What a wonderful site. just found it. My husband was tested positive for the Hep C virus and just compleated his blood work. Viral load 11 million
AST 55 Genotype 1B Age 53 Biospy Grade 1 Stage 1
Hep Doc said given his viral load it is recommended that he start treatment asap, but given his health condition should he wait?? I understand new develpoments toward treatment are on the horizion that may be eaiser in the body. But his viral load scares the heck out of me. I have not seen a post by anyone who has started out with a viral load that high. I understand that the fourm here gives out personal opinions through experience, but that is just what I am looking for. Someone with some kind of opinion as to what he or she would may or may not do. I don't want this to become an harder thing to try and get rid of as time goes by. Thanks to all
Great that you are doing research and gathering relavent information. You mentioned health conditions. Within the decision to treat or not you should examine how other existing health conditions could be affected by the current treatment meds. By the way, a lot of folks here have similar situations as your hubby (age, gender, stage, geno etc) so it's a good place to participate in discussions. Good luck.
I just had the Most frightening experience!!!!!!!!
I was taking a shower, and outta the blue, I got the Most intense pain in the head (temple area) All I could do was grab my head and begin to massage, all the while my mind racing,....am I having an anorism or what?!
I have never had anything like this, the pain makes an ice-cream headache seem mild.
Has anyone ever experienced this before? I still feel kinda headachey just from the intensity of it all, lasted about one minute tops. FYI: I also thought at that moment, oh my gosh, I am gonna pass out, and be found naked on my bathroom floor. I couldnt get outta that shower fast enough.
I have had something similar to your headache, but not nearly as intense. It felt like a pin point of pain. I talked with my NP about it and she said it was most likely a symptom from riba headache. So she prescribed me pain relievers. What a god send that was.
Can you call your doctor or nurse? I sure would find out what that was all about.
I was recently diagonosed, but I don't know my viral load yet. From what I gather I think the amount of liver damage that has occurred is what matters most. Sounds like his isn't too bad. However, I am new to all this. The people here have been so helpful. They lifted me out of a depression. They also referred me to this site http://janis7hepc.com/ It is very helpful. Welcome to the forum. my name is Pam 42 Geno 1a
11 million is considered high but my viral load has been as high as 35 million. I'm sure many here have been over 11 million.
The important thing to understand is that viral load does not necessarily correlate with liver damage or even damage progression. It also fluctuates a lot. My 35 million viral load decreased to 16,000 (that's thousand not million) in three years WITHOUT treatment. Then four months later it was up to 1.5 million.
Whether or not your husband should treat or not is a very personal decision and you'll hear arguments on both sides. But personally, I wouldn't base the decision on viral load or even enzymes -- but on the amount of liver damage and how you personally feel about treatint now rather than waiting.
Best estimate is that newer drugs are 2-4 years away but that's not a guarantee.
BTW is your doctor a liver specialist (hepatologist)? If not, you might want to consult with one first. They can usually be found at your larger, teaching hospitals.
Your a guick learner, viral loads only matters if you decide to tx. and can and does change. Whats 11 million today could be 5 millon in a couple months. And yes a stage 1 grade1 is very little damage.
High viral load is considered 5 to 25 million so your husband is in lower end of this range. I think I saw somewhere that the average for folks treating with the combo is 5 to 10 million. I started at 5.6 million. It is scary to think of this many critters in your blood but within four weeks of starting treatment, I was undetectable. No matter how many there are, the bulk seems to get killed off within the first few days of treatment.
The real info your husband needs can only be obtained via liver biopsy. How much damage has been done. Very important for deciding on tx and for myriad of decisions that arise after treatment commences. The biopsy was very frightening to me but after having four of them over the years I can tell you that they have really gotten it down to a fairly easy process. My last one was really nothing. There are dangers but I think there is more danger in not having this information.
Sorry, just reread your post - he already had his biopsy. See what happens on treatment, you cant read an entire sentence. He is a 1/1 1b which is a level and grade below where I was 10 years ago when I first started treating. I never really thought I had an option though. It was one big scary mess with few options. I treated immediately when diagnosed and again and a third and fourth time. This is my fourth. None were successful but you know what, my liver damage has remainded exactly the same over the past 10 years! I would like to think that the treatments were responsible for this.
I have gotten some optical migraine headaches since starting treatment. Starts out as sparks in my peripheral vision and ends up with an "ice cream" headache that goes away after I take two naproxin - really messes up my vision when it happens for a while. NP said it probably was interferon related....it used to mostly come in the day or two after shot, but it has come in the middle of the week too! Don't worry to badly about it, but do check with your doctor. Pay attention to Can Do, he really has your best interests at heart, even if he is the forum bad boy! ;o)
Yeah, not raining right now - I am just outside supervising a little bit! Been looking for that red Monte to roll by! I hope LilMomma calls her doctor's office and just checks to make sure. Her procrit hasn't kicked in yet and it could be anemia related.....
I hate callin the doc!!!
I gotta say, lots of very weird things going on.
I have a zillion little purple dots on the palm of my hands, it a weird skin coloration, not "raised" dots.
when I called the doc about the "blurred vision" they had me in a specialists office the next day,...for 3 hours!! Only to be told, I have great eyes, my problem is just sx.......so I really hate to call about anything, they will wear me out with doc office visits,...quite frankly I dont feel that energetic for all that.
The good news is Im home getting the rest that my body needs right now,...next week they will do their best to kill me at work with all the hours and activity.
You guys get these kind of weird sx though?
I thought I had read everything.
I just noticed you said in your post you take Naproxen?
Wow,...one of the first things my hubby was told was "get off the naproxen" of course he has PCT along with his HCV. Doc said naproxen will aggravate those problems, all we take in this house now is Tylenol Extra strength. In fact within a week on stopping the naproxen I must say he saw a noticable improvement with his PCT, albeit, he has been haveing a new bout with it lately. He has a blood blister the size of a nickle on his index finger, extremely painful stuff.
blurred vision on tx is different, thats a sx that they watch real close. What pretty poison said about anemia related could be all it is. If they think its nothin then their not gonna have you come in, and its only happened once right? Why do you think your NP gave you a card with a phone number on it? Not because shes bored and lonely. I'm a old man, humor me and call ok.
I definetely get those pains - like a searing pain right in the temple area. They last only a few minutes and go away. I guess I never really worried about it because they usually went away pretty quickly. I would never say to ignore this while on treatment but I got a kick out of your "finding me naked on bathroom floor" comment. At least a thousand times during tx - I think that same thing - what if I pass out and they find me in this shower - a 275 pound passed out naked guy. I have some experience with this as I had an operation when I was younger for a cyst and I woke up afterwards with about six nurses and doctors trying to lift me off the operating table on to a gurney. All I remember is that I was naked and they were laughing their a*ses off.
Hi return, don't think our posts have passed to each other, hope all is well. You gave me a laugh. You said............what if I pass out and they find me in this shower - a 275 pound passed out naked guy................... Take no offense here but lilmoma, the strawberry blond with the petite body in the shower or you.Hmmmmmmmmmmmm Sorry but your SOL. :)
Tylenol has always been pretty useless to me. Might as well drink a glass of water! NP told me taking OTC naproxen was okay for me, and it may be I have no liver damage. I have probably taken something for pain/headache 10 times the whole eight months I have been on treatment. Humour Can Do and just check, okay????
Not sure where your 60% came from, but that would certainly have to be at commencement of tx. By end of tx, I would think resopnding G3's would be more like 85% or higher. Information that I've read says that number will generally not be improved by extending from 24-48. Each case is different of course - but in general I don't think there is data to support changing protocol to 48 weeks for G3s. As a stage 4 G3, I looked into this pretty thoroughly before stopping at 26 weeks.
BTW, I think there is data to support higher Riba doses. We've discussed that here before.
Now when did you take that first Procrit shot? The headache, I don't know about, but the spots on your hands sound blood-related and I think the combination of those two things happening after your first Procrit shot mean you should call your doctor. I looked at the side effects of Procrit and it is possible although rare to have an allergic reaction. Here is the sight I looked at
I looked up a site recently that said the average viral load starting treatment was 3.2 million, and that "high" was 2+ million. i started at 2.9 million. Am I looking at the wrong sites?? JmJM, hep me man...i'll be good, won't mention nuttin gross... trust me...
LOL. You grossed me out once? Don't remember. Different charts have different set points for low, medium, high, etc, but the numbers you give seem to be in the ballpark. One number that does stick out in my mind is pre-tx viral load of <600,000. This is considered low and what some of the short-course studies use as a cut-off point. But you know, 3.2 million verus 2.9 million doesn't mean a lot to my non-medical mind. Tomorrow those numbers could be swapped. My pre-tx viral load was 1.5 million. Three months before that it was 16,000. So why did I wait three months to treat. Because I didn't have the benefit of time travel. LOL.
Thanks, i see my hepo tomorrow. Which is also at the teaching hospital so i can get bx slides and all other things right there. Plus haven't been to hollywood for a few years and this would be the time to go. tourists should be gone. Plus i don't think insurance will be a problem. I swore i would not get obbessed with this lol. But at stage 4 and so far my sx's have not been that bad. Knock on wood. My biggest concern is that since i'm not having bad sx's Would be to have to quit at 24 and half to start from square one. Of course i might be UD by 24 and then this is a mute point at that time until later. If i do the schiff try i will let all know what i find out. Thanks guy and good luck to you to.
Ha lilmoma , the dots yer talkin about I also have. My doc said it is caused by the anemia. How ya doin this day? I just had a cbc draw done, It's a weekly thing now and I should pick up the labs tomarrow. Ha did the water retention sx go away fer ya?
I think what I was trying to say in my long-winded dermo analogy is that little med fish are intimidated by big med fish, but other big fish med fish aren't. So you in your case, you want a consult at least on peer level with your current doc or perhaps higher. Got to go now and smear on you know what.
Thank you so much for everyone's input.
As you are all aware, we newbees can get a little
freaked out. It's nice to know that we are better
together, than in this battle alone. It's going to
great meeting new friends. Oh by the way
yes born and raised in ca and a real blonde :)
Willing says: Jim and DD have a higher regard for their Drs than I do
And you have a higher regard for some of these studies than I do. :) Like doctors, studies contradict and then update each other all the time and rarely are we comparing apples to apples when it comes down to an individual patient. I got migraines looking for RVR/SVR data in older populations with significant liver damage in terms of length of tx. BTW don't know if this suits you, but you could always copy and paste the PDF to Friole at this website: http://tinyurl.com/edvbn They don't seem to mind folks posting full-text articles. BTW have you done your PCR yet?
I have no knowledge of Dr. Schiff's office. However, many of the top Hepos are used to people flying in from afar and I'm sure some of them make arrangments to treat from afar, perhaps in concert with a more local doctor. Of course, if that's what you want -- ongoing consultation as opposed to a single consult -- the best thing is to call first and ask. The good thing about Schiff and Afdhal is that they have their mitts on the Firbroscan device. So either is a good start.
Just feeling a little down today and just voiceing my opinion,i really hate to hear when any one of us relapses, it just seems like in my opinion that 3s are harder to get rid of then 2s and any tx ending at 12 weeks is way to soon .
Where a good doc comes in is to fill the gap between discordant studies that don't always fit a particular patient and also by analyzing the quality/relevancy of the study where hopefully they have more experience then we. Then by applying on-the-ground experience hopefully based on thousands of patients plus conversations with their peers about thousands of their patients.
I do hear you though about that fifteen minutes and out the door. Often the case but not always. Sometimes you have to keep coming back for that second fifteen minutes or sometimes you have to just talk to more docs until one spends the time you deserve. It's more of a fight than it should be to get the care many of us want. To most docs the "perfect" patient is the one that sits down, listens to the docs spiel without saying a peep. I have a feeling that you don't fit that bill anymore than I.
Goof says: The creme de nuit? I had an unfortunate experience with creme de nuit last nuit, as it turns out.
LOL. Just smeared the "nuit" on. LOL. Lots of serious discussion today so maybe you can lighten things up later with a more detailed descripition of your "unfortunate experience".
Here's a start http://www.med.miami.edu/med/hepatology/outpatient.asp.
His phone is 305 243 4615.
My tx doc referred me to Schiff (actually would have probably ended up with one of his staff) but Ins would not have covered it. Depending on what happens in the next couple of months I may pay out of pocket for a second view by the UM docs dx thru tx. if you reach out to him for appt, please lt us know the particulars.
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