Rituxan vs. Breastfeeding

I wanted to talk about the difference between when I had Allen compared to when I had Alana. I have had a very different experience with my NMO with each kid after I gave birth. After I had Allen I had to make sure I did Rituxan within 8 hours after childbirth. So needless to say I did not get much time with him after he was delivered. I had to go to a completely different floor to get my Rituxan since it’s a chemotherapy drug I had to be moved to the cancer floor. It took over 12 hours for them to infuse the Rituxan the nurse ran it very slow since I just gave birth. That was very hard for me as being a first time mom being away from my son for over 12 hours. By doing the Rituxan so quickly after childbirth my doctors were hoping it would help really decrease my chance having a relapse. After the first infusion I would have to do another round of Rituxan 2 weeks later at my doctors office. About week after my second round of Rituxan my NMO symptoms came back very badly. I started back on my daily symptom pills and was hoping for the best. About 9 months later I had a relapse ended up in the hospital to do PLEX. Within a month I had another Relapse ended back in the hospital for another round of PLEX. I was good for about 4 months when another relapse occurred and was admitted to the hospital again for another round of PLEX. After having Allen I really battle with my NMO even though I did my Rituxan very quickly it didn’t seem like it worked very well.

 

When I decided to have another baby this time I really wanted not to do Rituxan right after childbirth and try to breastfeed. Hoping that would maybe help prevent having a relapse. I had Alana 3 months ago and I am doing fairly well! Breastfeeding has been a challenge but I am hanging in there! My NMO symptoms are mild right now about a week ago they started coming back. The one symptom I am battling is horrible headaches, I went in for a nerve block and I hope it will work. I will honestly say I feel so much better breastfeeding vs doing Rituxan. My doctor is giving me till September to breastfeed then I will have to do Rituxan. I am hoping I will make it that long! I am being closely monitored by the doctors to make sure I do not flare. I go in every couple weeks to get my blood work checked, to make sure my levels are absolute. My whole family can’t believe so far how well I am doing with my NMO since having Alana. I am truly hoping this time I stay relapse free for awhile.

Update on Erin

Hi NMO patients and supporters,

I received a surprise call from Erin last night so I thought to update everyone on how she’s doing. It was a surprise because we haven’t spoken much. Ok – AT ALL. Erin and I used to speak several times a week and email almost daily but now that we have kids I’m happy to report that we’re just too busy.

Unfortunately, Erin’s had a rough go of her NMO (Neuromyelitis Optica) symptoms recently. She just returned home from her third round of PLEX and I could just hear in her voice the happiness to get out of the hospital and back to her beautiful son, Allen. Her MRI scans aren’t showing any new lesions so her doctors are having to rely on her word that she’s suffering in extreme pain. Although Erin receives regular Rituxan sessions, it just wasn’t enough to keep the symptoms at bay. Now her doctors wonder if she’ll need a daily dose of immune suppression like Cellcept or Imuran.

Besides the NMO, Erin has now become anemic and will require iron infusions via intravenous. This week will be quite trying as she’ll receive IV work for both her iron infusion and Rituxan.

Of course, we all understand how frustrating NMO can be. We get tired of telling others we aren’t feeling good and sometimes don’t even have the strength to say so. We get angry at our ever changing bodies. (Erin is fed up with the weight gain and inability to do anything about it. She’s tried juicing, Pilates and cardio workouts but when you’re in pain, you’re in pain.) So I was relieved to hear that Erin plans to speak to someone about her experience. She’s blessed to have a great support network. Her husband, Eric, is a God send and her extended family help her with her son, Allen. However, it’s just as important to work on our mental health so receiving perception from an outside party is not only ideal, it’s a necessity.

Mid May Erin plans to fly out and see Dr. Greenberg. She has a great team of doctors in the Denver area but like we all should be, Erin is an advocate for her own health so she’s chosen to receive an additional point of view and have Dr. Greenberg provide her with a check up.

Erin is providing almost daily updates on the Facebook groups and I know she’s grateful for all the support and kind words through her current challenges.

New year brings new experiences…like plasma exchange

Happy 2012! And in a few days on January 23, I shall say, chuc mung nam moi! as it will be the Lunar New Year, the Year of the Dragon.

The year of 2012 was off to a rough start for me. In November, I had my usual Rituxan treatments, but for some reason unbeknownst to all, my vision worsened a little after the first round. The doctor wanted to wait to see if my vision improved after the second round of Rituxan, especially since I was also receiving IV steroids (to stave off any possible allergic reactions to the Rituxan) prior to each chemo. Alas, my vision wavered back and forth from its previous baseline to worse again. Eventually, I was ordered to take 160 mg of Dexamethasone. Swallowing 20 little blue pills twice a day for five consecutive days was not the hard part—it was all the side effects that came alongside it: insomnia, restlessness, bloatedness, intense voracity of the appetite, and last but not least, moodiness (my husband may want to argue that I should stop blaming the steroids for this). Needless to say, I am at the heaviest I’ve ever been in my life, and I am not the least bit un-moody about it. I guess God is giving me sympathy weight gain with Erin…

I am ever the optimist though, and I must say all the restlessness and insomnia and insanity paid off because my closet was on its way to becoming the cleanest closet of the century. Instead of going to bed at a decent hour, I would methodically go through all our shirts and pants and decide which should be donated and which should be hung up and where. I even went through all of John’s shirts and my cardigans and buttoned the top button so as to keep them neatly on the hanger. And so all my neuroses come out with the steroids…

Steroids also tend to make me nest. That is, not only do I organize the closet, I start organizing and reorganizing the house. I recall a previous year when the steroids made me take apart my entire bookshelf and re-stack the books according to genre and then alphabetical order by author’s last name, first name. This time, since my bookshelf has remained in order, I decided to go crazy and shop for cute butter dishes, fancy floor cushions, and fake plastic fruit to display on the buffet cabinet. Yes, that’s right, I spent John’s hard-earned money on Granny Smith apples that we can’t even eat.

But that’s what made me happy, and John so kindly let me slip on by with my artificial bushel of artificial apples just because he is a good husband and knew there are just some things in life not worth picking a bone with (like me on steroids).

After the steroids had all been swallowed, the doctor decided to order five rounds of plasmapheresis or plasma exchange (which we’ll call PLEX for short). I had never had PLEX before though I’d heard it’s been effective in treating acute Neuromyelitis Optica/NMO attacks. Most patients have to check into the hospital as an inpatient and get a central line inserted in order to get PLEX. Dr. Greenberg, however, knew to ask me the pertinent questions that would determine the PLEX route we’d take. He asked me: (1) how much worse did my vision get from baseline; and (2) has my vision change affected my daily activities, and if yes, how much? I said: (1) 10 to 15 percent, and (2) not much at all. Together, we decided the optic neuritis was not serious enough (I know what you may be thinking—that all NMO flare-ups are serious, but you must understand that my vision is so poor already that the minimal change I experienced wasn’t that cumbersome) to call for such an invasive and inconvenient procedure such as getting it done with a central line. And so Dr. Greenberg said we would only move forward with the PLEX if he could find a clinic in Houston that would do it peripherally as an outpatient procedure.

He made some calls, and the next thing I knew, I was sitting in the Blood Donor Center at Methodist Hospital in Houston’s Med Center getting both arms poked with needles. How ironic is it that my previous neurologist whom I was under the care of for years used to take forever to treat me, and I often complained about his lack of timeliness. And now that I’m Dr. Greenberg’s patient, he moves so quickly that I barely had time to mentally process the idea of PLEX and thus had a few mini-breakdowns because, frankly, I just didn’t feel ready to encounter a new procedure.

I was assured by both the medical professionals and friends that the PLEX would be beneficial with minimal risk so I should not worry. But having to go in every other day for 1.5 weeks to get two needles put in each arm and then sitting there not moving for 2 to 4 hours and having a pressure cuff tighten the hell out of my upper arm all the while having to squeeze a ball in the same hand even though my fingers were going numb were enough to drive a person to tears. And that’s exactly what happened during one of my PLEX rounds.

Regardless of the bumpy road, I’m glad to report my last PLEX (for now) was yesterday. I survived them though my arms are quite banged up. But that’s how life is—we get knocked around a lot, and what I learned from all this is it’s okay to cry and get angry and yell and feel sorry for ourselves if only for ten minutes a day. I learned that we need to honor our raw emotions, that we’re not loving or respecting ourselves if we are not honest with ourselves. And then once we let it out, we must pick ourselves up and move forward, even if it just means putting one foot in front of the other and taking it a step at a time, minute by minute, day by day.

So with the Year of the Dragon just around the corner, a new era is on the horizon. Let’s make the most of what we’re given, be thankful for what we have, and remember that we are still human: embrace the humility.

And with that, I leave you with some pretty photos of Christine’s PLEX 2012.

Getting my plasma on