Posts Tagged RA
Does rheumatoid arthritis effect fertility?
My fertility doctor thinks so, citing this study, but my rheumatologist disagrees. This lack on consensus means women aren’t counseled on this possibility by their rheumatologists and there is a general lack of information out there on the subject. But where does this uncertainty leave women like me, who are diagnosed with RA in the prime of our reproductive years.
In fact, women like me, who are diagnosed with RA before giving birth to their first child, have fewer children, possibly due to being on medications like methotrexate, which is linked to birth defects and therefore can’t be taken while trying to get/being pregnant or breastfeeding. It could also be because we’re choosing not to reproduce, fearing the burden of childbirth or raising a child with RA or passing our genes to our children.
It wasn’t until I was prompted by a gynecologist to test my ovarian reserve levels that I even gave this matter any thought. But now after being told my ovarian reserve is low, potentially due to RA, I do wish my rheumatologist would have told me to consider the possibility that my fertility might be effected by my RA earlier.
Had I considered this, I may have aligned my path to coincide with getting pregnant earlier or perhaps chosen to freeze my eggs earlier, a journey I’ve just set out on at age 33.
There are very few studies on the topic. This one, focusing on Systemic Lupus Erythematosus (SLE), found a higher correlation of SLE in infertile women than the general population, but the small sample size rendered the study inconclusive and its unknown if it would translate to women with other autoimmune diseases.
Others suggest that the higher incidence of inflammation which comes hand-in-hand with many autoimmune diseases could make it more difficult to carry a pregnancy to term. Autoimmune ID, a condition where your body’s immune system might attack an implanted embryo, resulting in a miscarriage, is more common in women with rheumatoid arthritis and other autoimmune disorders.
What’s more, it may take women with RA longer to get pregnant, perhaps due to trying to coordinate disease flares with needing to get off medications that would be harmful to the fetus.
Another thing to consider: autoimmune diseases may cause irregular ovulation, which can lead to more difficulty getting pregnant.
I don’t want to be too negative though, because many women with RA do successfully get pregnant and give birth, both naturally and through IVF. And one thing my rheumatologist and fertility doctor agree on is that, if anything, RA symptoms should lessen during IVF treatment as they do in pregnancy.
So what does this all mean? Does rheumatoid arthritis effect fertility? And what can we do about it?
Unfortunately, the answer is as unclear for me as when I started my research. I’ve taken all this inconclusive science, along with my own bloodwork showing low ovarian reserve, and my age (33), and have chosen to freeze my eggs with my partner’s support.
You’d think someone with RA would be used to their apartment being overrun by medications, but IVF takes it to a whole new level.
Here’s what my linen closet now looks like:
And here’s my fridge (my Enbrel now has company!):
And my kitchen counter:
I’m nervous about taking all the medications and what they might do to my RA symptoms, but I’m also feeling empowered about living in a time when I have the opportunity to freeze my eggs and get a bit of a fertility boost from science.
I’m finally sitting down to write a review of Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May.
Now this little book is only 183 well-spaced pages and I started reading it way back in October. So what the heck took me so long?
To understand that, a bit of backstory…
As a child, I was never very into dolls. I liked climbing trees and playing ‘kick the can’. I obsessed over animals more than babies.
When I was 8, I got a new baby sister. When my parents first put her in my arms I thought she looked like a sick alien. Luckily she grew into the cutest toddler ever.
I think what I’m saying is, I was never one of those girls who solely dreamed of motherhood. In fact, growing up, I didn’t give it much thought. I just knew that someday I would become a mom. It seemed obvious, but it was not something I obsessed over.
When I was diagnosed with RA, single and 29 years old, my mind immediately went to my hypothetical future children. Was I already too late? Would this disease prevent me from having kids? Would it prevent me from meeting a significant other?
Luckily, the answer to those questions was ‘no’. Although, it did get a bit more complicated.
I started dating my current partner pretty much right after my diagnosis (well, this isn’t entirely true, because we had actually been exes, broken up for several years). It is in fact probably my RA that brought us back together.
The diagnosis softened me and made me more vulnerable, made me want to seek the support of those I truly loved, those who didn’t judge me. The people who truly rose to the top of that list were my mom and my ex-boyfriend. Go figure.
Four years later, we’re still together and wondering how four years have already passed. We’re getting more serious about “us” and those big life questions – What type of living situation do we want? Where do we see ourselves in 10 years? How do we feel about building a family?
My answer to that family question was largely one of emotion. I told my partner that I really wanted to build a family, become a mom. That this is something I always imagined for myself. In fact, given my childhood attitudes and how little I’d actually thought about this, I was surprised at the severity of my emotional attachment to becoming a mom.
His response was built more on logic and fear. One of six kids, he agreed that family was something he always assumed he would have someday, but he was concerned. What would pregnancy and parenthood look like for me, given my RA? What did it mean to get off the drugs? How would the hormones of pregnancy change the trajectory of my disease?
We spoke for a long time and I promised I would dig into it and find more information. I also promised that if my health was truly at risk, we’d look at another path, like adoption.
Problem is, there’s not a ton of info out there about this topic. Suzie Edward May’s book became the sole title on my list of books on the subject.
The book compiles many first person accounts of their path to parenthood with RA, including Suzie’s. It covers the challenge of getting off your RA meds to become pregnant. It covers the decision whether to stay off those drugs to breastfeed. It covers the possibility of a post-pregnancy flare.
It definitely made me feel less alone in my path. It made me feel scared and hopeful at the same time.
You won’t always succeed. There will be days and parts of days where you are fed up and sick of pain. Sick of thinking creatively about pain, sick of not being able to do what you want to do, and sick of always having to consider your health. But remember – you have dealt with worse before. Have a cry and then pick yourself up and keep moving forward.
– Excerpt from Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May
Suzie doesn’t sugarcoat the hard stuff. I appreciated that, but it drove home what my partner had been trying to tell me.
This isn’t going to be easy. There will be hard times. You have to really, really want this. And you have to be willing to accept Plan B if it’s not in the cards for us.
I’d finished the book, but I felt more lost than ever. I couldn’t yet compose my complicated emotions on the subject.
In fact, the questions I had that Suzie glosses over are perhaps the biggest ones of all. She assumes that you’re reading this because you need kids. You have that drive and you really want your own biological children. But how do you arrive at that first decision? How do you know that you’re ready to take on the challenge of pregnancy and parenthood and ADD to it with the complications of RA?
Then my annual exam in January brought with it some news: I have a low AMH. I know, WTH is that, right?
AMH, or anti-mullerian hormone, is thought to be a good reflection of your remaining egg supply. And mine was quite low for a 32-year-old woman (according to my gynecologist, there is disagreement on what these numbers really mean and their importance).
Your AMH levels decline as you age. According to my doctor, the level decreases by approximately 0.5 each year after the age of about 25. So my low number is on a steady march to menopause.
The other thing that decreases over time is the quality of your eggs. This is why many doctors recommend having kids before age 35.
This led me to a fertility clinic where they told me some good news: my AMH may be low, but my egg quality is excellent.
So what does this all mean? Well, it basically left my partner and I doing some figuring. We both believe siblings are important and would love to try for two kids. Given my RA, my pregnancies would have some extra time built in, meaning a timeline that looks like this:
- 3 months off methotrexate
- 1-12 months trying to get pregnant and being off methotrexate
- 9 months pregnant and off methotrexate and Enbrel
- 1-12 months potentially breastfeeding and off methotrexate and Enbrel (this is optional, as formula is available exactly for these situations!)
- get back on the drugs and recover
- rinse and repeat
At this point, I had turned 33 and my biological clock was like the relentless tick-tock in the crocodile in Peter Pan.
If I got off methotrexate now and started the path to pregnancy, it would be more than a year before I actually have a baby. Meaning baby number 2 is well over two years away. Given my dropping AMH, baby number 2 might not be an option at all. And this is assuming we are ready to start trying right now, which we’re just not.
So my partner and I are moving forward on freezing my eggs. This will give us an opportunity at baby number 2 (and number 1 if we run into difficulty), even if my AMH is non-existent. And future baby number 2 (and/or 1) will benefit from the “excellent” quality of my 33-year-old eggs.
This is not a decision we landed on lightly. There are no guarantees when it comes to egg freezing. It’s expensive and not even remotely covered by my insurance. I worried we were just creating another delay in our path to parenthood by not just going for it now. Along with those concerns, I still have to be off methotrexate for 2-3 months (at least 2 months before the freezing takes place), which was a pretty scary proposition.
I’m currently on week 5 off methotrexate and feeling empowered about my decision to freeze my eggs. The weeks have not been easy. My symptoms are definitely flaring. My days are stiff and even my knees, joints that have never been symptomatic for me before, are getting in on the action.
I was truly hoping that I would get off the drug and feel great, realize it really wasn’t helping and be able to live a life free of this not-so-fun medication. The silver lining is that I know the methotrexate was doing its job, suppressing my symptoms.
This convoluted path to parenthood, the big decisions, none of it is easy. But I’m ready to share my thoughts and my journey. I believe it’s all going to be worth it, and that is the whole point of Suzie’s book.
…make sure you have a full understanding of the impact the process could have on your life, be prepared and have action plans and support in place to deal with situations that may arise. Be open to things not going as you may desire. The more you are open to these types of things the less mental stress you will go through if things don’t go to plan.
– Mother of two with rheumatoid arthritis, Australia (excerpt from
Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May
As a cat owner who uses the occasional muscle-relief lotion to combat arthritis pain, I was upset to read this article:
To summarize, the lotions that we use for our aches and pains, are fatal for our kitties. So if you use the lotion, don’t let your kitties lick you. If you use the lotion and then a blanket, make sure you wash the blanket after use before putting it in the same room as your kitty.
We all know those little purr-balls can help us feel better, so lets keep them safe!
Want to mail a little hope? RA Guy is organizing an RA hope care package exchange. I think this is an awesome, beautiful idea (I’m all signed up).
Give and receive a little hope by signing up here.
When I first got on medication for RA, I took my methotrexate the day it was prescribed (at one of the most depressing and sober happy hours I’ve ever been to) and my Enbrel as soon as it was approved by insurance and shipped to me. I was so desperate for relief, I didn’t think about what day of the week would be most convenient to take 8 tiny pills that make me exhausted and slightly nauseous. Or which day would be best to remember to take my shot, meaning I needed to be by my refrigerator with privacy, alcohol swabs and an ice pack.
At any rate, I recently decided to maximize fun by cramming it into a weekly drug-fueled night of excitement on what is already the best night of the week: Monday. Just kidding.
Monday nights for me now consist of trying to get a kick-ass workout in after work – usually weights and hip-hop dancing. The endorphins boost my mood and working out makes me feel powerful. That helps combat the feelings of weakness that go along with being dependent on drugs, the confusion I sometimes feel when I swallow pills that I know are both a cure and poison, and the wimpiness I feel when I cringe giving myself a shot.
After that, I make myself dinner and settle in for a night of relaxing on the couch. This is only made slightly less relaxing by icing my leg while my shot warms up, then giving myself my injection of Enbrel. Dinner is only slightly less appetizing when the second course is 8 pills of methotrexate. I find that eating a lot before and a little after taking my pills helps with the nausea.
I also find that some good, distracting TV helps. 🙂
Anyway, that’s my drug day routine. What’s yours? What makes it more tolerable for you?
Also, for those of you that made it through my drug day rant, I have an Enbrel PSA: according to one of the Enbrel support nurses, the FDA has now approved Enbrel to be unrefrigerated (stored at room temperature) for up to 14 days. The only caveat is, once you take it out of refrigeration, it should remain out and must be used within 14 days. For anyone who’s tried traveling with Enbrel (especially on long overseas flights after FAA regulations no longer allow flight attendants to store passenger drugs in refrigerators), this is awesome news.
I was trying to find the post with my Enbrel travel story, but I either never typed it or it’s poorly tagged. I’ll tell it quickly here. When I was flying to Spain I had to take a three hour domestic flight, followed by a four-hour layover in Miami, an 8+ hour flight, a taxi ride, and not being let into our apartment for two extra hours. Needless to say, my ice pack thawed during my layover and my Enbrel travel case was soaked.
This meant tracking down plastic bags of ice in Miami. The best the flight attendants could do was give me a bucket of ice that turned into a cold, wet bucket of water that inevitably got all my carry-on items wet because it had to be stored under the seat but only fit beneath my feet. In all that travel time, the only place that allowed me to use their refrigerator to store my syringes of Enbrel was the cafe in Spain where we killed time. After that fun experience, this news is VERY WELCOME.
I am long past overdue for a blog post! Things have been crazy in my world. My grandfather passed away and my sister had her baby seven weeks early (both are doing well). Meanwhile my works been busy (in a good way) and I’ve been fighting a cold ever since getting back from the funeral two and a half weeks ago.
To top all that off, I’ve been experiencing my strangest symptom yet: hives. I woke up a week ago with huge hives covering the back of my right thigh and a small part of the back of my left thigh. It’s evolved from being lumps, to a big red blob, to small bumps, to now taking on a purplish hue.
I went to my rheumatologist on Friday, and he ruled out the rash as a sign of Lupus. He also didn’t think it was a bug bite or related to my Raynaud’s/Chillblains. He told me to skip my Enbrel this week and follow up with a dermatologist if it was still around Monday, but of course they all seem to be booked through the first week in December. So that leaves me guessing and Googling at what could be the cause. A sudden onset allergy to Enbrel? A random reaction to my cold? Some bizarre complication of RA?
Have any of you experienced anything like this? My solution for now is to go to urgent care if it gets worse, and to do my best to ignore it until it gets better.
Just had to share that last weekend I had a great solo run – 13.2 miles (that’s a half marathon!!) on a beautiful, dirt, hilly trail. I was running VERY slow, but I had a great time and it was FUN! Barcelona Marathon, I’m on my way!
On another note, I tried Kari Carr’s Mediterranean wrap recipe. This was my version of the cashew cheese:
Throw the following into a blender and blend until cheesy (consistency of hummus):
- 2.25 cups of raw, unsalted cashews (I didn’t presoak because (a) what does that even mean? (b) why would one do it? and (c) who has the time?
- 1 cup almond milk (I used almond milk instead of water because I thought, why not?)
- handle of Italian parsley
- sprinkle of chia seeds (they’re apparently good for you and give you energy, so this was another addition to Kris Carr’s recipe)
- sprinkle of salt & pepper
I put the “cheese”, black olives, sundried tomatoes, and pumpkin seeds, onto collard greens for a super yummy (trust me!), healthy lunch. 🙂
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!