the amount likely to get into milk. Dr. Hale suggests pumping and discarding your milk after your dose is administered then waiting an hour before breastfeeding. Toxicity is unlikely with glatiramer. The Interferons also have a large molecular size even larger than glatiramer, and data shows minimal amounts were present in milk. Interferons are also given to children for different conditions and are generally nontoxic. Methylprednisolone is compatible with breastfeeding as long as the doses are low, less than 80 mg daily and not given for long periods of time. If your dose is high such as 1000 mg, you should pump and discard your milk for 24 hours after the dose. If you have to be on long term steroid therapy (several months at a time), your infant should be monitored closely for decreased growth, stomach ulcers, and glaucoma by your pediatrician. Natalizumab has a large molecular size also and thus should only be minimally present in milk, but we do not have data thus far. Observe for rash, flushing, and low blood pressure although not likely to occur. If you have further questions, please give us a call at the InfantRisk Center at 806-352-2519.

                      Sincerely,
                      Cindy Pride, MSN, CPNP
                      TTUHSC InfantRisk Center

                      Comment


                      • #12
                        I was diagnosed with MS in May of 2005, and went on Copaxone in Nov of that year. I got pregnant in Feb of 2009 and discontinued the medications. My son is now 20 months old and still breastfeeding. I did go back on Copaxone about 2 months ago. I recently had an appt with a different neurologist who was concerned about the unknown long-term effects of Copaxone on my son. He suggested getting an MRI and then deciding whether to wean and continue on the Copaxone, or discontinue the Copaxone and keep breastfeeding. He did ask that I "pump and dump" for 72 hours after the MRI because of the contrast injection. My son doesn't sleep through the night and nurses at least 3 times overnight, so I can't figure out how to abstain from breastfeeding for 72 hours. I'm wondering if it is safe to continue the Copaxone. I've read through this thread and saw that Dr. Hale recommends pumping and discarding the milk after the injection. What would the timing be on this? How long should I wait after the injection before the pumping and dumping?

                        Comment


                        • #13
                          Dear SMarch,

                          We need to know the name of the contrast agent that will be used during the MRI. You can either repost or call the InfantRisk Center at 806-352-2519 once you find out what contrast agent will be used. If the contrast agent is a radiopharmaceutical (radioactive), then we also need to know how many mCi's (measurement of radioactivity) will be used. The InfantRisk Center hours are 8 to 5, Monday through Friday, CST.

                          Sincerely,
                          Cindy Pride, MSN, CPNP
                          InfantRisk Center

                          Comment


                          • #14
                            Dear SMarch,

                            We need to know the name of the contrast agent that will be used during the MRI. You can either repost or call the InfantRisk Center at 806-352-2519 once you find out what contrast agent will be used. If the contrast agent is a radiopharmaceutical (radioactive), then we also need to know how many mCi's (measurement of radioactivity) will be used. The InfantRisk Center hours are 8 to 5, Monday through Friday, CST.

                            Sincerely,
                            Cindy Pride, MSN, CPNP
                            InfantRisk Center

                            Comment


                            • #15
                              Dear SMarch,

                              Levels of gadolinium in breastmilk are exceedingly low and oral absorption (ability to absorb through the GI system) is minimal. Dr. Hale recommends to pump and discard at three hours after your dose to eliminate most risk. If you would like to wait until all of the drug is out of your system, the half-life is one and one-half hours so waiting five half-lives which would be eight hours would eliminate any risk.
                              We do not have data on the amount of glatiramer (Copaxone) in breastmilk, but it is highly unlikely to enter breastmilk because of its large molecular weight (size of the molecule), and the oral absorption is minimal. Some infants scratch their faces when breastfeeding shortly after mother's dose of glatiramer. Dr. Hale suggests pumping and discarding milk after glatiramer administration (within one hour) and then waiting another hour before breastfeeding. A suitable alternative is Interferon Beta-1a, which is an even larger molecule. Let me know if you have further questions.

                              Sincerely,
                              Cindy Pride, MSN, CPNP
                              TTUHSC InfantRisk Center

                              Comment

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