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

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!

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! 

My Seventh RA Anniversary

I was diagnosed with RA in June of 2008. It's so hard to believe, but seven years have passed since then!!

This year, the most important thing that happened was that I survived my second pregnancy and gave birth to my beautiful second son, CZL. It has been a whirlwind adjusting to being a mom of two little boys! 

I weaned my little guy after nursing for three months, which was still really hard even though I expected it this time around.  After CZL's birth, I went back on methotrexate for the first time in four years. Eventually I realized that the Enbrel wasn't working as well as it used to, so I tried Orencia and then switched to Rituxan, which I am currently cautiously optimistic about.

This year I did a lot of advocacy and awareness work. I participated in the Joint Decisions Empowerment Summit and visited the American College of Rheumatology Annual Meeting in Boston. I also attended the HealtheVoices conference in Jersey City and I worked on a biosimilars bill that was passed into law in Colorado. I started the Facebook group Mamas Facing Forward to help support mamas (and mamas-to-be!) living with chronic illnesses. 

I was also active in the press this year! I was interviewed for Medical News Today, the Washington Post, the International Business Times, the Denver Business Journal, the LA Times, USA Today, and CBS Denver. I started the Facing Forward series on my own blog, sharing the lives of others living with arthritis and other invisible illnesses.

My little guys keep my life interesting every single day! In addition to being the best mom I can be, this year I also hope to continue developing my support resources for mamas living with chronic illnesses. I also hope to be able to continue making a difference for the RA community.

From This Point. Forward!!

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

How To Try A New Medication In 100 Easy Steps! (Because If We Don’t Laugh, We’ll Cry)

Ready to try a new medication? Just follow these 100 easy steps and you’ll be giving it a try it in no time! (Since this is only a slight exaggeration, I hope we can all laugh about it together!)

Read more at RheumatoidArthritis.net.

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!

48-Hours In The Life of a #ChronicMom

For those of you who are not on Twitter, I've decided to include my #ChronicMom tweets here so you can take a peek into 48 hours in the life of a mom with a chronic illness!!

February 3, 2015:

6:43PM: Whatever happens tomorrow please don't let my honesty discourage you. Being a #ChronicMom IS hard but also awesome!

February 4, 2015:

6:25AM: Baby crying & I hurt too much to even move. Hubby changes him & brings him to snuggle. Mornings can be hard. Baby smiles help.

6:37AM: Hubby walks our dog before work so the poor love can get some exercise. It's too much for me most days. And today it's snowing.

7:03AM: 2yo's up. His cough is worse. Sweetly asks me to carry him downstairs. I somehow manage his 30lb. Then go back up for 20lb 6mo.

7:10AM: Feeding sick 2yo = more challenge than usual. I put protein powder in his sippy so I don't end up with a hangry toddler.

7:19AM: 2yo barfed all over couch. I'm cleaning him, cleaning couch. Haven't eaten anything so no pain meds yet. Going to be a long day.

7:40AM: Baby crying. I gobble a granola bar while heating his bottle so I can take a pain pill. Prescription almost gone = problem.

7:47AM: 2yo who just barfed milk now crying since I won't give him more milk. Heaven help me it's not even 9am.

8:00AM: Trying to put baby down for a nap. 2yo comes up to scream for milk. Now they're both screaming. I'm the one who needs a nap!!

8:12AM: Baby asleep. 2yo watching Daniel Tiger. I finally get to eat some breakfast and email my rheumy for pain med refill.

8:28AM: "When something seems bad, turn it around, and find something good!" Thanks for the reminder Daniel Tiger!!

8:39AM: Crockpot = THE BEST. Prep meals when up for it, grab from freezer when not. It's a rough morning but dinner will be ready! 

8:48AM: Changing a poopy diaper with sore hands/wrists/fingers can be really challenging - especially with a wiggler!

8:58AM: iPad for 2yo + crinkle book for 6mo = shower for mama! Hot water helps my pain & being lean makes me feel more human

9:04AM: Between managing my health & raising 2 babies I literally can't remember the last time I had a haircut. Into a ponytail again!

9:25AM: Granny is here!! Reinforcements! I am so so lucky that my mom lives nearby!

9:43AM: Baby is rolling all around the floor & trying to crawl. Soon I'll have 2 on the go and then I'll really be in trouble!

10:09AM: I decide the barfing resulted from cough meds on empty stomach. I give in to incessant whining and give 2yo milk. Pray for me!

10:21AM: Pancakes = great for hiding nutrients: kale/chard, protein powder, coconut oil. I make a big batch to heat up all week.

10:25AM: Put lid on bottle to mix formula. Can't get it off again. Baby screaming. Yay for jar openers!

10:37AM: Good news: dr approved refill. Bad news: new law requires me to pickup & hand deliver paper script. I have 2 kids. It's snowing.

10:58AM: Sometimes I think 75% of motherhood is laundry. Hurts my hands to move the wet and fold the dry, but it's gotta get done!

11:05AM: 2yo has a fever. I take immunosuppressants. How to care for him without exposing my compromised immune system? It's no easy task.

11:08AM: Four loads of laundry to fold and my hands are killing me. Time to try some prescription anti inflammatory meds.

11:29AM: Both kids are miraculously napping at the same time!! I'm getting off my feet for a bit!

12:24AM: Baby's up. He chews a teether and coos while I eat my lunch of vegetable soup. It makes me happy. ~;o)

1:21PM: Hate needing pain meds just to function. After pharmacy battle I hope the Orencia actually arrives today - and I hope it works.

2:44PM: 2yo up from nap. 100 buckles later everyone is loaded in the car to run errands. Exhausted & we haven't left the house yet.

3:25PM: Drive 10+ miles to drs office. Load up double stroller. Haul kids thru snow to pick up a piece of paper.

3:55PM: I love bulk cooking! Made 6 meatloafs Sun & just took one to a mom w/ a 9 day old baby. All mamas deserve support!!

4:40PM: Drove to pharmacy. People are getting off work and parking is crowded. I use my handicap placard. It always makes me feel guilty.

4:42PM: Load up double stroller. Haul kids thru snow to hand-deliver paper. 30 mins. I'll have to come back tomorrow. This system sucks.

4:57PM: Finally home. Dinner smells awesome. Don't think I could survive without my crockpot. 

5:01PM: The Orencia arrived! Took Enbrel yesterday so I can't start until next week but at least I have it now!!

5:03PM: 2yo: What's in the box mommy?

Me: Mommy's medicine

2yo: You have a lot of medicine

Me: Yeah, buddy, I sure do

6:18PM: Dinner done. Kitchen clean. Hubby makes me an Epsom salt bath and I get a gloriious 30 min to myself! 

6:58PM: After my solo soak my sons get in the tub with me. Bubbles and giggles, splashes and smiles. often my favorite part of the day! 

7:14PM: Every day when I give my baby his last bottle I miss breastfeeding him. But without RA meds I wouldn't even be able to hold him. 

7:31PM: Hubby rubbing icy hot on my leg to try to relieve the intense pain in my left ankle. He's the best.

February 5, 2015:

6:22AM: One benefit of not breastfeeding: hubby can do 3am feedings so I can take meds to help me sleep through the pain.

6:30AM: 6mo weighs 21lb. He's so smiley in the mornings - but lifting him hurts so much I want to cry. I hope the new meds help soon

6:56AM: Woke with a headache. Usually means (TMI) I'm getting my period. Because what I really need is a few more reasons to feel yucky!

7:19AM: First baby didn't crawl till he was 11mo. Second baby looks determined to do it today!! I think I'm in trouble!

7:37AM: Had to cancel regular playdate due to 2yo's cough/fever. Now face w/ figuring out how to entertain them all morning on my own.

7:46AM: Things I want my sons to learn from having a mom with RA: http://rheumatoidarthritis.net/living/things-i-want-my-sons-to-learn/

9:56AM: Baby napping. Sick 2yo watching excessive amounts of Daniel Tiger. Mommy working but hands hurt so typing/mousing is hard

12:09PM: 2yo napping. Baby up. It's like whack-a-mole around here. Everyone gets a nap but me!!

12:31PM: Granny comes to watch the boys so I can swim. I don't feel like going (pain/headache) but I know how lucky I am so I go anyways

1:18PM: I swim 30 laps & tread water for 5min. Nothing like my water polo days (when I LIVED in the pool) but it's something!

1:29PM: Feeling spoiled to pick up my pain meds w/out my double stroller entourage. Only took 3 trips & 2 days to get my refill haha

2:11PM: Problem w/ exercise: now I'm exhausted & on my own w/ two kids until hubby gets home. Deep breaths (& likely more Daniel Tiger)

2:23PM: No matter what kind of mom you are, you will at some point find yourself literally up to your elbows in poop.

2:51PM: Babywearing: a useful took for calming a fussy baby with less strain on your hands/wrists

2:53PM: At least he stopped crying! 

3:38PM: Nutrition trick: green cubes! Steam, puree, and freeze chard/kale/greens. 30min work = easy nutrition!

3:39PM: I add green cubes to EVERYTHING! Sauces, soups, ground meat, pancakes, muffins...nutrients for my whole family!

4:37PM: 2yo makes Lego tower. 6mo spits up on it. Mommy pries it apart to clean nooks & crannies w/ sore fingers ::sigh::

5:25PM: Made delicious taco salad for dinner. Sadly it doesn't go too well with jaw pain.

6:40PM: Getting the kiddos to bed so I can take part in a conference call with Seth's 50 State Network http://www.ghlf.org/seths-50-state-network/

8:05PM: Share your story!! You might be able to influence healthcare legislation! (COSenate passed SB71 today!)

8:09PM: If you are a #ChronicMom (or want to become one) reach out to us!! It's a hard job but you don't have to do it alone! Thanks for following!

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.

The Ease of Switching Medications

My RA has been truly terrible lately. I’m having monumental amounts of trouble getting out of bed in the mornings and, even after I do, it hurts to do literally everything. To pick up my cup of tea. To put my pants on. And don’t even get me started on how much it hurts to change diapers, dress my two-year-old, hold my 20lb six-month-old, and the million other things I have to do every single day. I am in so much pain that I am currently only surviving by taking lots of Vicodin and letting PBS Kids temporarily raise my children.

Because of how horrible things have been lately, last week my rheumatologist and I made the decision to switch from Enbrel to Orencia. I like and trust my rheumatologist, so I believe this is a good decision. I also love his nurse – she is so helpful and always on top of everything. I’m fairly positive that she sent the paperwork for the prior authorization and prescription the same day I was in the office last week. But, just to be safe, I waited a whole week before calling Aetna Specialty Pharmacy to try to place an order for my new medication.

It’s 1:00PM. I dial the number. I listen to a recording. I press nine. I listen to another recording explaining how to order refills online (which, for the record, I have tried to do without success. No one at Aetna can explain why it doesn’t work for me so I always have to call and sit through this useless recording). I press four. I listen to some more recordings. I press 1. Then:

Due to unusually high volume we are temporarily experiencing longer than normal wait times….

Awesome. I wait. I wait. I wait some more. Finally, at long last, a human answers. I ask to set up a delivery of my Orencia. The agent asks 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. Then:

I can see the Orencia in the system, but it’s rejecting it when I try to process it. Did your doctor tell you why you are switching medications?

I tell her that we are switching because the Enbrel stopped working. I tell her my doctor sent the prior authorization paperwork last week.

No. The last thing I see here is dated November.

I tell her I am certain that is not true. I tell her I visited my rheumatologist last Monday and that I am certain my doctor sent the information about the Orencia the same day – otherwise how would she even see that drug in my file? I tell her I purposely waited a week to call so that there would be time to process the paperwork.

Well the preauthorization department isn't showing that anything has been processed.

She offers me no further advice or suggestions about what to do. She just keeps repeating that the system is rejecting her request. Finally, I ask to speak to the preauthorization department. She puts me on hold and I wait. I wait. And I wait some more. Finally, another human answers. I explain the situation and go over the same information I went over with the first agent. Then:

Your doctor hasn’t called to have your drug changed to Orencia. All I can see is the previous authorization for the Enbrel.

I repeat that I am positive that my doctor sent the prior authorization paperwork last week. And I inform her that the pharmacy could see the Orencia, they just couldn't process it for some reason. I ask how they could see that drug in my file if my doctor hadn't sent the information?

What particular fax number did he send it to?

I say that he probably sent to the same number he sent the Enbrel paperwork to – that he clearly has the correct information since he was able to order the Enbrel for me. 

Your doctor hasn’t given us the information on Orencia. All I can see is the previous authorization for the Enbrel.

She repeats herself and I repeat myself several times. Finally, I agree to call my doctor to double check since I don’t see any other option and she isn't offering me any other options. Then I ask her, once my doctor does give them the proper information, how long will it take me to get the prescription approved and get the new medication? I tell her I am having trouble caring for my children and that I can't afford to wait any longer. I ask if I will need to call back or whether they will call me once they hear from my doctor?

I can’t answer those questions. That’s handled by a different department. Is there anything else I can help you with?

No. Apparently there is not. 

I hang up and look a the clock. It is 1:28PM. I spent almost an entire half an hour on the phone and made literally no progress whatsoever towards getting my new medication. For good measure I call and leave a message for my nurse - knowing full well she already contacted the pharmacy. But asking her to call them again is the only thing I can think of to do.

I feel beyond frustrated. All this system is doing is making me suffer longer, forcing me to fight for my medications when I am feeling my absolute worst. And something like this seems to happen every single time I call the specialty pharmacy. In fact, I even predicted some of this dialogue at lunch this afternoon with my mom before placing the call. I hoped I would be wrong - but unfortunately I wasn't. It seems like the pharmacy is almost never able to help me without me having to battle for what I need and stay on top of them. And, perhaps the most frustrating part, even if I eventually manage to get this new medication, there's no guarantee that it is even going to work!

There has to be a better way.