Rear? In Gear.

Posted By: Adam 11 Comments

So you will remember that last week I wrote about how I still felt like poo. And I brought up one more instance of me being too lazy to take my medical status seriously. And you'll remember that because you then encouraged me to get in touch with my doctors, explain my situation, and get myself back on track.

Act 1: It's not you, it's me!

It's funny how when you tell your doctor that you haven't been taking the medication they prescribed, they act as if you don't have any idea how bad for you that could be. So I prefaced the discussions with each of them by saying that I knew I had been an awful patient — fallen off of the wagon, so to speak — but that I knew it, and that I am trying to put that behind me and get back to normal. Truth be told, I have been horrible about taking my meds since we got back from Ireland in September. I've felt pretty darn great, thanks mostly to the Remicade. And it's one of those "out of sight, out of mind" deals — certainly not intentional. I'm back on Fosamax for my Osteoporosis – no reason not to just jump right back in according to the Nurse Practitioner at my PCP's office. Still on 1800mg of Calcium and 1400iu of Vitamin D a day, too. I'd drink milk like it was going out of style, if it didn't disagree with my stomach so much. I spoke with Dr. R about my concerns over my last Remicade treatment, and he explained the tremendous set of checks and balances that they use to make sure that every patient gets the right meds, and that they use to inventory remaining medication every day. He even had someone check that the refrigerator they keep the meds in was still functioning while I was on the phone with him. He was very reassuring that I got my meds, and that they were actually my meds. He also said he understands my skepticism and even though there's nothing he can do with it, ordered blood work to check the level of Remicade in my blood, just to make me feel better. Dr. R also said that there is a small possibility that the vials used to mix my meds were not properly refrigerated during delivery — something they have no way to know before administering it to a patient — which would make the medication inactive, and explain how I've been feeling. If that is the case, I am more or less S.O.L. until my next treatment (on Feb 18th)! Since NSAIDS can cause Crohn's flair ups, the only OTC pain medication I can take is Tylenol. Which let me tell you: Doesn't help an arthritic condition that much, if at all. So, to help me deal with the pain until my next treatment, he prescribed a very low dose of Prednisone — the same steroid that gave me Osteoporosis to begin with — for a few weeks. I told him how I was worried about it setting me back, how I was on Fosamax, Calcium, and D, and he explained that the dosage is so low and the period is so short (3 weeks @ 10mg, then 1 week @ 5mg) that there is virtually no chance of harm from it. Just to be sure, I ran this past the NP at my PCP's office and she confirmed that it should be fine to take.

Act 2: Billy-who?

While I was in the waiting room, waiting for my appointment with my PCP's NP, I got a call from Dr. L. He called because he had received some of my recent blood work results, and was concerned about my elevated levels of Bilirubin. Dr. R. had already brought this to my attention when we met before my last Remicade treatment, and he ordered another round of blood work to check on the level again to see if it was fluctuating, and in what direction. He said that even if I had the syndrome he was checking for (whose name escapes me), there is no treatment for it, but luckily no adverse affects, either. Even though I explained all of this to Dr. L., he insisted that I get an ultrasound of my liver. So I have that to look forward to. Originally, Dr. L. thought that the increased levels of Bilirubin were attributable to the Azasan he had prescribed me, but since I haven't taken it since September he did some (admittedly deserved) finger waving and concluded that it couldn't have been the Azasan. He did say that I could discontinue the Azasan, since I didn't feel it was helping and he was somewhat concerned about Billy.

Act 3: Take 22,000 of these and call me in the morning.

Pills, pills, pills. I wish medicine were an exact science. I guess I'll settle for being able to take stairs 2 at a time without wincing in pain.

11 responses to “Rear? In Gear.”

@MomT - Dr. R's office handles probably 500+ local Remicade patients. It's way more prevalent than you might think. I'm sure if anyone else had reported similar effects/skepticism, that he would have told me, or that if anyone in the future does, he will let me know.

Remicade will show up in my blood whether it's active or not, so really the only thing that test will do is confirm that I actually got Remicade, and not something else. (Because if I got something else, the amount would be lower than expected).

I'm also sure that if there were any evidence of mishandling during delivery/transit, that Dr. R's office would take the appropriate action. It would be a *very* serious problem, and trust me when I say they do way more than you might think to make sure everything is done properly.

Even if I did have a personal problem with it, I would have absolutely zero influence on delivery or source or anything along that line. This isn't some pill I'm picking up at the pharmacy -- it's an IV Infusion, it takes 2+ hours, and it's (comparatively speaking) a big deal.

Adam ~ Aug 4, 2008 at 9:57 PM
Oh. And if the remicade was handled incorrectly in transit, that may be a problem. I'd keep track of it, make a note of it, and hope it doesn't happen again, and if it does, insist the pharmacy company use another delivery system.

MomT ~ Aug 4, 2008 at 9:57 PM
Okay. Well, At least you are on track with all of your doctors and back in line to get better. I'd be concerned if the remicade was not treated correctly in transit to your docs office. Maybe, if there is another patient on it (at your docs office), the other patient is exhibiting the same or similar problems? Anyway, at least you will know for sure if the remicade is in your system. I agree. I'd rather have the test and know. Tho if it is there but "inactive", I'd think there was a chance it wouldn't show up on the test, either. Hmmm.

Feb. 18 is a long way off. I sure hope the prednisone is helping. At least you DO have that temporary measure to fall back on. Better that than nothing. I agree. Tylenol is nothing but a placebo.

Liver problems tend to make you turn yellow. The whites of your eyes, nail beds, etc. Babies have bilirubin tests before they can leave the hospital these days. It just checks your liver function, I think. As long as your liver is still functioning, everything should be a-okay.

Thanks for the update. Keep us posted. I hope you are taking stairs by two's in no time at all!

MomT ~ Aug 4, 2008 at 9:57 PM
Bilirubin is pronounced Billy-Ruben

Adam ~ Aug 4, 2008 at 9:57 PM
Ok, so I got my questions answered. I'm glad that your doctors seem to be attentive to your concerns, and rather than being dismissive, are seemingly pushing the envelope with your insurance company. Thank God for insurance!!! Sorry that you feel like poo.

Ed ~ Aug 4, 2008 at 9:57 PM
So who's Billy?

justinT ~ Aug 4, 2008 at 9:57 PM
In response to your response to me: points taken. Thanks :o)

MomT ~ Aug 4, 2008 at 9:57 PM
Sorry to hear things aren't any better. :( I hope the new meds are helping.

Unfortunately if someone else had/has the same problem HIPPA says they can't tell you about it.... Assuming your dr's office follows HIPPA it would be really hard for you to find out if others have the same problem with their treatment. However hopefully it's a fluke and things will be fine after this one....

As for Billy...... Fortunately cause for major concern comes only when the number is extremely high and if they are just noticing it is a little high you should not have much to worry about. You should however test for what they want you to, hopefully it will be nothing, or atleast something minor with no major problems, you seem to have had enough of those in the last couple of years for sure!

That is the dr office coming out in me lol, as for everything I hope you are feeling better in no time flat!

Shelly ~ Aug 4, 2008 at 9:57 PM
@Shelly - I had forgotten all about HIPPA, thanks. Would it prevent him from even telling me he had another patient who experienced similar problems?

Adam ~ Aug 4, 2008 at 9:57 PM
No.

Erin ~ Aug 4, 2008 at 9:57 PM
Technically no, but some places take HIPPA to the most extreme possible which is just outrageous, so it may be his practice not to mention anything about anyone else. There are some doctors that I know that are like that. Even in the OR if we operate on someone, and see the doctor the next day or two and ask how that patient is post op they won't say, others will it just depends.

Shelly ~ Aug 4, 2008 at 9:57 PM