Interesting Week of Research

Disclaimer: This will be a boring post if you’re not interested in MS, or pregnancy.  Sorry!

I began this week by taking on the dreaded home office – the one that got some water damage during Hurricane Ike (yeah, almost two years ago) and has never been put back together properly.  Actually, just the opposite…the office became the house dumping grounds for all things piled.  It is in desperate need of love and attention.

It was a fortuitous expedition.  In one of said piles, there were a few handouts on multiple sclerosis and various studies going on related to hormone treatments, pregnancy, and breastfeeding that I picked up who knows where and who knows when.   The one flier that caught my attention was on the benefits of exclusive breastfeeding (as opposed to a combination with bottles) in reducing post delivery MS complications. (For the uninitiated, MS generally goes dormant while pregnant and can sometimes have significant flares in the weeks/months immediately post delivery when hormones are going wild.)

Once I found this flier, I started trolling the internet for the actual study and supporting documentation, as well as information on the medicine I take (Copaxone) and whether it is, or is not, compatible with breastfeeding.  I have always been led to believe that the it is incompatible.  (I probably should note that I am one of few who elected to stay on the Copaxone throughout pregnancy, once I was assured it would not cross the placenta.)

The study itself was very small but the results looked very promising.  They looked at women with MS (who went off all meds to exclusively breastfeed for a minimum of two months) and compared them with a control group of similarly aged healthy new moms.  What the study concluded was that “women with MS who breastfed exclusively for the first 2 months postpartum were approximately 5 times less likely to relapse in the postpartum year than women who did not breastfeed or began supplemental formula feedings during that time.” Wow! Sounds good to me!

But I like my Copaxone and since I didn’t go off for pregnancy, I can’t really see going off after delivery.  And staying on the meds while exclusively breastfeeding is one aspect of my equation that the existing study does not appear to address. (Urgh!)

So my initial impulse, when reading the study results, was to contemplate a minimum of two months of pump and dump.  Basically trick my body into thinking that I am exclusively breastfeeding (to get the benefit) while not exposing James to Copaxone (any more than he already has been in the womb). I mean, if the benefit is that big, I’ll take the added inconvenience, right? (Assuming that staying on the drugs doesn’t somehow diminish the benefit, which is unclear…but probably worth it to try just in case.)

What I have found while researching both the study and Copaxone itself seems to suggest that (1) the Copaxone would be unlikely to makes it way into breast milk (something about the molecular size makes it unlikely), (2) if it does, since its a protein, it would not harm James, and (3) the reduction of risk itself is significant enough to make me want to try staying on the drug and exclusively breastfeeding (and of course, breast milk offers James lots of benefits too).

This is, of course, a big decision and honestly one that I thought was already a done deal.  My feeling all along has been that it is more important for James to have a healthy mom who can take of him (and his Dad) than to be breastfed, no matter what the benefits of breast milk. (And having just had a very healthy Little Man in the house who was bottle fed has only served to reassure me of this position).  But I am glad to have found this information while I have time to research it, talk to our OB, neurologist, and pediatrician about it, and make an informed decision that will (hopefully) work for Chris, James, and I.

By the way, the office cleaning project has stalled while I have sat at the computer for a day and a half reading (big shock, I know).  But its all for a good cause, and I am getting back at it today.

If you all care, I’ll keep you posted on what else I find and what the consensus of the doctors is…and I promise not to blog often about breastfeeding!

Information You Can Get Excited About

Subtitle: Cindy is a Miracle Worker

So a few weeks ago I wrote about how much thigh shots suck. Well, I finally got together with my “training” nurse, Cindy she introduced me to what I call “free style” shots.  That is, injections that do not use the auto injector provided but that your just stick in yourself.  Oh my gosh, s o m u c h   l e s s   p a i n f u l ! And less bruising.  Injections have become much less traumatic. 🙂

Now for the even better news / information.  Chris and I have attended a couple of seminars (sponsored by the maufacturer of Copaxone) to educate MS patients and their families on what is new in the research field, what clinical trials are currently recruiting, and Wednesday’s seminar on the importance of long term (drug) therapy.  This seminar on Wednesday was very encouraging.  The doctor is one of the best in the field, and is part of the University of Texas MS Clinic here in Houston.

Here are some of the highlights:

1. In the twelve year period studied with patients continuously on Copaxone (a small group), the average was less than one relapse every five years.  Seriously, that almost made me cry.

2. In the same group, over twelve years, only 8 percent of patients progressed to a point where they have problems walking. Eight percent.  My doc has already said that the goal is that I never lose the ability to walk.  That is a goal I can embrace and with those numbers, seems truly achievable.

3. It appears that the drug may actually activate central nervous system repair – not just slowing or stopping the progress of the disease but actually repairing damage.  Now this is an area where the facts and evience are not all in, but just the prospect is exciting.

(BTW, the study’s are mostly ten and twelve year studies because that is how long the drugs have been available on the market.)

So that is what I learned this week. As if I needed more motivation (which I do not) to stay drug compliant, I now have all I need to get over my “ouch that hurt” pity party for me.

PS. They had a motivational speaker at the end, who encouraged us to continue to follow our dreams.  His anecdotes made me think of a couple of my favorite memories of Dad.  When Chris and I got engaged, his reaction was: 1. I’m so happy for you; 2. I’ve got to get my crutches out and practice; and, 3. How am I going to pay for this?.  That was so my dad.  And I loved him for it. And even after years of MS wearing him down, we did dance at my wedding (even if unintentionally) and it is one of my happiest memories .ever.