Last week, I told the story of how my diagnosis of ulcerative colitis came about, and how it led to a 10-day hospital stay and eventually resulted in my dependence on prednisone. The post became too long, so I decided to break it into two parts. Here is the second part:
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Excerpt from the previous post:
“Long-term prednisone therapy causes weakening of the bones and can result in things like broken legs or hips. It is advisable to get off the prednisone at some point, and I couldn’t. The original 40 mg a day was weaned down in 5 mg increments until I got to about 5 mg a day, at which point, every single time, every one of my original UC symptoms returned. And I had been on prednisone nearly constantly for 2 years.
“Can you say frustration? Can you say drug addiction?
“(Yes, Cordelia’s Mom had become a drug addict, so to speak.)”
***
The colon-rectal surgeon who had been treating my disease referred me to a gastroenterologist with more experience treating severe, long-term ulcerative colitis. It was believed that the gastroenterologist could create the magic to get me off the prednisone.
The gastroenterologist prescribed 6MP/Purinethol. 6MP is a cancer drug, but is sometimes used for stubborn cases of ulcerative colitis. I started on 6MP while continuing with the prednisone, with a view toward eventually weaning off the prednisone. And it worked!
Until –
After a few weeks I began to notice that I was becoming very sluggish. I was going to bed earlier and earlier, and not feeling rested. Again, I was starting to do stupid things and driving poorly.
One fine summer day, I had a real estate closing downtown, and during the walk from the county clerk’s office to the parking ramp, I was unable to take more than a few steps without having to stop to rest. The distance was less than a block and it took me a very long time to get to my car. That night, I went to bed early and woke up about an hour later with the room spinning around me. Even lying down with my eyes shut, the dizziness would not abate. I felt nauseous and headed into the bathroom. Standing straight was impossible with the room spinning like that, and I told my husband to call an ambulance.
Next thing I knew, I was lying on the bathroom floor with my head in the toilet, the room spinning around me, and three burly gentlemen crowded in the tiny room with me. And I was too sick to even enjoy all that male attention!
I never had an ambulance ride before – had I not been so sick, I maybe would have enjoyed the new experience.
But I digress.
In the ER, it was discovered that I was anemic, and that my Vitamin B12 had been nearly depleted (which was the cause of the neurological problems). This time, I only had to stay overnight, but I did have to undergo two blood transfusions. I went home, again on Asacol HD and prednisone, along with Vitamin B12, Vitamin D, iron, and folic acid. The 6MP was discontinued.
And I was still hooked on prednisone.
Finally, my gastroenterologist suggested Remicade, which is a biological infusion therapy. After looking Remicade up online (I no longer totally trusted my gastroenterologist after the 6MP experience), I decided to try it. My doctor and I agreed that if the Remicade did not work, my only other option would be surgery to remove part of my colon.
But the Remicade worked! And I am in remission!
And, finally, I am off prednisone!
At this point, I would like to thank the young couple who were in the clinic when I went for my very first Remicade infusion treatment. (What, doesn’t EVERYONE read my posts?)
The wife was having the therapy in the chair next to mine, and her young husband sat by her side. Once I was settled into my own chair, my husband and I began discussing how nervous I was and how we hoped my doctor (with whom I didn’t have a whole lot of faith at that point) was sending me for the right therapy. Apologizing for jumping in on my conversation with my own husband, the young man next to me indicated that his wife had the same doctor! He then went on to say that she had undergone a number of the infusion treatments and was doing very well on them. He made a point to tell me exactly what I could expect, starting at the very beginning.
I wish I could find that young man now to tell him how his kind words made me so much more relaxed, and I wish I could tell him that he was right in everything he told me. He and his wife have never since been in the clinic at the same time I’ve had my treatments, so I haven’t been able to tell him face-to-face.
***
There is one drawback, however, which should be considered by anyone thinking about Remicade infusion therapy :
Be sure your insurance covers it! It is outrageously expensive.
When I got the bill for my first Remicade treatment, I nearly fell off my chair. The total was $4,600, and my co-pay under my insurance plan was $2,300. Fortunately, I have a supplemental plan which picks up the difference. No way in hell could I afford $2,300 every 8 weeks, even for what I consider to be a miracle cure.
But, of course, that’s still cheaper than frequent hospitalizations. My 10-day hospitalization in 2012 cost more than $20,000, which thankfully was covered by my insurance. And I lost a total of 3 weeks from work, thereby using up all of my vacation and sick time for that year.
***
And so, with a careful diet, my Remicade and Asacol HD, and a supportive family and understanding employer, I am currently able to live a fairly normal life. There will always be flare-ups, but at the moment they are few and far between and resolve quickly on my current medical regimen. I will be on medicine for the rest of my life for my ulcerative colitis, but I’m willing to accept that, considering the alternative.
And a note to my readers – rectal bleeding, even a little bit, is not normal. If you’re experiencing any of the symptoms I’ve relayed in these two posts, get yourself checked out!
By the way, the colonoscopy prep has been modified and isn’t that bad these days – it’s just one day and could save your life.
***
ADDENDUM: On March 1, 2014, my insurance company bumped Asacol HD into the third tier prescription co-pay level, meaning my co-pay is jumping to $400 per month. I cannot afford that, and there is no generic equivalent to Asacol or Asacol HD. Lialda is also a third-tier medication. It used to be that if there was no generic equivalent to a third-tier medication, the insurance company would view it as a second-tier drug, but apparently the insurer has revised their guidelines.
My supplemental insurance plan covers medical expenses, but not prescriptions.
Unless my GI doctor can come up with some reasonable alternative, I will be forced to discontinue one of my two necessary UC medications. It will be interesting to see what happens after that. Apparently, the insurance company would rather pay for multiple hospitalizations than to help defray the cost of medication to prevent those hospitalizations – what a good business decision!
I thought ObamaCare was supposed to help people who have to give up their necessary medications for lack of ability to pay for them. Guess that doesn’t apply to the Middle Class.
Needless to say, there will be many more posts coming on this subject as I wind my way through the maze of “affordable” health care.
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I love to hear from my readers. You may comment on this post, comment on my Facebook page, or email me at cordeliasmom2012@yahoo.com
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Images by: Marsmett Tallahassee, and Guian Bolisay, and Jenn and Tony Bot, and 401(K) 2012, respectively
Cordelia's Mom, Still 
The Rx is ridiculous, and the insurance companies are greedy, but the real idiots are those running our pharmacies. The prices of our drugs are marked up to a ridiculous amount. My thoughts are with you. As for Obamacare: do not get me started.
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Thank you. Right before the post published, my GI doctor was able to prescribe a first-tier drug. I haven’t taken it yet, and I sincerely hopes it works.
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I do hope it works for you.
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More fingers and toes crossed for you, here, CM!
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Thank you, as always.
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I have been on asocol on and off since 2002 and its crazy there is still not a generic for it! My doctors have told me its because the makers of asocol have switched the formulation a tiny bit and discontinued the old version, so no generic can be made bc the brand name drug has to be on the market for so long. I just found out my insurance company won’t cover my colonascapy that I must have every 5 years that is due this year to see if my meds are working and to scope for cancer since I am at higher risk with ulcertive colitis. Guess I will have to put it on hold for a year or more until I can come up with the money to pay for it on my own…I have battled getting off the prednisone too. I HATE it and its side effects to the point where I sometime would rather deal with the colitis than side effects that come from being on it and tapering off it. Since getting my initial flair up under control after 1 1/2, when I did flair up I could easily get it back in check with increasing my meds. However, more recently my flair ups are more often and harder to get rid of, and have had to go on the prednisone on and off in recent years. I think its must be because I am getting older, and my body doesn’t respond like it used to. Not looking forward to the future.
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Oh my. Sounds like you’re having an even rougher time than me. Could your doctor maybe get involved with your insurance company to explain why you really need that colonoscopy?
PS: I believe Asacol’s patent expires this summer, paving the way for generics, but I was told by someone who works for a pharmaceutical company that it could take a couple of years for those generics to be approved and on the market, at least in the US. If my new, cheaper medication works, I will do a post update in a couple of months.
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Oh, the interlocking greedy-but-stupid of- of- so much corporate and political “thinking” these days! Sounds like the “Can’t afford it? Go ahead and die!” faction won, after all!
Going out to hug a tree, now… sigh…
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That actually was my thought, exactly. The insurance company wouldn’t have to pay the funeral expenses!
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Yup! That’s ‘cuz they’re the “health insurance company” – the “life insurance company” is a different beast! (snirk)
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Gosh, reading your story brings tears to my heart. I know exactly how you feel!!!!!!! I was diagnosed 4 years ago. Last year was a very very bad year on constant flaring. I am thankful that I changed a lot of things in my life to me in my current state of health.
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And I TOO hate the insurance game. I ended up sucking it up and paying for my last scope. SMH…
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Thanks for both of your comments. I can’t believe that insurers won’t pay for colonoscopies! That’s not only uncaring, I believe it’s also poor business since it could prevent future problems. You have my sympathy and support in your own battle.
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Yeah that’s the thing. Insurance companies don’t care about preventive care as much as they should. I sometimes think they fund the pharmaceutical industry….
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They’re all interlocking, too. Shared boards and ownership, and all infected with the same short-sighted view: “Me, my, mine, NOW and to hell with “community” and “greater good” – and even the long-term health of the companies they run.
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Exactly! I see how they operate from both sides of the field. It is actually very sad.
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Well now, another thing we have in common! Remicade! I have Crohn’s — and have for over 40 years. It was originally diagnosed as ulcerative colitis as it was limited to my large intestine. There was no Asocol those days, 6-MP existed, but they never put me on it. I was in and out of the hospital for 10 years before I had surgery in 1982. The surgery, which was very new at the time, removed my entire large intestine, created a pouch in my small intestine (to hold waste) and reattached my small intestine to my rectum so I function normally. They only discovered that I had Crohn’s when they dissected what came out. It gave me 22 years free of bowel disease.
My problems began again in 2006, and I believe were triggered by artificial sweeteners.
Anyway, Remicade is wonderful, and I have my life back. I have insurance that covers it, thank god or I would be one sick puppy.
But, if they ever tell you they need to do surgery, I strongly recommend it. It was a HUGE nuisance, and in those days it was very new — only done at the Mayo Clinic and Johns Hopkins. I was the 100th surgery done in the world — my doctor’s 7th. Now it is not uncommon, and much of it can be done laparoscopically. They’ve made significant advances since Dr. Herbert Hoover (I’m not making that up) operated on me.
I found this by reading your Liebster post (1/24/15).
Good luck with your battle. It’s a shitty disease.
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Sounds like you really had a time of it. I got very, very close to having to have that surgery, but the doctors were able to turn my condition around just in time. It’s always an option in the back of my mind, however. In fact, after my 6MP experience, I actually begged my GI specialist to send me for the surgery – I was just so tired of being sick. He urged me to at least try the Remicade, and I’m glad I did. I’d gladly do one of those TV ads for Remicade – you know, romping through the field of tulips or something like that!
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Yes! I had been in a lot of pain before going on Remicade. I didn’t want to take it. I read about side effects for a living. I knew the possibilities, and I was really worried about the day-to-day infections, colds, pneumonia, etc.
But the first day, I was wiggling my tail around the house and the office. I could move again. It was glorious.
After 1-3/4 years, I am still doing pretty well, but I no longer feel the need to wiggle.
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I’ve been on it about as long as you have. My GI guy actually seemed a little surprised that I haven’t suffered any side effects, and that it hasn’t simply stopped working (which I guess can happen after being on it for a period of time). I just wish they had some way to give it by pill – those IVs are a nuisance, but a nuisance I’m more than happy to tolerate every 8 weeks or so, given the results.
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Yeah. Me too. I get it every 6 weeks
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OMG, Elyse – this comment went into my spam folder! Good thing I check those comments. I have to admit, though, that reading “I get it every 6 weeks” made me think of something else, and I almost deleted it before I looked at name of the author. 🙂
I get my Remicade treatments every 8 weeks now. So far that seems to be working. I suppose at some point in the future, the frequency might need to be tweaked.
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They upped my dose, too. I fave fistulizing Crohn’s — it eats holes in my body. Charming diseases, don’t you think?
Do listen to them about the other checkups you need.
I ended up with melanoma –stage zero so NBD. I don’t think it is because of the drug though. (1) My spot had been there a while; (2) I am Irish American with translucent skin; and (3) I grew up on the beach in the days before sunscreen.
Still, better safe than sorry. Oh, and wear sunscreen!
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Your disease sounds really nasty, Elyse. My one comfort when I was first diagnosed with ulcerative colitis was that “at least it’s not Crohn’s.” I do pretty much go for whatever tests or such that my doctors recommend, although I often wish I hadn’t. Oh, to be 25 again.
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I was having surgery at 25 …
The disease IS nasty, but usually manageable. Mostly, it’s a lifestyle screw-er.
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Bummer.
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Yeah. You have it easy. Right?
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Relatively so, compared to others, at least now that I’m in remission.
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Your other stories showed that it was a awful. Glad it is taking a rest.
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