6th shot /flu-shot

hey all, iam still doing great just did the big 6 today..also on Keflex for my abcess (abscess) tooth, heck that hurt more then sx on the injections and pills LOl.. But iam getting better..Also gotta get injection for flu this coming wed.. daggone seems like all i do is give myself shots and pills..lol.. guess we all know taht feeling.. Well Iam praying all is wellw ith everyone and May GOD bless yall..  

[JodyLynn]

Had my flu shot today.....shot didnt hurt at all but my arm does lol.

[alagirl]

need to get mine, mom has already called about it.  twice.

[alagirl]

heck that hurt more then sx on the injections and pills LOl
---------------------------------------------------

At least somebody is having sex.  I guess I'm out of that game for a while.  "Hi, I just found out I have hcv, wanna #*$#? - oops, don't pull my hair, my wig comes off," I'm not seeing that as a very popular opener. lol

[jmjm530]

First, no reason to disclose if condoms are used. Second, according to at least one woman's report, most guys are too horny to care. And third, being bald hasn't stopped Britney from having sex.

-- Jim

[alagirl]

Glad I hadn't replaced the keyboard yet. LOLOL

[jmjm530]

On a more serious note, I read  one of your earlier posts last night where you stated that you got Hep C from being raped. Can't think of a worse way to get it, for all the obvious reasons. A couple of things came to mind regarding your treatment.

First, how was your diagnosis of "acute" made. Was it made based on circumstantial (the rape) and then a positive blood test? Or did you have a symptomatic acute phase -- jaundice, dark urine, fever, white stools, etc? And who made the diagnosis. Was it made by a liver specialist (hepatologist)? A family doctor? A GI? Someone with a lot of experience in treating Hep C?

I ask these questions because treating acute's can be different from treating chronic's, like most of us here. In fact, some of the protocol's are shortened -- 24 weeks -- and some don't even include ribavirin, which may be very relevant in your case. Because treating acute's are both different, and uncommon -- most people don't catch it in the acute stage -- it's probably best for an acute to be evaluated and treated by a hepatologist (liver specialist), as they have more experience to draw on, as well as being more up to date on current literature.

The other issue, is how certain are they that you are acute?

For example, if you didn't have a symptomatic acute stage, is it possible that the rape and testing positive for the virus were unrelated? If so, that would make you chronic, not acute. I say this because around 15% of those infected with HCV don't have any of the obvious risk factors such as IV drug use, transfusions, etc. And, as you know, Hep C can be totally asymptomatic.

So, when you put it all together -- if you are indeed acute, then you might get away with either fewer weeks of treatment and/or no ribavirin. But if you're not acute, treating for fewer weeks and/or without ribavirin would probably not clear the virus.

Whatever you do, I think it's critical in your case to minimally have a very sensitive week 4 viral load test. (Test taken the day before your fifth injection). In my case, and at least one other here, we had viral load tests every week until undetectible. What this does is tell you the rate the drugs are working which can then be translated into SVR projections for "x" amount of weeks of treatment. Very useful, especially if you end up in a situation where you have to make decisions regarding shortening tx or reducing meds.

I would also suggest, that if you're not already, to at least have one consultation with a liver specialist (hepatologist). Based on my own research, personal experience, and reading posts here -- I recommend ANYONE treating have at least one consultation with a hepatologist and preferably treat with one. But in your case -- probably/possibly being acute -- I think it even more important.

BTW viral load tests come in all varieties. The ones you want from here on out are the most sensitive ones. If your insurance covers Quest Laboratories, then ask your doctor for the "Heptimax" test. It goes down to 5 IU/ml. If not covered, LabCorp also has a couple of excellent tests also very sensitive. You do not want one of the garden variety tests that go down to only 600 IU/ml (these are often given pre treatment and unfortunatly some docs give them during treatment).

All the best,

-- Jim

[alagirl]

I got very lucky in terms of isolating my exposure.  I did not know that sex has a lower transmission rate than other routes for HCV.  I had a partner last year who I had reason to be concerned about in terms of fidelity.  The relationship ended in September.  Due to my anemia, I am prone to catching things more easily so I screened quarterly for Hep and HIV.  (I have had the Hep A&B vaccinations).

I had my last negative test on 6-21 of this year.  Then I was raped on 7-1.  I started to feel badly after about three weeks with flu like symptoms and just to be safe anyway, I went in for another HIV and Hep screen at the end of August.  My rapist is an IV drug user.  I was afraid I might have HIV due to feeling fluey.  This time my test came out positive for HCV.  I am being treated by a gastro at the center for colon and digestive disease but they have a large hcv base and he is well recommended.  I do want to go ahead and do the regular protocol because of my genotype.

He did diagnose me as acute because my liver enzymes, formerly extremely,low, went up following exposure.  I am, again, lucky to have a huge hx of bloodwork going back four years so I guess I am one of the very few people who has so much info on previous enzyme and renal levels and so much additional testing,  I had problems voiding urine and had dark urine.  I take diuretics.  This issue seems to be clearing.  I had and still have pain in under my ribcage as I had when I had problems with bile leaking from my gall bladder.  Don't know what that's all about.  They did a catscan to check prior liver tumors Friday, then the radiologist called quickly to get my former reports.  I'm hoping he was just not busy Friday LOL.  My other biggest symptoms were recalcitrant nausea of a much different type than normal and exhaustion.  Some of these symptoms seem to be clearing somewhat.

If somehow I became infected in some other manner, it can't have been too much before 6-21.  I have another negative test in April of this year, and yet another in December of last year.  So I at least know the maximum amount of time it is possible for me to have had this.

I think that one of the things that may guide treatment is whether and how quickly I become UND.  Also, the possibility that an autoimmune problem may be responsible for my anemia is another scary issue that I hope doesn't rear its ugly head here.  So, lots of interesting stuff to consider.  We'll see how it goes.

Also, I am obviously not out of the woods for HIV.  Plant to test again today, again at six months, and again at 12 months.  Joy.

[alagirl]

Oh yeah, and fever, etc too.  Its been fun. lol

Actually, I had just started to feel a little better two days ago except for the persistent pain in upper abdomen and now the treatment.  Oh well.  I think I can deal with it.  I am pretty committed to getting through it and then on with the rest of my life ;)

[jmjm530]

That's excellent that you're able to pinpoint the exposure in what seems like such a conclusive manner. And going "full protocol" for geno 1's certainly appears to be an option as well.

That said, being acute does change the strategy somewhat, especially in your case where you're starting treatment out with a red cell disorder.

For most of us, it's critical that we stay on full dose drugs, at least in the beginning. In your case, however, it may only be critical that you stay on full-dose Peg. So, knowing this, you def don't want to risk being pulled off treatment from anemia. In other words, err on the side of caution with your riba.

Anyway, you should do just great being an acute and you realize that your odds of SVR (cure) are way, way up there, compared to us chronic's. Sounds like you're happy with your team, but believe me, you have to be on top of them -- any team for that matter. Did they tell you when you'll be tested for viral load? Again, if I were you, I'd ask for WEEKLY tests, but wouldn't settle for anything less than a week 4 test and a very sensitive one at that. Do not leave it up to chance, ask them point blank when they will test and what test they will use.

All the best,

-- Jim

[Proactive]

Hope you are having a nice day...beautiful day here, I'd say leaves are right about peak....Question, I've read this a few times, or similar (very important the first 12 weeks)
"For most of us, it's critical that we stay on full dose drugs, at least in the beginning." And have not been able to find much in the way of reference as to importance of adherance in the first 12 weeks versus any less importance on adherance later on in treatment (aside from the obvious, sooner you clear, the better the chances of svr) So I am wondering where the caveat "especially" comes from?
this is the only reference I've found (interesting article)
http://hepmon.com/view/?id=115
"It is particularly important to maintain the appropriate ribavirin dosage during the first 12 weeks of therapy in order to decide to continue or stop HCV combination therapy based on the early virologic response. "

[alagirl]

I have to call Mon for the lab sched but I do know that they do the next viral load next week immediately before my second shot.  I am going to pull very frequent cbc's.  I agree with you, actually, on the fact that I may be able to shorten the treatment, and unlike proactive, I have seen research espousing this for acutes, or rather, that it is possible at time to do 12 weeks of combo.
I would feel safer doing more if I am tolerating it though.  Plus, this assumes that I will be UND.  There is a very small percentage of acute in my geno who don't.

But.  I am not willing to forego the riba during at least during the first 12 weeks no matter how bad it gets.  Them pulling me off of tx during the first 12 weeks is not an option.  I'll do whatever it takes to stay on it.  Stay on top of my blood count, etc.

I am going to say something very condescending here.  Like that's a switch or something.  I view doctors as very specialized and highly educated contract labor.  And you can always switch contractors.  

[jmjm530]

Pro,

Tx compliance is one of the few things we can control in treatment -- or at least attempt to control. There is something called the 80/80 rule that says you should take 80 per cent of your meds 80 per cent of the time; but most liver specialists will urge you to be 100 per cent compliant, unless medically contraindicated.

I think you understand I wasn't recommending you don't take riba. Just mentioned that as a "safety net" that might work in your case, if sh*t hits the fan, and you become in danger of being pulled off tx. BTW I admire your strong, positive attitude of " "do what it takes". I was like that when I started, in spades. Almost a bit cavalier, as you too have a tinge of that. Just let me say that if and when -- and hopefully it won't -- the sh*t hits the fan -- there isn't much you can do about it. It's not a matter of will or determination. Trust me. I ended up in the ER at week 2, and did have to be pulled off riba for a week. At that point, I would have done anything to feel better.

Ala,

As to the tests. You don't have to have blood drawn for the viral load test immediatly before the injection, but there is a reason you need to draw it at least the day before. That's because that would be when the meds in your system is at the lowest and therefore the viral load reading would be the most reliable, in terms of response. For example, you might get an UND the day after the shot, but it could be a false UND. Not every treatment center follows this but this is how it's done in the studies and with the more knowledgeable doctors. So, don't let the lab tell you when they will draw blood. You tell them when you want them to draw blood. And make sure they will do a sensitive viral load test, because some centers only draw for viral load at week 12. In your case, that is not very useful.

Yes -- you can always switch -- and indeed, I switched liver specialists at week 2. Thing is sometimes the switch is too late. Like for example, when you find out the 4 week viral load test they said they'd give you wasn't given. Now you've missed that window.

-- Jim

-

[jmjm530]

The second paragraph was addressed to "Ala", not "Pro". Sorry about that.

[jmjm530]

Just to clarify, it's only important you draw blood the day before the injection if it's a viral load test. CBCs and other testing can be done at any time in the cycle, unless your doc has a preference because of the epo shots. Mine didn't but some might.

And again -- not to sound like a broken record, but I know this is new to you --  I can't tell you how many here have posted that they *assume* they were going to have a viral load test when they had their blood drawn, only to find out later that indeed all that was done was a metabolic panel and a CBC.

In treatment, do not assume anything. Do not leave anything to chance. Always ask in advance what tests they will be doing at a given blood draw, and if it's a viral load test, ask WHAT viral load test they are giving. Also, ask the sensitivity of those tests. Then double check at the draw, that what you are told is what is being written down on the requistion  form. Looking at the requisition form is the only way you will know for sure, because that is what the lab will use to determine which tests to run. Trust me, the lab cannot read your mind :) This advice is borne from a lot experience in medical f*ckups, both had personally and observed here with others. And it applies not just to blood draws, but to just about anything in medical treatment.

-- Jim

[alagirl]

They stressed they HAD to draw a viral load before I took the second job - job?  wtf?  ROFL!  I am SO already having stup effects from the riba.  It is similar to the severe aphasia I experienced at high levels of topamax.  Hysterical.  Anyway, they said these labs were sacrosanct and had to be done at their lab and were the viral loads.  I will find out which type of viral load test though, and how often they are going to do them.  I know they are going to do this next viral load thursday since I began friday.  I also know they were unhappy with the initial testing I did on my own which was not a quest test.  Now, they didn't say they do quest tests, but they did turn up their nose and say, from now on, all of your viral loads must be done at our lab on the day we specify.  (I had gotten my viral load and genotype type done prior to the appt so as not to hold up treatment).  It was sent to a lab in birmingham by my lab here.  

Now.  I am sure they will pull cbc's and enzymes there too.  They did last time I was there, but I will also be pulling those on my own here so that I can monitor my cbc very closely.  And I did go ahead and pre-dose the epogen (that's the type of procrit I use).  

I am SO happy to have found you guys with all of your experience and info because this is nothing to go through alone.

I remember my first post here.  I didn't even know how to read my blood test...  Didn't even know I needed my viral load and genotype to treat.  My doc was SO impressed when I handed him all the paperwork you guys told me I would need on my first visit with him.  Boy.  Still a lot to learn though I'm afraid.

[alagirl]

Just as an aside, I live in a fairly rural part of Alabama that a lot of people call "meth mountain."  There is a huge amount of IV drug abuse here.  I think the rate of hepc here is possibly higher than in some other places.  Higher education is also not at a premium in this area.  With as complex as this treatment can be, I really wonder how some people ever have a prayer of getting through it.

I think of the manner in which many people are noncompliant with antibiotics, using them in a half-axx manner, and with blood pressure meds and the like, and I wonder what the compliance rate is in people self-dosing.  I am extremely disciplined with my meds.  It is second nature to me.  I would have high bp, but I take a very effective pill every morning, works excellent.  Easy to work my riba into my morning meds, and so the only new thing is the nightly.  Many times at night I take 1/2 xanax to sleep though, so I can work those in that way.

[jmjm530]

Ala:  I will find out which type of viral load test though, and how often they are going to do them.  I know they are going to do this next viral load thursday since I began friday.  
-------------
Trust me. You don't *know* anything when it comes to these larger centers, no matter what their reputation. Just make sure you get someone on the phone *in advance* and find out the name of the viral load test they will be giving you , its sensitivity and on what dates. And don't be surprised if the person you talk to doesn't know. Invariably, they will have to check it out and get back to you, and invariably they will make it seem like it's a real chore for them. That's your cue not to back off but to push on :) As to your riba schedule, you want to take the riba preferably with meals that have a decent amount of fat in them. That usually rules out bedtime dosing, unless you pig out before lights out.

-- Jim

[jmjm530]

Oh, yeah. I expect you to post the name of the viral load tests, their sensitivity and your draw dates next week. That's an assignment. LOL.

[Proactive]

the article I posted above mentions the 80/80 rule and I've read it here as well...Unless a medical emergency(docs orders etc.) happened, I could not imagine not being 100% complient..why bother putting ourselves through this torture and not take all the drugs...My NP thinks this is a huge problem and commonly runs into it, people just up and stop taking the drugs for a period of time...We actually discussed the subject last month--killing time at my monthly (G) She says patients will nonchalantly(?) mention, "oh by the way, I skipped 2 weeks of riba" or something of that nature ..absolutely incredible....She believes svr rates would be much higher with supervised dosing, obviously not practical, but she figures it would make a big difference.
1264 more riba to go....;^)

[alagirl]

Trust me. You don't *know* anything when it comes to these larger centers, no matter what their reputation.
---------------------------

So very true.  I have, in medicine, more than once had a big reputable firm totally fubar something and then gotten incredible educated service from some small unknown place.  It really does not necessarily follow that because you are going somewhere that is supposed to have its sh*t together that it necessarily will.  

I do solemnly swear that I am going to report back to the board monday with the:

name of the viral test load
frequency
sensitivity

:))

p.s. I am prone to a little fat snack before bedtime.  So sue me... But, if I go to bed too late, that does rule out the riba before bed that night, I don't want to get more than 12 hours apart.  

[jmjm530]

Proactive,

I think you will find here at MH, folks who are more dilligent than average in terms of taking their meds. The fact that there here at all, looking for answers and seeking support, shows somthing about their motivation. I'm sure that in the overall Hep C treating population, there are many that take their meds with about the same dilligence as I take my vitamins -- which is when and if I remember.

Ala,

Because of the very long half life of riba, the timing of the dosing really doesn't matter unless you're taking more than 2000mg./day which hardly anyone here is. What is important is that you take your full dose each day (let's define that as when you're awake) and you take it with at least a moderate amount of fat.

When I treated, I took my riba with breakfast (between 10am - 12PM) and lunch/dinner (between 4PM-6PM). So that means on some days, my riba doses were only 4 hours apart. It also means that on some days there may have been as much as 18 hours between doses. I've run this by both my liver specialist and a researcher in the field. Just get the correct amount of riba down the hatch every day with adequate fat. Don't worry about the rest.

-- Jim

[alagirl]

Very good to know on the half life.  I took both my doses yesterday.  Didn't seem to be a prob.  They were several hours apart though.  

[jmjm530]

In fact, my doc said I could take the entire daily dose (1200 mg/day) in one shot, if I wanted. The effect would still be the same. About a year after he told me that, a study was done on the saturability of ribavirin on dosing more than 2000 mg/day. Based on that study, probably not a good idea to take 1200 mg at one shot, as some may be lost to saturability. But if you wait at least four hours between doses, you should be safe with the amounts we are discussing here. I also don't recommend taking 1200 mg/day in one shot because of the BUZZ. I did it a number of times -- catch up on missed doses -- and it was quite a BUZZ.

-- Jim

[PSP-n-Me]

you DO NOT need to "pig out" prior to taking Riba - a cracker with peanut or slice of cheese is all you need - Some people in here ate bacon every day - Not a good thing to do!

[Proactive]

"Almost a bit cavalier, as you too have a tinge of that." Of course you are correct, probably a defensive mechanism in my case...Every once in awhile I'll slip, and think to myself, "do you realize how much riba you are ingesting, or what will be the consequences down the road"..
I thought Valtod's post about optimism and pessimism, human nature was one of the more interesting I've read in a longtime.....
Anyhow -alagirl, are going to talladaga? I went a few years back...what a blast

[jmjm530]

As many here, I was told to take my ribavirin with MEALS not snacks.  I suppose the reason being that the riba bioavalialibility studies were done with high-fat meals, not snacks; not to mention riba appears to be kinder to the stomach when consumed with an adequate amount of food. That doesn't mean that taking riba with snacks (as described above) isn't OK. Just not optimum IMO. And sometimes, you just don't have the appetite for a meal.

[jmjm530]

Sorry, the "cavalier" comment was intended for "Ala", not you. As stated, I was also quite cavalier starting treatment until the anemia cut my legs out from under me. Yes, Valtod's post was excellent.

-- Jim

[debnevada]

For me, with Dr. Gish, as a proven acute, 12 weeks was not an option.
Initially, he told me 48 weeks.

Once I reached the 24 week mark, he has eased off on the 48 week benchmark and we will "discuss q. 4 weeks".

A lot of the old studies say 12 weeks is the bench for acutes, but more recently, the thinking is more is better.

[alagirl]

LOL, poor thing.  Jim was referring to me.  I knew right away.  Cuz he's right.  Cocky too.  

Deb, you are definitely right to be safe.  Jim is just worried I think about my sides, esp given my anemia and the experience he's had.

Jim, Deb may be one of the few on this board who is in much my same situation with the acute episode.  

And Deb, its true that the study I cited on the 12 weeks and almost 100% SVR for acutes was, in fact, done in 2000.  

Jim has done much to make me take my anemia much more seriously going into this though, and I'm grateful for that.  It's even pushed me to do more research on the hemolytic side and the bloodwork.  I am interested to see if I will be able to start noticing increases in my MCV as hemolysis occurs and if that will be a good or helpful prognosticator and/or helpful method of balancing my epogen, along with my reticulocyte count.  Theoretically, it woud be, but a good hypothesis mean absolutely nothing until it works out in practice.

[alagirl]

hysterical on that assignment post, I was typing that solemnly swear post before I even saw yours. Too funny!

[alagirl]

I meant me on the cocky thing, not Jim.  although...

[debnevada]

what i found was a precipitous drop in week four or five through 10, dropped from 16.9 to 12
buuuut back to 13 and change now, although i had a wide red cell distriubtion for a long time and still have macrocytosis.

if that helps.

[alagirl]

yeah, i'm glad both of you posted about how quickly you got hgb drop.  I really had been thinking it would be a more gradual thing loss and also more like two or three months in.  So the info is extremely important for me with my situation.  Helps me to be a lot more prepared.

[alagirl]

kind of naive for me to have thought that though.  obvioulsy, riba is powerful if it works fast enough to allow people to go UND so quickly.  duh.