Rheumatology Nurse Practice: Family Planning & Pregnancy Issues in RA

A few weeks ago I shared on Instagram that I recently had the opportunity to write an article on what women wished their rheumatology teams had told them before getting pregnant for Rheumatology Nurse Practice - the magazine published by the Rheumatology Nurses Society. I was thrilled that they wanted to include the patient perspective, and very happy to have the opportunity to share not only my insights but also some gathered from other mamas in my Mamas Facing Forward group. 

In addition to including the patient perspective, I think RNS has managed to create a MASTERPIECE of information on pregnancy with rheumatic disease that was completely missing when I started my own path to motherhood. The issue includes an explanation of the FDA's new medication labeling system for safety during pregnancy, current data on DMARDs during pregnancy, the importance of encouraging patients to join pregnancy registries, real experience from rheumatology professionals managing their patient's pregnancies, advice for new parents living with RA, and even a pull out poster with current clinical recommendations for the use of various medications during pregnancy. 

I'm over the moon to see this issue getting so much detailed attention - and I hope that this magazine ends up in the hands of many rheumatology professionals! And, for patients who might want to take a look themselves, I'm happy to report that the issue is now available for free online! 

Rheumatology Nurse Practice: Family Planning & Pregnancy Issues in RA

A Decade of Living With RA

I've been so busy recently that it would have been really easy to let this anniversary slip by unnoticed - maybe part of me even wanted to. But I am now 35 years old and I have officially been living with RA for ten years. 

I've also been blogging about RA for a decade - and I've come a long way in that time. Some of you have been with me almost since day one, some of you found me years later, or maybe you just discovered this blog recently. But, for anyone who wants to remember or learn what the last ten years have been like for me, you can take the trip down memory lane that I just took myself:

 Year 1

Year 2

Year 3

Year 4

Year 5

 Year 6

Year 7

Year 8

Year 9

I have to admit, re-reading the first few years after my diagnosis was rather difficult for me to look back on. While I've certainly accepted RA as a part of my life at this point - and I know it has even helped me identify new passion and a career helping others who live with chronic illnesses - reading the words I wrote ten years ago reminded me about who I was back then. And how unbelievably hard it was to watch my life change so drastically. How monumentally frustrating it was to live in a body I felt I couldn't control. How scary it was to look in the future and feel like I had no idea where I was going and what my life might be like. But I've come a long way since then.

Today my career as a freelance health writer has continued to expand. This year I wrote for RhuematoidArthritis.net, Rheumatology Network, Women Magazine, NewLifeOutlook RA, Arthritis Today magazine, and Rheumatology Nurse Practice. I was interviewed by Healthline, did a Healthline video interview, was featured in the U.S. Pain Foundation's INvisible Project, was included in a list of health advocates to follow by HealthCentral and another list by Everyday Health, and I had the opportunity to share my voice a few times in Arthritis Today. I've now been listed as one of Healthline's Best Rheumatoid Arthritis Blogs for seven years in a row.

Over the course of my tenth year with RA I volunteered at JA Camp and traveled to conferences and advisory boards in Dallas, New York, San Diego, Phoenix, Austin, and Chicago. I launched into public speaking a bit more this year too - something I hope to continue doing going forward.

My Facing Forward series finally came to a close after interviewing over 100 individuals living with invisible chronic illnesses, representing more than 110 different diseases and and conditions. My Mamas Facing Forward Facebook group has grown to 900+ members from all over the world and continues to grow. I was very excited to receive a grant to launch mamasfacingforward.com - which will hopefully be up and very running soon!

Most important of all, we welcomed a baby girl to our family in January! 

We had a bit of a rough start - as I had to be re-hospitalized for three days when mZL was less than two weeks old, and she had to spend a night at the Children's Hospital at four weeks - but at least my third pregnancy was significantly easier than my first two.

It is absolutely amazing to see how much the research has changed between my first baby and my third. With OZL, I struggled through pregnancy essentially untreated and stopped nursing him at three months to start taking Enbrel again. With CZL, I struggled through most of my pregnancy untreated until things got so bad that I was forced to re-start Enbrel during my third trimester, even though the safety data wasn't as good at the time as it is now. I breastfed him while taking Enbrel, but I think my RA had gotten so out of control during pregnancy that it still wasn't enough, and I weaned him at three months also. 

With mZL I switched from Ritixan to Cimzia prior to trying to conceive. I stayed on Cimzia all through my pregnancy and I'm still taking it today. mZL is now five months old and we are still breastfeeding. I've had to add a bit of prednisone (my favorite!) to the Cimzia to keep me functional, but for the most part I am actually doing quite well physically. I think this is primarily thanks to being able to actually treat my RA while going through pregnancy and while breastfeeding postpartum. 

I am so glad that moms and moms-to-be today have many more options for actually controlling their diseases while pregnant and breastfeeding, and I truly hope things continue to improve for mamas going forward. This quick advance in data is in large part due to women being willing to participate in studies. I participated in two - one for Enbrel, one for Cimzia - through Mother to Baby, and if you are considering pregnancy with a chronic illness I highly encourage you to do the same! You might even end up helping yourself down the line!

While I am doing pretty well physically, those of you who follow me on Instagram may know that I've been struggling a bit emotionally. Between the needs of three kids during summer vacation and breastfeeding longer than ever before (which is both wonderful and challenging!) and trying to keep up with my work despite very little summer childcare and the never-ending housework I think it's easy to see how I've been a bit overwhelmed lately!

I retreated to the mountains alone this weekend (which is how I found time to write this post in the first place!) and I know after this break I'll feel a bit better about being home this evening. (I'll certainly be happy to ditch the pump in favor of my baby girl!) I have to admit, while August 15 seemed ridiculously early for the school year to start, now I'm sort of feeling like it can't come soon enough! Jokes aside, I do think things will calm down and settle into a good routine once school starts again. I'll have more time to focus on my work and myself, and that will be very good. And we all love baby mZL to bits so I couldn't possibly have it any other way.

Here's to the next decade! From This Point. Forward.

2017 Update: Biologics in Pregnancy and Breastfeeding

The exciting news is that the trend seems to be moving towards more and more safe options for women with RA who want to get pregnant or breastfeed their babies! So if you’re considering a pregnancy while living with RA, make sure you know all your options.

Read more at RheumatoidArthritis.net!

Biologic Use During Pregnancy Doesn't Increase The Risk of Infections in Infants

If you end up needing biologics, there is some exciting new data to support the use of biologic medications to manage RA during pregnancy.

Read more at RheumatoidArthritis.net!

News!

Those of you who follow me on Instagram will likely have already seen this news, but it just occurred to me that I hadn't yet announced it here! I actually blame the news itself for my lapse in brain power haha! ~;o)

We're expecting an addition to the family - and it's a girl!

The whole family is very excited, especially my five-year-old son, who had spontaneously asked me for a baby sister on multiple occasions. He keeps running up to kiss my belly at random times during the day. It's really the sweetest thing ever. His three year old brother was mostly just happy we broke the news with a pink frosted cookie, ("can I have another sister cookie pweese??") but even he seems to be adjusting to the idea and getting excited.

I'm currently about 14 weeks along and, for the most part, doing ok. Definitely still dealing with more morning sickness than I would like, but not quite as bad as the last time around (when I actually lost weight from vomiting so often). I certainly have some aches and pains, but this seems normal to pregnancy for the most part.

Considering what happened with my RA during my last pregnancy and after consulting with a perinatologist, I've made the decision to stay on Cimzia during most of my pregnancy. Cimzia is a TNF inhibitor, which are now generally considered quite safe for use while pregnant. I ended up using Enbrel last time around, which is also a TNF inhibitor. I had actually planned to go back to Enbrel this time, as it is a biologic that has been around for quite a while (a lot longer than Cimzia), I had already used it during a pregnancy, and I had at least some reason to think it would likely work for me. However, due to my insurance plan's step therapy policy, I was forced on to Cimzia. 

The perinatologist and I were both gearing up to fight my insurance - but before we launched our attack she did a bit more research on Cimzia. Although there is a lot less data on this newer biologic, she discovered something about the structure of the Cimzia molecule. It turns out that Cimzia lacks the antibody that is responsible for placental transfer. In English, this means that (at least in rodent models) none of the drug was transferred across the placenta to the baby. So, by happy bureaucratic accident, it seems I have ended up with what may be one of the safest TNF inhibitors for pregnancy. It's working relatively well (though not as well as the Rituxan, I'll admit) so I'm sticking with it for now. And I certainly already joined the Mother to Baby study to contribute our data to future moms-to-be!! 

Baby girl will be a planned C-section at the end of January. At some point in the future, I'd be happy to write more about how we made the decision to expand our family - because given my own health it certainly wasn't an easy one. I'm also happy to discuss my medication research and decision in more detail too. Though I plan to try to stop the Cimzia during the third trimester - so the baby can have live vaccines when she's born - I'll likely re-start soon after delivery and use it while breastfeeding too.

In the meantime, we're all enjoying watching my belly grow (and with baby number 3 it's definitely already growing!) The boys can't wait to feel her kick! And I promise to try to keep you posted on how things are going from now on!

Thank You, Biologics!

After nearly ten years of experience with these medications, I want to share the impact biologic medications have had on my life.

Read more at RheumatoidArthritis.net.

TNF Inhibitor Use in Pregnancy & Breastfeeding

When I first started thinking about becoming a mom after being diagnosed with rheumatoid arthritis, one of the biggest challenges was figuring out my options for keeping my RA under control while pregnant and breastfeeding.

Read more at RheumatoidArthritis.net! 

New York Times: Specialty Pharmacies Proliferate, Along With Questions

Last week, I was quoted in a New York Times article about specialty pharmacies. I think the article is a very insightful investigation of a very important topic. Many patients with chronic illnesses are captive audiences, forced by our insurance companies to use whatever specialty pharmacy they may choose. If these pharmacies don't live up to our expectations, we have no choice but to keep dealing with them if we want the medications that make our lives possible. This can place a huge burden on patients who are already living with chronic illnesses, so I am very glad to see this issue getting some real coverage.

Read the article here.

From Enbrel to Orencia to Rituxan

I've owed an update on this blog for a while now. Unfortunately I don't have a lot of time or energy today - so this is going to be pretty quick. 

After CZL was born I was able to breastfeed him for three months until the pain got too bad. I reluctantly weaned him to go back on the methotrexate. The best my RA had ever been controlled had been on Enbrel and methotrexate, prior to getting married and having kids. I sort of naively assumed that going back on that combination of meds would have me feeling better quickly. Unfortunately, this was not the case and I have been struggling with a lot of joint pain and fatigue since CZL was born. Well, really since before CZL was born.

Somehow the combination of Enbrel and methotrexate just didn't seem to be as effective as it had been four years ago, so we decided to try a different biologic. After fighting through a fair amount of insurance red tape, I finally switched to Orencia. For eight weeks, I injected myself with Orencia, which turned out to be a real syringe, not an auto-injector like Enbrel had been. So that made me a little nervous at first, but in the end I think the injections actually ended up hurting less. I tried to wait as patiently as possible for things to improve. But sadly they just didn't.

So we decided to switch biologics again, this time to Rituxan. After jumping through even more red tape (because they literally never make it easy for patients) I finally had my first infusion of Rituxan yesterday. I sat at my doctor's office for six hours with an IV, so they could give me the medication slow enough to make sure I didn't have a bad reaction. I feel pretty worn out today but otherwise things went as well as they could have.

In two weeks I will have another infusion of Rituxan, and the second one should only take about four hours. After that - if it works - I won't need another infusion for at least six months! But it will take several weeks before we will be able to determine if this medication will work for me. So please keep send good wishes my way that it does! Because I'm not sure where we will go from here if it doesn't.

Washington Post Interview

A few months ago I did an interview with a Washington Post reporter about how difficult and expensive it can be to obtain my biologic medications. The article came out today!

Biologics are revolutionizing care for some diseases, but they are very costly

LA Times Interview

The LA Times included a quote from me at the end of their article about approval of the first biosimilar. I'm glad to see them including the patient's perspective!

FDA approves knockoff of Amgen's Neupogen chemo recovery drug

USA Today Interview

Those of you who have been following me on Facebook and Twitter know that I have been crazy busy over the past couple of days advocating for the biosimilars bill here in Colorado. Then, just this morning, the FDA actually approved the first biosimilar drug - so I've done some interviews today as well. All of this is happening while I wait for the Orencia to (hopefully!) kick in, so though I am super excited I also feel like I was literally run over by a bus.

I promise a full update as soon as I have time to catch my breath! In the meantime, here's an article from USA Today I was interviewed for this morning:

'Biosimilar' drugs could save patients, USA billions

My Interview on CBS Denver

Recently I had the opportunity to testify in front of the Colorado Senate Health & Human Services Committee on the issue of biosimilars. While I think biosimilars represent great opportunity for increased access to treatment (more options for medications, potentially less cost) I also believe that it is important that patients - and their doctors - be notified if the pharmacy gives them a biosimilar instead of the biologic their doctor prescribed. That's what my testimony was about.

Yesterday a camera crew from CBS Denver came to my house to interview me about the issue - and CZL and I were on the local news last night! Unfortunately it's a really short segment on a really complicated issue, so they didn't actually end up using very much of my commentary. But I think some press about the issue is still a good thing.

Here's the clip if you'd like to watch it!

This System Is Very Broken

Last night my rheumatologist's nurse - one of the most amazing people on the planet - gave me a call. It was 7pm, well after office hours, but she still wanted to make sure that I knew that my doctor had submitted all the paperwork for my Orencia last week. In fact, she told me that he had done it from his laptop during my appointment. So mere minutes after we had made the decision to try the new medication, my doctor had already sent my pharmacy the information they needed via e-fax. 

After the extremely useful (i.e. severely depressing) conversation I had with the specialty pharmacy yesterday, I dropped both my kids off with their respective care-takers this morning and prepared to spend a good portion of my only child-free day doing more battle with the pharmacy. Here's how that went:

I placed the call at 11:12AM. It took over five minutes to reach a human. I decide to hope for the best and try again from the very beginning. When a human answered, I asked to set up a delivery of my Orencia. The agent asked for my member ID, my name, and my birthday – which I give to her. She asks me to hold. I wait. I wait some more.

Would delivery on Thursday be ok?

Hallelujah! You are seriously going to give me the medication I requested? I am so excited!

Can you confirm the shipping address?

I certainly can!

Will you be available to sign for the shipment?

This is something that annoys me. The pharmacy will tell me what day the shipment is arriving, but can’t give me any indication what time of day it might arrive. So my options are (a) to sit at home literally all day long waiting for it or (b) to accept liability if the package is lost or stolen. But today I am so excited about the prospect of getting my new medication that I happily accept the liability so we can move on. Then:

Oh. Wait. The system is not letting me process the claim. It says there’s no prior authorization. 

My bubble of excitement bursts. And here we go again. Here’s the nonsense I was expecting. I explain that I spoke to someone yesterday about the very same issue. I explain that I called my doctor and confirmed that he had e-faxed the paperwork over a week ago.

The only prior authorization I see is for Enbrel.

I repeat myself. She repeats herself. I repeat myself again.

Let me see if I can get a rep on the line for that. 

I hold for almost a full 10 minutes. Finally: 

Thank you for holding. The rep in the pre-certification department is unable to find any prior authorization for the Orencia in your file. All we can see is the one for the Enbrel. 

This is a nightmare. I repeat yet again that my doctor e-faxed the paperwork last Monday. 

They can’t find anything in the file. She went back a couple of weeks to check the fax system.

Did you hear me say that it was an e-fax? 

The system is only showing prior authorization for Enbrel. 

I take a deep breath. I say that it sounds like they have recieved the prescription for the Orencia but they are missing the prior authorization. Is that correct?

Yes.

I try to explain that clearly my doctor knows how to work their system as he has managed to send the paperwork for Enbrel in the past. I ask why he would have done it properly for the Enbrel but not for the Orencia?

We sent a prior authorization request to your doctor yesterday.

I ask why they waited a week to send this request if they had the prescription but knew the authorization was missing a week ago.

We had to process the prescription first. And the insurance said it was denied because there was no prior authorization.

This makes no sense and we are going in circles. I want to cry. I tell her that I feel frustrated because my doctor is telling me he sent everything but she is telling me they don’t have it. I ask her what I am supposed to do.

Have your doctor send the prior authorization.

I repeat, for what seems like the hundred billionth time, that he had already sent it the previous Monday. 

Well we can’t process the prescription without prior authorization.

Finally, I tell her I am in a lot of pain. I tell her I am struggling to take care of my children. I ask whether there anything at all she can do to help me with this situation. 

I can try to call your doctor directly.

I try to politely accept her offer while seething inside. Are you serious?!? Why wasn’t this offered to me yesterday?!? Or 20 minutes ago for that matter?!? I get placed on hold for at least another ten minutes. Finally:

I just had your nurse on the line. She is going to send in the form we sent yesterday. And once we get prior authorization we can set up delivery. 

Great. How long will that take?

24-48 hours. 

And then I will have to call back to set up the delivery?

Yes. 

So, literally a full forty-five minutes later, I get told that the best I can do is wait two days and then call again.

THERE HAS TO BE A BETTER WAY.

Time To Wean

I swear it feels like just yesterday that CZL was born, but little CZL isn't quite so little anymore! He weighs more than 14 lbs and he is almost three months old! CZL is a beautiful, happy little baby and his big brother OZL completely adores him. We are a very happy little family!

But, unfortunately (but not unexpectedly) I am not doing so well. Despite the fact that I am currently taking Enbrel and prednisone, my RA is flaring. Badly. And I am struggling every day with extreme fatigue (being up for CZL in the middle of the night is not helping) and terrible pain, especially in my hands and wrists (which makes literally everything baby-related painful to accomplish). Just like last time, I know it's time. It's time to wean.

But that doesn't really make it any easier.

I have so many mixed emotions right now that I'm not really even sure where to start. First of all, I guess I have to admit to being somewhat surprised over just how emotional I feel about weaning the second time around. I have grieved over a lot of things that RA has taken away from me - my active lifestyle, my career aspirations, the ability to hop out of bed in the morning feeling great...and breastfeeding. I really thought I had already grieved over losing breastfeeding when I weaned OZL. But somehow I find myself grieving all over again. Especially since this has been an incredibly easy nursing experience - CZL has a great latch, I didn't deal with any cracked or bleeding nipples this time, and my milk supply has been fantastic. But even though I absolutely knew this day was coming - and I know from my own experience how much more there is to motherhood after breastfeeding - I still find myself feeling unimaginably sad about weaning CZL.

And I'm honestly struggling a little bit with the fact that this may be the last time I ever breastfeed a baby. We knew that we wanted OZL to have a sibling, so even though I was sad to wean OZL I knew that I would have another chance someday. This time I'm not so sure. I always thought I wanted three kids, but I'm not sure how realistic that is for us. This past pregnancy was extremely difficult for me, and I'm honestly not sure whether I would be able to survive another one. We aren't making that decision anytime soon - I'm going to get my RA fully treated and then we will wait a few years and see how we feel - but it is possible that CZL could be my last baby. And that does make weaning just a little bit harder.

I also have to admit to feeling a little bit disappointed. I stopped nursing OZL so that I could start taking Enbrel again, but with CZL I was forced to start back on Enbrel during my third trimester. So, since he was already exposed to the medication (and the information on safety is better than it was two years ago) I made the decision to stay on Enbrel while nursing CZL. So I think, in the back of my mind, I thought I might actually be able to nurse CZL a little longer than I made it last time since my RA would theoretically be better treated. But, in reality, I think my body is just worn out from dealing with RA that has not been fully treated for four years. Despite being on more meds than I was last time, I am actually struggling just to make it to the three month mark. And that is a bit disappointing.

And then there's some complicated emotions that, although they have to do with stopping breastfeeding, actually have nothing to do with my baby. Like I mentioned above, it has been four years since my RA has been completely treated. I stopped taking methotrexate six months before APL and I got married so that we could start trying for a baby right away. It took us four months to conceive and then I was off Enbrel for a year while I was pregnant and nursing OZL for three months. Then, because we knew we wanted our kids to be close in age, I never went back on the methotrexate at all due to the amount of time it takes to start working + the amount of time it takes to get out of your system. It just wasn't worth it to go back on between kids. And while the Enbrel does help it has never been enough all by itself to control my RA. So, to reduce the overall amount of time I would spend with partially treated RA, we started trying for our second as soon as OZL turned one. But this time it took us 8 months to conceive. And then I was off Enbrel again until my third trimester. And though I am back on the Enbrel now, I'm still having a hard time. Because, all together, it has been four years that I have been living with untreated or partially treated RA. And I think my body is just completely worn out.

But once I am finished nursing CZL, I will have the whole wide world of RA medications available to me. My body will be my own once again and I can do whatever it takes to get me feeling as good as possible. And I am honestly excited about the possibility of feeling better than I have felt in a long, long time. Most of me believes that I will be feeling lots better soon, and I'm excited to have extra energy to be a better mom to my boys.

But there's also a part of me that's a little bit scared.

It feels a bit like going back to square one. When I was first diagnosed, it took a long time to figure out what my "new normal" was going to look like - and even longer for me to accept that "normal" and learn to be happy again. And I have to admit that I am a bit nervous to "rediscover" my normal, if that makes any sense. Because, for the past four years, the fact that my RA has been partially treated has been sort of a handy excuse to keep my spirits up when I wasn't feeling well. I knew things were crummy but I could always say to myself "don't worry! Things will be better when my RA is fully treated! I'm doing this for the good of the family!"

But...what if things are not better? What if the treatment doesn't work like it used to? What if I am still in a lot of pain or dealing with large amounts of fatigue - despite being able to take all the meds? And now I also have two little kids to raise? What if things aren't going to get better? I am trying to stay positive and take things one day at a time - the way I always try to keep looking forward. But I have to admit that, at least sometimes, forward seems a little bit scary.

Making Biologic Medications Accessible And Affordable

While I was excited to try the medication my rheumatologist suggested, I was shocked to discover that I would need to pay nearly $1,000 a month out of pocket! Learn more about my efforts to support The Patients’ Access to Treatments Act - legislation that makes medications more accessible & affordable. And find out what you can do to help!

Read more at RheumatoidArthritis.net.

Means To An End

Last weekend the weather was quite nice, so my mom and I went out into the backyard to to start attacking the one hundred billion leaves that were blanketing my lawn. Unfortunately my knees have been in so much pain lately that I found myself wearing double knee braces. And I only was able to do a little bit of raking before I had to give up and sit down.

I tried to remember the last time my RA pain had been this bad. Luckily, this blog is like a health timeline for me, so I scrolled back through my posts until I found the last time I was wearing double knee braces: right before my wedding and then again on my honeymoon.

There was a reason I was in so much pain at that particular time. Although I didn't make it public at the time, when my wedding rolled around I had already been off methotrexate for more than six months. I needed to get it out of my system so that it would be safe to conceive OZL. And although I stayed on Enbrel until I found out I was pregnant, Enbrel alone just wasn't enough to keep my RA completely under control. During the six months leading up to my wedding and the four months it took to get pregnant, I dealt with massive knee pain, excruciating hip pain, and extreme fatigue.

Luckily, I did experience at least some remission during my second trimester. But, by the time I hit the third, I was dealing with a huge pregnant belly and hip pain, hand pain, and major morning stiffness (not to mention a couple pregnancy complications). In the end I was put on bed rest until I hit 37 weeks, and OZL was brought into the world a bit early, which ended up being better for both of us.

I nursed OZL for three months until I reluctantly stopped so that I could start taking Enbrel again. Getting back on the Enbrel made a major difference in my quality of life and ability to be the mom I wanted to be. But since that time I have dealt with flare after flare because I never went back on the methotrexate.

Why? Because we want OZL to have a sibling. I have two siblings and APL has one. Neither of us can imagine our lives without our siblings and we really, really want OZL to have the opportunity to grow up with at least one brother or sister.

I never went back on the methotrexate because it was too much of a time commitment. It would take several months before it even started helping, plus however long I stayed on it to get the benefit, plus six more months to get it out of my system again before it would be safe to try to conceive another baby. We decided we didn't want our children to be so far apart in age. And, while we probably would have preferred to wait until OZL was a little bit older to start trying for a second baby, in our world the longer we wait the longer I end up dealing with RA that isn't completely treated. Which means I am living with more pain and more fatigue. So, after weighing all of our options, we decided to start trying for baby #2 when OZL turned one in May.

It has been seven months and unfortunately we are not pregnant yet, though I will admit that for at least two months my ovulation lined up so closely with my RA flares that we weren't even able to try. We are trying to remain optimistic, but in the meantime my RA has gotten worse and worse - to the point where I am wearing double knee braces just to stand in my own backyard.

The Enbrel just isn't enough on its own, and over the counter NSAIDs aren't helping. So I finally went to see my rheumatologist yesterday. With my options for medications severely limited by my desire to get pregnant, I agreed to try some prednisone (i.e. Satan's tic tacs). Prednisone and I have a long love-hate relationship. It is wonderful because it usually works great to give me less pain and more energy, but with prolonged use I get almost all of the nasty side effects. A few years ago, after being on prednisone for more than a year, I decided that the side effects were way worse than the benefit and swore never to use it again. But, of course, there are only so many options - especially when trying to conceive.

I know that I need more than just Enbrel to keep my RA under control so that we will have a chance to have a second baby. I am really hoping this will be a temporary commitment to prednisone, perhaps a month or two until I am pregnant at which point hopefully I will get some remission and not need it anymore. I don't look forward to moon face or weight gain or insomnia or blood pressure issues. But I do really look forward to growing our family - and that will make it all worth it in the end.

Sigh.

Last week, when I called Aetna Specialty Pharmacy for my Enbrel refill, I was instead informed that I would be unable to get my refill until I obtained a new prior authorization form. Though I was frustrated not to be given warning that I would need this paperwork, I got the appropriate form from my doctor as soon as possible. This morning I called back to order my refill. After confirming my Aetna ID number, name, and birthday, I had the following conversation:

Me: Hi. I would like to order a refill of my Enbrel.

ASP Person #1: Let me put you on hold.

(lengthy pause)

ASP Person #1: You will need prior authorization.

Me: Yes I know. I had my rheumatologist send the paperwork last week by fax. 

ASP Person #1: Yes but it hasn't been approved yet. 

Me: Oh. How long does that take?

ASP Person #1: 7 to 14 days.

Me: Really? I'll miss two doses if it takes that long. Isn't there anything we can do to speed up the process?

ASP Person #1: That's not my department. Here's a number you can call.

At that point I'm pretty sure I muttered something about this being a stupid system, then promptly apologized since I know it was not Person #1's personal fault. So I call the second number and get an automated machine, which makes me enter my Aetna ID number and my birthday and then confirms my name before turning me over to a human. But I'm not sure what the point of that was anyhow, because the first thing Person #2 did was ask me for the exact same information. Then this happened:

Me: Hi. I'm trying to find out how long it will take before I can get a refill of my Enbrel.

ASP Person #2: Ok. Let me transfer you over to the pharmacy.

Me: No! I just talked to them. They told me that I need to call you. 

ASP Person #2: If you want a refill you need to talk to the pharmacy.

Me: They told me I need a prior authorization, which my doctor sent. I am trying to find out how long it will take to have that approved.

ASP Person #2: Can you hold please?

(lengthy pause)

ASP Person #2: It has been approved.

Me: Really? The pharmacy said it would take 7 to 14 days.

(thinking: good thing I bothered to call this second number instead of just waiting to hear back from the pharmacy)

ASP Person #2: No, it's approved now. Let me give you the approval number.

Me: Great. So I just call the pharmacy back with this number and I will be able to order my refill?

ASP Person #2: Yes. I can transfer you there right now.

Me: Thanks!

But (of course) it was too good to be true. She transfers me back to the pharmacy, and, after a lengthy hold (of course) I get a human. She (of course) wants my Aetna ID number, birthday, and name for the fifth time. Then this happens: 

Me: I'd like to order a refill of my Enbrel. 

ASP Person #3: Let me put you on hold

(lengthy pause)

ASP Person #3: Oh. This was just approved today. Unfortunately you can't order a refill at this time.

Me: Why not? They just transfered me over here and said I could.

ASP Person #3: Well the system isn't letting me. It takes some time for the different systems to connect. 

(thinking: does it? Pretty sure the interwebs are instantaneous...)

Me: So...what does that mean?

ASP Person #3: You can try calling back in a few hours. Or maybe tomorrow.

Sigh. Forty-five minutes later, it turns out I might maybe be able to order my Enbrel in a few hours. Or tomorrow. Or in 7 to 14 days. It's unclear.

The only thing that is certain is that I will be missing today's dose of Enbrel. Sigh.

Feeling Special (Yet Again)

After researching, investigating, and endlessly discussing, APL and I finally determined that we had the best health insurance that was available to us for the time being. Despite the open enrollment period, we decided to stick with the health insurance plan that we already had. So we didn't change anything at all. The enrollment period just ended and the new plan year started on October 1st. 

Unfortunately, I have just been informed by Aetna Specialty Pharmacy (after 10 minutes on hold obviously) that simply being in a new plan year counts as having "new" health insurance, even though we did not change anything at all. This, of course, means that I need to get a new prior authorization from my doctor to get my Enbrel refill. Why is it that every time I talk to the "Specialty" Pharmacy there seems to be some sort of problem?

I am particularly frustrated about this one because I have been sick, so I put off taking my last dose of Enbrel an extra day to make sure it didn't make my cold worse. But now I am concerned that I won't be able to jump through the hoops in time to get my Enbrel refill in time for next week. This is partially my fault - I didn't realize there was only one dose left in the fridge - but I am frustrated that it never seems to be easy. And that I usually end up dealing with issues like this when I am not feeling that well.

Too bad my insurance forces me to get my Enbrel through this particular pharmacy, otherwise I'd have ditched this place after strike two. By my count we are on about strike six, but I have no choice but to stick with them.

In any event, here is an unrelated and adorable picture of OZL to make everyone feel better! Time to go get him from school!

Ughhhhhhh!

Speaking of "specialty" pharmacies, guess who called me this morning? CVS Specialty Pharmacy. The pharmacy responsible for this nonsense. The pharmacy that almost ruined my Christmas. The pharmacy I stopped ordering my Enbrel from over three months (and two specialty pharmacies) ago.

It was a voicemail with an automated call to remind me that I needed to order a refill. I was changing OZL at the time, so I had to call them back to ask them to please take me off their call list, which I had already attempted once with no success.

This time I at least talked to a human who actually apologized and assured me I wouldn't be getting any more calls. So hopefully that is the end but ughhhhhhhh. What a pain in the butt!! Why oh why can't I just go down the street to my regular pharmacy for my Enbrel?!?!?

In all fairness to specialty pharmacies, there is one that I actually had a great experience with. Wallgreens Specialty pharmacy did a very efficient job getting information from me and then simply proceeded to deliver my Enbrel every month without me even having to call them. The Enbrel just arrived, on time, every month. So if you've got the choice go with Wallgreens! And I only had one delivery from CuraScript but they weren't bad either. Though, now that I think of it, I vaguely remember getting an automated voicemail from them recently as well. So I guess I need to get in touch with them to get off their call list also.

So, in conclusion, specialty pharmacies = ughhhhhhh!