Goodbye, Cimzia!

The test results are in!

Small Bowel X-Ray: NORMAL
DEXA Bone Density Scan: NORMAL

This means that I have no active disease in my small intestines. Likewise, there’s no visible damage from any previous Crohn’s flares. My small bowel is in good shape. Also, I have no permanent bone damage from any of the medications I’ve taken. Hooray!

I also have the blessing of my new doctor to stop taking Cimzia, as long as I keep taking the other immunosuppressant, azathioprine. Which I’m totally cool with. It’s not going totally meds-free, but at least it’s backing down to just one medication (and one that’s worked well for me for years, with few issues).

No need for a follow-up visit at this time. As long as I stay in remission, I’ll have my blood tested every 6 months and call it good.

I couldn’t be happier about this! With any luck, my face will start to clear up in the near future as this crap makes it way out of my system. Although it looks like the scarring could take a year or more to fade. If I can go a few weeks without an acne explosion, I’ll try putting contact lenses in again. With luck, the skin and eye inflammations were hand-in-hand.

In other medical news, Scott’s healing up great. At the two-week point post-tonsillectomy, he still has a bit of a sore throat, but the stabbing horrible torture is done. We even went out for lunch yesterday so he could get some fish and chips, something he’d been jonesing for since the day after surgery. He’s back to work in a couple of days, and has already written some fresh comics.

Tonsils, X-Rays, Bone Scans!

It’s been a very medical week here at the House of Meyer.

Scott had his tonsils out last Friday. He was the oldest patient that day (although not their oldest overall — apparently they once had a 62-year-old get his tonsils out). The doctor said it was quick and easy, with very little blood loss.

He’s following what appears to be a standard adult healing schedule. Days 1 and 2 were painful, but then day 3 was way worse. Days 4, 5, and 6, a lot of pain — especially in the ears. I took a peek in his mouth, and the scabs on his throat are weirdly white. Apparently sometime between days 7 and 10, the scabs will fall off, and the pain will ease up enormously. Fingers crossed that it’s more day 7 and less day 10. Poor guy.

I myself went into the hospital this past Tuesday for a couple of tests. I got the standard three vials of blood drawn, since when you take multiple dangerous black-box medications, you have to check various levels and kidney/liver functions on a tight schedule. Then I got to experience a couple of first-time procedures.

The woman who prepped me asked why I was having the tests done. I told her that I’d had Crohn’s for 14 years, but never had these things done, and since I just changed doctors (because the old one was a dick), the new guy wanted these essential tests performed. She asked who Doctor #1 was. I told her, and she smiled and said, “I won’t say anything.” A moment later, she said, “Not a good bedside manner with that one.” And a little later, “I totally understand why you changed doctors. But I shouldn’t say anything.” Vague, but perfectly clear.

First up was a DEXA bone density scan. DEXA stands for Dual Energy X-ray Absorptiometry, and it’s basically a specialized x-ray that’s aimed at the spine and hips, checking for osteoporosis. This is one of the tests my new gastroenterologist was amazed I’d never had, since I took steroids for a couple of years. Also, the two medications I’m on now can also erode your bones away. I’ll be interested to find out how my hips look, since I’m plagued with arthritis in them even when my Crohn’s is in remission.

After that, I got to have a small-bowel x-ray done. In this test, you drink a bunch of chalky barium, then take x-rays every 30 minutes until the barium has made its way through the entire small intestine. It can take anywhere from a half-hour to four hours or more, depending on the speed of your guts.

They told me I’d have to drink two cups of barium. Being a cooking type, I pictured two actual cups. Turns out they meant two 16-ounce plastic tumblers, so it was actually four cups of barium. The first swallow tasted a little like the candy stick in a Lik-M-Aid Fun Dip packet, but then it just became chalky sludge. It wasn’t quite as nasty as the various colonoscopy preps I’ve done, but I had to drink it a lot faster. Times like that, I wish I’d learned how to chug.

Fortunately, they let me walk around and play with my phone in between the x-rays. I made quite a bit of progress on Angry Birds. It took me a little over two hours to get the barium all the way through. Then I moved into a different room, where the radiologist pressed on my guts with a weird paddle thingy, and took close-up x-rays of a few specific areas.

He commented that everything looked normal, but he’d go over all of the films and send the results to my gastroenterologist. If my small bowel is normal, that’ll be awesome. Apparently around 70-80% of Crohn’s cases have some level of small bowel involvement (which makes it even more perplexing that I’ve only ever had colonoscopies, which only look at the large intestine). If I don’t, then I’m one of the lucky ones. And also if there’s nothing going on in the small bowels, that means I can stop taking the Cimzia. Which is good; I’m getting really tired of the hideous pizza face acne.

Gut Doctor, Car Doctor, Throat Doctor

Gut Doctor

I visisted my brand-new gastroenterologist yesterday.

A recap: I was originally diagnosed with Crohn’s disease in 1997, and had been in medication-free remission since 2003. I had a Crohn’s flare in 2009, and hadn’t found a new gastroenterologist in Floriday yet, so my HMO referred me to Doctor #1. Had a colonoscopy and started on the meds that I know put me in remission (immune-suppressors), although they started me at a lower level. After 3 months, Doc#1 opted to put me on a second medication, Cimzia (one of the new “biologic” drugs that specifically targets something called Tumor Necrosis Factor Alpha) as well. He said after 6 months, I’d stop with the immunosuppessants.

Two years later, Doc#1 never did stop one of the medications. I’m still on both. I had to go in for a visit every three months because he enrolled me in a 10-year clinical study for the Cimzia. Every visit, I complained of dry, grainy eyes (I can’t wear contacts anymore)and horrible cystic acne, among other issues (occasional fatigue and arthritis). All of those things started when I started the Cimzia. He’d always wave them off, or tell me to see a dermatologist and an ophthamologist for additional creams or drops or pills to deal with the side effects. When I said that I still had occasional joint pain (because I probably have permanent joint damage from all the steroids I took when initially diagnosed with Crohn’s). He’d also wave that off, saying things like, “Well, that shouldn’t be happening.” Sometimes he’d act like I was lying. Sometimes he’d even roll his eyes.

I knew he had a terrible bedside manner, but my last visit took the cake. Once again I complained about the side effects of the Cimzia, and also expressed concern about the long-term possible side effects: cancers, brain injury, even death. He looked me square in the eye and said, “If you can’t stop worrying about these things, I recommend you seek therapy.”

After making me cry (not for the first time), he left the room. And while I was standing at the counter making my next grueling follow-up appointment with the receptionist, I got to overhear him complaining about me to his staff. Because I’m in remission, and other people aren’t, and I just don’t appreciate the great doctoring he’s done to get me healthy.

Awesome, right?

Finally I’d had enough. I went to my HMO to get a new referral to a new gastroenterologist. First they gave me a referral to Doctor #2, but then I got a call from one of the ladies at Doctor #1’s office. Doctor #2, it turns out, is in a different branch of the same practice that Doc#1 is in. She warned me that Doc#1 would most likely discuss my case with Doc#2, since they’d just be handing my records over inside the same practice. So I called the referral folks and asked for someone completely separate.

Got an appointment set with Doctor #3. Then I went to get a copy of my records from Doc#1. The ladies in his office were very understanding, and didn’t charge me for the big stack of paper. (They’ve always been lovely.) It was an interesting read, to be sure — nowhere in two years’ worth of records is there a single mention of the side effects I’ve had. There’s also no mention of any joint pain, nor of when I reported that I had a stubborn inner ear infection (when on immune-suppressing drugs, you have to keep a close eye on any infections). There were no mentions of anything — according to these records, on every visit I was healthy and free of symptoms or side effects, with no problems at all. After reading through everything, I was horrified and angry, but so happy I was going to get another doctor’s opinion.

I just hoped he’d have a different opinion. I was very nervous to see Doc#3, because for all I knew, he’d agree with everything Doc#1 said, and he’d keep me on what all my research told me was too much unnecessary medication.

I went over my 14-year Crohn’s history with Doc#3. He asked if I’d ever had a small bowel x-ray, and I told him no, never. He seemed perplexed, and asked again to be sure. Nope, doc, never even heard of a small bowel x-ray. I’ve only ever had colonoscopies.

I told him about the two medications I’m on. He asked what others I’d tried before taking the Cimzia. I asked, what do you mean? He listed other biologics — Remicade and Humira — that apparently people are supposed to start with, because Cimzia is a medication that people move to after others stop working. I told him no, I started with Cimzia.

Then I told him about the side effects I’ve had ever since starting Cimzia, the horrible embarassing cysts on my face, the gravelly dry eyes, and when I told him that my old doctor advised me to see a shrink, I started to cry.

I apologized for crying. And Doc#3 quietly put his hand on my arm and said, “You have nothing to be sorry about.”

He told me that the eye problems are absolutely due to the Cimzia. And that he hadn’t heard about cystic acne, but it’s absolutely possible because of the Cimzia, or perhaps the combination of drugs. He told me that for Crohn’s disease, which affects the entire digestive tract (as opposed to ulcerative colitis, which is only in the large intestine), a small bowel x-ray is essential to see if there’s any damage in the small intestine. And he said that if my small intestine looks good, then there’s absolutely no reason I should ever be taking the Cimzia.

Then he asked if I’d been put in a clinical study for the Cimzia. Yes, I told him — some 10-year thing. He asked if it was the Secure study. Yeah, that’s the one.

THAT,” he said, “is the reason you’re taking the Cimzia.”

And I burst out crying. Because all of the studies on Crohn’s I’ve read (and I’ve read a lot) made me think that because I respond beautifully to a less dangerous medication, I should never have been put on the Cimzia. That it’s the next step for people who aren’t helped by other medications. But Doc#1 insisted that he knew best, both meds were essential, and that I should remain on the combination of meds “until a cure comes along.”

I dried my face and left with orders for some blood tests and a small bowel x-ray, which I’m doing next week. It’s a 4-hour procedure where you drink barium and then wait for it to make its way down into your innards, then they take snappies of your barium-coated guts. If all that comes back looking good, I’ll be able to go from two dangerous medications down to one, and potentially down to zero at some point in the future. I might be able to wear contact lenses again. And hopefully the acne scars should fade … in a year or two. I also left feeling like I have a doctor who listens, and who cares about what I think and what I want.

Car Doctor

In less my-innards news, Scott’s car died in a clanking, clattering, puff-of-smoke way the other day. He knew his clutch was getting squishy, and had just called around to see what it would cost to get a new clutch put in. He was planning on dropping his car off before his tonsillectomy, so they could take their time. But last Thursday, the clutch decided to give up the ghost.

He had something like a 3-hour wait for AAA to send a tow truck, and then had some crappy service from the rental car company. But on the plus side, we dropped the rental car off yesterday, and the guy who helped us was the branch manager. He asked how the rental process was, and we both smiled and made “ehhh” sounds. Told him about the rental guy who tried to charge us more than we’d reserved for, among other things, and the manager took forty bucks off the bill. Nice!

Scott has his car back, and he says the clutch feels great, but now it’s idling rough. They had to replace a couple of hoses and gaskets and such that were underneath the engine, so we figure something just didn’t get tightened down the right way. I think he’s going to take the car back tomorrow to see if they can get it smoothed out.

Throat Doctor

Friday, Scott’s going in for his tonsillectomy. I had my tonsils out when I was five, so I have no real memories of the pain or how long it took to recover. All I remember is that I got an injection in my butt, and that really hurt.

We’ve heard a wide variety of stories, but for the most part it sounds like recovery takes longer for adults, becaust they have more nerve endings and blood vessels connecting to the tonsils than kids do. So he’s going to be out on medical leave for 10 days, and we’ll play it by ear if he’s still feeling bad after that. Meanwhile, he has bottles of hydrocodone at the ready, and we’re going out tomorrow to get ice cream, popsicles, protein shakes, and any other cold, soothing thngs we can find.

I can’t wait to see what kind of writing he gets done. I’ve told him he should write a diary. Neither of us knows how loopy the hydrocodone will make him.

Fortnightly Update & Photodump

It’s been almost two weeks since I’ve posted. Ack! It’s been a hustle-bustle fortnight here at the House of Meyer.

Workwise, I’ve just finished a week of training for my actual job. If you’ll recall, I’ve been doing some basic greeting and luggage-hefting until they had a classroom session available. I only had to wait a month and a half to start my actual training, which is apparently fairly fast. The five days of training consisted of one day of learning the two software programs, then four days of doing the job while under supervision. I’m sure I’ll still have lots of little questions here and there, but I have the gist down. I start doing the actual job tonight, although I don’t get to do the classroom learning until tomorrow, so I may only have half of the software I need available tonight. We’ll see. Three people do the job at the same time, so at least I’m not being thrown in all alone.

Since I have no seniority, it looks like I’ll be mostly working nights. I don’t mind it so much, except that Scott works mornings. We get to re-bid for schedules every 6 months, and I just missed the bids when I started, so hopefully in 4 months or so we’ll be able to figure out a way to see more of each other and maybe share a day off.

Medically, I’ve been down with a cough and some stuffiness. I’m also going next week to a brand-new gastroenterologist, hopefully one who actually listens to me and doesn’t treat me like an idiot. With any luck, he’ll agree to let me stop the double-dose of immunosuppresants, and go down to one for maintenance. Also with luck, he won’t make me wait two hours to be seen or make me cry or tell his staff what a pain in the ass I am when I’m standing right around the corner, like the old guy.

Scott’s getting ready for some medical whatnot of his own, although I don’t know for sure if he’s said anything to the general public yet. I’ll just say that he’s going to have a procedure done soon that I had done when I was five, and after he has it done, he’ll be able to eat all the ice cream and popsicles he wants.

Commie’s eye is doing great. A little weepy now and then, but for the most part back to normal. Here he is on top of the safety and side-effects sheet for Cimzia, one of the medications I take for Crohn’s. Mind you, it’s also printed on the back side. In fairly small type. This stuff packs some serious yuck.

In the world of little animals, we’re seeing a ton of baby frogs lately. When a friend was over visiting, she just had to pick one up. You can see how totally tiny they are.

Believe it or not, this was one of the larger tiny frogs. Later that week I saw some that were less than half this guy’s size. I’m making sure to step gently when I see them.

Here’s a question for you Oregonians and Portlanders. I saw this car in our apartment complex lot, and while I understand the two Oregon-related stickers, I don’t quite get how the “TURD” sticker fits in.

Perhaps it’s just another of this Portland-loving person’s fixations. Portland and poop, two great tastes that taste great together.

Lastly, we met up with some friends for dinner and mini-golf last week. First we went to Putting Edge, which is an indoor glow-in-the-dark place located at Festival Bay. For those of you who don’t know, Festival Bay is a relatively new-ish but spookily deserted mall. Over half of the stores are vacant, and the occupied spots are filled with weird stores like Black Market Minerals or the several memorabilia stores. When your mall’s biggest stores are Bass Pro Shop and Shepler’s Western Wear, you know you’re in trouble.

We peeked in at Putting Edge and decided that it looked cheap and cruddy, like a traveling carnival’s spooky dark ride. Everything looked like badly-painted plywood. Their price was the same as all of the other area mini-golf joints, so we just toodled over to the nearest Congo River Golf location. Same price, but far less creepy.

See? Much more civilized. The course was good, but it was mostly creative greens. I prefer a mini-golf course with stuff like windmills and buildings and other weirdness. I may be spoiled, since I grew up really close to a Putt-Putt that I loved.

It appears that Universal is building a pair of ’50s B-movie themed mini-golf courses, set to open in early 2012. Fingers crossed that they’re awesome, because the theme is right up my alley.

Gluten-Free January

I’m taking part in Gluten-Free January, a little grassroots project that is actually something I’d been thinking about trying to put together myself. I wanted to challenge friends to try just one month gluten-free to see how much better they could feel. This makes it easy, since someone else has already set up the framework.

I eat mostly gluten-free already, because it turns out that gluten can be one of the main triggers for a Crohn’s disease flare. I do occasionally splurge, but when you’re not used to eating the stuff, a splurge tastes good at the eatin’, but doesn’t feel too good during the digestin’. So come tomorrow, I’ll be avoiding the stuff completely for a full month. In fact, I had some breaded chicken strips a couple of days ago, and … blargh.

This also means no beer. Although the Whole Foods has a couple of gluten-free beers, they’re pricey. Maybe I should just make 2011 a beer-free year as well.

Anyhoo, anyone else out there doing GFJ? A couple of my Seattle friends on the Facebook say they’re going to take part. If you’re a low-carber, this does mean that certain convenience items like low-carb tortillas and breads are off limits. But on the plus side, there are a ton of gluten-free products out there, some of which are not bad. And all pre-packaged products have to list wheat as an allergen if it’s included.

I have a number of gluten-free items in my low carb category of posts. And I just got some Bob’s Red Mill gluten-free baking flour; it’s only slightly less carby then regular wheat flour, but I don’t plan on using much at a time. It’s mainly to adjust the texture of stuff made with my old favorite, coconut flour.

Colonoscopy 2010!

So a part of having Crohn’s disease is getting looked at from the inside more often than the average bear. Most people are encouraged to have a colonoscopy every 5 years starting at age 50, or age 40 if there’s a history of colon cancer in your family.

Me, I get to be scoped every two years. Although this time we did it a bit early; I’ve been on a new medication for a year, and we wanted to see what kind of healing it’s been doing. So it’s actually been 1 year and 7 months since my last colonoscopy.

Probably a lot of you have never had this experience, but you most likely will in the future. So what should you expect? Here’s what goes on.

The day before the procedure, you aren’t allowed to eat solid food. You’ll get a list of the fluids you’re allowed — basically, anything liquid (or Jell-O) that isn’t red or purple. You definitely don’t want anything staining anything red … down below.

So I spent the day hungry. I opted to not drink any of the fruit juices (pineapple, apple, strained orange) on the list, because sugar just makes me hungrier.

That evening, you have to drink something gross. No matter what brand you get, it’s always gross. I’ve done a couple of other types, and it’s always involved mixing a powder with water and drinking anywhere from a liter to a gallon. And this stuff is ALWAYS salty. Because it’s the salts that make it work, pulling water into the bowel and causing everything to rush out. But usually you can flavor it yourself, so you can make it salty lemonade or salty Gatorade or whatever other flavor helps you swig it down. (Research afterward shows that there are pills that can be taken, but they’re dangerous to the kidneys. DAGNABBIT.)

This stuff I was given, Suprep, is already flavored. And sweetened. With Splenda. Now, I use Splenda in baking a lot, but I know that it’s too sweet, so I always reduce the amount. All commercial products made with sucralose are always, always too sweet, and this was no exception. The flavor they chose was what I call “medicinal berry”, the kind of mixed-berry flavor you’d find in a cough syrup or cold elixir. So even diluted in water, it was a too-salty and too-sweet and too-gross berry sludge. I was unable to finish it.

Bottom line: DON’T USE SUPREP. It was the worst I’ve ever used.

After drinking for a while, it’s into the bathroom. Now comes the cleaning out of everything that’s left inside. My little girl-cat was sympathetic, and hung out in the bathroom with me for most of the evening. If you’ve tried to chill your prep liquids to make them more palatable, then you’ll be shivering all the while as well. The evening before the procedure is, by far, the worst part of the whole thing.

Next morning, really early, it’s off to the hospital/clinic/office where you’re having the procedure done. A little paperwork, maybe a payment, and then it’s time to take off your undershorts, throw on a classy hospital gown, have a pregnancy test if you’re a female (they will never, EVER not do this, even if it’s fun ladytimes that day), get an IV inserted, and lay around for a while.

My doctor is always late. For office visits, I always expect to sit in the waiting room for an hour and a half after my appointment time. For this procedure, first thing in the morning, I was wheeled into the actual action room 50 minutes late. Ugh.

The complete hookup includes electrodes on the chest, the IV in your arm, a blood pressure cuff, a pulse monitor on your finger, and one of those oxygen tubes in your nose. The plastic of which always smells like a new shower curtain. (As you can see, I was shooting for another low blood pressure world record.) Everyone gets set, and then it’s lights out. They inject anaesthetic into your IV line (my anaesthetic looked like milk), you feel incredibly happy and fuzzy for five seconds, then you’re waking up afterward. It’s nice that modern knockout juice wears off pretty fast — 15 years ago, I woke up from my first colonoscopy groggy and freaking out, and spent the rest of the day in a haze. Nowadays, I’m coherent right away, and while I wasn’t allowed to drive the rest of that day, I was able to do anything I wanted to without fuzzyheadedness.

The doctor came by afterward, chastised me for my sub-par prep (I warned him in advance that I wasn’t able to finish the Suprep, what with the gagging and crying), and reported that everything looks generally OK. He took some biopsies, and I go in to visit him in two weeks (where I’ll wait 90 minutes in the outer chamber first) to get a full rundown.

I was up and dressed and walking out within 20 minutes of waking up. Scott pulled the car around, and homeward we went. Now, there are two big tasks after this procedure. Number one is to get the air out, and number two is to eat. As for number one: throughout the procedure, they pump you full of air so that they can see everything clearly. So afterward, you have to fart like your life depends on it. Last time, I had a hard time with this, and was in some serious pain until I got home and rolled around a lot. This time, I was apparently posessed by a frat boy, and was able to get the job done quickly while still at the surgery center.

Secondly, EATING! After four skipped meals, it was time for a big, soothing, greasy goo-burger. Diet be damned. So off to Five Guys it was! And then home for a big nap. I’m glad I took the day after off work, so we could tackle some of the usual weekend chores and errands.

Overall, it’s not too traumatic an experience. Especially if you don’t have a strong gag reflex, because the drinking of the salty water is the worst part of the whole thing. I’m definitely requesting a different prep next time. Or, hopefully in two years, they’ll have come up with a better pill-based prep system.

Oh, and — the babysmasher at Five Guys had the oddest logo on it. Couldn’t not take a picture.

A Multitude of Medications

Well, my gastroenterologist’s office went to bat with the drug insurance company, and my Cimzia is now covered. I won’t have to pay $1500 per dose, huzzah! And I only ended up injecting 5 days late, so there shouldn’t be any issues.

I’m also able to get the prescription filled at my local pharmacy, which is SO much more convenient than mail-order. You’d think it would be the other way around, but since this is a drug that needs to be refrigerated, they send it FedEx overnight. And since it costs $1500 per dose, they require a signature. So basically for the first half of my Saturday, I would have to sit around the house, trapped until the FedEx guy came so I could sign for the stuff. Now I can just take an icepack to work, and pick the stuff up on my own terms on my way home.

I had a visit with my gastroenterologist this week — he’s moved me from “recovery” to “remission”, since my guts are working pretty well and my other stuff (rash, arthritis) are fairly mild. Now, what to do? Well, it turns out that three of the best researchers in the field of Crohn’s disease have three different opinions for patients who’ve been put into remission on the one-two punch of immunosuppressants (like the Azasan I take) and biologics (TNF-Alpha blockers like Cimzia, Humira, Enbrel). One doc says to drop the immuno, keep the biologic. One says to drop the biologic, keep the immuno. The third says to stay on both, because, “Why mess with a winning combination?”

My doctor actually watched an argument between two of these experts at a conference. I bet that was cool. So for right now, I’m staying on both the Azasan and Cimzia for six months, and we’ll see if there are any new developments or ideas at that time.

In completely different medical news, I ran out of allergy medication last week, so I said to myself, I said, “Self, you’ve taken this stuff for years. See how things go without it.”

After a week, I got more. Itchy eyes, snotty nose, constantly clearing my throat. I simply can’t deal with the various pollens, grasses, and flora that Florida has to offer. So I’m back on the Claritin (or more specifically, the Costco Claritin clone [say that 5 times fast] called AllerClear).

It feels weird to post without a picture attached, so here’s a mural that was on the wall at Logan’s Roadhouse:

Spitbottle, harmonica stein, and arthritic air guitar!

A Tale of Two Prescriptions

At the pharmacy today:

Me: Hi, I have two prescriptions ready, but I’m only picking one of them up.
Pharmacy Lady: Sure, can I get your name and birthdate?
Me: [name, birthdate]
PL: (looking at computer) And now, which one … wha … wha … WHOA, WHAT!
Me: Yeah, that’s why I’m not picking that one up yet.
PL: WOW.

So for my Crohn’s disease, I’m currently taking two medications. One (Azasan) is a daily tablet, the other (Cimzia) is a monthly injection. I’d been getting the monthly injections via the pharmacy’s mail-order system, but it’s a real pain in the butt, because the medication needs to be refrigerated. So they sent it overnight, and I had to sit at home until the FedEx guy brought by a styrofoam cooler so I could sign for it.

We just changed prescription drug plans at work, so I figured I’d take the opportunity to start filling that prescription at my local pharmacy. That way, instead of killing half of my Saturday waiting for the delivery, I could just stop by the pharmacy (which is in the parking lot at work) on my way home and grab the box of stuff.

Well, this new drug plan doesn’t like the Cimzia. They say it’s not a “preferred” medication, so they won’t pay a single cent for it. If I want to just pay a co-pay, I can have my doctor switch me to Humira or Remicade or Enbrel. But if I want the Cimzia, I have to pay the full price myself. Which for one monthly dose comes to … $1500.

Wha wha whoa what, indeed. Good thing I already have an appointment to see my gastroenterologist in a couple of weeks. Either he and I can collaborate on the long, drawn-out appeal process to try and make the Cimzia a “preferred” drug, or he can switch me over to Humira. We’ll see what happens.

On the plus side, the Azasan tablets were $110 for a 90-day supply under the old plan. With the new plan, I just paid $43. That probably would have delighted me if I’d heard about it before the whole $1500 thing.

Long Time No Whine

Yes, I’ve been a terrible slacker. It’s been over a month since I last posted. But I do come by and read everyone on my list every day. I’ve been posting a lot more things of the 140-character nature; I guess I’m hooked on Facebook and Twitter. Those handsome bastards.

Medically, things are looking up. The dermatoligist looked at the rash and skin biopsies and said, “I don’t know what’s wrong with you.” The rheumatologist looked at the rash and joints and blood tests and mumbled, “I don’t know what’s wrong with you. Come back every month.” (I’m not going back to that guy.)

The gastroenterologist said, “Definitely active disease, but it’s hard to say if it’s Crohn’s Disease or Ulcerative Colitis.” But now there’s a shiny new blood test that can indicate whether it’s one or the other. So we did it, and it’s Crohn’s Disease by a hair. Meaning that of the four markers, one was a tie, one leaned toward UC, and two leaned toward Crohn’s. Looking at my old Seattle medical records, my old doctor vacillated between the two diagnoses on a monthly basis. Oy.

So I was put on the old reliable immunosuppressive drugs that I took years ago. They socked me into near-remission — I haven’t had a joint flare since we went to Seattle over a month ago, and the rash is much, MUCH milder — now I’m just getting the tiniest bit of rash on some days, and NO rash on others. Which is great. And now I’m starting up a brand new immunosuppressive drug, which will take the place of the old one. It’s administered not with pills, but with self-injections into my belly fat. Fun! For a while I’ll be on the two different immune-suppressing drugs (hello, Purell and OCD handwashing) and in a couple of months, once the new stuff is in full swing, we’ll drop the old drugs.

That’s about the most exciting stuff going on with me right now. I’m still tired a lot (that’s always been in my top 3 Crohn’s issues, and right now it’s #1) but I can deal with it.

In other news: Florida is hot. Summer is here, so it’ll be intolerable outside for three months or so. It’s supposed to hit 100° today, before the violent afternoon thunderstorms roll in.

Scott had a weekend full of good news items, none of which I’m cleared to talk about just yet. Overall, his comic strip is doing well and growing slowly but steadily.

Oh, and since starting Atkins again in November, I’m down 22 pounds. Also slow and steady. There’s still a good 20 pounds to go, but I feel much healthier already.

"40 Biopsies" will be my new band name

I know, I know … I haven’t watched American Idol yet today. I’ll get to it this afternoon. I’ve had a busy couple of days.

So last week, both the dermatologist and the rheumatologist were all, “We don’t know what’s wrong with you!” The best they could come up with was either a hypersensitivity to some medication I’m taking (which isn’t it, since I haven’t been on a single medication consistently throughout this rash) or a hypersensitivity to something else going on in my body.

Today I went and had a colonoscopy. Yesterday was the prep — no solid food all day, followed by drinking viscous, salty water in the evening to clean things out. I don’t wish this procedure on anybody. Anyhoo, I went in at 6:30am, they knocked me out around 7:30, and by 8:15 I was awake and pretty lucid. The gastroenterologist came by and we chatted.

My Crohn’s disease is active not only in the lower part of the large intestine, but also up in the small intestine. Lots of activity in there. The doctor took a whopping 40 biopsies from my innards. It’s an impressive number. But in a weird way, it’s nice to know that my disease is so active. It makes me hope that the rash and the swollen joints are connected, and if we can get the Crohn’s under control, we can also get the other crap under control.

I go back in two weeks to get all of the biopsy results (they’re going to have me do some new blood tests too) and we’ll chat about getting me off the old meds, and onto some of the shiny new medications (Remicade, Humira) that apparently do really well.