Methotrexate: Kind of a Big Deal

 

 

I am in no way qualified to give advice about methtrexate, (or anything, really)  but I’m going to share my cautionary tale.    It’s a bit of scenic route.  Thanks for riding along.

When I was first diagnosed with scleroderma, I had three questions:

1.  Sclero-What?

2.  Is scleroderma going to kill me?

3.  Can I drink with these meds?

The most important question I have ever asked about scleroderma, and eventually about sarcoidosis,  is  question number three.  No matter what the diagnosis, the answer to the first two still have easier answers than number three.  No one is really ever mentally prepared to be diagnosed with a debilitating, fatal disease no one can pronounce, so you’re going to cope some how. Why not do some drinking? ( smoking or eating.  I am so thankful someone was wise enough to put marijuana into baked goods. God Bless America.)

I’ve been taking methtrexate off and on since 1996.  This does not make me an expert.  It makes me someone who is lucky to be alive.    I am guilty of playing  “home pharmacist” on more than one occasion.  It has been helpful to me at times like the Percocet Incident: when  doctor sent me home with copious amounts of opiates to take whenever I was in pain, which was all the time.  I could take eight Percocet during the day, come home from work,  have three margaritas and still be sitting upright,  carrying on conversations and playing Crash Bandicoot until 11:00 at night.   The information I needed to survive the progression of scleroderma was not yet available in the 1990’s.  In fact, the last twenty years have been a string of events, while I wait  for the research to catch up.  I’m not saying that anyone is lucky to be diagnosed with scleroderma, but I will say that it’s better than being diagnosed with scleroderma  in 1994,when doctors would answer my questions about medication and alcohol with statements like:  You should do whatever you want, you  don’t have much time anyway.  

Okay, so here is what I did  with my methotrexate.   Big emphasis on the did.  I now have doctors who answer my questions without the premise, “Well, you’re going to die soon.  Have some fun.”

When I feel an infection (wound or surface) I will skip a dosage. Skipping vs not skipping,  has meant the difference between quick healing of an infected wound.  And yes, I have discussed this with my rheumatologists.  Things like colds or viruses- I don’t skip unless my doctor tells me to.  Another issue is when I do need antibiotics for a wound infection,  certain antibiotics  blocked in a pharmacist’s computer system because I am on methotrexate.  One example is Bactrim.  

I had a wound infection that would not go away.  My doctor prescribed me Bactrim, but when I went to go pick it up, the pharmacist tried to replace my Bactrim with Keflex.  It’s no secret I hate Keflex.  Hours after taking it, I would get a weird taste in my mouth and just the smell of Keflex makes me gag.  Sure, itworked for me for a while, but it no longer works for me because the wound infections I get now are antibiotic resistant.  So, I politely  told the bright-eyed pharmacy assistant who was just trying to help me, to hang on to that Keflex.  I had to go back and get my doctor to override the block.  When  my doctor entered Bactrim into the system, it activated a  “warning” built into the system to block contraindicated medications.  It blocked my Bactrim because methotrexate interferes with Bactrim’s effectiveness.  So, I went back to my rheumatologist, had her put a note in that the methitrexate had been discontinued, which it had for two weeks because when I have an infection that won’t heal, the worst thing I can take is an immunosuppressnt.  But you see, the computer had to be told that I had stopped methotrexate so it would allow the Bactrim.  And BEHOLD! Bactrim granted!  It took some communication to get the formulary corrected, but it can be done.  By the way, the look on the pharmacy technician was priceless.  A few weeks prior, we had a bit of a go round over Viagra, and I had that over ridden as well.  After getting them the information they need in order to follow my doctor’s prescription, feel an overwhelming level of satisfaction, like I should have a set of brass balls hanging from the drive shaft of my monster truck, which is super big because I am compensating for something else.

My point?  There is no way anyone can predict how our bodies will respond to medications, but we can work to prevent ourselves as individuals,  from being pigeon-holed into a treatment model that works for one group.  I have stood at many a  pharmacy window, and  glared at by pharmacy techs and pharmacists from atop their brick wall of formulary,  only to  return to their window as if I had just kicked  a twig off of my trail. Maybe it is all about how I perceive a problem.  The pharmacy saw themselves as a brick wall to save me from myself.  No one can save me from me, not even me.

One adventure with Methotrexate.

When I picked up my first prescription in 1996, to say I was frightened would be an insult to terrifying situations everywhere.  My three hour drive home was filled with thoughts of baldness, nausea and chemotherapy horror stories.  Luckily, I had no side effects from methotrexate.  My dose was titrated up to 25mg a week. My only side effect was fear.

Drinking and Methotrexate

I did experience three  Octoberfests on methotrexate,  and I survived with intact kidneys. If I could go back, I would advise me to be smart with my methotrexate.  Not  skip my blood work just because I didn’t feel like fasting.  (Done that.I never said I was a compliant patient all the time.) Drink lots of water, eat healthy and pay attention.  I would tell me, “Don’t drink Dumbass.    You don’t need to live like you are dying”.  (By the way, Live Like You’re Dying is a stupid song, and one of many valid reasons I still hate country music.)  

Methotrexate is  less a big deal than you think, but it is still  a big deal. It is a very strong drug and can kill you if you don’t pay attention.  Try not to panic.   Take the usual precautions you would regarding your health like avoiding alcohol, eating healthy and by practicing safe sex.   And by safe, I mean do nothing that requires the use a net and always establish a safety word, which  should never be “ouch”,  and you’ll be fine.  Notice I didn’t advise you to use a condom, because you already are smart enough to know that.  And if you need to be reminded to wear a condom, you do not have enough life experience to be reading my blog.  

Methotrexate is one of the most studied meds for immunosupression because  it has been around so long, and used so often.   My ex-husband credits the conception of our son because I took methotrexate the year before we conceived and after trying once before unsuccessfully.  

Of course, I was not on methotrexate when I did conceive- it just helped my body. In fact, methotrexate is exactly what you do not take if you are trying to have a baby.  But taking it to slow the progression of your hard to pronounce, incurable, autoimmune disease long enough to find yourself stable without it, before trying to have a baby was a good idea for me.  I was not going   to let some degenerative, fatal and hard to pronounce autoimmune disease stop me from having a baby who will one day grow into a mal-adjusted young adult in need of therapy because of his mother’s selfishness in her 40’s.  

You are smart and you probably pay attention to what you body tells you.  I always assume people who read my posts are more intelligent than I, and I have yet to be wrong.  You’ve got dreams.  Realize them.  Overcome the obstacles.     Move the twigs out of your way and get on with it.  People will think you’re moving brick walls, and it does wonders for the ego.   You’ve got this.

Don’t Hate The Playa, Hate The Game.

Then Set Aside Your Anger & Get to Work.

 

 

  In a place called, Wisconsin...

 

I was “awarded” a rating of 100% service connected disability.  See, I was “lucky” enough to have symptoms of scleroderma while on active duty in The Navy.

Early in my diagnosis back in 1994, and through the years despite my times of  inappropriate coping, I received the best possible care.  I broke the “rules” to get it.   In 2007, I was diagnosed with sarcoidosis after 14 years of symptoms that were confused with scleroderma symptoms, thanks to my persistence and the listening ears of my rheumatologist  and pulmonologist at UCLA medical center.  We owned a business at the time, and I was in charge of insurance benefits.  Of course, we had the best insurance money could buy for our employees (before we went out of business) and I used that insurance to see specialists recommended by my rheumtologist at the VA Hospital, who had no idea how to proceed with my treatment.

One lucky day, my rheumatologist asked, “Do yo have insurance?” and he referred me to colleague he now collaborates with to keep me alive and active.     Of course, it took some time.  I met the specialist at UCLA in 2005 and got my sarcoidosis diagnosis in 2007 after frequent  shleps from Murrieta to Los Angeles.  Once I got the biopsy that showed I had sarcoidosis, my rheumatologist prescribed Remicade infusions in addition to Methotrexate.  Long story short, after some time, the lymph nodes in my chest shrank, and it became easier to breathe.

Now, I enjoy Remicade every eight weeks at the VA Hospital.  And here’s where I broke the rules:  For my diagnosis, Remicade is number three in medication formulary.  If I had received my first treatment at the VA I would have had to fail Humira and one more IV drug before being given Remicade.  My rheumatologist at UCLA knew from my medical history and his experience with autoimmune diseases that Remicade was best for me.  So, how did I slip that by the paper pushers?  Golden Insurance.

My first infusion did need approval, because like the VA, other drugs were less expensive and Remicade was not the first choice of health insurance administrators.

Now, don’t go vilifying insurance administrators.  Like many Americans, they are probably overworked and underpaid.  And remember they have health insurance in their title.  Their job is to work on  behalf of a for-profit company.  Sure, an insurance company might give them cute names, like “customer care representatives”, throw words like “advocate” in their job title; but they are paid by the insurance company.  They are human and have responsibilities, they are not “the bad guy”.  They just need information.  And because like me, you or someone you know might have one or two chronic illness diagnoses that no one’s ever heard of and there is a lot of new information out there.  Of course there are crappy doctors, but you will find many doctors who are willing to help you advocate for yourself.  To get what you need, it’s just a matter of getting the right information to those who write the checks.

If – no, WHEN you find a doctor out there who will talk about non-formulary drugs that might work for you, or if you ask they will offer the name of non-formulary drugs to advocate getting, you need to get to advocatin’.   You may need to make sure the insurance company gets the information from the doctor to the insurance company .  This means opening up lines of communication between insurance administrators or “customer care representatives”.  (Really, all they are is an agent of the “guy” with the gold.  Remember, he who has the gold, makes the rules…)  This means yelling and screaming exactly what you think of them is not the right course of action. Don’t panic if you have already done this.  You just yelled at someone, so apologize and try to reopen communication.  I speak from experience on this one.  I have yelled at my share of “guys” who know THE guy.  And an apology is a nice way to open the door to communicate and get this person exactly what they need to get The Guy to part with his gold on your behalf.

You know what sucks the most about all of what I just said?   After all that work, most patients still don’t get what they need because of high copays.  I’ll get to that later.   See, I have the luxury of universal healthcare from the Veteran’s Administration.  It’s no picnic, but I have no copays and they can never deny me care,ever for any reason, until I’m dead. Which has turned out to be a lot longer than they thought…    

Yes, I know you have paid The Guy, but The Guy made some pretty tricky rules to make it so there is “gold”.  Look, its easy to get mad at the system.  But anger is time you are wasting when you could be making phone calls or faxing documents.  Yes, it sucks.  But don’t hate the playa, hate the game,  then set your hate aside and get to work.  Your life depends on it.

So, how did I manage to get non-formulary treatment?  My doctor submitted the documentation needed to show the insurance company that the best course of treatment was Remicade.  So, I got my first few infusions using my Golden Insurance.  Then, our company went under.   I disagree with my ex-husband it was The Golden Insurance that did us in.  It was, after all 2008 and everyone was going out of business.  So, we lost our insurance and I headed back to VA healthcare.

Back at the VA, my doctors there were working with my rheumatologist and other specialists at UCLA: Also known as: Continuity of Care. I was being treated with Remicade, but that was third in line in the formulary.  How did we squeak this one by?  Funny you should ask…

See if a patient is doing well on a medication, it is unethical to change the course of treatment.  Now, not every doctor honors this.  Again, don’t hate the playa, hate the game; then set aside your anger and get to work.  If your doctor tries to switch you, it’s going to be a fight.  Get used to it.  I know it sucks.  Life is unfair, but we do what we have to.  Don’t worry, you’ll make “don’t hate the playa” your mantra soon enough.

So back to our story…  So, my rheumatologist at the VA saw how well I was doing on Remicade plus Viagara (The same fight happened with Viagra as well).  It took some time.  I got approval for the Remciade first, then eventually, Viagra was approved.  I kicked open the door for Viagra at my local VA Hospital for women.  It’s considered a recreational drug for men.  And I did have to bring my medical records to my doctors at the VA from UCLA.  I still do.  What a nice happy ending, right?

You know what I hate most about my happy ending?  That patients who could benefit from the same meds I get, cannot get them because they have to deal with copays.  See, when I had The Golden Insurance, I could afford copays and when the business tanked, bankruptcy took care of the loose ends.  But as a 100% service connected veteran, my care and medication is covered 100% for everything.  EVERYTHING.  I pay no copays.  So I have access to Viagra and Remicade and Nexium .  Also non-formulary.   Yeah, like I said; kickin’ down doors.

Now, you may be thinking, but a copay is a fraction of the cost, right?  Right.  But in 2009, Viagra was $6.00 per pill.  And one Remicade infusion cost… It’s going to be legen-wait for it… $22,000.00 per infusion..dary.

 

Now, imagine yourself with no VA Healthcare or Golden Insurance.  Maybe you have a kid or two and recently find yourself collecting an “entitlement” check of $1037.00 per month, plus $537.00 per kid.  Living on such a “lavish salary” does’t leave much room for rent, food, clothing, school supplies for the kids and maybe there;s a birthday coming up for one of your little ones.   Do you see where I am going with this?  How many chronic ill and disabled parents have foregone their own medication to feed and house their own children?  (This is the part where I get sick.)

In 1996, I went into a patient advocate’s office and asked if my benefits were some kind of mistake.  See, I was given a pension and healthcare.  I didn’t feel that sick.

The advocate told me that I was entitled to these benefits.  That I had served my country and earned them.  She told me my that my prognosis was not good and I would need them.  I walked out of her office feeling not-so-entitled, but understood that I could not work and earn enough money to pay insurance to keep health benefits.  I had no idea that people who were not veterans, got a whole lot less and did not have 100% health coverage.  Yes, I even have dental.

So, I’m not sure where to go from here, but I’m starting something.   I am in some kind of remission-esque stable condition.  Scleroderma and sarcoidosis are both progressive diseases and the meds are only slowing it down.  But, I’m feeling good.  I;m no longer a hot mess with a blog.  I’m an active patient who’s going to go out and show the world that treatment of symptoms with the right meds does work.  That it’s not a waste of money to do research and make sure patients have access to care and treatment.

And so it begins, a fact finding mission.  Healthcare for all:  The Final Frontier.

Did you see how I started off all Star Wars then finished with Star Trek?  I know you felt that Jedi Mind Meld.

Other people have tried it.  There are programs set to go in place in 2014.  But there are people who can’t wait that long.  And starting another non-profit seems nuts when there are so many that need funding.  So, I’m going to go out in the world and figure this out.  I’m feeling good. I’ll have my bad days.  More than anything, scleroderma and sarcoidosis have taught me that I am mortal.  I plan to live a long time, but I have very little say in how long that really is.  I could mistake rat poison for Skinny & Sweet.  Because,  “It looks like Skinny & Sweet… except for the scull and crossbones.”  I couldn’t find a clip from the movie 9 to 5 for the younglings   So here is Honeybadger narrating the hummingbird.  Holy shit!  They’re fast…