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.