Watching the mane go bye-bye...thanks methotrexate.

I'm grateful for the medications I take for rheumatoid arthritis that allow me to continue to work and be productive -- and in manageable pain most of the time. And I definitely feel the difference when I skip methotrexate and Orencia. After about 4 days I start to slow down, all my joints hurting, the fatigue is incredible. It's like night and day.

Methotrexate is a drug cancer patients are given, but is taken a much reduced dose for those battling RA. It's pretty toxic and many cannot tolerate it, but it does reduce inflammation. I had terrible trouble with the oral version. Since I moved to injectible, I've had fewer tummy side effects, but both versions did a number on me.

For all the positives in controlling pain, the one side effect that is demoralizing and humiliating is watching my hair thin and fall out. My locs, which I've been growing since 2000, have been a source of comfort and pride, having cultivated them from two-strand twists and locked and maintained them on my own (no, I wasn't going to pay anyone to do what I could learn to do myself!) for all these years.

What I couldn't stop was the horror of locs simply dropping out in the shower, and my hair thinning. I cried numerous times. What is happening to me?

I always liked wearing hats, it was kind of part of my look, but now wearing hats became a necessity. The only time I didn't wear one is if I had my hair up in a pony tail and had a headband on, which helped hide the thinning...a bit.

On the left - you can see how thin it is today; on the right with a hat and single pony.
And in the middle, the lush locs of the past (2011).

But here we are in 2015, and it's just grinding me that the medicine that keeps me able is taking its toll...on my vanity. I'm actually not that self-conscious otherwise, for whatever reason. For instance, I've been on a health regimen that has resulted in a weight loss of over 50 lbs so far (30 more to go!), but I was not shy about being a plus size fashionista at times, lol. The weight loss is obviously something I feel good about, since I feel better and look better overall. But for all that, losing my hair I don't have much control over and it vexes me.

I guess self-acceptance at any size, and with any beauty deficits is something to ponder. Is my hair that important in the scheme of things? Could I shave it all off again? I had a short natural back in the 90s (see the slideshow for a pic from that era), but I would feel naked without my locs. Would I start them over again? Who knows.

I just know it hurts to lose them, and a part of me mourns every day I try to style them knowing what "used to be."

But my health means more.

---

Slideshow of the various lengths and thicknesses of my hair during its loc phase...



Related:

* My hair journey (all those styles!)

The glory of a spa pedicure in advance of the weekend RA med grind

Post-pedi tootsies are happy!

Today was a real treat for the terrible neuropathy in my feet and from the knees down -- a spa pedicure. It came with lots of glorious leg/foot massage and a hot paraffin wrap on my feet!

I nearly fell asleep in the spa massage chair. I'm that burned out and it felt that good.

Of course "feeling" is qualified when it comes to my feet and legs. I cannot tell hot or cold because of the nerve damage at this point, so the hot paraffin wasn't hot to me at all. Kate said it was really hot. I can feel the massage, but it's hard to explain what sensation feels like with nerve damage of this type. It can be both hypersensitive and numb, but overall the pressure feels good, particularly in the muscles. The joints, not so much, but the overall feeling is one of relief.

Kate and I have had nothing but fabulous experiences at Lee Spa Nails in southern Durham (http://www.leespanailsdurham.com/).

Owner Monica Khov (in the pic with me below) and her staff take great care of us. We've been going here for several years, intermittently, and she recently expanded, adding more chairs, a full bar, and a man cave (quite a lot of guys come in to care of their feet there - how can you go wrong with a relaxing pedi). On our last trip for a pedi we had mimosas!

With Monica Khov, owner of Lee Spa Nails.

Of course this afternoon I have to take my weekly RA meds that make me sick over the weekend, so it's nice to feel good for part of the day! Have to stay positive. :)

***

New therapy (sort of)

This week I am trying out methotrexate (MTX) by injection, rather than oral pills, in order to reduce the increasing joint pain in my hands/wrists/shoulders/elbows. My rheumatologist said the injectible is more potent at the same dose, but may bypass the bad gastrointestinal side effects. The potential downside is that the other side effects -- chills, fever, fatigue very down mood swings -- may be amplified. So Kate and I will be mindful to see how I'm doing over the weekend. By Monday these side effects largely pass, but it's rough going dealing with the MTX plus the side effects of Orencia.

My own ableism and thoughts about assistive technologies and productivity

The reality of the need to rely on voice recognition software is setting in. My hands and wrists are going south fast from rheumatoid arthritis. I had a flare-up last week that caused me so much pain that by the end of the day I was literally crying at my desk. It was difficult to drive home because gripping the steering wheel was nearly impossible. I had to sleep in wrist and thumb wraps...when I could sleep at all.

Since I have a job that relies on using a computer and the vast majority of my essential job functions rely on keyboarding (and mousing) and computer multi-tasking, it's a necessity that is forcing me to evaluate just how reliant I am on my physical capabilities to accomplish essential job functions.

It's a good thing in many ways to be humbled by the challenges of losing the abilities that you take for granted in many ways, to embark on more than an intellectual exercise in this area to understand the world from a yet another point of view. So as I think these things out in this digital space, dear readers, I apologize in advance for inadvertent stepping on toes as I confront my own ableist biases "aloud."

Tip-toeing into Voice Recognition Software

Fortunately Chrome and the Android OS allow for easy implementation of it w/o the OS-resource sucking Dragon Naturally Speaking. Configuring my tablet/PC/phone took just a few setting changes. Aside from some web apps, most basic functions are accommodated.

Saying that it saves you from any keyboarding is ludicrous, unless numerous typos and lack of advanced formatting are acceptable in a business context. Correcting is tiresome and tedious.

That speed trade off is huge. It is no surprise that it unfortunately doesn't match up to being able to physically touch type 80 wpm on the fly. Dragon has better accuracy than built-in voice rec, but it has a steep teaching/learning curve. I'm just trying out the built-in functionality and I'm beginning to see the huge productivity hit that will result in real-world circumstances (for me).

Expectations

The more I fiddle with basic voice rec, the more I wonder how those who have limited ability to manually type (or lose it altogether) can use a computer without compromising a lot of former speed and accuracy.

[Of course, if you never had that physical capability to begin with, there isn't that that personal frame of reference to contend with, but there is the comparison to performance expectations in the abled world.]

Efforts that I depended on manual dexterity and speed for - such as moving between apps and windows, copying and pasting, text formatting, etc. are so far a no-go w/o Dragon. Of course my brain is quite biased by personal history. It has been well-trained over the years to execute such tasks effortlessly from thought to my hands to the keyboard to the computer. Now that this "communication chain" is broken, learning to do the same tasks using different tools is daunting.

It would good to see if there are studies/tests to evaluate one's voice rec performance to multi-task, multi-app keyboarding and navigation, not just the metric of straight dictation.

For instance, doing Facebook or Twitter updates using native voice recognition software (OS and Chrome; not Dragon) on my tablet or desktop is impossible to do without some keystroking or manual intervention. Most of my devices do best with straight dictation only. My Samsung phone is best at the latter.

I guess that my main focus now is figuring out how to think about voice recognition software and its place as an assistive technology. Is its primary purpose to simply make certain functions possible? Beyond the possible, what is the expectation regarding performance itself - is the assistive technology's purpose to help that person achieve the same performance levels that exist in the able-biased world as well?

The latter seems like a lofty goal, but being able to accomplish a function is not the same as accomplishing that same function at the same rate of speed as you did before. A logical question then is how expectation of rate of speed of performance falls into the category of essential functions of a job.

The ADA

There are plenty of practical considerations of course; take a read through the voluminous Americans with Disabilities Act (ADA ) site and the Job Accommodation Network (the Dept of Labor site). They are not really bedtime reading, but interesting resources to peruse if you have the time. You realize what a herculean accomplishment it was to pass such a landmark law (1990) given the amount of ableism that existed then and continues to exist today. For instance:

"Under the ADA, when an individual with a disability is qualified to perform the essential functions of a job except for functions that cannot be performed because of related limitations and existing job barriers, an employer must try to find a reasonable accommodation that would enable this person to perform these functions. The reasonable accommodation should reduce or eliminate unnecessary barriers between the individual's abilities and the requirements for performing the essential job functions."

There's a lot packed in the above that has been life-changing for those working with disabilities. The ADA has ensured that they can bring their considerable personal and professional skills to bear to contribute to the economy by giving them access to opportunity.

The wrinkle of course is unless the reasonable ADA accommodation causes an "undue hardship." What constitutes "undue hardship" for an employer in this matter? It has to be:

"Excessively costly, extensive, substantial, or disruptive, or that would fundamentally alter the nature or operation of the business."

Yeah, it's complicated and there's a lot of ink dedicated to unpacking that statement. Just do the bedtime reading, if you are so inclined...

Some history -- the ADA would not have passed without the advocacy of Senator Bob Dole (R-Kansas), whose presence on the Hill among colleagues made a crucial difference.

Senator Dole was a fitting advocate for people with disabilities. In an interview with ABILITY Magazine, Senator Dole described the effect of his war injury: 

"Experiencing a disability yourself, you could almost walk around with a blindfold and pick out the other people with disabilities…. Having a disability changes your whole life, not just your attitude." 

...On July 16, 1990, more than 3,000 people attended the signing ceremony on the White House lawn. As he signed the bill, President George H. W. Bush said: 

"Every man, woman and child with a disability can now pass through once-closed doors into a bright new era of equality, independence and freedom… We will not tolerate discrimination in America." (Read President Bush’s Full Remarks at ADA Signing) 

Bob Dole added: "This historic civil rights legislation seeks to end the unjustified segregation and exclusion of persons with disabilities from the mainstream of American life… the ADA is fair and balanced legislation that carefully blends the rights of people with disabilities… with the legitimate needs of the American business community."

***

BTW, this post took forever using voice rec. In the end I typed about half of it, and corrected a boatload of the input. And the formatting had to be done via keyboard. With that said, it could be done over time and at my own pace. That's certainly not the same as the pressure of composing something on a deadline for work.

Related:
* Life changes -- RA drives me onto the professional off-ramp

What a difference a new pair of glasses makes!

I CAN SEE! I picked up my new glasses today. No big style change for me, as you see. These glasses are plain, black geek frames, a little larger than my last pair, to give my eyes a bit more coverage for sun protection with Transitions lenses. My current insurance allows me one new pair a year, I think.

My horrid nearsightedness improved, as did my reading script. But it's still bad; I needed hi-index 1.67. This is the script for the progressives:

OD Sph: -7.75 Cyl:-0.50 Axis: 180
OS Sph: -7.50 Cyl: -.75 Axis: 165
OD ADD 2.25
OS ADD 2.25

I used to be > -8.00 in both eyes prior to requiring bifocals when I turned 42 (I'm 50 now). I also need a separate single-vision lens for computer work (I just had them replace the lenses in my old glasses to save $). I'm still blind as a bat by most folks' standard:

OD Sph: -6.50 Cyl:-0.50 Axis: 180
OS Sph: -6.25 Cyl: -.75 Axis: 165

***

Blind as a bat without them.

Q: Has anyone ever ordered a pair of prescription glasses online? I didn't know how satisfied people were, particularly if they have a difficult script. I was thinking of getting a pair that is tinted for indoor use, since I have light sensitivity from developing cataracts.

***

On a related front, I can report that my prescription insurance, ExpressScripts, actually covered Restasis (drops for extreme eye dryness caused by RA/Sjogrens and other similar conditions). It's insane how much these meds cost. I paid $100 for 3 months' supply, the insurance covered > $700! Why does this med cost so much? Never mind. I'm sure it's cheaper across either border.

Managing a RA flare sick day

Sick day today; my first full-blown RA flare up in months since I switched to Orencia as my biologic vs. Enbrel. I haven't taken an actual sick day like this from work in months, as in: no work email, texts, calls, IMs. I was only online in the AM to "call in" via email and to rearrange all the meetings I had to miss. And even that was a horrible effort since light is really hurting my eyes this time. Flat out on my azz sick. Not working through it to prove that I'm impervious to chronic, life-altering pain. No way to fake it through a flare.

I then slept almost all day. It's annoying to be so wiped and in pain that you have to sit there in a stupor thinking about a plan to get up to make it across the room, but that's the reality of a big time RA flare. It just has to pass.

It was about 80F today, but I was cold when I briefly stepped outside, so my body therm is screwy. Doc gave me a script for prednisone a while back, but I won't take it unless this goes on for days since steroids F up my BGs.

The light sensitivity has abated somewhat this evening (why I can type this), but my muscles and joints are so tight that I'm already showered and coated in my rotating cast of liniments (tonight starring Biofreeze + Sombra + Capsaicin!).

Getting under the fleece and going to fall asleep to mothership L&O (1992 season is on We).

Life changes -- RA drives me onto the professional off-ramp

Last week I officially acknowledged what I can no longer do -- my current job. It was announced in my org that I was stepping down from my position as an IT manager. I'll vacate as soon as they hire a successor.

I did this job for ~15 years. But I am no longer the person I once was because of pretty aggressive rheumatoid arthritis (RA), and I've been telling my boss for a couple of years now that a person is needed in this position that can handle the long hours that come with the job. So the succession plan is being rolled out ASAP.

Actually, my rheumatologist and endocrinologist have said for the last 4 years to "get out of that job," because the stress that comes with the ever-demanding and changing world of IT is wholly incompatible with an autoimmune condition that is profoundly affected by stress, the weather, and random foolishness I never can quite figure out. I'm deteriorating faster than I could have imagined. I guess the docs were right. I was in denial.

But those who know me know that I thrived for a long time on stress and long hours (or so I thought I did).

It's part of my own acceptance process to admit that I am not the person that I once was, chugging away on ungodly over-work up to about 3 years ago (doing this job plus running a full-time, nationally recognized blog, traveling during my vacation time to go to press conferences, the White House, covering all sorts of things as a citizen journalist in digital media). It was tiring, wonderful fun.

Fast forward to now -- rheumatoid arthritis has so destroyed me from the inside out that I:

1) can no longer down a 40 hour job;
2) had to shut down my blog;
3) can no longer travel alone because I can't lift my bags and I suffer from extreme fatigue and threats of flare ups from the barometric pressure changes because of flying;
4) live by the clock for meds, sleep breaks and the like; and
5) give up my weekends, taking my RA biologic med, and methotrexate that make me sick as a dog, and doles out unreal fatigue, all sacrificed so I can work the next week.

My spine is also now affected and one of my disks not only re-herniated (L5-S1), but it is collapsing on the other side, affecting feeling in my left leg and foot.

All in just three years. 

My life now revolves around preserving myself for work -- and nothing else of me is left for life. I am one of only a couple of patients of my rheumatologist that is still able to work. It's estimated that as many as one-third of people with RA are forced to stop working within 10 years of being diagnosed. You can read about others' experiences with RA and the workplace here.

Unlike some RA patients on the professional off-ramp, the organization is crafting an accommodation that may allow me to slide over to a different, hopefully more manageable 30 hr/week job. What's definite is that I will no longer be a senior manager. Does this bother me? Actually, I'm in such a constant state of pain and exhaustion that losing that status isn't something I'm mourning. It remains to seen how much of a demotion this new position represents.

In terms of reactions to the change, it's pretty clear that thinking about disability and my need to step down scares many people into silence (after all, it's natural to think "glad it's not me/that could be me" -- it's a very human reaction). Are you supposed to congratulate the person, have a sense of sorrow that they are stepping down for obvious health reasons? There is no good way to react. It was kind of like the interesting reactions I encountered during the couple of days I lost my voice due to a med change ("People -- I can't speak, but that doesn't mean I can't hear or think..."):

"[T]his temporary situation shows just how ill-prepared the average person is to deal with a disability of this nature. Our ability to speak allows us to convey a lot of information in very few words. Body language (thumbs up, down, OK gesture), is pretty limited when you need to communicate detailed thoughts or nuances.

Those who can communicate vocally assert their privilege/ability to try to force the mute to communicate on their level even when logically they know the other person cannot speak. You can see the frustration on their faces; they'd rather avoid me rather than try to compensate for the communication delay. Well, of course -- a pad and pen is a poor substitute.  I've also had to whisper from time to time because of my frustration in moving conversations along so I can get back to work. They don't want me to break my vocal rest, mind you, they just don't know what to do, so they avoid."

What I cannot avoid

Emotionally, I'm not really able to celebrate anything, since some things are still up in the air. But honestly, I'm still having those feelings of "Dead woman walking" or that I represent "the old dog taken out back and shot in the head." Pick your poison of negativity. It's all normal feelings I've had over the last week, and I just have to work through it. I do take solace in that I know that I'm not alone; this is a story that has played out (with even worse circumstances and resolutions) for most patients with severe RA. It's the netherworld prior to full disability -- too sick to work full time, not sick enough to qualify for disability. It's a high bar to clear. Besides, in my case I, want to work. And just be able to exit with dignity when the time comes. That option usually doesn't happen for most. Many simply have to resign.

It's horrible to know that I have a professional expiration date that isn't long in the future. Even something as simple as writing longhand is excruciating. I have to wrap my hands (and now my thumbs too) each AM, to tolerate typing all day. If I lose that ability, I don't know how I'll adjust. I detested using Dragon Naturally Speaking when I tested it. I think so much faster through my hands; when the day comes and I cannot type, it will be a real crossroads.

Part of me wants to flee and leave it all for someone else to deal with rather than exist being less than whole and involuntarily on a professional off-ramp at 50.

But I live in the real world. I just have to stay healthy enough to make it through the fire of a long list of to-dos to pass the torch to the next IT manager.

And figure out how I'll be able to make it to the next Journey concert when they hit Raleigh (on a weeknight, no less. I'm usually in bed by 7PM these days). I'll really pay dearly in terms of fatigue, but I need something to feel positive about right about now. I'm still holding out on buying tix because of the health circumstances, so I guess I won't get good-for-photos seats now. Sigh. Ah, just think Anything is Possible.

My eyes, my eyes! Travails of progressive bifocals, the eye doc...and cataracts?!

Saw eye doc yesterday. Terribly necessary because I cannot see anything in focus in any field of my progressive bifocals at this point; things are fuzzy, and for close up (like reading a pill bottle), I just take my glasses off or lift them up. It's incredibly annoying.

Good news/bad news. Good news first - no damage from taking Plaquenil (rheumatoid arthritis drug), or any sign of diabetic retinopathy. She was shocked since I've had insulin-dependent diabetes for ~30 years at this point -- I keep my BGs in line, that's why! [Eyes fine; legs/feet and neuropathy not so much.]

My prescription at this point has changed (no shock there), but the other element at work is that because of RA and some of my meds, my eyes are extremely dry, so much so that the doc said I need to come back next week. I have to use eye drops every 4 hours and eye ointment at night. Then I'll come back retest and see if the script matches my tests yesterday. Some info:

Dry eyes is a common problem for patients living with rheumatoid arthritis. Patients may notice irritation, a gritty feeling, painful burning, sensitivity to light, and a sensation that something is in the eye. It is caused by a lack of tear production. Patients with dry eyes are at increased risk for infections around the eye and damage to the cornea. 

Eye dryness is also a symptom of Sjögren's syndrome which is an inflammatory disease that can affect many different parts of the body, but most often affects the tear and saliva glands. Approximately 10 to 25 percent of rheumatoid arthritis patients will develop Sjögren's syndrome. Treatment for dry eyes include artificial tears or prescription eye drops (ie. Restasis).

We'll see how things go in a week. On the matter of the actual glasses, I don't know if I just need to pick my battles and trash the whole progressive bifocals thing.

Oh yeah, the bad news -- she was shocked to see that I'm developing cataracts in BOTH eyes. She was like -- "wait, you're too young for cataracts at this stage!" (I'm 50) Last year there was no sign of this, but yet again, inflammation from very active RA can play a role. So I have to stay out of the sun, keep blood glucose numbers (BG) in line and stay away from prednisone (a steroid many RA patients rely on for some relief; I don't use it because it screws up my BGs). Thankfully I don't smoke, another factor in developing cataracts.

It also explains why night driving has become more difficult, and why bright light has been hurting my eyes more than in the past.

A nod to the late PHB - a Vicki Award from Woodhull Sexual Freedom Alliance

What a wonderful surprise! Nine years of online activism and one award that I never expected to receive is a sexual freedom award. Does the content my former labor of love, Pam's House Blend's rate that honor?

The good people at the Woodhull Sexual Freedom Alliance (Facebook, Twitter) thought so, and contacted me recently to announce that I will receive its Vicki Award (and I'll deliver a keynote address) at the Sexual Freedom Summit  (@WoodhullSFA) on August 14-17, 2014, in Alexandria, VA. Hashtag: #SFS14.

About the award:

Established in 2010, the Vicki is named after Victoria Woodhull, the namesake of the Woodhull Sexual Freedom Alliance. Ms. Woodhull was an American suffragist born on September 23, 1838, who was described by Gilded Age newspapers as a leader of the American women's suffrage movement in the 19th century. She became a colorful and notorious symbol for women's rights, free love, and spiritualism as she fought against corruption and for labor reforms. A strong advocate for collaboration and for full equality rather than "just" individual rights, Woodhull was generations ahead of her time.

I am in terrific company. From the press release:

The 2014 Honorees

Carol Queen is an American author, editor, sociologist and sexologist with a doctorate in sexology who is very active in the sex-positive feminism movement.  The founding director of the Center for Sex & Culture in San Francisco, Queen serves as Staff Sexologist at Good Vibrations, where she’s worked since 1990.  Read more here.  

Cory Silverberg has developed and facilitated workshops for hundreds of agencies and organizations serving both youth and adults across North America on a range of topics including sexuality and disability, sexual pleasure, sexual communication, sex toys, and sex and technology. Cory has also delivered keynotes, lectures, and interactive public talks for professional conferences and student groups. Read more here.

Pam Spaulding considers herself an accidental activist.  The founder, editor and publisher of Pam’s House Blend, a startling honest and astute blog focused on the LGBT community, Pam has guest posted/contributed to Americablog, Pandagon, Firedoglake, The Rude Pundit, The Bilerico Project, Glenn Greenwald’s Unclaimed Territory on Salon, and written for The Independent Weekly.   Read more here.

The event will be a rare occasion for me these days - traveling, due to impact on my RA. Woodhull and its Executive Director Ricci Joy Levy have been very accommodating re: my need for rest and recovery. It's sad I have to live by the clock for meds and such these days. But I'll go down fighting.

Losing the RA battle and it's only Tuesday!

Made it through the usual fire of biologic med side effects that kill my weekends (Fri PM to Sun afternoon) so I can continue to work, but between the impact of a terrible weather front and an insane workload, I came home in searing joint pain everywhere today.

Bed time? 6:15 PM. That's a new record for me.

Anyway, the reason I'm up now is to take some more Aleve to tide me over till I have to get back up at 3:30 AM for the next cocktail of meds so that I'm functional at work tomorrow. Otherwise I'd rather be unconscious to recharge my limited body battery supply before I have to get back on the hamster wheel again.

Even the popular biologic RA drugs (like Enbrel, Humira, or Orencia) can't perform those miracles that Big Pharma portrays in those commercials you see on TV. They seem to air with greater frequency these days. These ads really downplay the serious side effects - the narrators speed through a partial laundry list while showing the sunny, compelling visuals of people opening jars, digging in gardens, tossing a ball with kids, etc.

I guess visuals showing patients writhing with chills, experiencing crippling fatigue, and communing with the potty for 2 days a week after dosing their meds probably wouldn't go over well with focus groups...

The drugs don't stop progressive joint damage for everyone either, or stop the chronic pain entirely. They temporarily relieve some inflammation and, to their credit, for me have reduced sick days to nearly zero, a huge relief. Hell, I worked (though I probably should have been out, but duty called) even while suffering from shingles agony for a couple of weeks. Before biologics, I was probably down and out on average a day a week; that was at first diagnosis in 2011.

BUT, my effective high-functioning ("gee, you don’t look sick") hours per day are continuing to shrink, in the slow, steady decline folks with RA (and similiar autoimmune disorders) are all too familiar with. I look in the mirror and can now easily see the toll of the battle of trying to hold on to "normal" as it fritters away.

Another lost weekend...

This weekend has been quite pitiful. Between the shingles (in parts where you'd never want them), my weekly RA biologics making me feverish, sick & sore,  and the side effects from the 3x a day anti-virals for those shingles, I spent most of the weekend in searing pain, nodding out, or unconscious.

Thus no FB activity. I didn't have the attention span or energy to even pick up a tablet. Now that's bad for me.

Today's major "activities" -- since I'm sick of being sick from my declining autoimmune state and I'm stubborn -- involved limping, slow, short trips -- one to the grocery store, and briefly to Costco. That was so exhausting that as Kate drove the 15 min home, I nodded out, then needed a 4 hour nap. Saturday I was even more useless, if that can be believed.

I don't know if I'll be in any shape to work tomorrow since the anti-virals knock me out and I have to take one dose midday. (4 more days to go).
[image_0]

Shingles...and not on the roof

G-d dammit. I need another health hurdle like a hole in the head, but here we are. I've had an outbreak of shingles.

Shingles is a painful skin rash. It is caused by the varicella zoster virus. Shingles usually appears in a band, a strip, or a small area on one side of the face or body. It is also called herpes zoster.
Shingles is most common in older adults and people who have weak immune systems because of stress, injury, certain medicines, or other reasons. Most people who get shingles will get better and will not get it again.

Um. Wrong. I had an outbreak back in the 80s along a nerve near my eye, which is a pretty dangerous area to get it. I was in a lot of pain for a  few weeks, with the weeping sores, burning, aw damn. I was under a lot of job stress at the time and that triggered the shingles. I was a lot healthier then, so I tolerated it better and recovered pretty well.

Shingles occurs when the virus that causes chickenpox starts up again in your body. After you get better from chickenpox, the virus "sleeps" (is dormant) in your nerve roots. In some people, it stays dormant forever. In others, the virus "wakes up" when disease, stress, or aging weakens the immune system. Some medicines may trigger the virus to wake up and cause a shingles rash. It is not clear why this happens. But after the virus becomes active again, it can only cause shingles, not chickenpox. 

You can't catch shingles from someone else who has shingles. But there is a small chance that a person with a shingles rash can spread the virus to another person who hasn't had chickenpox and who hasn't gotten the chickenpox vaccine.Shingles symptoms happen in stages. At first you may have a headache or be sensitive to light. You may also feel like you have the flu but not have a fever. 

Later, you may feel itching, tingling, or pain in a certain area. That's where a band, strip, or small area of rash may occur a few days later. The rash turns into clusters of blisters. The blisters fill with fluid and then crust over. It takes 2 to 4 weeks for the blisters to heal, and they may leave scars.

Yeah, all of that. Where did it occur this time?

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.

You know just how much Express Scripts/Accredo sucks?

Time to vent. It's all I can do when you're up against the corporate health industrial complex.

Express Scripts (@ExpressScripts)/Accredo (formerly Medco) handles my prescription insurance. These companies suck; don't ask me, just follow the hashtag #accredo or #medco. My local pharmacy is the reliable CVS, but my health plan, Blue Cross/Blue Shield, uses Accredo/Express Scripts as my primary delivery system for my chronic condition meds (I have rheumatoid arthritis, fibromyalgia, and insulin-dependent diabetes). I'm able to get a 3-month supply of most drugs at the cost of one script at CVS, but it's mail-order.

For RA I take Orencia, a once-a-week injectible that is a biologic. These drugs aren't delivered in 3-months supplies or auto-refill (these are expensive drugs,  at $20K/yr.) by the company; you get a month at a time. In fact, Accredo won't fill it unless you're practically out of it. I told them last Thursday when I arranged for delivery the following week that I was taking my last dose the following day (that Friday) and I'd need the Orencia delivered before the following Friday. They arranged to have it arrive yesterday.

I need to take the Orencia to be able to work without being in excruciating joint pain the following Monday after taking it on Friday afternoons. This class of drugs come with a lot of bad side effects (fever, chills, body aches, extreme fatigue, nausea and more), that last for a couple of days, so that's why I take it on the weekend -- so I can be in the best shape as possible during the rest of the week. It's hard to focus when you're in a lot of pain, so Orencia (and alternatively, Enbrel), have been my lifeline to being able to be effective. It has come at a cost -- I lose my weekends to these drugs. But as I said, it has allowed me to not be out of work, sick and writhing in pain.

The Thursday delivery that never happens

So yesterday comes and goes; I'm supposed to take My Orencia this afternoon. Still doesn't arrive. I call them up and the nurse says THEY WERE OUT OF STOCK AND JUST CANCELLED MY ORDER.

No phone call to me. Express Scripts/Accredo whatever the F they are calling themselves JUST DID NOTHING.

I asked, well then why didn't you call earlier in the week to see if a local pharmacy might fill it (even one dose). No answer. Get put on hold several times to see if they can find it.

She says it's now in stock and doesn't know why someone didn't contact me. I told her that I needed this med to take over the weekend (so I can deal with the bad side effects and be effective at work).

She puts me on hold again. Then she says "They do have it in stock; the soonest delivery date they have is NEXT TUESDAY. That means I don't have it today, of course, and that means going a week without it because I cannot take it when it gets here; it put me off schedule for dealing with the side effects.

And since it's Friday at 5 PM, it's too late to reach my doctor about whether to go without for a week (this isn't considered a medical emergency since I won't die without it, in corporate speak), or to take my remaining dose of Enbrel (another RA med I switched from to try Orencia) that I have in the fridge.

Guess I'm just f*cked either way. 

Since I'm only working 3 days next week because of the new year holiday, my inclination is to suffer through the week until next Friday rather than use the last dose of Enbrel today. I don't know if Express Scripts/Accredo is going to F up like this again, so I'm loathe to leave myself with nothing.

She ends the call, "Have a happy holiday/happy new year" I had been polite during the entire call. I just could no longer hold it together so I just hung up.

***

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.

Working my way through the weekend med grind.

Just posting articles in between bouts of nausea and doubled-over-level pain. Hard to distract from it; watching L&O: CI marathon (2002 eps; all Goren/Eames).

Another Saturday lost to MTX and Orencia side effects. Had to take a long nap and I still am pretty non-functional, all over pain and chills. Bleh.

Turns out Orencia is no better or worse than Enbrel, though the injection hurts a lot less.

The depressed/blue mood caused MTX is so pronounced it's kind of frightening. But that passes by late Sunday, disappearing as suddenly as it comes on; same with the other side effects. They really should alert folks more about that.

At least I don't have get on the work hamster wheel for a few days. That wheel has been way too fast lately.That or I'm just starting to lose capacity to recover. When you have to turn in at 6:30 PM, it seems kind of a soon-to-be lost cause.

When your prescription insurance company forces you on meds that don't work

I tend to be more pragmatic when it comes to trying new medical therapies; if dealing with some side effects is part of the price for improved quality of life, then it's worth the gamble.

After the personal trial and error over the years to find medicines that work well in concert to treat my myriad conditions, I received letter in the mail from my prescription insurance company, Medco/Express Scripts, booting some from of its covered list, substituting a med that is not only more onerous to administer, but doesn't even measure up in terms of performance of the prior med.

Such was the case of Victoza. Its manufacturer, Novo Nordisk, lost its contract with Medco/Express Scripts for the drug, an non-insulin injectible that enhances blood glucose control.. It's all about the Benjamins.

The world's biggest insulin producer said it had lost two contracts with Express Scripts Holding Co - a contract for its diabetes drug Victoza, won by Bristol-Myers Squibb Co, and a deal for insulin Novolog, taken by Eli Lilly & Co.

A spokesman on Tuesday confirmed the lost business but had no further immediate comment.
Express Scripts is a purchasing organization for a number of prescription programs serving between 40 and 45 million Americans. 

"This is a serious blow for Novo Nordisk. I think it will hit earnings per share by closer to 3 percent in 2014," analyst Soren Hansen at Sydbank said.

In case you were wondering, here is the list of excluded drugs. Here's an another link explaining that the co-pay supplements offered to patients to defray the costs of the drugs has now blown back on the drug companies as the insurance companies figure they don't have to cover them. And the patients are caught in the crossfire.



Not only was Victoza off my plan, but even my blood glucose meter! The Freestyle strips and meter are no longer covered, so I have to get a LifeScan One Touch. That's not a big deal, since I can use the other meter until I have no more strips left.

But back to Victoza. What was the substitute offered by Medco/Express Scripts? Bydureon.

The Food and Drug Administration twice declined to approve Bydureon in 2010, with its most serious concern being that the drug might contribute to heart rhythm abnormalities. 

A study by Amylin, which is based in San Diego and led by Daniel M. Bradbury, suggested this was not the case. Trading in Amylin’s stock was halted in advance of the announcement of the approval; shares rose as much as 16 percent in after-hours trading.

Analysts expect annual sales of Bydureon to eventually exceed $1 billion. But they are less enthusiastic than they once were, in part because of safety concerns involving thyroid cancer and pancreatitis.

Not that Victoza doesn't have its share of risks and controversy. I've had good success with Victoza (a good number of people cannot tolerate it). Having lived with diabetes for ~30 years now, I've dealt with the old syringes/vials and mixing for years, so once I was able to move over to insulin in a pen with short slim, needles (Victoza is also administered by pen) that didn't have to be refrigerated all the time, or kept in a cooler, it was life altering.

Well, Bydureon (see the photo above) is a throwback to the old days of mixing the drug when you administer it. It comes with a spiral bound manual (yes it's that many steps) to assist patients in the DIY of mixing the powder with the liquid in a syringe. It's because once the two are mixed, a chemical reaction takes place to create the medication itself and must be used immediately.

The manual is fairly straightforward, but it's beyond annoying to have to go through these dummy-proof steps that are designed for people who will f*ck it up. I'm fortunate in that I'm not squeamish about needles after all these years, but I can imagine someone with shaky hands and a queasy stomach about shooting themselves up in the leg would be intimidated, so this is why the instructions are 20+ pages.

But god almighty it's a pain. The Victoza pen only involves screwing a very short needle on the end (all the pen needles for insulin products are standard sized) and you shoot up; you can leave it out at room temp until your pen is empty.

Efficacy of Bydureon vs. Victoza

OK, after a few weeks on the drug, I can safely say it doesn't do anything for my BG control; no awful side effects, but it's not working. My numbers have been significantly worse from the start (morning fasting BGs around 80-100 are now 190-210).

A few weeks after starting Bydureon, I also switched RA drugs. I work aggressively with my rheumatologist to find the best biologic that gives me enough quality of life to continue working, knowing that every single one has caused me to get sick after administering it (I choose Friday afternoons). I am usually sick most of the weekend -- fever, chills, joint pain through the roof -- but they subside and by Monday I'm good to work, albeit I do run out of gas after 4PM and the other aspects of RA seep back (fatigue, weakness). So I've been through Methotrexate, the front-line base drug patients start on, as well as Plaquenil. I can only tolerate low doses of MTX; I have horrible side effects, but it works well with the biologics I have tried -- Humira gave me the most relief, but caused intolerable side effects (like losing my voice). It stopped when I went back on Enbrel.

Enbrel only gives me about 4.5 good days so my rheumatologist and I decided to see if Orencia will work.

Orencia can be taken by infusion (IV), or DIY via prefilled syringe. Enbrel comes in a prefilled pen and the shot hurts like hell. Orencia is in a more intimidating syringe with a needle you can see going in, but it hurts less than Enbrel if you let it sit an hour before giving it.  Both burn as the medicine goes in.

Yesterday was really not fun, as I noted on Facebook:

Wow, that was one horrible afternoon. Fridays are when some of my weekly meds wear off and it was a sudden hard crash of surging pain everywhere that all I could do was pass out on the sofa. Orencia is clearly no better than Enbrel so far and has a rougher "finish." At least I made it home.

Then, when I went through my weekly ritual of re-upping the doses/injections (the ones that me sick over the weekend), I had to do one needle per leg, since the meds burn going in and leave the limbs sore. I take pain meds an hour before to blunt it, and that's about all it does. Since Medco made me switch one drug (it stopped covering one), the substitute hurts a ton more. Figures. (I guess the GOP's response is I should just stop complaining and die quickly, lol.)

One went a bit rougher than the norm, with profuse bleeding down my leg that took a while to stop to get a bandage on.

Good times...tomorrow's another day (or some reasonable facsimile). — feelingpained.

The Bydureon injection was what caused the bloody leg. I went on to say this in the comments:

...all out there battling chronic/life-changing (and particularly "invisible") illnesses know it's one day at a time, with some days a lot worse than others. And it's often less about being brave but tenacious, because your alternative is to give up. Though now I fully understand how intense chronic pain can push people to that alternative, something I didn't appreciate until I ended up like this. 

I am thankful for my lack of squeamishness about needles, blood, surgery, onerous and humiliating side effects, etc. It has to be horrible for those who have that extra burden. 

The various auto-immune-related conditions I have made themselves apparent over ~30 years (RA is the latest), it has been interesting to see how much progress has been made in medicine on what are complex diseases, but it's clear why there are no cures. Effects are so individual to one's body that even subtle differences in meds and therapies (traditional or holistic) may have radically different impacts, positive or negative. Trial and error that requires endurance (and insurance, and we see how that system fails too many!), is all we have to move the ball forward. 

I am fortunate to have an excellent, responsive health care team that does take the time to work with me (i.e. over 20 years w/the same endo). So there's a practical reason why I have little patience with the "why don't you just leave NC" arguments re:LGBT rights issues. Life isn't that black and white for everyone, and why should I have to give over the good parts of life in my state to these backwards bigots? Oy, that's a whole new thread, lol.

The major #FAIL of Orencia is it doesn't have the positive impact on my BGs that Enbrel did. The Victoza plus Enbrel worked so well that I was able to cut my insulin use by >50%. The BGs I'm running now are horrible and require 4+ shots a day. I was down to 2, sometimes 3 at most. Since I'm getting just about the same relief, I'm pretty sure I'll end up back on Enbrel. 

I don't see whether Medco/Express Scripts will cover it long term; if it doesn't then it's back on Enbrel no matter the what. I see my doc next week, so we'll discuss next steps. I may end up on voicemail hell with Express Scripts.