Newbie--Just started Peg/Riba Treatment

[way]

Hello-I just started tx last Tues. Before injecting the interferon, when I read about the side effects I guess I thought they didn't sound that bad OR that I wouldn't get any of them. I didn't even pre-medicate. I couldn't believe how bad it really was. I went through 8 hrs. of non-stop shivering and every part of my body hurt. I was too weak to even pick up a water bottle. Every minute seemed like an hour. I've been reading this site for several days to see if someone else would describe how it effected them. Now I re-read ALL of the literature I was given and it does say that the side effects lessen after three weeks or so... PLEASE CONFIRM THIS.
Anyway my stats are 129,000 viral load. Genotype 2b. Grade 2. Stage 1.
I'm taking 180/mg pegalated interferon every week and 1000mg ribaviron/day. I don't even know what to expect with the ribaviron I don't think I have enough of that in my system to mess with me yet.
Does anybody know what length of tx I'm in for. I think I could do 12 weeks. I think my doc. has ordered 48 wks. I guess that will be determined by my labs? Most of you say it's best to have numbers checked after 4 wks of tx but my Doc. has orderd labs for 3 wks after first dose.  This is some scary stuff.  
Does everybody pre-medicate before taking the shot of interferon? What is best to use? And when is the optimum time to take it. My hell started exactly three and a half hours after dosing--so if I took 800 mg of motrin along with the dose then it would be wearing off in just about an or or so after all hell breaks loose.

[way]

When I recieved the medication I had to go to a teaching class and watch a video about how to inject. An RN was there to answer questions and watch me give myself the first dose. They had a freebie shoulder bag full of stuff like a "days of the week" pill box, a super lightweight squeeze water bottle, a coldpack eyemask, a travel drugkit w/coldpack, a preg test AND a BUTT LOAD of literature and leaflets about the two drugs. I didn't read ANY of it BEFORE. BUT after my first dose I read EVERY word. And thats where it said about the three weeks thing. It may have said the side effects are more severe for the first three weeks.

It was describing some of the mental symptoms... depression- thought about hurting yourself and thoughts about hurting others. And one of the other papers described it as feeling suicidal and thoughts about homicide!!!!!!!!OMG
Thanks for responding I will check back tomorrow.

[jmjm530]

Space says: You started this treatment without asking what length of treatment you would be on?
-----------------------------
Space brings up an interesting topic.

Many doctors are retarded communicators. They're either not interested, motivated or won't put aside the time to clearly explain things to their patients.

On a scale of 1-10, I consider myself up near the top in terms of preparation before I walk into a doctor's office. Yet, often I've walked out with instructions, rx's, whatever, totally confused as what next steps are. Dermatologist's seem the worst, spouting off instructions and rx's that even a blood hound couldn't follow.

As to hep c, an intial treatment consultation can be overwhelming, even if the doctor makes an effort to communicate. Overwhelming both in emotional impact as well as information provided. It would nice -- like after a business presentation (and medicine is a business) --  that they would give you a hand out summarizing your diagnosis, plan of action and prognosis, tx length, meds, injection instructions,  but I've never got one.

So, it's up to us. It's up to us to ask questions. Ask for clarification. Ask them what exactly did they say. That is if they're still in the room. Don't know about the rest of people's experiences here, but half the time my doctor's don't even signal they're finished with the consultation. One minute they're with you, then at some self-determined end point they back out of the room and are gone with another patient. Let's face it, you only get so much time with your doctor and that isn't up to you.

Of course, you can call back, and I do. But that can also be a very frustrating and intimidating process.

To be clear, and anyone who has read many of my posts know, I am a strong advocate of people taking control of their own medical treatment. So, yes, the buck does stop with you. And "Way" probably should have asked more about treatment length before leaving the office, but maybe there was just too much else going on.

Anyway, "Way" is asking us now, and hopefully will clarify with the doctor or NP.

Hep C is not an easy disease to get up to speed on. I envy those like Forsee, who have been here months and haven't even treated yet. I knew very little when I walked into my treating doctor's office. By week 2, I knew quite a bit and now a lot more. But, of course, where the information is really useful is not when you're finished with treatment, but before you start.

Sorry for the Sunday morning rant, but I guess I had some time to kill before the Federer vs Nadal French Open match starts.

So Space -- forgive my brain fog, but if I remember correctly, you've begun treatment again? If you're up to it, maybe you'd like to fill us in on how things are going.

-- Jim

[returntosender]

I know that when I first found out I had this disease, I didnt ask and barely listened as I was terrified of hearing something bad.  Ask questions?  Forgettaboutit! I simply picked out the encouraging things from the conversation or constructed the things to be encouraging - ala 3 weeks - and discarded the rest.  I dont think that you are unusual in your approach at all.  

It takes a lot of guts to get in there like Jim and unearth all of the facts about your particular case.  It is certainly good to do, but I dont think its something that someone new would be remotely interested in doing as they are still dealing with the shock of it all. The good thing about doing the hard factfinding is that you will have everything before you to make good decisions about treatment and you will be less likely to waste your time or have your doctor waste it.  Good luck.

[jmjm530]

Return says: It takes a lot of guts to get in there like Jim and unearth all of the facts about your particular case
-----------------
Really good points.

But as to the above, with me I think it was as much fear as guts. As soon as I figured out my odds of clearing the virus (1b, age 59, stage 3) were what I estimated then to be around 40% -- I felt compelled to learn as much as I could to give myself a better shot.

Another advantage I had is that I've known about my condition for many, many years -- like close to 40. So no shock, or even the lingering after-shock so many here have to deal with in the days, months and even the first few years after being diagnosed.

[jmjm530]

Didn't think about that. Hope you have a back-up generator for the drugs in your fridge. Good luck!

-- Jim

[Algernon]

Everyone is different is the mantra BUT I kept a chart (I'm a total nerd, it's on an excel spreadsheet) of my "quality of life" through treatment.  I can say the second half of treatment wasn't as bad as the first but ups and downs bumped all along the way.  The worst for me started from week 3 through about 7--because the anemia set in and that stuff really gives you some perspective on what it means to feel bad.

Be sure that your hemoglobin is monitored often because anemia is a very common problem with treatment.

I always took the Tylenol a hour before each shot and went to bed a few hours after each shot.  That's standard advice to help you with the interferon.

Good luck to you.

[friole]

way - welcome to the rollercoaster.  The standard treatment time for geno 2 is 24 weeks, rarely 12, sometimes 48. About the only way you can do 12 is if you get an undetectible PCR test at 4 weeks - you might request that because it is not standard. Does your doc have much experience in hep C?  I use tylenol if I need to just because the doc said that was okay.  I also bought benedryl which he said to take for the anticipated side effects but have not needed them. My personal experience was that it took 4 weeks to adjust to the meds.  My sides are not bad, but still, the bod went thru a ton of changes.  Other sides didn't hit until about 24 weeks, and at 36 weeks it was rough. But now at 48 weeks (out of 56) I am coasting.

Jim -- in one of Space's more tender moments of openness, he posted his re-start date at 12/5/05
frijole

[Fisheress]

I too am kinda concerned but not freaked out over the hurricane season upon us now.  Being I have only 8 more shots to go, perhaps I won't have to fret about any storms or evacuating.

If I have to leave the coast, I will head up to Lake Travis as we did last year for Rita.  GREAT accomodations at Rogs cousins home up in the hills.  Or perhaps Friole will let me come up there to N. Texas and finish tx w/her!

Headed to the pool while there is still some shade on it.

Good luck Way on your tx, hope all goes well for you and as stated by other, know your treatment, ask your Doc alot of  questions and drink alot of water.

Good luck!
Fisheress

[GoofyDad]

I believe you'll find the post injection symptoms will inded diminish after a few weeks. The body adjusts to the spikes in interferon - there's a medical term for it, but that escapes me at the moment. I've heard 4-8 weeks. In my case they went away almost entirely in about 4 weeks. In fact most weeks I felt BETTER after my shot.

Also, I found it took about 8 hours for the onset of flueville, so early on I moved my injection time (with Doc'ds OK) upto 2:00 pm.

There is actually more than one mechanism at play here to make you feel sh!tty. The initial and most glaring is the post injection symptoms you suffer from now. In a few weeks, you may experience the gradual decline in overall wellness brought on by the ribavarin. That is mostly due to anemia, caused by reductions in your hemoglobin.

A couple most important things right now are to remember your meds and to keep hydrated. And what's up with that silly @zz collapsing water cup? And the freezer mask? Has anyone used that?

[Fisheress]

I did not get all those presents when I started tx!  WHINE!  I would have used the mask due to the fact my head hurts right behind my eyes after taking tylenol pm.  Have had to resort to a frozen bag of peas or cold cucumber slices!

I am feeling all left out now!

[jennkPA]

Hi everyone, I'm new as well.  Well, I've been lurking here for awhile, but I did shot # 5 on Friday.

Anyway, Way, I've found that I've experienced sx intermittently. If you read other posts on this forum, you'll find that most of us do our shots on Friday, so that the sx following can be dealt with over the weekend and not interfere w/ work, etc. I actually started on a Thursday, cause I wanted to do first shot in Dr.'s office (he gave me the option to wait til the next day, but this is what I'm paying him for right!). He said that if I gradually wanted to change my day, I could do it one week at a time.  Like the next week switch to Friday, and if I wanted to the following week switch to Saturday and so forth.

My doc told me to take Motrin (ibuprofin) and Tylenol (acetominophine) intermittently.  Like if I took Tylenol in the am and needed some later, to use Motrin. Don't remember exactly why, I think so neither one could build up substantially? It's definetely overwhelming when they give you all this info at once in the office.  You think you get it while your there so you say, uh huh, uh huh, then you get home and are like, wait...what? I usually don't pretreat, just know exactly when I'm getting a headache. The body aches are  much tougher to predict.  Have had an annoying cough that I'm at a loss about, but as far as anything improving, sx are pretty much still the same after week 5.

[jennkPA]

As far as the optimum time to use the motrin, etc. it's hard to say.  I dont' usually feel sx until Sunday and I do my shot Friday night, though it is at about 1 am since I work til midnight. So maybe just wait until a bit after you do the shot. Water definitely helps too.

[Pdilly]

You know what I think would be helpful to newbies starting tx or others about to start tx is for a list of things that will be helpful.
Example   best to do riba with Yougurt (or whatever)
          Best to do riba earlier than later (due to it keeping people up at night.

Anyway just a thought.

[Pdilly]

Don't the doctors give you a printout of things to do or is it just verbal and then you are left trying to remember everything?I probably will start tx in September and am trying to remember everyones tips.

[jennkPA]

I didn't get any printouts except for those little brochure things which really only tell you how you can get hepc and how to prevent spreading it to those you live with, basic stuff. I would suggest starting a notebook, I wish I had on that first visit to start tx, because everything my doc said really made sense, it's just sooo much at one time to remember. Here you are freaking out about this intense thing you're about to begin and you're supposed to remember a bunch of stuff. Of course you can always call back, my doc has a great nurse/receptionist who can usually help me with questions on the spot or gets back to me quickly. Good luck!

[zzzztime]

sorry to cut in, this kinda fits here. I'm still wondering about infergen sides. everyone talks about how long the sides last after their injections so if I were to start daily infergen injection does that mean I'd never get a break from the sides?

Way - Best of luck to you! You'll get alot of help from the people here.

[cuteus]

way; it is hard to understand anyone starting tx without all the basic information in place, such as length of tx. Since your dr will do a 3 wk test, maybe you can do less tx if you are negative by that time, since you have a low viral load and mild liver damage, but only time will tell. It sounds like you are on Pegasys(the goodie bag gave you away), and it is amazing how people react so differently to the first shot. i had pegasys also, and that first shot on tues afternoon, had no major impact on my life. Nothing to remember. I felt pretty good for the first month and then anemia reared its ugly head. I did have tummy upset and aches and pains but nothing horrible. Same med, different reactions. Some say pegintron has stronger effects, but maybe there are some who don't feel that either.
As for changing the shot day, you do not want to wait 8 days to do your shot, not in the begining of tx, and not without a good reason. Day changing takes a while in some cases. I changed mine from tues to sunday, by changing to monday and then sunday, making it less time between shots, not more!
Someone mentioned it should be in 12 hrs, increments, not sure why, but that is the way I did it. from tues eve, I went to Tues morn, then mon eve, etc, until sunday was the shot day. I never had trouble sleeping, even though I took 3 ribas in the evening, sometimes right before bedtime.
Take whatever analgesic works for you, this is not the time to be stoic!
good luck, new fighters

[jmjm530]

Way says: Now I re-read ALL of the literature I was given and it does say that the side effects lessen after three weeks or so... PLEASE CONFIRM THIS.
-----------------------------------
I think what my doc told me, sums it up best. He said "every shot is different", and my treatment experience confirmed this.

In general, the the first shot or two seems to effect most folks the most, although they didn't effect me that much. Also, it's during the first 2-5 weeks that anemia (from the ribavirin) hits most people. The riba did hit me hard and I ended up taking the rescue drug, Procrit, something you should discuss with your doctor before you become anemic. (The alternatives to taking Procrit if anemic is either to suffer more or to reduce riba dose. The latter may decrease your chance of treatment success.)

Later in treatment, I saw no real pattern. For a while I had bad weeks and very bad weeks (sorry I'm trying to be honest) and occasionally a not so very bad week. Things hit a bottom around week 42 when I cut down on my riba for a week. The last ten weeks or so I had the least side effects of all. Again, every shot is different and everyone reacts differently. Some of us (like "Rocker") report hardly any side effects. Most seem to be able to work full-time with some adjustments. Some can only work part time. And some, like myself, were pretty much house bound and were not able to work.

I found the best way to manage my expectations of treatment was not to have any. Take it one month at a time when things are going well, one week at a time when going not so well, one day at a time when things got very bad. And for those times I felt I couldn't go any longer, I tried to forget entirely about any sort of goal and instead stay completely in the moment and only deal with what was happening.

To your other questions:

Length of treatment: As a geno 2b, standard treatment is 24 weeks so not sure why your doc ordered 48 weeks worth of peg unless for some reason he treats longer than most, or plans on extending treatment if you don't respond quickly based on your week 3 test which is a very good idea. Given your low pre-tx viral load and minimal liver damage (stage 1), you should also discuss with your doctor the option of treating only 12 or 16 weeks (12 for Peg Intron, 16 for Pegasys)if you are non-detectible via a very sensitive blood test by week 4. Studies suggest that those with low pre-tx viral loads who are non-detec at week 4 have comparable success rates with those who treat 24 weeks. My guess is this is what your doctor has in mind with the early 3 week test, but do ask him.


Ribavirin: It tends to hit between weeks 2-5. Hopefully, you will get weekly cbc's (complete blood counts) for the first six weeks or so. If your hemoglobin (hgb) drops below 10 or 11, or if it drops more than two points from baseline within a few weeks, you may be a candidate for the rescue drug, Procrit.

The shots: I took Tylenol I think a half hour before my first two shots. Then I stopped taking it and didn't notice any difference. I was on Pegasys and my major sides peaked around day 3 and 4 most of the time anyway, not right after the shot. You say you get hit hard 3 hours after the shot, so maybe you should medicate a half hour before your shot but keep in mind that timeframe may change as you get more used to the drugs. A lot of folks take the shot around an hour before they go to bed. That way you can sleep through the sides.

All the best and do let us know what your doctor's plan is regarding treatment length and if he plans to modify treatment length based on the week 3 test. Also ask him if he plans a 4 week viral load test also. The 4-week is what some of the studies are based on.

-- Jim

[jmjm530]

Goof: A couple most important things right now are to remember your meds and to keep hydrated. And what's up with that silly @zz collapsing water cup? And the freezer mask? Has anyone used that?
----------
Now that you mention it, I think I got one of those too. I guess the collapsing cup is to help down riba when you're on the road and only have access to rain water. The freezer mask, on the other hand, I suppose would be really food for headaches, and sinus issues. Wish I had thought of using it when I was on treatment :) but maybe someone else can try it and report back.

Hope this finds you well.

-- Jim

[zzzztime]

thanks for the response. I have read magnums posts, they kind of scared me but he was on very high doses. I don't know what my dose would be only that its daily shots of infergen and daily riba. Stats
46y/o female
hepc 26 years
geno 1a vl 27,000,000
bx HAI 8 -91/16 I think thats like stage 2
I have never had tx. My doc treats very aggresively and this his standard. I'm not sure it that just because of the geno type and viral load or if he treats everyone like this

[jmjm530]

I agree that Magnum is not a good comparison because of the higher doses he took.

Is your doctor a liver specialist (hepatologist)? Have you talked to any other liver specialists about treatment?

I ask because Infergen seems a very agressive approach for a first time treater who does not have significant liver damage. None of here are doctors, but personally I'd question that approach and maybe talk to one or two other specialists before committing.

I'd also discuss/question the choice of drugs with your current doctor and inquire about dosage, how many shots per week, and what success rate he's getting with Infergen -- as well as side effects of Infergen versus pegalayted interferon in his practice.

I'm not saying don't do Infergen, but if it were me, I'd want to have confidence in both my doc and his credentials, and in addition let him convince me (anecdotally or not) that the risks/reward of Infergen make it a better choice than standard treatment, or even adopting a watch-and-wait attitude.

Good luck!

-- Jim

[jmjm530]

May be wrong, but don't believe Infergen was ever "old school" in the sense that it was commonly used prior to the pegs. But do agree that it is usually used only with non-responders. Maybe you're thinking of the older non-pegalayted interferon that was administered 3X per week prior to Pegasys and Peg Intron?

[GoofyDad]

I read speculation somewhere that the Infergen makers don't have the marketing clout to compete head to head with the Pegs. Here is some info from Bill on Infergen.

Consensus interferon, also known as CIFN, interferon alfacon-1, as well as the brand name Infergen, is the only FDA approved bio-optimized interferon labeled for use for HCV non-responders. All four of those names can be used interchangeably (for our purposes, anyway)

By bio-optimized, I believe the term “synthetic interferon” can be used. The concept of Infergen is that the most effective qualities of Pegasys and Peg-intron have purportedly been combined to build a more efficient Rx. Keep in mind that because Infergen has not been pegylated yet, most doctors dose the injections daily as opposed to weekly. Additionally, Infergen has not yet been officially approved for combo use with ribavirin, although most insurance seem to paying. Here is the address for Infergen prescribing info:

http://www.infergen.com/pdf/infergen_pi.pdf

[You] can also call 1-877-361-2719 for technical advise from Valeant pharmaceuticals.

[GoofyDad]

Setting aside that ice on the sinusses would probably accentuate any headache in that region, that mask is simply too uh 'Goofy' to be wearing, even in private.

[zzzztime]

I'm the one that see's Dr. David Van Theil. If I can ever get in to see him! I belive he knows what he is doing he seems very, very knowledgable in the area. I will bring a list of ?'s with me when I see him, thanks for helping me with that list. His nurse said there are no studies to back up his use of infergen, except his own (whatever that means) she said he is just very aggresive (aggressive) and he is getting good results, although they do have a high number of drop out? I guess my question is not the doctors choice, I would guess he's on to something. My concern is if I will be able to handle it. I know he also believe's in treating everyone! no mater what stage. He is a big transplant doc and like someone said in a post earlier maybe after seeing so many transplants its made him more aggresive (aggressive).

[zzzztime]

still wondering also if anybody knows if daily shots means no break in sides? Before I knew aboout the infergen I had decided to start tx. and try to arrange the shots so I could keep working. I'm a little worried about feeling like **** every day.

[way]

Thank you all for the very helpful info. It really means alot to me for you all to take the time to help me understand this better.
I found out about having this disease from having some routine blood work done just a couple of months ago. Liver enzymes came back high. So I got more tests (hep panel) and that was positive for the HepC autobodys. So then more tests to determine VL. This was all with my primary doc and the whole thing was moving way too slow for me. I had to wait a month between labs and Dr. appts. for him to explain the labs etc... I KNEW I WANTED THE TX.

Yeah my Hepatologist didn't take the time to explain alot about the treatment to me, but that might have been my fault. At that time the treatment length didn't matter-- I knew what the treatment of choice was and that I wanted to get going on it ASAP. So first he ordered test for genotyping--so more waiting. (I was SO worried that my genotype would be 1 and very relieved to know it is 2b)I had my liver biopsy 2 days after my next appt. and then he set me up for the pharmacy to call and get me in. I called them and went in a few days later. That part I should have planned cuz now I'll have to do my shot a day later each week so I'll eventually be on Fri.
They are fed ex'ing my shots to me once a month.
I will discuss treatment length on my next appt.

My biopsy said: Chronic HepC with mild activity and slight fibrosis-grade2 stage1- No significant steatosis- No hepatocellular iron deposition.
Considering that my VL is low (129000)Can I assume that I haven't had this very long??

[tulsatime]

viral load does not have anything to do with how long you have had it. Me and my sister have had it over 20 yrs. Mine is almost 4 million, and hers is 64,000. Take care

[friole]

fish girl, you are more than welcome to this West Texas town if a hurricane hits.  We can line up them riba with water chasers and have a ball.  Truly, this is almost embarrassing, but we cheer when there is a gulf coast hurricane because it means we might actually get some rain blown in the 300 miles.  It has been dry as a bone here with temps in the 100's almost every day.

zzz - still seems to me that the infergen is an awfully aggressive way to start.  I would be concerned about his "high drop out rate"  If you can't handle infergen and decide to go to the pegalyted interferons, it sounds like you will have to stop treatment long enough to find another doctor. I would do a lot of studying on infergen befor I started. I like your focus that you want to tx now and get it done.  I am G1, S1 and felt the same way.
frijole

[cuteus]

read about changing your shot day more thoroughly, you don't want to wait 8 days to do the next shot, not at the start of tx. Pegintron does not stay in the body as long as Pegasys according to some studies, I think it is 5-6 days. You don't want to extend the time without interferon in your blood. you might have to change your shot to Wednesday, then Tues, etc until you get to Friday.

[way]

I am on Pegasys/ribaviron.
I went in today to see my Hepatologist as a walk in. I asked him about changing the shot day and he said to do it.
I am on 24 weeks Tx and he said he won't be checking my viral load until 12 weeks-I asked why and he said my insurance (Blue Cross Blue Sheild) won't cover it. He said the 3 wk check is for the blood count.
This time I asked him quite a few other questions and he stopped me and asked if I had ever been diagnosed as Bi-Polar. He then reminded me that he was a specialist and most of my side effect concerns should be directed to my PCP.

[rifleman]

You need a 4 week pcr, so I recommend that you demand one.  The squeaky wheel gets the grease. Geno 2's with your numbers can svr with 12 weeks pegintron or 16 weeks pegasys IF they clear by week 4.  I know this b/c I was in the same boat.  I was a 2b with the same liver numbers as you, and my initial vl was much higher than yours (1.3 million).  I cleared before 4 weeks and did 12 weeks pegintron and 1200 riba.  It worked for me and I no longer have to deal with HCV.  You really need to know if you are clear at 4 weeks.   What if the sides become too much for you to bear at week 16 or 17??  If you were clear at 4 weeks, you would rest much easier stopping tx.  
Also, even if the sides aren't too bad, if you are clear at 4 weeks you can make an educated decision to stop tx at 16 weeks if you want.
DJL

[way]

Ok I have a dr.visit at 4 wks and I'll squeak.

[Minkey]

I'm on week 33/48 with a genotype 1a.

The effects of the Peg will diminish after a few weeks.  I take a Tylenol about an hour before my shot which I take on Sunday at 6 PM.  In bed by 9 PM.  This helps enormously.

Regarding the Ribo; I take that in the morning at 6 AM and in the evening at 6 PM.  After I take the Ribo I do about 30 minutes of cardio exercise. Brisk walk, Stairmaster or treadmill.  As soon as I started this exercise regimen my sleep problems pretty much went away.  In addition my weight dropped from 185 to 165.  There are more and more studies that show that in many patients the lower their body fat is the better the chances of eradication of the virus are.  I get severe tension headaches from the Ribo which I take pain medication for. It is important to stay hydrated and drink as much water as you can.  It's a pain but it does help.

After 6 months my Hgb dropped to 9.6.  My baseline was 16.0.  The VA started me on ProCrit.  After 2 weeks I felt great with a Hgb of 10.8 and I expect to continue with weekly shots of ProCrit until treatment ends. So far I feel very human and my viral load has been non-detectable since week 16.

Tips:

1. Stay focused on the therapy and beleve in it.

2. Exercise.

3. Stay hydrated.

4. Medicate for side effects before you take your doses.

5. Be kind to your family. Therapy lasts a year but the way you treat your loved ones will be remembered for a much longer time.

Mike