My RAD Life
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Day 1 (Thursday) – The day I wonder why everything is so hard.
I would have started this whole process last month, but I had a totally normal, randomly occurring cyst form in my ovary. I opted to wait a month to see if it goes away on it’s own.
I’m not really in a time rush after all, but I am very eager to get this show on the road. My “chem lab” and “pharmacy” have taken over my apartment, my vacations have been perpetually put on hold; let’s grow these future babies!
Well, one month later, I found out my cyst is still there. I couldn’t help but start to wonder if I’m destined for literally every medical thing to be more complicated than expected. Tried to push the thought away.
Day 2 (Friday) -The day the hardest part is just the beginning.
I opted to get my cyst aspirated versus go through another month or more of waiting to see if my cyst decides to go away on its own.
This was a hard decision because it was an extra $650, a three hour round-trip drive to the clinic in rush hour, and a needle-in-the-ovary procedure.
Met some friends for dinner who tried to encourage me…
Them: “You’ve had a needle pushed into your ovary – you’ve already been through the hard part!”
Me: “But I haven’t even actually started yet…” (cue appropriate use of crying/laughing emoticon)
Day 3 (Saturday) – The day I start hormone injections.
Luckily, being the RAD person I am, I have plenty of experience with injecting myself. The thing I don’t have experience with is mixing my own drugs… which I managed to mess up.
In my defense, it was early, I was running late, and I was a caffeine-addict avoiding coffee. So I grabbed 1ml of sodium chloride from the first vial and pushed it in the menopur vial without paying much attention. I took a look and it looked the same as it had before. Conclusion: the menopur vial must have been empty!
I pull the 1ml of liquid out and combine it with a second menopur vial, noting that this one most definitely has drug in it. The resulting liquid looks identical to before. Oops.
I troubleshoot and add an additional ml of sodium chloride to dilute it back to the required dose and then take half of it.
But then the internet scares me by saying you can only store it this way for 15 minutes.
Frantic call to the emergency nurse line and she told me I could store it for 24 hours and use it tomorrow morning — phew! Disaster (or really wasted money) diverted.
The nighttime shot went more smoothly.
Day 4 (Sunday) – The day I become an injection pro (and a living, human pin cushion).
Sunday happens to be my Enbrel day. Combine that with a genetic disposition of blood clots, which means I need blood thinners when messing with estrogen, and I had a whopping four self injections today. Go me!
Here’s what I’ve learned:
- Hormones have the smallest needles and don’t sting
- My blood thinner (Lovenox) has the widest needle which makes the injection site bruise and makes it hurt (seriously, who designed these things?)
- Enbrel has the longest needle of the bunch. WTH, Enbrel?
I also learned that brewing up eggs is hard work – my body is in RA flare fatigue status.
Day 5 (Monday) – The day I perfect my inner pep talk (aka talking to myself).
“You got this! Feed those future babies! You’re a needle ninja!”
– me, to myself
That’s right, I’ve started talking to myself before injections. And maybe my cat.
I was late for my nighttime injection because IKEA is like a black hole time suck, but other than that I’m feeling like I finally have a handle on this.
Hormones? No prob.
Day 6 (Tuesday) -The day this becomes tedious and I question everything.
This morning I went in to get blood work and my ultrasound. Then it was the waiting game.
You go in the morning to get labs, then they get sent across the city and you have to wait until the afternoon for results.
But I had a feeling the news wouldn’t be good. The ultrasound nurse counted five follicles that had shown growth. Five!
This is down from a resting follicle count of 21 and a hope for 15-20 eggs to come out of this.
I couldn’t help but cry in my car on the way home. Why is my body constantly making things more complicated? Why am I doing this to myself? What if I’m never supposed to have children?
That afternoon I broke the golden rule and hopped on Google and discovered that some people start out slow. I felt hopeful.
My nurse was pretty encouraging as well, telling me to wait a day or two to see my progress.
So I distracted myself with Pitch Perfect and ice cream and hoped for the best.
Day 7 (Wednesday) – The day my disappointment is crushing.
The news at this morning’s ultrasound wasn’t great. Five follicles, one not growing at all, two growing out of pace with the two biggest.
Tears. Lots of tears.
And talks with a supportive partner and supportive friends.
And, finally, talks with my nurse in the afternoon who left it up to me, but suggested I could cancel this round and try again next month with more aggressive hormone treatment.
My doc says that what he would advise his wife to do, so that’s what I’ve decided to do.
So goodbye to this month’s possible future offspring. Goodbye hundreds of dollars of drugs. Hello bruised stomach and thighs. Until next month….
Posted in RA/RAD on August 6, 2016
Perhaps this could be relevant to other autoimmune disorders, such as rheumatoid arthritis, as well?
Posted in RA/RAD on August 3, 2016
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.
Posted in RA/RAD on June 7, 2016
I’ve never understood why they make methotrexate and folic acid look nearly identical.
On vacation once, both bottles opened in my bag. I had to meticulously examine each yellow pill to sort them. Is this the little yellow pill (methotrexate) or the big yellow pill (folic acid)?
They should at least take the preventative measure of making these two very different drugs that are prescribed together different shapes and sizes.
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
Posted in RA/RAD on April 5, 2016
To RA patients like myself, drugs like Enbrel can feel like a miracle. Yes, we don’t want to rely on drugs, and, yes, there are side effects, and, sure, there are nasty warning labels. But the trade-off is life less limited by RA. Hope for a future that doesn’t include disability.
But that happily ever after is not the full story. Around 15-20% of Rheumatoid Arthritis patients have exhausted all the treatment options. The medications either result in too many side effects or become ineffective. For these patients, I imagine it feels like there’s not a lot of hope left.
A new drug just went through Phase 3 clinical trials that might offer these patients hope. Read more about it here.