# Entry 12: More side-effects start cropping up...

posted 2000-Jul-25
— updated 2000-Jul-26

2000-July-25 : Again, long time since my last update. I'm halfway through week 15, my red blood cells keep dropping, I'm finding myself more and more out of breath, I'm losing more and more weight, my energy level just seriously dropped this week, and (to top it all off) my insurance company now claims that I have to pay 50% for my rebetron from now on. Read on for all the details:

Low Hemoglobin Count. Around June 26th I got more blood work done (CBC [Complete Blood Count, I think] and liver panel) and on June 30th I met with Dr. Muñoz to discuss the results. He was enthusiastic about all numbers except my hemoglobin (red blood cell) count. From my previous (increased) count of 11.7, I was down to 10.7--a pretty large drop. Dr. Muñoz said that this was about as low as he wanted to see it go, and that when I got back from my 2-week trip to Europe (I was leaving in 2 days) he wanted me to immediately get another blood test.

As an aside to that visit, I think I should stress the importance of reviewing your current state and symptoms before you go into an appointment. I went in, Dr. Muñoz asked me how I was feeling and, since I was feeling fine, said "pretty well". This caused him to feel that I was doing alright, to launch into an enthusiastic speech about how well the body can adapt to having less red blood cells, and to generally ask me no further about how I was doing. My advice to myself and you the reader--prepare yourself for the meeting, thinking not just of how you're currently feeling, but what has happened since you last met. Mention everything, and let the doctor determine what's important to note and what is not.

So I went on my trip to Europe. Fabulous, except that I rarely had as much energy/wind to do what I wanted (such as climbing the hills in Scotland, or going out with my cousins in Amsterdam). Furthermore, the trip was strongly scheduled, frequently not leaving enough time for the sleep I needed. On several occasions I had to skip a day-trip because I needed to sleep in past the time for the bus departure. (I was rather proud that I was able to prioritize my health over the pre-arranged expected-to-be-on trips.) Oh, also note that when you're predisposed to getting nauseated by unhealthy foods, you should probably avoid Haggis. I loved the taste, but it started a wicked Scottish brawl in my belly that disabled me most of the night.

Also of note on the trip: it's hard to take Rebetron with you while hopping hotels in Europe. I brought a small cooler with me, and the ice well-survived the plane trips in the overhead compartment. (Nice and cool on the plane.) However, for the rest of the trip it was a fight to keep the medication cool--the minibars in hotels that I hoped on using were never cool enough, almost all the hotels we stayed in required that you order ice to the room (instead of running down the hall to an ice machine as often as necessary), and even then getting ice once-a-day was sometimes not sufficient since I'd open the cooler to find the ice all melted and the thermometer inside reading 60 degrees (as opposed to the target ranged of 34-46 degrees).

Anyway, I returned from the trip, got my bloodwork done on July 18th, (just CBC this time) and 3 days later tracked down a response from Dr. Muñoz's office: my blood count had dropped to 10.5, but he didn't think that this warranted a reduction in ribavirin dosage. I disagree, but need to talk with him before I just start taking one less pill per day.

The lack of red blood cells (or maybe some other aspect of the treatment) is really affecting me:

• I noticed that in conversations I'm more and more frequently messing up phonemes and words (like saying "cheat" instead of "teach", or saying "car mackel" instead of "car make" or "car model") and occasionally I just have to stop trying to say something and regroup. [Some recent conversations have involved me spewing words in a verbal shotgun until I just say "can't...speak...stopping" as a humorous out for the fact that I am having trouble clearly communicating.]
• Some drugs give some people panic attacks; I'm starting to have 'fidget/overwhelmed' attacks. There are times when I'm hungry and someone wants to talk to me and I can't stand still and I can't pay attention and I need to get food and stop talking and I keep looking around and I can't pay attention and I keep shifting in my chair and tiny inputs like someone brushing up against me make me feel so frustrated and I NEED TO EAT AND I CAN'T LISTEN TO YOU. There are times, especially after a shot, when as much as I love my fianceé Lisa I cannot hold her hand or have her hold my arm as we walk because it makes me feel all off-balance and just little inputs like that make me feel the need to just stop everything, stand very still, and walk on under my own control.
• I can't be certain how much weight I've lost until I get back to St. Louis to the original scale in Dr. DiBisceglie's office, but I suspect it's around 20-25 pounds since the start of the treatment. If my bathroom scale is to be trusted as consistent (and I think it is) then I suddenly lost 3-4 pounds over the past weekend trip to Boulder.
• From the Europe trip, I'm experiencing some sudden hair loss. I don't know if it was the stress of the trip, or the sauna/steam rooms, but where once I had a very thick head of hair I now feel a much-thinned topping. Every time I rub my scalp (shampoo, conditioner, hairbrush, drawing hands through my hair) some hairs come out, and I feel various slightly sore spots. I'm trying not to let this bother me, because it's just vanity and I've been told that any hair loss will re-grow after the treatment ends. Still, this rapid loss in 3 weeks worries me for the coming 8+ months.
• I have been unable to get up in the morning for the last two days. I try and get up after 9-10 hours of sleep, and just can't do it, and lie in bed sleeping and not sleeping for another 2 or 3 hours, and when I get up I feel that if I go into work I'll be too wasted and tired and unable to concentrate to get anything done, and that I'll freak out with everyone talking to me and be unable to focus. I can't tell if this is attributable to low hemoglobin, to the sudden loss in weight, or to some form of depression. (Not getting up felt a lot like the time I was depressed for several weeks in college, but I tend to feel not-unhappy later in the day, whereas in college I was pretty down all day long.) I'm currently trying to set up an appointment with the Dr. to talk about this (though his secretary says he has no time until September, despite asking to meet with me).
• [minor] As I was warned might happen, my thighs are starting to get quite dry and itchy. In fact, my left thigh (which since college has had an odd symptom of lack of feeling in it, possibly related to poor circulation) has become painful in that region and I've decided to stop using it except when I've really run out of sites in my right thigh.

Given all these effects, my father asked me if I have thought of giving it all up. I have, but have definitely decided against it for now. I'm still of the opinion that it'd be worth it to be pretty unhappy for a year if it means conquering this disease, and at this point while I'm pretty physically disfunctional as a person, I'm not persistently miserable as an individual. Plus, hopefully the ribavirin dosage can be dropped with no reduction in the chance of success, and my red blood cells will go back up.

On a happy note, I just spent the weekend in Boulder, CO (elevation over 5,000 feet) with little noticable effect on my breathing abilities. In fact, I was quite pleased to discover that between 11,000 and 12,000 feet I was able to walk 200' up a slight hill and not be gasping for breath at the end. Truly a pleasant surprise.

Finally in this update, the new unresolved saga of the Prescription Insurance:

Since I started the treatment, I've gotten my prescription for the Rebetron filled 6 or more times, from 3 different pharmacies (in 2 states, no less!). Each time, I have paid a $15 co-pay for the very expensive prescription. Last Friday, I went in, asked for the prescription, pulled out a$20 bill and cashier said, "Five-Eighty Twelve". So said the cash register: $580.12 right there on its little screen. I said, "no no, it should be fifteen dollars" and was passed on to the only helpful person on the pharmacy. This assistant (Debbie) called the insurance company, explained the situation to them (and confirmed that on previous occasions they'd only charged my$15) and was put on hold for a long time. Eventually she was told (and relayed to me) that my policy had changed on the 29th of June to a 50% co-pay. Needing the drugs, and needing to get back to work, and paid the amount in hopes of clearing it up later.

That afternoon, I called the insurance company, explained what had happened, and asked what was happening. The person (I should have gotten her name) first confirmed that my policy had not changed. She then found that Rebetron is on the list of 50%-covered drugs, and surmised that perhaps it had just been moved there. Trying to get more information, I asked, "Can you check to see whether that's what happened?".

She asked, "What? Whether what just happened?"

"Whether or not it was just transferred onto the other list."

"That is what happened."

"I'm sorry, I thought you just said you thought that's what might have happened, and I was wondering if you could check to see whether or not that's the case."

(miffed) "Sir, that *IS* what just happened. It was just transferred over on the 29th of June."

(frustrated) "Uhm...OK. Can you please find out why it happened?"

At this point she put me on hold for half an hour, came back and said "just one more minute", put me on hold for 15 minutes, and came back to tell me (contradicting her earlier assertions) that Rebetron has ALWAYS been on the list of 50%-pay drugs. That she was SUPPOSED to file a claim adjustment to make me pay full price for all previous prescriptions, but that she wouldn't. That I COULD ask the pharmacy why they charged my $15 before, but that they would then find out they had mischarged me and they would charge me for all the previous occurrences. So (she said) DON'T ask them. OK? Do you understand? Don't look into this further. I said I understood, felt relieved that I had just avoided paying$2,000-$3,000 in fines. And then I remembered that someone at the insurance company had told Debbie at the CVS "June 29th", a specific date when SOMETHING occurred. And I realized that if I left the situation like this, I'm going to lose out on an upcoming$4,000-$5,000. And I realized that the insurance agent I spoke to lied once to save herself some work, and then completely contradicted herself later without any qualm. What to do...look into it and risk losing$2,000-$3,000 in fines, but maybe save$4,000-$5,000, or leave it as is and lose$4,000-$5,000? The right answer is to get the "Insurance Whiz" Lena at Dr. DiBisceglie's office to look into it. I just talked to her, she spent a long time getting all the facts from me, taking a sincere interest, and said that she's on it, she'll look into my insurance plan and its benefits, she'll keep me updated, and if nothing else she'll research alternative possibilities (like mail-order) which may save a lot of money, if the insurance company goes for it. So...that's it for now. I'll try and write updates in a more timely fashion from now on. I've really found the spots on my leg where I can do the shot with no pain whatsoever (even without Advil) but unfortunately there are only 2 (maybe 3) and so I have to use other, slightly painful sites to let the good ones rest and be available for the times when I foolishly forget my Advil. If ya wanna know where they are, send me an email and I'll find a way of describing them. Update, July 26th: Lena just called me back and said that further investigation reveals that my plan does indeed only cover 50% of the cost of the medication, and that it was a mistake for me to only get it for$15. (Thankfully, I'm not going to be charged, however.) Lena also noted (as I myself had thought) that the price I paid was exceptionally low--typically a 1 month supply of Rebetron ranges from $1,300 to$1,600, yet I only paid half of less than $1,200. I'm afraid that it will be more than$600/month from now on. :(

 Anonymous 10:58AM ET2000-Jul-26 Gavin Have you contacted Scherling(you know, the makers of rebetron.) They have a program called "the committment to care" program where they supply people with their needed meds free of charge, or help out alot. Sounds like the side effects get worse over time. I was hoping to be one of the few that breezes through with nothing. I'm on my 3rd shot,the pills make me alittle nauseous, but so far thats it. Keep up the journal, its great of you! Gavin Kistner 12:16PM ET2000-Jul-26 I haven't...in truth, the added cost is not unmanageable. It is just so much money that I had hoped not have to pay it. Anonymous 08:09PM ET2000-Jul-31 Hi Gavin,I really appreciate you taking the time to update this journal. I have found your web site very informative. I check regularly to see if you have an update. I am completing my third week of treatment, so far so good. Can't really complain, a little tired that's about it.I understand that there are tests done after three months that will tell you if the treatment is working, if not, treatment is discontinued. Have you had the tests yet?reallyon Gavin Kistner 11:21AM ET2000-Aug-03 As I understand it, there is a blood test for the HCV at 6 months to determine whether or not the treatment is at all effective, and whether or not it's worth continuing.I have also heard that some doctors do a 3-month test, but (to my knowledge) this is never used to decide whether or not to continue treatment.My doctors said they don't see much point in getting a blood test when you're going to ignore the results, and I agree. Further, while it would be fantastic for my morale to take this test and find that it is working, it would be devestating to hear, "Well, it looks like nothing has changed, but keep up the treatment for 3 more months and cross your fingers." I firmly believe that a positive attitude is key to beating both the side-effects and the disease, and so I decided not to risk hearing bad news. Anonymous 02:50PM ET2000-Aug-17 I am a sustained responder who took rebetrol for 1 year. My initial viral load was 12 million copies per ml. At three months into treatment it dropped to 250,000 per ml. At the end of treatment it was undetectable at less that 2000 copies per ml. At one year after treament it was undetectable at less that 100 copies per ml. During my year of treatment I experienced the worst depression I have ever felt. At nine months into treatment I almost quit. You must cling to a hopeful and determined attitude and give the treatment the best chance to work. Success and a sustained response is worth its weight in gold. Hang in there and good luck. Anonymous 05:02PM ET2000-Aug-23 Its so wonderful to hear that it has really worked for someone! I am only into my 5th week and am very hopeful. No really bad side effects yet . Hang in there Gavin, and please keep writing, I check your site all the time. Actually I've had some trouble getting your site to come up lately. I was glad to see it today.Hope you are doing well... Pat 04:08PM ET2000-Aug-25 I started Rebetron treatment on 6-15. I get nauseated now and then. I am extremely tired and out of breath. The up side of that is I can't enjoy smoking now, so I am using the patch to quit. Too out of breath. The depression gets bad, too, but I am determined to continue. My mind and memory is bad now. I call the Ribavirin "a lobatomy in pill form." Gavin Kistner 04:21PM ET2000-Aug-25 I apologize for not making more updates (tired and listless, ya know?). Tonight I hope to add an entry with the results of my most recent blood test and doctor visit. Gavin Kistner 04:26PM ET2000-Aug-25 Pat--out of curiosity, what's your hemoglobin count at? I'm happy to hear that it's forcing you to quit smoking, but I'm so sorry that it's forcing you to do so now. That must be really hard!I totally know what you mean about the 'lobatamy pill'--I'm so addle-brained now that I just sit back and amuse myself in conversations. I've started just not caring what words I use, in the hopes that it will become clear. Though when I tell my fiancée, "I think we should leave the elevator lid closed" it isn't really apparent that I mean the toilet. (I have no idea why my brain chose the word 'elevator'...it's little surprises like that which help me to laugh at this.)More in my update tonight. Anonymous 12:08PM ET2000-Sep-05 HI GAVIN! WHAT HAPPENED TO YOUR UPDATE? I HOPE YOUR DOING OK AND JUST BUSY! SO PAT STARTED IN JUNE AND I STARTED IN JULY. EVERYTHING IN MY BLOOD WORK IS DROPPING BUT MOSTLY MY WHITE BLOOD COUNT IS REALLY TAKING A HIT FROM 4.3 TO 2.4 . THE PILLS DON'T MAKE ME AS NAUSEOUS AS THEY USED TO BUT THE SHOTS SEEM TO KICK IN AT ABOUT 6 HOURS AFTER INJECTION AND BOTHER ME FOR ABOUT 12 HOURS AFTER . MY HGB STARTED AT 14.7 AND IS DOWN TO 12.5 .MY ENZYMES ARE IN THE HIGH NORMAL RANGE NOW.I WOULD BE INTERESTED IN COMPARING ALL YOUR BLOOD WORK TO MINE AND ALSO TO PATS(IF SHE POSTS AGAIN) SINCE OUR TREATMENTS BEGAN SO CLOSE TOGETHER. GUESS WHAT GAVIN, I,M IN ST LOUIS TOO! HECK OF A GAME LAST NIGHT WASN'T IT!!! HOPE TO READ A NEW MESSAGE SOON. RENE Anonymous 12:11PM ET2000-Sep-05 Opps, sorry about the caps lock, I'm not trying to scream, really. I hate it when that happens...Rene Dain Kistner 02:36PM ET2000-Sep-05 Yeah...get with the updates, bro! :P Anonymous 08:04PM ET2000-Sep-05 I am another person starting treatment in 3 days, and I await with dreaded anticipation. I don't care aboutthe shots (should I?!), more the side effects and myability to function at work AND with my 2 young kids.I am quite scared. I sincerely appreciate your openand honest attitude, I find your journal entries veryhuman, many thanks. Wish me luck. I am startingon pegylated interferon and ribaviran (one benefitof a clinical trial - the meds are free.....). Are youstill going to work?? Gavin Kistner 08:55PM ET2000-Sep-05 Again, my apologies for not getting the updates out as often as I would like. The next entry is on line. I haven't actually been tracking my liver enzymes, since every test has resulted in them saying that they looked 'just slightly elevated'. Rene, I like your idea of putting all the medical data in one spot...once I get organized enough and get real copies of the tests I'll add that as a page, and solicit others' numbers.8pm Anonymous--no, in my opinion, you shouldn't worry about the shots at all. I took off work the first month or so (because I set it up that way, but in the end didn't really need to have). I didn't have my work seriously affected until 4 months in, and after about 3 weeks I'm back to being able to work full time. Then again, my work is not physically stressful at all...your mileage may vary. Good luck! (BTW...is the peg interferon the 1-shot-per-week stuff? Am I right in thinking it provides about the same success rate?) Carl Matthews 10:35AM ET2002-May-28 I have been on treatment since october 2000, almost 2 years! I can relate. I do ot discuss in forums, but thought someone may be helped. I take 2 shots per week now (150ug/.5 ml or 300ug per 1ml). I had been on five 5 200mg ribavarin caps per day!...Dr. Office just called me and said to cease Rebetrol (ribavarin) because my hemoglobin was 9.6!!...well ...what a ride!I concur w/ all the side effect issues. I recently married in Oct 2001. My wife has been a great help. Low stress people is the key here!...I had to quit a job I loved, too much stress ...but got a better job paying more \$ w/ less stress and effort!...a blessing... wish you all success. I hope to end treatment successfully in November this year. Hang in there!