Spring 2010: When I Was ‘That’ Patient
My new neurologist, Dr. Bakker, is literally quite lovely and not that much older than I am. Between her and her nurses Bonnie and Shivaun I knew I was in good hands.
Them: You’re starting on Rebif now. Please note: it’s an injectable med that is Class C which means you need to absolutely not get pregnant while on it.
I was a good patient, did a couple weeks of Rebif, pretended it was okay until I finally said, “Well heck. I will regret it forever if I don’t at least try for one more baby.”
Yes, there would be 7 years between this baby (#3) and the next youngest (#2), but there was already 6 years between the first two, anyway; another huge age difference wasn’t really an issue to us.
So I called Dr. Bakker’s office and told Bonnie that I wanted to try to get pregnant: that I would give it six months or until I had another relapse, whichever came first. And she said, “Okay, you need to be off of the Rebif for six weeks before getting pregnant. Keep us posted.”
I am usually a fairly obedient patient – that was, by far, the biggest medical decision I’ve ever made on my own. Sort of. I did have to persuade my husband, too, obviously, but since I truly didn’t think it would work that’s pretty much why he agreed to try. 😏
The odds were completely against us: based on my previous pregnancies, I figured we had a zero chance of getting pregnant within six months. I mean honestly, I was twenty years old and it took nearly eight months of not trying to avoid getting pregnant, to get pregnant with our first when I was TWENTY and Mick was 22.
With our second I was 25 and it took about a year and a half to get pregnant.
This time I was 31 – even if I had been 100% healthy, the odds were seriously not in our favor.
Obviously MS was against us, too – based on the preceding few years I probably wouldn’t make it six months without any disease-modifying medications, either; realistically, I had maybe three or four months before I had a relapse. Assuming that I even GOT pregnant I was hoping it would be completely smooth sailing thereafter – generally speaking, a pregnant woman’s immune system goes on vacation so as to not attack the foreign body she’s growing. When a woman who has MS gets pregnant she often she feels fantastic (aside from the usual symptoms of pregnancy) because her immune system usually stops or slows down munching on the wiring system. Not always, though, that’s the thing: *Often* her immune system goes dormant, *usually* she feels fantastic.. It’s not a rule, though. We would deal with that if or when we got there.
First I just needed to get pregnant quicker than I ever had before (no pressure or anything)..
We found out we were pregnant at the end of August, 2010, which meant we got pregnant six weeks after my last dose of Rebif.
I did feel fantastic while pregnant! It was great! It was fun to go to Dr. Bakker’s office – I don’t think they have many pregnant patients there. I was feeling wonderful, I gained less weight with that pregnancy than with either of the other two, I scheduled the planned c-section that I always wanted..
Bonnie and Siobhan wanted me to breastfeed this baby. As a nurse had mentioned when I was first diagnosed, there is evidence that breastfeeding would help avoid or lessen the severity of an MS relapse after I gave birth.
I had breastfed for a combined total of about 6 weeks with the previous two babies – it was a gong show with the first baby so I quit after a month and we were both SOO much happier. Second baby, I breastfed a little bit for the first couple weeks and then quit.
Among my friends I was the one with the least interest in breastfeeding my babies…
OF COURSE it would be ME who ends up in a scenario where I HAVE to do it.
BAD. ATTITUDE. NOT. HAPPY.
April 21, 2011: baby arrives
Caitlin was such a lovely and calm and sweet newborn, so placid and wonderful. And for the first time EVER I had a baby who breastfed easily and right away – I never even imagined that would happen. We were a team and she flourished and I was happy as a clam and thought I would get to breastfeed her until she was close to a year old. It was great. We were happy, I was even happy that I had been wrong. Life is weird like that.
And so very cruelly unfair.
June 28, 2010: Should have known, really
I woke up with my right leg already numb from my foot past my knee; I went from ‘fine’ to ‘limping’ literally overnight. With every other previous relapse, it took a few days for the numbness to creep from my foot to above my knee.
Caitlin was just over 8 weeks old.
The next day the numbness was up to my hip.
I was scared to go to bed, for fear of how much worse my symptoms would be the next day.
Off to see Dr. Bakker and her nurses.
That appointment was the worst. I felt betrayed, I felt duped, I felt like I’d fallen for a lie. I SHOULD NOT BE HERE ALREADY THIS WAS NOT SUPPOSED TO HAPPEN. I felt like they had dropped the damn ball. WHAT IN HELL WAS THAT FOR?! You had me breastfeed for WHAT?! For NOTHING!! I would have been HAPPY to go straight to formula with my baby! I was one of the FEW MOMS who wouldn’t have even cared or KNOWN what I missed. I could have started on prednisone immediately after giving birth to treat the relapse that was GOING to happen before it even happened! But noooo, instead I should find out this baby and I are good at breastfeeding just so we can have it yanked away.
I sobbed. Maybe if I hadn’t given my baby some formula here and there, maybe if I’d just breastfed exclusively, I could have avoided the relapse? Bonnie said no – breastfeeding probably only slows the inevitable, but nothing really replicates pregnancy. I had been so focused on thinking that breastfeeding would avoid a relapse when it was only a possibility – there are no rules – it would maybe only lessen it. After all, once the baby is out, there is no avoiding the immune system ‘waking’ back up.
Looking back now, we had simply underestimated my disease. It’s always a numbers and statistics game, and in hindsight we maybe should have treated the disease more aggressively.. Or maybe not. I did get nearly two months before a relapse happened, if I hadn’t breastfed at all maybe it would have happened even earlier. And Caitlin did get the first couple months of immunity that babies get from breastmilk.
But at the time, in that appointment, I was the opposite of reasonable. Dr. Bakker wanted me to do a 5-day course of Solu-Medrol, same as I had had with my first MS flare and a few other times over the years. I wouldn’t be able to breastfeed during those 5 days and for one day after. I wanted to not. I wanted to tough it out and breastfeed my baby, dammit, THIS is what you people told me would work!
Luckily Mick was also there. The medical professionals and my husband talked sense into me.
So I grudgingly did what I was told, and did Solu-Medrol at the ER every morning, and pumped and dumped (and cried about) 6 days of breastmilk.
That wasn’t the end, though – of course they wanted me to start Rebif as soon as possible.
It is an every-second-day injection; between Bonnie and my pharmacist friends they poured over all the literature and information they could find and consensus was that it was most likely fine to also breastfeed Caitlin. Other mothers were on record as having exclusively breastfed while also taking Rebif and no ill effects were reported.
“No studies have been conducted on whether Rebif passes through breast milk. However, the drug is a delicate molecule that cannot be taken by mouth. Instead, it must be taken by injection, since the digestive system would destroy the molecule. Therefore, even if Rebif passes through breast milk, it would be destroyed and inactivated by the infant’s digestive system. However, since no studies have been performed, it is impossible to predict exactly what effects Rebif may cause in a breastfed infant.” (From Rebif and Breastfeeding)
So I continued to breastfeed – to be extra safe I did so no less than 24 hours after I had injected Rebif, and supplemented with formula or stored frozen breastmilk otherwise.
After about a month of this routine, on the way to the sink to dump a batch of breastmilk, I noticed it had a greenish tinge to it. Not even kidding. I held it against a frozen bottle of breastmilk from the month before and it was definitely slightly green.
I called my pharmacist friend and point-blank asked her, “You are the most pro-breastfeeding person that I know, and I am asking YOU. You know all the statistics and information on Rebif and breastfeeding. If you were me, would you be breastfeeding your baby while on this medication?”
She replied, “No. I would not. Because if you do, and Caitlin gets an illness down the road… something.. really bad… you wouldn’t help but wonder if the Rebif somehow caused it. The potential for future guilt is not worth breastfeeding now.”
And just like that, we were done with breastfeeding. Caitlin finished off the frozen batch from before Rebif and that was that.
Seriously. I would have been fine not even knowing how good we were at it..
February 2012 – balancing medication effectiveness, side effects, and quality of life.
Rebif is cute in how its main side effects are flu-like symptoms. Theoretically (presumably with the majority of patients on it) the worst of that effect wears off within the first few hours – the patient injects Rebif just before going to bed, the patient wakes up feeling fine in the morning. I guess they feel like crap while they’re horizontal and unconscious.
Maybe that’s the majority of patients.
The month I was also breastfeeding was fairly tough to function through the side effects. Once I wasn’t breastfeeding and I could take whatever painkillers I wanted I would inject myself with the Rebif, take some Tylenol and go to bed, get up the next morning, overdose on Tylenol and Advil before noon, and then take some more through the day. And then take a closer to normal dose of Tylenol and Advil the next morning, and feel almost fine for the six or so hours before I’d have to inject myself again.
All for a 30% likelihood of decreasing the frequency of MS relapses.
I went away for a women’s retreat with my church at the end of February and deliberately left my Rebif behind – didn’t want to deal with the side effects and didn’t think any further than that.
So I missed an injection, and noticed when I got home on Sunday that my functioning level was amazingly good! I called Bonnie the next morning and asked if I could bail on Rebif and she said I had been on it *just* long enough (six months) that they could say I gave it a decent shot – they could now apply for a different, better med. I just needed to not be on anything for four weeks so the Rebif would get out of my system.
Oddly, my functioning level went straight downhill and within a week, unmedicated, I developed a limp.
Dr. Bakker’s educated guess was that the Rebif had in fact been masking a relapse for an unknown amount of time – if the side effects of a drug are kind of like the symptoms of the disease you’re taking the drug for…
How long had I been taking Tylenol and Advil to treat the medication side effects when instead I should have been taking a mittful of prednisone to treat a disease relapse…? We’ll never know the answer.
I’m guessing ‘a couple/three months’ as I often had a relapse in December.
So they put me on a hugely high dose of prednisone for a few days and a taper for six weeks, and when the dust settled… I still had the limp. Looked officially permanent (seeing as I still have it five years later I’d say yes).
What’s annoying is I messed up my experiment! The extra variable here is that I quit working in the pharmacy in March 2011 – never went back after maternity leave. I’m not sure that standing on my feet for 8 hours a day, a couple days a week, wasn’t keeping my legs strong. Did the Rebif fiasco (rebifiasco..) take me out or was it my legs losing *just enough* strength while I wasn’t paying attention? Or was it the fast-and-scary relapse when Caitlin was a couple months old? Or was it just how the disease was bound to go eventually?
Way too many variables to really know.
April 2012 – finally, the good stuff
I live in Canada. I have no idea how this works in other countries although I have heard that the medication I was put on next is a frontline medication in other countries. In Canada you have to fail at two of the meds with lower effectiveness rates before you can move on to something statistically better. These ones also pack some significantly more hazardous side effects than the crap ones – things like heart problems and higher potential for brain viruses that make you dead before you even know that’s what’s happening. As I mentioned in this blog post, these are big-gun medications that the drug makers are twitchy about putting people on, so prospective patients have to be screened first and then regularly checked to remain on their medication.
*Aside: Don’t kid yourself. Drug makers probably don’t actually care about the patients, they just don’t want somebody up and dying while on their drug and messing up its statistics and effectiveness data.*
This is where I mention that when *I* started on Tysabri they didn’t even have a few of the ones that are now available. I would probably have started a pill one first if it had been covered by insurance at that point.
Regardless, they put me on Tysabri and it works great. I mean, yes, I still have a limp, but I also haven’t had a relapse since the ‘Rebifiasco’ in February 2012. Considering that, previous to that, I was having two relapses a year… yeah, this stuff is effective.
Tysabri is a once-a-month, hour-long infusion (kind of like Solu-Medrol in how it can’t be fired into the vein really fast or it would burn like hell). Wait, I’ve talked about this here and here – when I say ‘once a month’ I actually mean ‘every 28 days’ – I get fairly ‘delightful’ if I have to wait until (or heaven forbid, past) Day 29 😉.
I drive to a city an hour away, sit with a private nurse and chat about life while I get my infusion. My current nurse works in an ER on other days so she always has some interesting tales to share. Then I go shopping. It’s a pretty good system (usually. There was this one nurse… but that’s a whole other story..).
And that’s it: my Fun Ride with MS so far. I will fill you in when I have another 1000+ words more to share on it.