Monday, February 22, 2010

Plaquenil and pregnancy

As I mentioned last week, I was just at my rheumatologist's for a flare and he upped by dosage of Plaquenil (to 200mg twice a day, instead of just once a day). He reitterated that Plaquenil is safe during pregnancy, so he was hopeful that it would work for me and be a long-term drug.

A couple of days after starting the higher dose, I was having trouble sleeping, so I went to check out the prescribing information to see if it was a side effect. Turns out - no, sleeplessness is not a side effect of Plaquenil. BUT, I did find a section (in the Sanofi-Aventis prescribing info) that stated:

"Usage of this drug during pregnancy should be avoided except in the suppression or treatment of malaria when in the judgment of the physician the benefit outweighs the possible hazard. It should be noted that radiactively-tagged chloroquine administered intravenously to pregnant mice passed rapidly across the placenta. It accumulated selectively in the melanin structures of the eyes and was retained in the ocular tissues for five months after the drug had been eliminated in the rest of the body."

So at this point, I'm like - WTF? I don't want to risk a baby's eyesight! (For those of you not familiar with Plaquenil, it can build up in the eyes and cause damage. Plaquenil users like me need to have yearly eye exams to make sure it's not causing any damage.)

But, I really do trust my doctor and didn't think he'd lead me wrong, so I decided to do some research.

When you start poking around for this info, you find a lot of pros and cons, yeses and nos all around.

On the Johns Hopkins' site about rheumatoid arthritis drugs, they state that DMARDs should be stopped during pregnancy, but then in the next sentence say that "Hydroxychloroquine (Plaquenil®) is probably the safest DMARD for use during pregnancy." Then there's this article from the Lupus Foundation, in which a Johns Hopkins' doctor says she also continues Plaquenil during pregnancy because the risk of flare is more significant than the risk of side effects.

I finally found this article that indicates Plaquenil is considered an appropriate option for pregnant & breastfeeding women when needed. It states that the build up in the eyes was actually from a related, but more toxic, compound of the drug. Chloroquine (the drug referenced in the above the prescribing info) is not the same as hydroxychloroquine, which is what's in Plaquenil.

And the FDA says Plaquenil is a category C, which basically means you can use it if the risks outweight the benefits.

But, how long did it take me to find that? A while! It'd be nice if these "expert" sites (Johns Hopkins) and the prescribing information itself would be a little less CYA (cover your a**) and present all the info. But, working as a writer and dealing with CYA issues myself, I guess I understand. I'm just glad I know how to dig down through the research a little more. I hope my recap here will help someone else, too!

Wednesday, February 17, 2010

Back on the juice

So, I had mentioned last week that I thought my remission might be fleeting. Turns it out - it was. The RA is rearing its ugly head again. Lots of aches and pains and stiffness.

I just got back from the rheumatologist (I love that man!). He gave me a script for prednisone and suggested we double up the plaquenil (I had only been taking 200 mg/day). We talked about possibly going back on the Arava - since that seemed to work so well. But he told me he really preferred not to. He wanted me to see that I could feel better on drugs that would also be OK during pregnancy. He said "In 2010, there's no reason to be on drugs that make you lose your hair and keep you from getting pregnant." (See why I love this man!)

So - we'll see how it goes. I truly hope it works. Because right now, it's hard to take care of myself. But, we'll worry about that later, I suppose....

Friday, February 12, 2010

Research Recap

So the rest of the week has fortunately gone a little better than Monday. Anyone with RA knows how sporadic the symptoms can be - so frustrating! I don't know about you, but I like predictability. My joints apparently do not agree.... Oh well, as long as they are feeling better (still a little achy - but nothing to have a pity party about).

I've been doing a little more research on rheumatoid arthritis and pregnancy this week. While there's not a lot out there, I did find a few things to share (and to keep track of myself for future reference).

The Organization for Teratology Information Specialists actually has page devoted to studies on rheumatoid arthritis medications (Enbrel, Arava & Humira have their own reports as of right now ) and pregnancy:

The good news for me on this one is that there were no increased risk of birth defects for women who took Enbrel as compared to those who didn't. This supports anectodal reports that I also found:

I also found a good round-up of many rheumatoid arthritis drugs, as they relate to pregnancy, here:

It's really all encouraging news! Next appointment with my rheumatologist is February 26th. I plan to ask him when we should start testing to see if all of the Arava is out of my system (it's only been 3 months, though - so it might be a while). I also want to see what he thinks about me starting a prenatal vitamin. It's at least 6 months before we'd even think about starting... but hey, is it ever too soon??

Monday, February 8, 2010

Bye Bye Remission??

So, I said in my first post that my rheumatoid arthritis was essentially in remission. Well, at least I was before I stopped the Arava. It's days like today that make me wonder if it's slipping away. How would this feel if I were pregnant and on fewer meds (or no meds at all)? How I would handle a baby on a day like today?

It started off OK. Got up at 6:30, hobbled out of bed a bit, but that's just par for the course (I already have erosions in my feet). I didn't feel too stiff. Headed out for a walk. It was cold. Ankles were a little stiff, but not too bad.

Back home, ready for work. Pulling on my clothes and notice my fingers are a little achy. It's hard to open things now. Shoot up with some Enbrel, swallow a handful of pills (fish oil, folic acid, Plaquenil, Zoloft). Hopefully those will kick in.

Make it to my desk and the wrists start in. Take 400mg of ibuprofen - some days it feels like I pop pills like candy. Get up after sitting for an hour and my knee screams at me as I get it going. After about a minute of walking, it lets up.

So as I type this, my wrists are hurting. I can feel the swelling in my knuckles. And I wonder - how would it feel to have to hold a child right now? I held my 3 month old nephew on Friday - when I was feeling pretty good - and had to give up after about 20-30 minutes. 16 pounds weighs quickly on this weakened joints, it seems.

It's days like these I throw a little pity party and long for my youth. I'm only 29! I shouldn't have to deal with this. But so it goes. And so I go. Just a little more slowly.

Saturday, February 6, 2010

Pros and Cons

I'm sure I'm not the only woman who has a pros/cons list in her head about having children. I've just never met one, it seems. Everyone I know seems to have given little thought to the idea of having children, assuming it was just a given. I have never assumed that.

Growing up in a large Irish family, I used to help take care of cousins and second cousins, and I had a few babysitting gigs. I quickly learned that babies and children are a lot of work. Sure, they're cute and cuddly sometimes. But they also scream, cry, poop, get sick, choke on bacon (that's a story for another day) and can be downright miserable sometimes. People always say "it's different when it's your child" and perhaps that's true, but for about 10 years, I didn't believe it!

Since about the age of 16, I knew I didn't want children. Then, at 25, I probably didn't want children. At 27, I couldn't really see my life with a child, but it wasn't something I was going to rule out. As soon as I was diagnosed with RA, I thought I wouldn't be able to have children - and that triggered some serious thinking about it. Before, it was MY decision not to have children. Now, it seemed, that choice was being made for me. And it really made me question what I actually wanted deep down in my heart of hearts.

Fortunately, I met a great rheumatologist who told me not to believe anything I read about women with RA not being able to have children. It simply wasn't true, he said. He would fully support me if I decided to do so. So then, the pros/cons list started in earnest (with the help of the hubby, of course). Now, I will warn you, not all of these reasons are selfless. Really, having a child is not a selfless action. There's got to be something in it for you, or you wouldn't do it, right? I ask you not to judge, then, without seriously thinking about the issue for some time.

Anyway - here is the ever evolving list (in no particular order):

1. We could bring another life into this amazing love that we share
2. We would have someone else to share fun experiences with
3. We could raise a responsible, caring citizen of the world
4. We would complete an innate biological drive (seriously, this probably sounds lame, but when you get to a certain age, you just feel like having a child is something you want to do/were made to do)
5. We would have someone around when we get older to plan our care, visit us, etc.
6. We might get grandchildren (which seem to be all the fun of kids without the work!!)

1. We would lose a lot of sleep that first year
2. We could risk our relationship (studies show children do not improve marriages, rather they put strain on it)
3. Because of my RA, I may not be able to be there (physically) for the child at all times
4. We would have to sacrifice some luxuries we currently enjoy (trips, not having to worry about every penny we spend, etc.)
5. My RA may flare significantly after the birth - which I'm not sure I would handle well
6. I'm not 100% sure that my husband is 100% sure about kids

So the list is seemingly even. But it's not just a numbers game. The loss of sleep is temporary - and certainly doesn't outweigh any of the Pros on its own. But, con #3 is a biggie. As is #6. I guess those are the 2 I have to figure out.

Friday, February 5, 2010

My story

I'm a 29 year old nearly-newlywed - and I have rheumatoid arthritis. I was diagnosed just over a year ago, only a few short months after my wedding. It's been a bumpy road over the last year, but I am finally at a point where my health is in fairly good shape and I am essentially in remission (meaning I have limited swelling, pain and fatigue). But, that remission comes at a cost. That being some serious medications.

As of 2 months ago, I was on twice weekly shots of Enbrel (25mg/shot), plus daily doses of 10 mg of Arava, 200 mg of Plaquenil, 1 mg of folic acid and 50 mg of Zoloft. And about 2 months ago, my biological clock started ticking loudly. So - at my last rheumatologist visit, after finding out my white blood cell count was in the dumps again thanks to the Arava (I was at 2.6, with a normal reading being 4.5-10!) and after talking about the possibility of pregnancy some day - we decided to stop the Arava. (Arava is known to cause birth defects in animal studies and is considered category X for pregnancy. It also stays in the system for up to 18 months, so prior planning is essential for mothers-to-be AND fathers-to-be.)

Now I'm on everything but the Arava - plus regular doses of ibuprofen (400-800mg every few hours, depending on my level of pain). And, my research about pregnancy and rheumatoid arthritis has started in earnest. So, I decided to start this blog to keep track of my ramblings, my research and possibly my first-hand experience (though that's a long way away - as we're still not 100% sure about all this).

Right now my questions are:
Is this the right time to have a child?
Will my RA limit my ability to be a hands-on mother (considering my hands don't always work right)?
If we do decide to have a baby, what medications are safe for me to stay on?
Would my pregnancy be considered high risk?

If you're a mom with rheumatoid arthritis - or are considering becoming one - I'd love to hear from you!