Wednesday, July 28, 2010

Thoughts on turning 30...

Today, I am 30. There, I put it in print for all to see. And you know, I think I'm OK with it. It's taken a while to get here, but I'm here. Along the way, I've had many thoughts about where I've been, where I am now, where I thought I would be at 30, etc. Children have, of course, factored into that.

There's definitely been some moments in the last couple of weeks where I thought "Oh my God, I'm about to be a childless 30-year-old!" But, now I'm back to "OK, I'm a child-free 30-year-old. Now let's go out for drinks!" :-P

All in all, I think I'm pretty happy with where I am and what I accomplished in my 20s. I got a degree, traveled, got married, bought a house, got settled in a career (oh yeah, and got a crappy autoimmune disorder, but faced it head-on). I don't know what this next decade will bring, but I'm hopeful. I'm looking forward to more travels, more experiences with friends & family—more good stuff all around, I guess.

So - I think we ought to let go of the notion that turning 30 being some big life-changing event that you should worry about and dread. It seems to me, 30 might just be the age where we finally get our stuff together. Here's to the big 3-0!

Friday, July 16, 2010

"Aches & Pains" Forecast

So I was just looking at the weather for the upcoming weekend and I see that the Weather Channel has a new "Aches & Pains" forecast. Here's the full nationwide map:

 (courtesy of weather.com)

In my area today, the forecast is a "5" for moderate aches & pains. This pretty much jives with what my knees told me walking up the stairs today. The "regular" forecast is noting a 50% chance of rain. In my experience, I'm always a little stiffer/achier on rainy days, even though I've been doing pretty well otherwise lately.

Some studies have shown weather does not affect arthritis, other studies have shown that it does. Obviously the Weather Channel is jumping on the latter bandwagon (and I totally think they should be!).

What's your experience? Can you predict rain by the creaking in your joints? Does hot weather make you feel worse? Or are your pain levels pretty constant regardless? Love to hear your thoughts!

Monday, June 21, 2010

"The Mommy Club"

What is "The Mommy Club," you ask? It's the strange radar-like ability for moms to hone in on and find each other in a room (even when kids aren't present), clump together in a circle to talk about all-things mommyhood (breastfeeding, childhood firsts - walking, teething, etc. AND poop. Always poop.) - and leave the non-moms standing with our arms crossed looking at our feet. Except, the "non-moms" these days feels more like the lone "non-mom" AKA, yours truly.

I'm probably overexaggerating this a bit (emotions have the effect on me), but sometimes it's just how I feel. And it doesn't feel good. I guess it brings me back to school and being the fat kid who got left out. Now I'm not the fat kid anymore, but I'm the childless one who couldn't possibly related to late night feedings, diaper changes, etc.

Everyone around me seems to be procreating; it's the age, I suppose. Sometimes I'll be at work amongst my mommy friends or out with girlfriends and they'll all be talking the mommy-talk while I sit silently staring off into space. It's not that I have nothing to add. I was a nanny for a couple of years, I do have some experience in these matters. But it feels like nothing I say could mean a thing to these women. They aren't trying to be mean, but you see - it's just that they are Mommies (yes, with a capital "M"!). I am not. I am an outsider. I do not belong.

All choices have their pros and cons. This is one of the cons of my current choice to hold off on children. Certainly, I don't think choosing to have children just to feeling like part of a group is a good move. But, during some of the darker days, it admittedly has been moved to the "pro" column of having children. Is it sad of me to admit that? Perhaps - but, hey, it's honest.

Monday, June 14, 2010

A funny thing happened on the way to the gym...

Ok - it was *at* the gym. Or the "fitness room" as it's officially called in the employee handbook. (Yes, we have a little gym at work - a treadmill, an elliptical, a bike, some weights - just enough to get in a decent 20-30 minute workout.)

So anyway - there I am all alone, gliding away on the elliptical, reading some truly thought-provoking article (alright, it was US Weekly) when in walks one of the gym regulars. But instead of in her gym-garb, she's wearing her regular work clothes. I thought, hmmm - okay - maybe she's here for some stretching.

Nope, turns out she was there specifically to talk to me. What about? To tell me how amazed she was that I come to the gym every day. "Hunh? Where's this coming from all of a sudden?" I thought.

She went on to explain that last week, she suddenly started having joint pain in her hands, wrists, feet and knees. She was terrified she might have RA or Lyme disease and headed straight to the doctor. Turns out, her group A strep titers were high (think rheumatic fever) and she was prescribed antibiotics. She's been on them for a few days and is already feeling better. But she wanted to make sure to tell me that she now "got" my discomfort - and applauded my dedication to the gym.

It was actually kind of weird. What do you say to that? "Um... thanks?" No, actually, I just told her that I'm actually doing pretty well these days and commisserated with her about the 20 steps we have to climb to go from the first to second floors (on those not-so-well-days for me). I wished her good health, of course, and she was on her way.

After she left and I thought about it more, I realized how different the world might be if everyone had to experience this all over joint pain at least once in their lives. I bet many of our "but you were just walking fine yesterday?!" or "oh yeah, I have that a little in my knee" interactions wouldn't happen. Not that I would wish that on anyone - just interesting to consider the possibilty...

Tuesday, June 1, 2010

Finally - a good article on arthritis pain!

I'm not normally a big fan of "Arthritis Today" because I don't really feel like I learn anything new from their articles. I consider myself a pretty well-informed patient, so it takes a little more effort to teach me something new. Also, when it comes to pain relief, most of their things I've read are all about exercise, exercise, exercise. Which I agree is important - but I already do that every day! What else ya got for me?!

So, when I stumbled across the "Five Steps to Pain Relief" article today in my Facebook feed, I was pleasantly surprised. Yes, it does mention exercise. But it also mentions some other good, practical tips. Plus - it admits that there are many societal barriers to arthritis pain relief, including the health-care system itself. Woo hoo! Thank goodness someone finally admitted that! I know from some of your stories I've read and one or two of my own experiences, some days it feels like people (some doctors included!) are all like "oh - you're in pain; well, sorry, but that's just part of RA..." Um, yeah - not helpful!

I don't know about you, but sometimes it makes me feel better just to be acknowledged, to have my pain accepted as real - and not something that's just in my head. It can be hard with RA especially because the pain can be so sporadic. Some people might think, "How much pain could she really be in? She was walking just fine earlier." I know part of caring about what other people think is my own problem (self-doubt, self-esteem issues), but I don't think I'm alone in that...

So, anyway - it feels good to be vindicated, especially by a well-respected organization like the Arthritis Foundation. And, I think I've found a new technique I want to try. They describe "contrast baths," where you alternate cool and hot water instead of sticking with just one. When my pain is just all over, I often try taking a hot bath. Most times it helps, but sometimes it makes things worse so I get out of the tub (or have hubby pull me out!). Next time that happens, I'm going to try switching right over to cool water to see if that makes a difference.

What are your go-to pain relief methods?

Sunday, May 16, 2010

Lil' Ol' Me?

One thing that makes having this not-so-fun disease a little easier is all the wonderful, supportive people I've met through it. Had I never been diagnosed, I never would've started this blog or connected with other blogs full of caring people like RA SB @ Confessions of an RA Superbitch, Wren @ Rheuma Blog, Leslie @ Southern Gal with RA and Lana  Living It, Loving It - just to name a few!

A couple of these wonderful ladies have passed along the Sugar Doll award to me:

For this award, you're supposed to post 10 interesting things about yourself, then pass along the award to 5 other great bloggers. Well, I think all of my readers who have blogs are great bloggers - so this goes out to all of  you!!

And because inquiring minds want to know - here's 10 things about me:

1. I used to volunteer on an underwater rescue team. I did everything from driving the boat, holding guide ropes for our ice divers and (when it wasn't icy) being a rescue diver myself.

2. I'm a writer not only online here, but also in my professional life. I write things like those "Exercise & Arthritis" brochures they have at the doctor's office, as well as those "School Bus Safety" coloring books your kids get on the first day of school.

3. My dream of dreams is to own my own bed & breakfast some day.

4. I LOVE the ocean. I would spend every day walking the beach if I could.

5. Per above, I got married on the beach at sunset - barefoot, toes in the sand, with just my parents & in-laws watching.

6. In college, I did my own "independent major" in biology & writing. It was a fun and liberating experience to create my own course of study.

7. I love to bake. I'm always fiddling with something in the kitchen - homemade bread, pizza dough, cookies, cakes, etc.

8. At the time of my RA diagnosis, I was actually in the best shape of my life. I had lost 70 lbs. and kept it off for a year, I was running every day & eating well. Makes you sometimes wonder about fairness in the universe... but I'm trying not to hold a grudge ;-)

9. I love book series that use the same character(s) throughout - the alphabet books by Sue Grafton, the Stephanie Plum novels by Janet Evanovich. It's like catching up with an old friend everytime there's a new addition.

10. My favorite way to change up my look is to dye my hair. I've been a variety of shades of blonde and brunette - and these days I'm sporting a dark raspberry red. Gotta keep it interesting!

I'd love hear some interesting things about you - either on your blog or in the comments. Let's get to know each other!

Monday, May 10, 2010

Maybe is a wonderful word...

From the very beginning of this blog, I think it's probably come across pretty clearly that I was on the fence about kids. I had my yes days and my no days. I even went through a "YES, YES!" 3-month period at the start of the year where I longed for a child, craved the feel of a baby in my arms, and nearly cried when I thought about not having one.

Oh how things can change. My husband and I both got promotions at work, there's talk of a possible big move in the next year, hubby & I had more talks about "us" vs. "us with kids"... and we topped it all off with a week spent with my 3-year-old niece and 4-month-old nephew. All of this made me realize how much I really love my life right now and how much a child would change that -- and how I'm not ready to make that change right now.

Here's my breakdown -

The promotion made me realize that I love being able to pitch in at work when they need me - staying late and saving the day.

The extra money from the promotions have afforded us some flexibility with the budget that's made me remember just how much I love being able to take off for the weekend with my husband - no destination in particular in mind, but wherever we end up, it'll surely be an adventure. I love our little team of 2.

The possible looming move made me question how I feel about parenting with my family around. I'm very close to my mom and dad and imagine I'd need to rely on them heavily if I flared when the baby came (which my rheumy says is pretty common). I also worry about making 2 big changes like that at the same time. My anxiety levels have gone through the roof with changes in the past (moving away to college, buying a house, etc.).. why push it? What's the rush?

Coversations with the hubby - he very nearly broke my heart when one night, after a few drinks, he said something along the lines of "I don't understand why I'm not enough for you." Oh. Dear. And in other conversations (sober ones), he's told me kids are OK, but he thinks right now he'd probably be happier without them. It's bittersweet in a lot of ways because both of these statements make me realize he cares about me so much that he would sacrifice a little piece of his happiness and security for me.

And lastly - the kiddo experience. I love my niece and nephew dearly and enjoy spending time with them, but this last trip really hit home to me how much children take over your life. Want to go out for the day? OK - as long as it works with naptime. And that's not because the kids can't adjust - it's because you need them to take a nap to help save your sanity after they've asked "why?" for the twelve-billionth time. (Or, at least that's how *I* felt about naptime.) Yes, the play times and cuddle times were awesome - but I get that now as an Auntie.

So, for me, kids seem to be moving to the back burner again. Not now, probably not a year from now - maybe never, but then again, maybe someday. That's the wonderful thing about "maybe" - it leaves your options open. And from the very start, I think that's what I've really been after - options. I didn't want to feel constrained by societal expectations that I *must* have children, or antiquated medical advice that I shouldn't because of my "condition." If my someday comes, great. But if not, I still feel a sense of peace because I had my chances to truly consider all of my options.

Wednesday, May 5, 2010

The Zoloft Zings

Since going off birth control about a month and a half ago, I also decided to taper down my Zoloft. I was on it mainly because it seems whenever I use hormonal birth control, I struggle with anxiety and depression. I'm a little prone to that anyone, but when I'm on BC, it starts to interfere with my life, so I get a little extra help from medical friends.

Anyway... over a month, I slowly tapered down until last week when I stopped. Starting from 50mg/day, I went to 37.5mg for 2 weeks, 25mg for 2 weeks and 12.5mg for 1 week, then off.

Now, the last time I went off Zoloft, I had horrible dizziness. My doctor at the time said Zoloft doesn't cause withdrawal and I must just have an inner ear infection. Ok... Well, 5 years later I'm going through a similar thing. Yeah, I think Zoloft does have withdrawal symptoms, thank-you-very-much.

This time, fortunately, they're not as bad. I think that's because I wasn't on it as long this go around (about 1 1/2 years, instead of 5) and because I tapered more slowly. Right now, I just have what I call "the Zoloft Zings." I pretty much feel fine when I'm just sitting or walking in a straight line, but if I start to turn my head a lot - ZING! I get this weird "altered" feeling for a few seconds. Kind of a dizzy/cloudy feeling. Honestly, it's not that unpleasant - hah! :-)

I'm doing just fine, really, but I wanted to share in case anyone else out there goes through the same thing. It's frustrating to have a doctor tell you it's not real - or it's something else that can't be treated anyway. The good news is, in my experience, it doesn't last forever. I think last time it was about 2 weeks before the dizziness was fully gone. So far, I'm on day 6 of the Zings and they're getting less and less every day.

Isn't it fun dealing with all these medicines and there side effects?!? Anyway - now I'm happily down to just Enbrel, Plaquenil and Aleve (plus some vitamins & fish oil - which fortunately have no side effects for me).

I don't think we'll be trying for a baby anytime soon (that's for an upcoming post), but it's nice to know that if we do decide to go for it, I'm off all the medications I didn't want to be on while TTC. It's taken 6 months, but I'm there!

Tuesday, April 6, 2010

One less pill to take - hurrah!

I just finished my last pack of birth control for what will hopefully be a while! No, we're not ready to start trying quite yet, but I'd been having some unpleasant side effects and we figured it'd be good to give my body a break from the pill so when we are ready to start trying - we can jump right in!

For now I'll be using the fertility awareness method (FAM) for birth control. I learned this technique a few years ago and really liked it. But then life got crazy and it was hard for me to follow (since you have to take your temperature every day before you get out of bed - hard to do when you're always on the go!). But now that life has settled into a more predictable routine, I'm hoping I can give FAM a real shot this time.

The upsides are that it's drug-free (bringing the AM pill count down to "just" 6) and it helps you determine when you're ovulating. So, when we're ready to try, we should have a good idea of the best time to get pregnant. If you're interested in learning more about FAM, I highly recommend checking out the book "Taking Charge of Your Fertility" or visit www.tcoyf.com.

We're definitely making progress from where we were when I started this blog. It's been a great catalyst for talking more with my husband about what we both want for our futures. Right now, we're at the point where a baby is all just a matter of timing. I'm hoping we'll start at the end of the summer/beginning of fall, but we'll see. Just knowing that it will happen at some in the near future seems to have calmed my ticking biological clock, so I'm feeling a little more patient these days.

Friday, March 26, 2010

Exploring the connection between food and inflammation

Last week, when my wee toe decided to throb mercilessly for a couple of days, I had myself a little pity party. For me, pity parties often involve chocolate. Or ice cream. Or cookies. Or all of the above. While I do watch my weight very carefully, I don't think it's wrong to indulge on occasion. However, when "on occasion" turns into 2 or 3 times a day, several days in a row—then we have a problem.

After few days of reckless eating—and really only feeling worse about myself—I decided enough was enough. I recommitted to a more balanced diet this week, and whether it's coincidence or quick effect, I am actually starting to feel better. My toe has quieted down and I'm able to exercise for about 20 minutes at a time without getting too achy.

Curious about this, I did a little poking around and found several sources that indicate refined sugar can be an inflammatory food. Likewise, certain oils and fats found in a lot of packaged cookies and other goodies, as well as animal fats and dairy, can all cause inflammation in the body. And a lot of the foods I decided to replace my poor choices with, like more lean protein, nuts, beans, berries, etc., are considered anti-inflammatory.

There is some evidence out there that certain antioxidants act on some of the same enzymes as popular arthritis pain medications. Ever heard of a COX-inhibitor (say, Celebrex)? COX is a type of enzyme that plays a role in inflammation, which is what causes arthritis pain for a lot of us. It turns out that certain foods and drinks can have the same COX-inhibiting actions as well-known medications.

Take red wine or tea, as an example. Both contain polyphenols, such as catechins, which are antioxidants that specifically target COX-2 activity and help reduce inflammation. Of course, not everyone can drink red wine (esp. if you're on methotrexate or trying to get pregnant!), but tea is tolerated by most.

Another natural anti-inflammatory is omega-3 fatty acid. Numerous scientific studies have shown omega-3 fatty acids can help reduce inflammation associated with heart disease, arthritis and other illnesses. I mentioned previously that I take fish oil capsules, as recommended by my rheumatologist. But there are a lot of natural sources of omega-3 fats, too, like fatty fish (such as salmon, halibut and sardines), walnuts, flax seeds, broccoli and kale.

Soy, berries and spices like turmeric, cinnamon, garlic and hot chilies are all high in antioxidants and can have anti-inflammatory effects, too. I always knew healthy eating didn't have to be boring! I'm going to keep trying to eat more of these anti-inflammatory foods and see how things go. I have a birthday party tomorrow that I'm making a delicious (albeit sugary) dessert for, so I'll also be interested to see how that affects me.

Anyone else have certain foods that bother your arthritis? Or ones that make it better?

Wednesday, March 17, 2010

How can something so small hurt so much?

Warning: Rant ahead....

1 week off the prednisone and I am feeling it. I hate to complain because I know so many of you are in more pain that I am. I just got so used to feeling good that this really stinks! My hands are achy, my ankles are stiff and my little toe is KILLING me! Seriously - it's just a wee toe, but it is hurting something awful today. I have erosions in the last 2 toes (the little one and the one next to it) on both feet, but most days with my granny shoes and orthopaedic inserts, I get by. Today my right pinkie toe wants nothing to do with shoes and is barely tolerating socks.

I think the worst part of it is that I kind of have to keep the pain to myself (well, other than sharing anonymously with the world wide web). See, no one other than my hubby and my rheumatologist know about the plan to have a baby. Not my friends, not my mom - no one. So, they don't really understand why I can't try a new medicine, go back to the Arava, etc. I know it's because my rheumy wants to keep me on a regimen that I can keep once we start TTC... but I really don't want to tell anyone that yet.

Why? I guess part of me feels like if I tell, then I'm committed to it. What if I change my mind? I'm 90% there... but life happens. I've got months to go before the Arava is out of my system. Which means months before we can start trying. A lot could happen! I guess part of me also worries that if we try to have a baby but can't for some reason... well, I don't know that I want to have to share that with others. Right now everyone close to me thinks that I just don't want to have kids - and that just seems easier.

Well, easier except when it comes to explaining why I'm limping around in pain. Right now I just use the excuse that the Arava was wiping out my white cells (true) and that my rheumy wants to wait another month or so to give the Plaquenil time to kick in (also true). So, it's not a lie... it's just not the whole truth.

I think if the Plaquenil doesn't kick in, we'll consider a small dose of methotrexate. I initially started on methotrexate when I was first diagnosed in October 2008. It didn't do much on its own, so we added Enbrel in December 2008. I think by that time I was up to 9 methotrexate tablets per week. While that seemed to get the pain and swelling down, the methotrexate left me incredibly tired (other than going to work, I did nothing for 2 days after taking it) and my hair started falling out. So, in March 2009, I swapped out the methotrexate for Arava. All was well and good until the white cells got super low...

Given the history of fatigue and hair loss, I'm not super excited about going back to the methotrexate, but my rheumatologist thinks we could do a lower dose and hopefully avoid the side effects. He explained that methotrexate tends to work well in combination with other medications - like Enbrel and Plaquenil - so you don't necessarily have to take as much.

But as far as pregnancy and methotrexate - they don't mix. You have to quit the methotrexate before you start trying to conceive, but there isn't a long washout period like there is with Arava - only 1-2 months (vs. up to 18 for Arava!!). Methotrexate can cause birth defects and miscarriage. (An injected form of it may actually be used to end tubal/ectopic pregnancies - so it's serious stuff!) So, it would really be a short-term solution to get me through to TTC time.

Right now, I'm just taking my Aleve, keeping my foot up and hoping for the best. Dear Plaquenil - please kick in soon!! And dear Arava, please get out of my system soon!!

Monday, March 8, 2010

See ya later Hilda! (a post about prednisone)

Today is my last day of a 20-day prednisone taper. I'm very happy to say goodbye to Hungry Hilda (my alter ego who comes out when I'm on the juice and demands food every 2 hours), though I worry how I will feel in a few days. I suppose we'll cross that bridge when we come to it!

Being on prednisone for the 3rd time in a little over a year and experiencing more side effects this time got me thinking more about this "wonder drug." Yes, it makes me feel better pretty quickly. But this time, there was also the insomnia, Hungry Hilda, and the messed up menstrual cycle (just a day late this time, phew!).

A couple of readers noted they've had problems with their cycles, too. It got me wondering if the effects extended to ovulation - since prednisone might be something I'll have to use if I start flaring again when we start trying for a baby. Turns out - there is some evidence that prednisone *can* affect ovulation.

Prednisone is a hormone, so it can mess with other hormones in your body - including follicle-stimulating hormone (FSH) and luteinizing hormone (LH), both of which are necessary for normal ovulation. For women with normal levels of hormones, it appears that higher doses of prednisone may delay or suppress ovulation. For women with high levels of androgens (for example, women who have poly cystic ovarian syndrome - PCOS), prednisone may actually suppress the androgens enough to allow the body to ovulate. So - I guess we can say that yes, prednisone affects ovulation - but it could be a good thing or a bad thing, depending on where you're starting from. Interesting info - and definitely something to keep in mind.

Also a little tidbit for any guys with RA out there -  I also read prednisone can lower sperm count at high levels.

OK - enough about the prednisone for now. I'm off to feed the Hilda! :)

Sunday, March 7, 2010

Balance

The sun was glorious today and it warmed up to about 50 - downright balmly for March in New England! My husband and I decided to get out and enjoy the weather with a walk. I suggested we do our "long" route, which is about 3 miles. My husband said "OK, but as soon as your feet start hurting, we're turning around," as my feet have hurt on nearly every walk, long or short, lately.

It turned out that my feet didn't start bothering me until after the 1/2 way point, so we kept on our way. By the end of the walk, I wasn't as achy as I had expected, considering that was the longest walk I'd taken in at least a month. Still, I needed to rest for a bit before going out to lunch, just to get my feet back to normal.

Since I started feeling the effects of being off the Arava, I've had to get back to this idea of balancing rest and activity. When I was in remission, I was in this sweet place where I could pretty much do whatever I wanted. Stand up baking cookies for 4 hours on end? Sounds great! Do 30 minutes on the bike in the morning, 20 minutes on the elliptical at lunch and walk around town at night? Sure, I'm young - let's do it!

These days are different. I'm still lucky enough to be able to get some exercise most every day, but it always needs to be followed by a rest. Like most RA-ers, I get frustrated by this sometimes. But I know that it's really the best thing for me, since if I push it, I'll pay for it.

So this got me thinking about the energy of kids. Take my 4-year old nephew who pratically bounces all the time. He may be an extreme example - but he is just a ball of energy. I usually try to get him to play Legos or Lincoln Logs to give me a bit of a break, but that only lasts so long. I try to play as long as I can because I feel bad about saying "I can't." 

Here's what I'm wondering: if it frustrates me, a logical 29-year old woman, to have to take so many rests - how does a 2, 3, 4-year old deal with it? Does your child just get used to it because he/she grows up only knowing that? Or does he/she struggle? If so - do you feel guilty about your child's struggles? (Not saying you should feel guilty! I'm just wondering if you do... if I would... ??)

Tuesday, March 2, 2010

Practicing for baby

I swear the prednisone is helping me understand the sleeplessness that will ensue if/when baby arrives. If I take it after 5pm, I have the worst time sleeping. Last night, I didn't get it down until after 6, so I tossed and turned for about an hour before falling asleep. Then I was awake at 12.. and 2... and 4... and finally got up at 6. Fortunately, I took another "hit" of the juice this morning - so I'm up and running again! Ha!

I am definitely feeling better than I was 2 weeks ago. I still have some aches and pains, but they're totally manageable - and my rheumy thinks things might get better the longer I'm on the Plaquenil. 6 days left of the prednisone - a good night's rest is in sight!

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: http://www.otispregnancy.org/hm/inside.php?id=40

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:

http://www.momswithra.com/index.php?pr=Medications

http://musclesandra.blogspot.com/2008/11/pregnancy-and-ra.html

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

http://emedicine.medscape.com/article/335186-treatment

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):

PROS                                                               
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!!)

CONS
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!