Enormo Face and the Mischief of Mice

 

Mischief of mice…I think that’s got to be one of my new favourites. It will go on the pile alongside other bits of dweeb humour and useless information that serves to both amuse and intrigue me. Along with a gaggle of geese, a murder of crows, a bloat of hippopotami, a leap of leopards, a tiding of magpies and a smack of jellyfish.  Or a romp of otters, a parliament of owls, an unkindness of ravens, a bevy of quail, a rhumba of rattlesnake, a murmuration of starlings, a tower of giraffes, a hedge of swans and a dazzle of zebras. Beat that: A dazzle of zebras and an unkindness of ravens.  And what are we but a “group of people”. I personally think that unkindness fits more aptly than group, but maybe that’s just my inner pessimist shining through. Either way, ours is lame, lame, lame.

And now; onto the next adventure of Enormo Face. We find our hero back in February 2008, wishing half-heartedly for death, or at least to slip into a hearty coma so that she could finally sleep through the night. And, so it begins:

I was first admitted to the hospital to get my UC under control a couple of months following my mom’s death the previous December. I figured I’d be there for a couple of days, they’d top up my fluids and I’d be on my way. Not so much. I was in the hospital for about two weeks before they realized I had pancreatitis (and I began my love/love relationship with substances like Percocet, Demerol, Morphine, Oxycontin and Oxycodone).* In the week prior to them finally figuring that out, I had been diagnosed with C Difficile, which is an awesome thing to have in and of itself, but when it’s combined with a severe case of Ulcerative Colitis it actually feels like you’ve won the lottery. Diarrhea? Already had that, thanks. Fever? Already had that, too, and it had begun to feel selfish to double up on everything. What about all of the other lucky people out there? Oh, and abdominal pain? I was three for three: a hat trick! Anyway, so I wasn’t getting any better, the steroids weren’t working to make my UC any better, I had pancreatitis and I was suffering with C. Diff [which the hospital staff kept arguing I got in the Caribbean on our Cruise, but because I didn’t present with it until I had been in the hospital for at least a week, I had my doubts (and still do to this day)].  So, there I was: miserable, dropping weight, so nauseous I couldn’t move my head without making myself sick, and being poked all day, every day in the vein attempt to get some blood work done (I am the pun-master). And along came a miracle! Or so I thought…

Remicade (aka Infliximab) is a new category of medications in the fight again IBD known as “biologics” or “designer drugs.” They were developed in a lab and are “designed to either block specific molecules or receptors on cells that are important to promoting intestinal inflammation or to activate other molecules or receptors that are key places in reducing intestinal inflammation. They have the potential to provide very targeted treatment and the hope is that by providing targeted treatment, the overall number of side effects will be reduced when compared to traditional therapies.”**

I remember the first time my doctor at the time brought it up. He essentially said it was the only thing left and I wasn’t getting any better. As I didn’t feel any better, I believed him. To be fair, I was kind of out of it and didn’t really have the opportunity (or the energy) to really examine all of the pros and cons of this new medication. All I understood was that it was my ticket to ever leaving the hospital. So, I agreed and they ordered it. I should probably take the opportunity here to talk about what it is, what some of the pitfalls and benefits are, and how it is administered.

Remicade is an IV solution that is infused over approximately 2-3 hours. The initial doses are administered at 0, 2 and 6 weeks, and then every 8 weeks or so you have to get a maintenance dose to keep the Remicade in your system and the disease in remission. The amount of medication needed is dependent upon the patient’s weight – it’s administered by kilogram. It is also reeeeaallllly expensive. I think my weight at the time was about 115-120lbs and the cost was almost $3000. I heard a rumor that there was a guy down the hall from me at Sinai and apparently his treatments cost almost $8000 – I have no idea how much he actually weighed to require that much medication, or how he managed to be both overweight and have UC or CD at the same time, but I suppose that’s a conversation for a different time. So, I was looking at shelling out approximately $3000 every two months, or $18,000 every year (once the initial $9000 had been paid out for my three establishment doses). Again…I can feel your jealousy.

Because I was in the hospital at the time, your taxes paid for my first dose (thanks everyone!). You guys also ended up paying for my second dose, because shortly after my first infusion, my doctors admitted they didn’t quite know what to do with me and my plethora of disease. So, I was transferred from the quiet, rural hospital where I was being quarantined for C Diff. and moved downtown to Mt. Sinai where I was put under the care of Dr. Steinhart, my new GI. My third dose was a whole different thing, and we’ll get to that in due time. But, suffice it to say: I paid for it. And by I, I thankfully mean my private insurance coverage (that was still in effect) and a program called RemiCare.***     

So, once I got past the colossal price, I looked toward the medical benefits: I could leave the hospital, get back to living my life and otherwise be a pain in the ass to all who know and love me. So, I had the first infusion at the rural hospital. A nurse stays with you the entire time and monitors things like blood pressure and heart rate. About 5-10% of lucky people have what is known as an “acute reaction” during the infusion that is characterized by flushing, warmth, redness, along with a feeling of chest tightness, and shortness of breath. However, I was told that these symptoms do not generally appear during the first infusion, even if you are in the lucky 5-10%. (I think, somehow, this is comparable to people getting stung by a bee and being fine, but then being stung by a second bee and having it be a huge problem. The first sting is known as “sensitizing” because it makes you more susceptible to stings in the future. Or something. Again, my degree is in the social sciences as opposed to a real science).

So, the first infusion went well. Got transferred to Mt. Sinai and was held there for two weeks for observation, nutrition and more steroids, while I waited to begin my second infusion.  So, I got my own nurse again who came to watch me, started the infusion and I waited for it to be over. Soon I began feeling very warm and sweat through my hospital gown. Shortly after, I felt like my face was literally on fire and it became a little difficult to take a deep breath. I tried to convince myself that this was in my head; a reaction to all of the information I had read about infusion reactions and the possible side-effects.  When my father and sister arrived, though, they took one look at me and asked what was wrong. So, I called the nurse, who had been conferring with someone in the doorway, and she immediately set about helping me: the infusion was temporarily stopped, I was given two Aspirin, and Benadryl (an antihistamine) was injected through the IV. I began to feel better, the fever broke again (sweat through gown number two), and they slowly re-started the infusion after having one of the GI residents come in and check some stuff. The infusion took closer to four hours, but it seemed to go pretty well after that, although I admit that the appearance of the CPR/Crash Kit next to my bed did little to calm my anxiety.

The next day I was allowed to leave and I was given the date and time of my next Remicade infusion which would be at what is known as an “infusion clinic.” These are places where IV meds are given to out-patients so that they do not have to keep returning to the hospital for treatment, and they can pay directly for their meds prior to receiving them.  I was told that it had been noted in my chart that I had had a reaction and that the infusion clinic staff knew to give me Aspirin and Benadryl prior to starting the Remicade, in addition to significantly slowing down the drip rate. FYI – in the majority of cases, these reactions are not allergic reactions per se, but are understood as “infusion reactions”. Researchers have argued that this may be because Remicade is a foreign protein (partly human and partly mouse), which may cause the immune system to activate and produce antibodies against it. These reactions are never fatal and the reaction always goes away with the cocktail detailed above.

So, for the next four weeks I waited for the next infusion, attempted to put some weight back on, continued to take my Prednisone and wrestled with my new symptom of debilitating joint pain. Apparently it is not uncommon for people who take Remicade to exhibit joint pain (which I find ironically funny because it was originally designed as a drug to combat Rheumatoid Arthritis, another inflammatory auto-immune condition).  I have lived with knee pain since my teen years, so I was no stranger to feeling stiff, but this was something else entirely. I apologize in advance to everyone out there who does suffer from arthritis, because you are made of sterner and tougher stuff than me. This side effect laid me absolutely low: I couldn’t sleep, couldn’t move and couldn’t get around the pain to concentrate on other things. It was everywhere; my hips, shoulders, knees, ankles, wrists and elbows along with being annoyingly persistent in smaller joints like my fingers and toes. Good times…

Anyway, I saw Dr. Steinhart about it and he tested my blood for an RH factor (apparently an indicator for arthritis or something). It came back negative and he said to wait and see how I did with the next infusion. A few days later, I showed up at the clinic and was shocked that there was no room for my father to stay with me. He was told to go home and that "we" would call him when "we" were finished. (Riiight). I was led back into a room with a lovely, giant chair, a television set, electrical outlets for laptops and mp3 players, as well as a mini fridge if I wanted to keep my lunch and drinks cool (note to self: they have mini fridges at infusion clinics so you can bring snacks and drinks. Who knew?). So, I climbed into my super-chair and got comfortable while a nurse set me up with my pre-infusion cocktail of two Aspirin and intravenous Bendaryl, before setting me up with a slow drip rate.While all of this was going on, she talked quietly to the only other woman in the room with us; a first-timer who looked super nervous and suspicious of everything in the room, including me.  

And then a curious thing happened: my face began to get warmer, and warmer and warmer. I thought for sure it was all in my head until my chest began to feel tight again. Then I began to have trouble breathing and feel a little light-headed. I called for the nurse and she stopped the infusion to administer more Aspirin and another thing of Benadryl. When she started it up again, I immediately felt worse: while I was flushed/feverish in my face, I was shivering so hard I began to hurt myself. Then the shivers seemed to turn very quickly into convulsions and the nurse knew we had a problem. She took the infusion lead out of my arm, ran another Benadryl and gave me four more Aspirin to swallow while she covered me in a blanket. While she bustled about, I tried not to knee myself in the face and looked to the Remicade “newbie” sitting in the chair next to me. I apologized for the drama and said “I’m sure this doesn’t happen to most people. I’m just lucky, I guess.” Then I couldn’t talk anymore because I was afraid I would bite off my own tongue with the convulsions. The nurse called her supervisor, a medical doctor who was seeing patients in the exam room next door. He quickly examined me, told the nurse to call an ambulance and began looking around in a cabinet. He pulled out a device I am familiar with only by association; two of my BFFs have severe allergies and have to carry Epi Pens (epinephrine auto-injectors for anaphylactic emergencies). He then proceeded to pull back my blanket, pull up my shirt, dodge my jerking knees and stabbed me in the stomach with it. (For the record: ouch, dammit!)

I continued to attempt to apologize to everyone who would listen: the terrified patient next to me, the doctor who seemed inconvenienced as he hooked up heart leads and kept taking my pulse, and the poor nurse who looked more alarmed than the patient. Then I apologized to the paramedics who showed up to take me to the hospital, assuring them I was fine while trying to kick myself in the head and convulsing so hard I feared I would break my own spine.  I was transferred to the stretcher and restrained so I wouldn’t convulse myself right off the side of it. (Good decision.)  Being wheeled through the lobby of a busy medical centre was a great experience, especially because I wanted to cower and duck my head in humiliation but I couldn’t stop jerking against the restraints long enough to effectively turtle. I also kept interrupting myself when I attempted to talk to the paramedics. In the middle of perfectly normal sentences I would abruptly bite off my words. For example: “I’m sorry. This is [teeth snap]…complete-  [snap, snap]-ly unnecessary. I’m f-[snap]-f-f-fine.” I believe at this point my credibility became laughable and I was pretty much ignored until they had me secured in the ambulance.

So, I got a free ride to a new ER (heyyyy!), where I was allowed to wait in the hallway, surrounded by people who seemed genuinely sick (you know, gun shots, heart attacks, a knife wound, stuff like that). And they kept staring at me because I looked like I was in the middle of a seizure (and probably feared that I was liable to take flight at any moment). Into the fray came my father, who had apparently been reassuringly phoned by the nurse from the clinic: “Your daughter was taken to the hospital by an ambulance. Something went wrong and I’m not sure what’s going on.” (Points for tact noted, especially when one considers that my father had lost his wife two months ago after an ambulance ride, and then had watched me getting sicker and sicker in front of his very eyes in the months following.)

Anyway, the epinephrine seemed to eventually take effect and I could relax my body so it didn’t jerk and flail anymore. After that, the triple doses of Benadryl I had been given kicked in and I became almost catatonic while trying to stay awake. I was seen by an ER doctor, who said three simple phrases following his examination: “I’ve never heard of Remicade doing this. You have to take Benadryl every four hours for the next 72 hours to make sure this doesn’t happen again. No more Remicade for you, ever.”  And then he shook my dad’s hand and said we could go.

So, that’s pretty much the end of my relationship with the ‘Flix of Mab. With it being such a catastrophic failure, I was soon back in the hospital (three days following my 25^th birthday actually), where they briefly tried Humira, which is another biologic. It has no mice proteins, so the risk threshold for a similar allergic reaction was greatly diminished. Instead of working intravenously, it is injected into your arm much like a vaccination. The initial dose is a bitch because you get stuck in both shoulders and both thighs, one after the other. But, when you get over feeling like a pin cushion, you begin to remember why Humira could prove to be the IBD silver bullet: if it worked, I (or one of my sadistic friends) could stick me in the arm, once every other week in the privacy of my own home. (A process that I, and any of my friends and family who wanted to try, was supposed to practice on an orange during spare time.) However, a week went by and it became obvious to everyone that it was not working. And, at a time when the only thing everyone seemed to agree on was that I was getting worse, the only option left seemed rather obvious. This is the moment when I met my BFFD (Best Friend Forever Doctor) Dr. MacRae, whose first words were that the colon had to go if I ever wanted to see the outside of the hospital. Don’t get me wrong; I love the depressing hospital corridors with their mint green paint, the bevy of sick people and the delightful concierge staff that are more inclined to stick you with sharp things than turn down your bedcovers and leave a mint on your pillow. But, I didn’t get HBO on the inside and I needed to get back to watching some decent cable television.  So, goodbye colon! (and, incidentally, goodbye appendix as well.  No one had mentioned the colon/appendix 2-for-1 deal.  And I know it’s one of those useless organs that we have apparently evolved out of usefulness, but I still felt like I should have gotten a receipt or something.)

So, what do I think about Remicade now? Honestly, I am torn. Obviously, I am the worst case scenario: the 0.1% of people who are actually allergic to Remicade or something contained within it. I would never go on it again, even if a doctor was stupid enough to prescribe it, which I doubt. But, if you’re asking me whether or not you should try it, I can’t really say. I have met with a lot of people who are approaching 5-6 years on it and they couldn’t be happier. No surgery, they keep all of their body parts in their designated place, and they get to live their lives outside of hospitals. And, most people only have a 5-10% chance of having any kind of reaction, which are quickly and efficiently handled by trained medical professionals. However, I do have some standing concerns that I think cannot be entirely dismissed. The cost (which is astronomical if the patient is forced to shell out for it themselves), the inconvenience of having to report for infusions every 8-12 weeks without fail, the reality that Remicade has been linked to immune system suppression (notably some patients develop tuberculosis), and the self-discipline it requires to reschedule your infusion appointments if you have an open sore or if you feel you are getting sick with something as benign as the common cold. But, lastly (and perhaps most significantly), researchers do not yet know what the long-term side effects are going to be. Remicade is in its infancy; they have no data on what its continual use does to other parts and other systems of the body in the long term. One thing they do know, however, is that there is no safe mechanism to get people off of it.  Over time, the body builds antibodies which eventually reduce Remicade’s effectiveness. Doctors are now prescribing double and triple doses to maintain the same level of disease control, without cognizance of how these protocols will eventually end or what the ultimate cost will be. Aside from doubling and tripling the literal cost (so, instead of $3000 a dose people could be paying up to $9000 or $10000 every two months); they are also delaying the inevitable when the Remicade will simply stop working. And, there is nothing “above” biologics on the medication ladder; when it stops working, surgery is seemingly inevitable. So, if that is the case, why delay? Save the tens of thousands of dollars and skip right to the surgery.

But, these are all rational (and rather cold) reasons. I understand, believe me, I understand the compulsion to delay the cutting as long as possible. I understand the desire to leave your body intact, and the hope of being able to avoid surgery forever. And, I’m sure for some people this may work. Some people’s UC and CD go into remission and are never heard from again. Some are able to control and manage it with other drugs from the IBD arsenal (as discussed in the previous entry).  And others, like me, face the inevitability of the high cost that this disease demands: surgeries, ostomies and the necessary concessions to a new life and a “new normal”. So…what do I think about Remicade? I think it didn’t work me, but it might work for you. I think you owe it to yourself to make an informed decision, which requires conducting research, talking to patients and speaking to your doctors. And I think that it’s a highly personal decision fraught with perils and potential triumphs. So, all I will really say is this: good luck, get informed and I’m here if you want to talk.           

         

*Yes, this relationship may cause me to appear on the reality show “Intervention.” But, aside from being necessary to combat and control my rather painful pancreatitis, I get the added benefit and dubious distinction of being a Narco Baron to my friends and family. And anything that imbues me with the title of “Baron” cannot be underestimated.

** Taken from Dr. A Hillary Steinhart’s book “Crohn’s & Colitis: Understanding and Managing IBD.” (2006). Now I do not intend to use this blog to hock or endorse products, but I will be honest about which products and materials have benefitted me. That being said, I will say that I know him personally and that he is GI doctor, which is how I heard about the book in the first place. Despite its gripping subject matter (I am being sarcastic but I can personally attest that it is vitally interesting to people who are slayed by this disease), I found that the book helped clarify a lot of the scientific information being tossed around that I didn’t really understand (and still don’t, if I’m honest). I have enjoyed reading it and have given it to several other people in my life (Alien and others) who are also dealing with this disease.     

*** For those living in Canada, there are several avenues to pursue to help you finance medications and prescriptions that cost a disproportionate amount of your paycheque/ takehome. Talk to your private insurance company. Look into programs run by the drug companies themselves (in this case, BioAdvance which has replaced RemiCare). And, look into Provincial programs that are designed to help offset catastrophic prescription drug bills. In Ontario this is called the Trillium Drug program. FYI, Trillium has begun to crack down on Remicade reimbursement requests, arguing that too many doctors are skipping right to these treatments without verifying if less drastic and invasive drug protocols would be successful. So, you may require a testimonial of some kind from your GI doctor attesting that Remicade is both necessary and required to save your life.