The wrong medicine was delivered on Thursday.  I saw my doctor and confirmed that it was the wrong stuff, and he faxed a new prescription to the pharmacy right away.  I've called the pharmacy and confirmed that they have the right prescription, and will not mail it to me until I confirm with them that I will be home to accept the shipment.  There was no way to get the medicine to me before we left on vacation, so it will just have to wait until we get back.  That actually takes all the pressure off, and I can talk nicely to the pharmacy staff over the phone.  "You need 5 days to process the prescription?  Okay, no problem."

After a good night's sleep, I woke up in Arizona this morning, 4000 feet above sea level, surrounded by red rocks, and without a care in the world.

Meanwhile, there's a month's supply of interferon going to waste in my fridge.

So, I was all excited about finally getting on pegasys.  I got 4 weeks worth from the pharmacy at UIC, and have taken 3 doses so far. 

First dose: mild side effects.
Second dose: barely perceptible side effects that may have been my imagination. 
Third dose: no side effects.

I have one dose left, which I will take next week in Arizona.  My next four doses have to come via mail in order for my insurance to cover it. The staff at UIC warned me that I should call the mail-order place with plenty of time to spare in order to set up the delivery.  I knew from experience with the last mail order pharmacy I used that they weren't kidding.  So, I called early last week.  Since then, there have been so many phone calls back and forth between this pharmacy and the clinic at UIC and me (both at home and at work) that I don't really have the energy to accurately depict what went on.  I'd probably need a flow chart or a Risk game board and a lot of little plastic pieces.

Anyway, finally tonight, I made arrangements to have the medication delivered tomorrow.  It's important that it get delivered tomorrow, because I will be gone from this Friday through next Sunday.  The pharmacy won't deliver on Mondays (because they follow Sundays) and so my next opportunity to receive a shipment would be on the Tuesday after we get back.  I'm scheduled to take my medicine on Monday nights, so getting the shipment on Tuesday wouldn't be too terrible, but it would affect my medication schedule. Just getting to this point has been so frustrating that I would rather perform a bone marrow biopsy on myself using a rusty hand drill than go through it again:

I'm pretty sure that 90% staff of the mail order pharmacy that I've spoken to hates me now, because I've been an unrepentant bitch over the phone. "The prescription was faxed to you yesterday. How could it take 24 hours for it to show up in your system? That's unacceptable."

So finally,  I get to the point where the medicine is going to arrive tomorrow, and then I find out that ... the wrong medication is being shipped!

According to the pharmacist I spoke to a little while ago, the prescription they received, and that they have filled, is for peg-intron alpha 2b.  Pegasys is also know as peginterferon alpha 2a.

The pharmacist I talked to was actually really nice, and seemed much more sympathetic than the customer service people who I'd been talking to before.  He told me that maybe my doctor had switched me to peg-intron alpha 2b because it's been shown to have better antiviral effects in hepatitis patients.  Interferon is mostly used to treat Hepatitus, and this pharmacy lumps all it's pegasys and interferon patients into the Hepatitis division, so he assumed that  I had Hepatitis. I hadn't bothered to tell any of the customer service people I talked to that I take pegasys for polycythemia vera, because I figured a) they wouldn't know what it was, and b) that might trigger them to push the "Reject" button (it's bright red and attached to flashing lights and sirens) that instantly rejects my insurance claim.

I'm not entirely sure what makes alpha-a interferon different from alpha-2b,  but I do know that the most recent study in p. vera patients was conducted with 2a; and the other patients on the listserv I subscribe to say that there is a difference and that 2a is better tolerated by patients.

I have to go to UIC tomorrow for an appointment at one of the other clinics (my monthly blood test with the to make sure that my blood isn't too thick or too thin) so I plan to stop in at the hematology clinic to find out what the deal is with the prescription they wrote me – whether someone screwed up or whether they really want me to take the 2b. So, I may end up tomorrow with a month's supply of expensive medicine that I can't use, and be in the exact same boat that I was in last week; except now I'll have to try to set up another delivery while I'm on vacation.

I had a sulfur colloid liver/spleen study done today, because my liver doctors apparently think I'm "interesting."  No, really, I think it is a good idea to keep a close eye on all of the little abnormalities in my liver.  It functions just fine, but there's also a few weird spots that have shown up on MRIs recently that are most likely nothing to worry about, but better safe than sorry.  This test today was to take really good pictures of the liver that will tell us more about what exactly is going on in there.  It took place in the nuclear medicine department, where a radiologist injected me with a radioactive compound and then took a series of 6 pictures of my abdomen from different angles in 15 minute increments.  I could see my liver and spleen glowing green on a black screen as he took the pictures.  I asked how radioactive the stuff was, and he chuckled and said that it has a half-life of 6 hours.  By tomorrow it will be gone.

I knew that my spleen is big, but until I saw it today I didn't realize just how big.  The other pictures I've seen were all ultrasound scans, which just look like black and white blobs and could be anything, honestly.  What's that spot there?  It could be a blood vessel, or the nickel I swallowed when I was 6, or an alien. These pictures were unmistakable.  I got a good enough look to be able to create an approximation of it from memory.  Just for reference, here is a diagram that includes a normal spleen: 

 

Now, here's my own photoshop rendering of what I saw on the screen today:

The liver and spleen are in the same placement as in the top diagram, but notice the size difference.  The other green marks are the faint outlines of ribs, backbone, and pelvis that also showed up on the screen.  I confirmed with the radiologist that the one on the left is my liver, and the one on the right is my spleen.

I knew it was big, but, woah.  My exact words to the radiologist were "that's really, really huge!"  He smiled and said, "yes, it's a big spleen." So now, any time I see an unflattering photo where my belly is hanging out (like in this one) I'm just going to say, "I can't help it, I have a really, really huge spleen."

I took my first dose of pegasys on Monday, and didn't experience any of the side effects that I have come to expect from interferon.  I had taken a preemptive Tylenol, so I don't know if I would have felt anything if I hadn't.  Last night, i had some mild symptoms.  My joints felt a little achy, and I woke up in the middle of the night feeling hot and sweaty.  That's about it.  It was weird, since I am used to the interferon side effects, which would kick in within 4 hours of taking it, and then be gone within 16 hours.  The  nightsweat could also have been due to the fact that I forgot to turn the thermostat down before going to bed, so the room was warmer than usual.  The side effects should get even milder over time, which would be pretty sweet.

The new year has brought new health developments.  For one, my health insurance provider has switched prescription drug service providers, so I don't have to deal with the people at Caremark who I've been arguing with for the past 2 years over my interferon deliveries.  I wrote in November about the consternation caused by a recall of the interferon I take to treat my seriously fucked up blood.  I did end up getting the alternative form of the medication after about a week.  A few weeks later, my doctor decided to take me off of it.  Yes, I find it ironic that a few weeks after bitching and moaning about not getting my all-important medicine, my doctor decided I was better off with out it and I agreed with him.  The detail I didn't include in my last medical-related post was that the number of platelets in my blood had recently started to decline.  In November they were still at a healthy level.  By December they had dropped to the border between okay and not okay.

So, he had me not take it for a month, and then return this past week for another evaluation.  On the good side, my platelets were back up to robust health.  In fact, everything that before had maybe been a little low was now looking good.  Also good, the number of red blood cells (the ones that my body makes to many of, and my reason for taking the medicine in the first place) had risen a little but were still at a safe level.  The bad side was that, obviously, if I stayed off the medicine then my red blood cells would continue to increase.  Some of the other not-so-good things in my blood (like 'deformed' blood cells) would also continue to increase.

Maybe you've heard me talk before about pegasys, which is another form of the same medication.  I've wanted to get on it for 3 years now, but my insurance has refused to pay for it.  It's basically the same thing as what I've been taking, but is taken only once a week instead of 3 times a week.  It's less toxic than the form I've been on, and is better tolerated by most patients. That means fewer fevers, headaches, night sweats, insomnia and the foggy-headedness that accompanies it, and bruises on my belly from the needle.  I'd forgotten how miserable the interferon could be, until I re-read this post from November 2007.

At my appointment this week, my doctor was excited about a new study on pegasys treatment in 80 patients with my condition that was just published in November.  He gave me a copy to read over while he and the staff at UIC's hematology clinic attempted again to get Blue Cross Blue Shield to accept a prescription for it.  I almost started tearing up as I read the study, because even though there were only 80 patients participating in it (P. Vera is so rare that there will probably never be a large-scale patient study on it) the results were clear: pegasys was successful at treating 80% of those patients, and a few patients even experienced a sort of "remission".  It's hard for me to explain, partly because I don't completely understand it myself, but for a few patients the mutant alleles that accompany/cause the disorder disappeared.

Anyway, after sitting alone in the exam room for over half an hour, reading (first the study and then a crappy book that I brought with me) my doctor comes back and says that they have a month's supply of pegasys for me that they just got from the pharmacy across the street, and because my insurance finally approved it, that it will only cost me $38.74. It's sitting in the fridge right now.  I take my first dose on Monday.  Then I wait a whole week until the next dose.

Now for the Game: How much would a month's supply of pegasys cost me without health insurance?  Seriously, take your best guess.  I knew it was bad, but the actual cost turned out to be almost twice what I was expecting.  It's mind-boggling.  Anyone who thinks that health insurance is not a big deal needs to look at the cost of this medicine and then at my latest paycheck.