The fun of increasing joint damage and unsettling fatigue - "but you don't look sick"

One of the things about rheumatoid arthritis, particularly with the advances of biologic medications that slow the damage of the incurable, progressive disease, is that it's mostly an invisible illness at the beginning. People cannot see the oppressive fatigue or the joint pain if your meds are working. In the last several months, pain mostly because of my re-herniated L5-S1 disc that's exacerbated by bad neuropathy in my feet/ankles, I have a pronounced limp, so people notice there's something wrong with me, but otherwise I can cover during the week. Monday through Thursday are my "good days when Orencia, the biologic I'm currently on, is most effective.

But to most people, the illusion of being visibly "OK" has been fairly easy to preserve.

During my visit to the rheumatologist yesterday, the usual physical examination (manipulating my joints), revealed that the joint damage in my wrists and hands is well under way. I already wrap my wrists with self-adhering ace bandages for support, and that helps, but the doc noticed my outer finger joints are starting to settle into unnatural positions, and some enlarging. No restricted motion yet, but it's progressing since my 2011 diagnosis. Mornings are really hard, even on good days; almost all my joints hurt and are stiff for 90 minutes or so. Sometimes different joints will feel like they are on fire, sometimes not. I try to ignore what I can.

But at today's visit I recounted the latest problems I'm having preserving that illusion of being OK.

1) That untimely sleepy feeling. In my high-stress job as an IT manager (talk about a job incompatible with a systemic immune system disorder highly affected by stress!), I'm currently at 75% and have been functioning well most of the time, but it's pretty clear that my ability to work at the level that I'm used to is diminishing pretty rapidly. As I said, meds keep me well-functioning about four days a week, but those four days have been taxing me beyond belief over the last 3-4 months. Around 2-3PM I have an unreal surge of fatigue that I used to feel only during the weekends after dosing. It doesn't seem to matter what I'm doing or how much sleep I've gotten -- it's almost a narcoleptic event. I found myself nodding out at my desk, hand on my mouse, and I could be in the middle of typing or pausing to think about my next thought. I'm like WTF? It's a mini-moment, but my brain feels like it is really shutting down, like I feel the need to lie down. I'm petrified to do so, because on weekends, it means passing out for 2 hours or more. And that's not going to happen while I need to be working. I manage to power through it somehow, but I'm left feeling spent.

I told the doctor that no amount of caffeine or walking around seems to help (I can't tolerate a lot of caffeine anyway); I just feel the need to lie down or else I will collapse. She's checking my B12 levels. I may need a shot to help boost my energy levels, if they are low.

2) Sundown/sunset effect. And this follows on the heels of above. I feel the key in my back winding down when I leave work. While I've come to accept that my energy depletes more quickly because of RA, what is the most difficult to accept is my functional hours during the week are so short. By the time I've given all of myself to my job, what's left is precious little. I have to go to bed at 7PM. Not because I feel tired, it's because I cannot stay awake. I am literally shutting down, usually as I sit on the sofa, my head falls to my chest and I'm nodding out... gone. Zeroed out. Sometimes Kate has to wake me and tell me to get up and take my night meds and to head to bed. I'm sunsetting.

How pathetic is that?

Usually I'm back up around 10-11 PM for an hour or two, and then again at 3:30 AM to take my "AM" meds that I need to take early enough to get a bit more sleep, but will enable me to function at work without being too dizzy or loopy or tired (until that 2PM wall, anyway).

That is the rinse-and-repeat cycle for Monday through Thursday. Fridays are the real wind-down day. By 2PM on that day, my meds are wearing off completely and everything begins hurting in addition to the wall of fatigue. That's the nod to re-up my injectible biologic and take my methotrexate (oral med) around 4PM. Both of these make me sick (as in friends with the porcelain god and ungodly fatigue and fever/chills) for the rest of that day and Sat/Sun. So my weekends are sh*t too. All so I can hold down the job.

My life revolves around providing every ounce of energy for my job because it has to. So everything else about life takes a back seat. Makes for a sh*tty quality of life.

My doctor has heard all of this before; the majority of her RA patients are no longer working after going through this dance of decline. But the good news is that more and more RA patients in general are able to extend their work lives because of these biologics. What the commercials for Enbrel or Orencia don't convey, for obvious reasons, is just how much down time you still have to have to recharge after activity sucks the life out of you, or how the weather affects you, or what those miracle med side effects do to you. But they are accurate in that they can slow the progression of RA in most, and sometimes result in remission for others. They won't prevent flare ups or take pain away 100% -- they increase your quality of life.

Of course that is all relative if holding down a job is considered the "quality" part of your life when you'd like to reclaim the rest of it. But this is part of living with RA. Compromises, complications, reality checks, realizations of who you were, and who you are in the moment.

My doc said that we could try a couple of other biologics; she mentioned two (Simponi, Xeljanz), and I had to inform her that my prescription insurance, ExpressScripts, will not cover them. (For more on that issue, see my post "When your prescription insurance company forces you on meds that don't work") So even when there are options to try to help improve matters, you're kind of limited by your health/prescription insurance. You have to be "happy" with what you're able to take and what those meds deliver, and be thankful you have decent coverage at all. This is why, even with the severe limitations of the Affordable Care Act, people who would otherwise be completely left out of the ability to work with an illness like RA, may have a chance to remain viable in the workplace.

Whew! ExpressScripts comes through in time with my RA med Orencia

It took five calls and a lot of assertive patience to get this med.

I have an excellent result to report after a trying exercise in consumer advocacy over the last week, working with my required Blue Cross/Blue Shield prescription fulfillment service, corporate giant Express Scripts (@ExpressScripts/@ExpressRxHelp )/Accredo (formerly Medco).

It has been terribly difficult and disconcerting several days to get my weekly RA biologic med, Orencia (abatacept), a specialty med that is critical for me to be able to continue working by reducing the painful, debilitating effects of rheumatoid arthritis.

Good news!  It arrived early this morning via UPS! Thank you, ExpressScripts.

I've documented the frustrations about this company's poor customer service and questionable business practices in several posts (here, here, here, and most recently, on related to this latest horrible nonsense here). I have 6500 Facebook friends/subscribers 14K Tweeps, and 15K G+ followers that have been following my chronicle about this mess, and some of them shared their experience with ExpressScripts.

This latest debacle was the last straw in terms of delays, shipment cancellations and confused customer service calls about my account status. On the positive side, I was also fortunate to find a community of active and vocal customers of ExpressScripts on Twitter that have dealt with issues like mine over and over again.

One such person is the dynamic Valéria M. Souza (@VSouza_STL), who has been fielding complaints from fellow patients about the poor customer service doled out by ExpressScripts/Accredo and has researched and documented the many customer service shortcomings since the corporate prescription behemoth swallowed up Medco. She is working diligently to establish customer-to-corporate communications to show the ES executives that it is in their best interest to do right by patients dependent on their service.

I want to thank Valéria for forwarding information on my situation to corporate as an example of how NOT to do business, and how simple things like listening and ensuring follow through with customers is critical to improving ExpressScripts' reputation. And they should care about that reputation.

Orencia is injected once a week.
Missing a dose can have a devastating, painful impact on RA patients.

While I realize that shareholder relations and profits are linchpins to any company's success, it's equally critical to keep in mind the business you are in -- helping patients maintain their health. It's not selling widgets.

And in the case of specialty medications, you're talking about patients that have chronic conditions that, if untreated by delays screw ups in orders, may result in dangerous and/or painful circumstances. The need for good customer service is essential, and ExpressScripts has been wildly inconsistent. Quality control (in terms of controlling losses) is clearly important to the company, but it should not come out of the hide of patients whose coverage by their insurer is already subject to the whim of contracts and agreements that have zero to do with maintenance of the health of subscribers.

And a big thumbs up here to Accredo -- I also want to thank the Accredo operator that I spoke with on Wednesday; I don't know his name, but he was the only one to take the time to go into my records and various connected databases to verify I had a 84-day prescription from my doctor (it somehow was "changed" to 28-day by Accredo), and confirm I was entitled to receive the entire script in one shipment. He also got it to me this AM, just in time for me to take my dose at 4PM today.

[NOTE: Why this day/time? It's because the medication has significant side effects -- chills, fatigue, etc. -- that make me pretty sick over the weekend. So I take it so that I can be recovered enough by Monday when it fully kicks in and the side effects, subside. It means my weekends are pretty shot; but most RA patients will tell you that this is the price we have to pay to live a fairly normal life. There's no cure for RA; meds like Orencia extend your productive quality of life.]

Impact of Social Media on Corporate Image

It's 2014 --  In this day and age it makes no sense to do wrong by customer -- the word will get out. Social media like Facebook and Twitter have a significant impact in spreading feedback from customers. It can give thumbs up  to companies that go the extra mile, but if a company acts in bad faith, well, if you have enough followers, you can really marshall forces to jack up a company's image. Who needs that? Why not build bridges to excellence; our health care industry is already a minefield. What we do have is solidarity as customers to help make things improve.

I'm satisfied with this resolution; I am mindful that others are still struggling to get their essential meds and will continue to monitor the Twitterfeeds @ExpressScripts/@ExpressRxHelp

Related:
* You know just how much Express Scripts/Accredo sucks?
* Unintentional lessons learned from Accredo/Express Scripts F'up - just how much my RA has progressed
* Too little, too late love from ExpressScripts

* Another month, another delay by ExpressScripts on my critical RA med (update 3)

Another month, another delay by ExpressScripts on my critical RA med (update 3)

See updates 2 and 3 at the end, and the final result here.

The Health "Care" Industrial Complex screws me again.

Last week, I called Express Scripts (@ExpressScripts/@ExpressRxHelp )/Accredo (formerly Medco) back to request delivery of my rheumatoid arthritis (RA) drug Orencia. Today I received a call -- about a delivery delay.

Oh, no, not more drama with poor customer service from these people.

I call back, go through the voicemail hell but I get an operator within 2 minutes (wow, an improvement there!). She looks into my account and says that in the notes it recorded there was an "accounts receivable issue," but that it didn't show a balance so she didn't know why it didn't ship (for arrival today).

[Duh. I have the charges auto-pay via credit card on file and I keep it without a balance, btw, so it couldn't have been a problem on my end.]


So while she ponders why the notes make no sense, I tell her that I need this medication by Friday of this week since I have to take the injection weekly.

Because Orencia is an expensive specialty medication, Accredo doesn't allow you to have more than a month's supply at a time, and won't refill until you're at the last dose, leaving you in a precarious position of not knowing if you'll receive the refill on time, or they will F up your order -- as I documented in my last post on ExpressScripts, where the company simply canceled the order and never called me -- and tweeted a "sorry" (see above graphic) after it was too late.

This time they did a little better, though the jury is still out. I'm set up to receive the delivery on Thursday, so we'll see if it arrives. If there's another snag, it will mean going without a med for a week -- a med that enables me to keep working. I've already gone through this once, and I learned a lesson.

It taught me just how effective biologics like Orencia work to reduce the progressive joint inflammation of rheumatoid arthritis. It also showed me just how much worse my RA has gotten since diagnosis and beginning biologic therapy -- all my finger bones, my wrists, elbows, hips, knees, ankles and foot bones are affected. There is new, troubling pain in the cervical vertebrae (neck) that I never had before.

***

UPDATE: Oh. My. God. Accredo called again and now says the prescription request was rejected by my doctor's office (!?), something that the two customer service people I've spoken with over the last week should have seen in the files if this were true.  I know this is not the case, since my rheumatologist has had me on it for a few months now, but now it's on me to get that fixed with my doctor. It means it's highly unlikely that I'll receive Orencia for my dose on Friday and will be in excruciating pain over the next week.

And - I just looked in my online prescription records w/Duke, and lo and behold, I have an active script on file:

abatacept 125 mg/mL injection syringe
Commonly known as: ORENCIA
Prescribed by [my doctor's name] on 11/26/2013.

This is bullsh*t.

UPDATE  2: Oh. My. God, part II. Now Accredo lies.

So around 4 PM, I get a call from my rheumatologist's office. I had submitted an online query to check on this alleged expired prescription, and she was nice; she said she just put in another one for a 90-day script for Orencia into the system so we wouldn't have this mess next month, and said Accredo should have it now. Great!

So I hang up and immediately call Accredo. They pick up and I do get a customer service rep in less than a minute. Unfortunately it's all downhill from there.

• She had no clue why a delivery order that Accredo scheduled with me last week for today was able to be placed if there was an invalid script in place.
• She said that she could see my new prescription from my doctor's office, but that it would take 24-72 hours to process. 
• And then I have to wait for a rep to call me sometime in the above window to schedule a delivery. [Remember I need it to arrive by Friday or I have to wait a week to take the dose.]
• Oh, and by the way, the said that the script is only for a 28 day supply! 

WTF?! Come on, I said, I just spoke to the nurse and she said it was for 90 days. The Accredo rep, characteristically and robotically said it is only for 28 days. So who is not telling the truth? I know my doc hasn't been anything but thorough and prompt in refilling my meds in 90 day supply increments for mail order.

What kind of game is Accredo pulling? Four different customer service reps, each with a different story about this prescription.  What do they see when I pull up my account? Is it like a slot machine in Vegas, where you pull the handle and get unique (losing) results each time?

I have to go through this all over again next month? I wrote my doctor's office again and told them I'd like to hold a three-way call ASAP to deal with this 28 vs. 90 day prescription approval.

And look at this:

Express Scripts... #FAIL again. 

UPDATE  3: (1/29)  Five calls, five stories - but a delivery scheduled (again).

I'm sitting in the waiting room at Duke Hospital (my wife was having outpatient surgery), and lo and behold, Accredo left me a VM to schedule the delivery of Orencia. Again. Of course I am quite skeptical that it will materialize before Friday, but I call back and get a customer service rep on the line in less than a minute. The very polite man ran through the list of required ExpressScripts questions to ID me and to go over the prescription specs and delivery address.

I tell the operator that I have to have the medicine by Friday afternoon or I will have to skip the dose until the following week. He says he can get it there by Fri afternoon. As he is concluding his set of questions, I ask him if I can ask him one for clarification:

"Look, I've been on calls with different reps trying to get this prescription filled and each time I'm given different stories about whether the script is valid, if the account is paid up, etc. I want to be sure that I'm really going to receive this, and that it is covered by my BCBS at the right co-pay."

He ask me what is my question and he'll see if he can look up the answer or refer me to someone who can answer it.

"I was told by the last rep that this was for a 28-day script, when I had just gotten off of the phone with my doctor's office, and the nurse said it was sent in for a 3-month supply. How is this possible? I don't want to have to get a new prescription every month for a medicine I take regularly and not have go through this mess each time."

He says he will check several dbs -- the order, the kind of coverage I have, etc. After some hold time he says what I knew all along -- the records show that a 84-day supply prescription was received from your doctor. He had no idea why it was changed to a 28-day script. He says he can cancel the delivery under the 28-day script and re-enter it under the 84-day one.

I ask "so wait, I want to be sure this doesn't get delivery screwed up, or a receive a call saying BCBS won't cover it, or my co-pay is outlandish (it should be $30). I want to be sure that we're on the same page -- under my 90-day script before, I received one month's worth at a time and had to call to schedule the next month's delivery, but didn't need a new prescription. Under this 84-day prescription you're describing, it sounds like I will receive the three month's worth in one delivery (something that I've not had before). Is this what you're saying?"

He says that it is indeed going to be filled for 3 month's worth in one delivery (!).

Now how is this possible? In one phone call, I have yet another answer about what I'm entitled to under my policy, and it's one that has never applied to my biologics.

While this is a more than satisfactory outcome (if it indeed arrives when they say it will), it is troubling that I have had completely different stories about 1) my account, 2) my prescription status , 3) my policy coverage, 4) ability to deliver and 5) payment status.

This was the first customer service rep to take the time to review my whole account, history, my BCBS coverage for the med, and what my doctor actually sent over. He was on the ball.

This isn't right -- it places the onus all on the patient to figure out whether ExpressScripts customer service is incompetent, told to dial back on servicing patients with the correct co-pay and eligibility for specialty meds. All of these customer service reps, like the one today that did go the extra mile to retrieve information that proved what I knew all along to be true, should be equally competent at navigating their company databases to ensure accuracy and save everyone precious time.

Today, thanks to Valéria (see below). I received a call from ExpressScript "Presidential Escalation" office; they left me a message. I intend to tell this representative in the AM (they were closed by the time I could call today, so I left a message) about the troubling and inconsistent service that occurred at the company since it swallowed Medco. And I never had problems with order fulfillment like this.

I'm going to use this valuable opportunity to share what it is like from the patient perspective to get continually jerked around at a most-vulnerable time in their health needs. Not everyone can be a spot-on advocate for themselves. If not tenacious or assertive, working with ExpressScripts will leave you without vital medications because of the disarray there (intentional or unintentional).

***

On the battlefield...

I want to give a big shout out to Valéria M. Souza, who has been fielding complaints about the poor customer service doled out by ExpressScripts/Accredo:

Thx, @VSouza_STL, for your tireless work advocating for customers of @ExpressScripts and #Accredo receiving sub-par service. #HCR

I tweeted that out last night. Follow her on Twitter to see just a sampling of what patients and caregivers are going through when it comes to receiving critical specialty meds for chronic and serious illnesses from this health care industrial complex giant. Her blog is http://valeriamsouza.wordpress.com/

Unintentional lessons learned from Accredo/Express Scripts F'up - just how much my RA has progressed

Not a good day - day 6 without Orencia (RA med). Made it into work but all of my joints hurt miserably (driving really hurt, limping, have pressure gloves on, pressure socks on, lots of liniments, Aleve). I will take the injection tomorrow so I'm back on schedule, but this is misery. I couldn't take today off, but I will have to tomorrow since it will make me sick.

Bright side (I have to try to find one!): I guess Accredo/ExpressScripts' F'up on delivery last week, leaving me w/o a dose, taught me just how effective biologics like Orencia work to reduce the progressive joint inflammation of rheumatoid arthritis. It also showed me just how much worse my RA has gotten since diagnosis and beginning biologic therapy -- all my finger bones, my wrists, elbows, hips, knees, ankles and foot bones are affected. There is new, troubling pain in the cervical vertebrae (neck) that I never had before. I will need to report that to my rheumatologist next time around.

Too little, too late love from ExpressScripts

Had a crash and burn day after my first day back at work on Mon -- without the benefit of my RA med (Orencia) because of ExpressScript's F-up last week.

I was in horrid pain yesterday; Kate had to drive me to work. I went to bed at 7PM; I was drifting off while sitting up on the sofa. Good thing I'm off tomorrow and Wed. God knows what shape I'll be in by Thurs-Fri when I have to try to slog through a workday again.

ExpressScripts is allegedly going to deliver the med tomorrow (which I have to wait and take on Fri to stay on sched). We'll see. I received this pathetic, too-late Tweet from the company yesterday:

Update (12/31): ExpressScripts released it for delivery today according to the ExpressScripts web site; that means I won't receive it until at the earliest on Thursday (unless UPS is delivering on New Year's Day). I tried the tracking number given, but the UPS site gives the reassuring message "UPS could not locate the shipment details for your request. Please verify your information and try again later."

And then it did arrive later in the evening -- via FedEx! No wonder their site had the tracking screwed up. But I have a month's supply for now, in a couple of weeks I have to go through this all again, since I have to order it a month at a time -- by phone -- you cannot use their web site to re-order.