hep viral load

[danity]

Thank you, magnum, indyjo, 1fairygirl & jmjm530 for responding to my question & concerns. This is the first time I have ever been in a forum & didn’t expect a response so soon. I’m glad to hear that your viral load can change either way so much. This makes me feel a little bit better. I’m not anxious to start any tx because I have read the possible side effects, but @ the same time I don't understand why the doc would wait until there is liver damage before starting tx. I guess it seems like if type 1a is hard to treat & w/viral load on the rise + the constant feeling of being drained of energy it would make since to treat. Being pretty newly diagnosed would love any advice & experiences.

[Tallblonde]

Hi and welcome to the forum.  I just wanted to let you know that we only get roughly six to eight new threads daily, so it's always a good idea to economize on their use.  Instead of opening a new one, you can respond by posting on the thread you opened previously.  All newbies, including myself a couple of years ago, tend to open lots of new threads until someone addresses it with them.  I hope this information is helpful to you.

Susan

[Micro2]

I am posting a question here so as not to continue wasting threads.
I am 14 months post tx and still unable to work. I have been disagnosed with chronic fatigue syndrome, depression, and secondary fibromyalgia. I still have a lot of mental fog and memory problems plus my legs and feet are still numb and tingling. I feel quite certain that there others like me out there and I would appreciate hearing from you.
I am 1b stage 1 grade1. I did 12 months combo, 4months mono, and 4 months increased combo and had to stop due to unresolvable anemia. I did not clear the virus,
I currently use povigil, celexa, and ambien for the best quality of life since tx.
For those of you on tx or thinking about it, do not let this scare you, I dont believe that my long term problems are the norm however there is a small percentage out there and thats who I need to hear from.  thanks, Michael

[virtualsuzyq]

This is my first post and I want to say hello to everyone.  This is a great site, very helpful.  I am a 55 year old woman who has had the virus(1b) for over 30 years.  I learned I had the virus 3 years ago and was finally referred to a specialist last month.  Was approved for treatment and will start Pegasus/Copeg in about 1 or 2 weeks.  I am very nervous but feel that if I am going to fight this thing now is probably the best time.  I am worried about driving home after the first injection.  I know everyone is different but is there an average time before the sx start?  Thanks :)

[shanda]

I FOUND OUT I HAD A VIRAL LOAD OF 18 THOUSAND WHEN I WAS PREGNANT I WAS SCARED TO DEATH I HAD A TRANSFUSION AS A BABY I GUESS THATS HOW I WAS EXPOSED ANYWAY MY BABY IS NOW 3 MONTHS OLD I WANT TO THANK YOU ALL 4 EDUCATING ME ON THE VIRUS BECAUSE I WAS EVEN SCARED TO BREASTFEED BUT YOU CAN'T PASS IT THAT WAY SO I DID I HAD AN OPTIONAL C-SECTION BUT I DIDNT KNOW WITH MY OTHER 2 KIDS AND HAD THEM NATURAL THEYRE OK ANYWAY I HAVE NEVER BEEN SICK BUT I HEAR THERES A CURE BUT I DONT THINK IM A CANDIDATE FOR TREATMENT BECAUSE IM NOT SICK I DONT WANT TO HAVE THIS THOUGH AND WILL IT INCREASE OR DECREASE? WHEN SHOULD I DISCUSS TREATMENT?I DON'T KNOW ALL THE TERMS U GUYS USE ALL I KNOW IS I TESTED POSITIVE FOR HEP C AND ITS 18 THOUSAND

[1fairygirl]

viritualsuzyq,
Hi!  You have found a wonderful place to come for answers and comfort as you go through this journey.  There are so many knowledgeable, helpful and compassionate people here. I understand that the younger you are when you treat, the better odds are to clear the virus, so good choice to go ahead and treat. I have not heard of anyone having trouble making it home after getting their injection.  You will want to make sure that you take a couple of Tylenol or whatever your dr. has suggested about an hour before your injection.  That way you should have less side effects.  I'm sure someone else will step in if they have any ideas about the length of time it would take.  I usually take my Tylenol, give myself my shot and then go to sleep and haven't woke up with any nausea, sweats or headaches.  I just have more day to day side effects and nothing real acute.  I'm sure everything will go just fine for you.  If you are feeling apprehensive about your shot, maybe you could arrange to have a friend or relative drive you home after so you won't have to stress about it.  Also remember to start drinking plenty of water daily before your shot day.  It's suggested that you drink at least half of your weight in ounces per day. (If you weigh 140lbs., drink at least 70 ounces per day.)  I'm sure you'll do just fine.  Keep us posted and remember that someone is always here for you.  Smiles, Sue

SHANDA,
So sorry that you had to go through all that stress about your baby while you were pregnant and during delivery.  Glad to hear that someone here was able to give you some peace of mind, though.  So, you know you're hep c positive and your viral load but not what genotype you are or what shape your liver is in.  I think you may want to get a biopsy and be genotyped so that you have enough information to decide about treatment.  You don't have to be sick to choose to do treatment or even to need to do treatment.  Many people have no symptoms and yet their liver is not doing very well and yet others feel bad but their livers are pretty good.  Without knowing what type you are or what is going on with your liver, you don't know if it would be best to treat now or if you could wait.  I understand you wanting to be rid of the virus, when I found out that I was positive, I knew that I wanted to treat.  Also, the younger you are, the more likely you are to clear, from what I've read.  I'm sure some of the others will come up with some more food for thought for you.  Take care and just make sure that you take care of your liver.  Many people who aren't on treatment take milk thistle and all make sure not to drink and alcohol with or without treatment.  Hope to hear more from you soon.  Smiles, Sue

dainty,
I also am type 1a and that is the hardest genotype to clear.  I started to get VERY fatigued, would actually just fall asleep watching tv or even while chatting. (I never was a napper or even much of a sleeper.)  I also developed symptoms or rheumatiod arthritits and was misdiagnosed with RA.  I was treated for two years with chemo for RA, bad for my liver, and then it was discovered that I have hcv.  That was how bad it got for me.  I could barely use my hands, walk, do much of anything due to the pain and inflamation (inflammation) from hcv.  You asked for stories and experiences and that was mine.  I have been off the RA drugs for about five months and have been on pegasys and ribavirin for almost 7 weeks now.  Much of the inflamation (inflammation) is gone from my hands and feet.  It's not great but it's much better, I can type, etc. again.  I am having a tough time with sides but it's do-able.  I am not working, was disabled before with a back and neck injury, and I probably couldn't work right now with my side effects but I was pretty bad before starting treatment.  I think I'll be a lot better when I clear this virus.  Good luck to you in whatever you decide is best for you.  Most people seem to be able to work and do whatever they have to while treating.  I hope that things go well for you.
Smiles, Sue

[virtualsuzyq]

Thanks everyone for your comments.  I appreciate it so much.  This is just a wonderful place to come!

[jmjm530]

Danity...Your're a stage 0. Your doc probably would start talking treatment at stage 2. Statistically, liver damage occurs very gradually. More so with women than men. In my case it took me 35 years to go from stage 0 to stage 3. Some people don't even get to stage 2 in 30 years. On other hand, things can progress faster and that is why your doctor would probably re-biopsy you in 3-5 years. The other thing you should know is that in most cases liver damage is reversible after you clear the virus.

Virtual...Why don't you have a friend or relative drive to the doctor's office with you? Alternatively, they could teach you how to do the shot and then you could do it at home. Chances are you wouldn't have any sx for several hours but everyone reacts differently to the drug and why increase your anxiety level wondering.

Shanda...First, you've got to collect some information. For starters, you need to know: (1) current viral load; (2) genotype; (3) amount of liver damage.

For liver damage, they usually do a liver biposy but some doctors use a blood test called Fibrosure.

After you've collected this information, you can then make an informed decision on treatment. You may or may not need to treat.

Let us know what you find out and don't be afraid to ask questions.

-- Jim

[genedog]

my wistom teeth are killing me today should i use advil are tylenol

[cuteus]

whichever one works best for you.

[Is_This_Real?]

Hello everyone.

I haven't posted in a long time, and most names appear new so most of you probably will not remember me.  I was diagnosed in 2002 after a routine and typical physical exam which showed a very very slight increase in my liver enzymes.  (It has been over 3 years, but as best I can remember my ALT was something like 58 ... only slightly high.)

Well, when I was first told that I had tested postitive, my doctor scared me to death (without meaning to I am sure) and I was simply terrified and expected that the END was near.  Then after much research on the internet (including this and the other forums) I discovered the treatment regime and the HARSH side effects of it.  After much consternation and deliberation and worry and fright, I decided to wait and see what happened.

Well, although I never felt any differnt and never had any symptoms or problems from the Hep, my constant reading of the forums and my mental complex and frame of mind due to having this disease finally scared me into treating.  Also, my doctor seemed to think I was wasting her time when I decided I did not want to treat, and she seemed to express the opinion that I really should treat (although she refused to come out and actually say it).  I finally got my affairs in order, expecting to be basically incapacitiated for a year.  I started treatment on 1/16/04.

To respond to the comment about viral loads changing, let me back up to say that my first PCR (when I was diagnosed in 7/02) was approx 13 million.  I had a re-test in 10/02 and it had increased to 50 million +.  (That increase was part of what scared me into treating, althought I now know it meant NOTHING.)  The viral load just simply confirms that the virus is present.  The test IS NOT sensitive enough to actually count the exact number of virons.  Truthfully, if you drew two seperate blood samples on the same day at the same time, and sent them in seperately, the viral load would most probably be different for both tests ... even thought they are the same blood.  The main thing the viral load test shows is that when on treatment, it needs to show that the virus is decreasing.

Okay, with that said, as previously stated, I started in 1/04.  My baseline viral load (drawn the day of the first shot) was 7.5 million [a decrease from 52 million only 3 months earlier without treatment].  Anyhow, after starting with 7.5 million, I was down to 40 (forty ... as in less than 100) after 4 weeks.  I was negative at 8 weeks, negative at weeks 12, 24, and 48.  Things looked really good, and I expected very good results from the treatment.  I also tested negative at 2 weeks post treatment.  Oh yes, you may be interested that I had almost NO side effects from treatment ... I never changed any daily routines, never missed any work, and never got sick.

However, at 6 weeks post, I had relapsed with a viral load of 90,000.  Just did my 6 month post test last month, and now my viral load is back up to 50 million.  

I had a biopsy before I tried treatment, and after 22 years of infection I had very limited liver damage ... no fibrosis and no chirosis.

The idea behind this thread is to say that I understand the comments about not wanting to have "this disease" and wanting to get rid of it.  I have been there myself.  

The big key to your decision is/should be based upon 2 main factors:  1) what genotype do you have, and 2) how bad is your liver disease?  Ok, if you have geno 2 or 3, go for it and get it over with.  If you have geno 1, think about it a while.  IF your liver diesease is bad (bridging fibrosis or chirosis) you have a much greater need and a greater potential benefit from treatment than if you have no liver disease.  If you have no liver disease (or very very limited) you may want to ask yourself what the benefit of treatment would be?

With genotype 1 the cahnces of clearing this thing are not spectacular, but on the up side, the chances that this thing will kill you are not that great either.  Of 100 people who get HCV, only about 20 develop cirhosis, and then only about 4 develop liver cancer or liver failure.  So, the real 'death rate' is only about 4%.  Although low, I guess anything greater than 0 is too high!  But you can reduce your chances of liver failure by not drinking and watching your diet and exersize.

That being said, evalute your on individual situation.  I did, and I chose to try it.  I won't try it again until something new comes along (hopefully not too far in the disant future), or until I do get serious liver damage.

my thoughts, and nothing else.  everyone should make the decision on their own ... but IF you have a genotype 1, remember, there is no guarantee of sucess with the treatment, and the percentages of success you see quoted my be misleading ...

[iceboy]

Thank you for writing about your experience. I will need to read this over and over when I need to make this decision, but that will be with in the next month or so. I have many of the same issues, but I still don´t know my full profile. I will have biopsy next week, and then I can hopefully glue it all together. Can you tell us a bit more about your treatment. what drugs did you use, etc? all the best

[iceboy]

this calls out so many questions. Are there many people that relaps after such a positive indications during treatment. Is it possible you got reinfected. What genotype are you.....

[scruffy]

Thankyou for your effort in laying out your thoughts and experience on this. You show true concern by taking the time to share your story. frank

[v eggie dip]

Thank you so much for sharing your story...

Soon I will be faced to make the "treat or not treat" decision...I read so many stories on here of all the bad side effects, and some being permenant...It really scares me to think I could be one of the less fortunate ones with the side effects, but it also scares me to think my time will be running out, I am not a young person...

I have quite a few of the Hep C symptoms (joints that ache bad, constant pain in right side both front and back, fatigue, memory loss) and they seem to be getting more and more each day...Can't remember when I actually felt good so it concerns me that I could get even sicker if I opt for treatment...

You're the only one on here that has said you had no bad reaction to treatment..Not very good odds, and kind of makes me side towards not treating...Very scary stuff...

Thanks again, Beth

[doll face]

REAL? Thank you for posting your story. I believe that everyone should get all the different views on tx and sides to better make thier decisions. This is a very difficult time for people and they need to hear not only the good but also the bad times others have had. Unfortunately newbies see us here mostly talking about the bad side effects that we go through. The good is that they also get ideas on how to get through it.

My story is very similar to yours, with a few exceptions. I had horrible sides, but when I relapsed after only 2 months post, I never even thought about not doing it again. I wanted to do it all again as soon as possible,even knowing how I felt during tx the first time. Thankfully I was put on Pegasys the second round and had to do 72 weeks instead of 48. The sides were still pretty rough for me, but managable. I only missed a few days of work this time instead of 4 months, like on pegintron. I am now 8 months post tx. and more importantly NEGATIVE of the virus.

Like you said everyone needs to make thier own decision. This is what I chose to do. I hope that one day you too will be able to say that you are hep free.

Michael- Yes there are many of us with long lasting side effects from the hep and tx. I hope you find some relief soon. I am in the process of stopping the AD, but still have to take vicodin for pains, Ambien to sleep and Snythroid for going hypo  during tx.

[Is_This_Real?]

Hi all.

I wish to comment on dollfaces post.  I am truly happy for her success the second time.  I still think that I could have been successful if I had of only traeted for 72 weeks instead of only 48.  That is the problem with this treatment and the medical 'practice' and 'recommendations'.  The FDA has only recommended and approved a 48 week course, and that is what you get.  Recommendations are based upon studies and results and percentages, not on an individual case basis.  My doctor was very pro establishment, and very opposed to anythign out of the routine.  During my 6 month post treatment visit, she told me she did not believe in re-treatment, and she did not believe in extending treatment past 48 weeks.

Now, with that said, I will acknowledge taht with my very dramatic and quick viral load drop and success with the treatment that probably no one would have recommended for me to treat longer than the 48 weeks (after all, that was a full 40 weeks post clearance).  But still, since I had NO problems with teh treatment, I would have considered at least another few weeks if I had been given the option.  (The way I see it, another 8 or 10 or 26 weeks at that time is nothing compared to me now having to consider another year and a half!)

But anyhow, back to the point. I was a classic case that SHOULD have been considered for extended treatment:  male, over 40, genotype 1a, very high viral load, and over 200 lbs.

These are the poor prognostic factors.  a male has less chance than a female, someone over 40 has a less chance than someone in their 20s or 30s, genotype 1s are less likely to reach SVR (and I remember reading somewhere once that geno 1a have a somewhat better chance of clearance, but also a greater chance of relapse ... thus the end result is 1a and 1b end up with the overall same SVR rates), and then I also remember reading that weights of over say 180 lbs are slightly less likely to acheive SVR.  (The weight is a factor because the drugs are supposed to be dosed based upon weight, but once you get over 150 or so, they prescribe the same dose ... the maximum ... which really is insufficeint for anyone over 200 lbs in my opinion.)

Okay, my thoughts as to why I am not treating again and my future:  First, I have moved and swithed jobs since treatment and I need to get settled and comfortable in my job before risking it again.  Second, as noted I am over 200 lbs (I gained weight curing treatment, mainly because everyone on the forums posted that they lost weight and had to eat more than usual to keep for losing even more, so I guess I developed a habit of eating more than typical while on treatment.  And since I never had any side effects or problems, I never lost any weight and thus the extra eating just packed the pounds on!)  My thoughts on this are simply that I need to lose weight and get back into better shape.  If I could get down to 18lbs (I would need to lose about 40 lbs) I think I would have a better shot at SVR.  Teh genotype 1a and the male gender and the over 40 are things that I cannot change, and wheter I treat again now or in 5 years ... these will not change, no better but no worse.

I do know that IF I try it again, I will find a doctor who is not afraid to step outside the box.  I will not do it again if it means using the exact same dosages of the exact same meds for the exact same time frame ... that will not work and I know it.  New medicines are in the works (nothing outside of the interferon and ribavirin protocol to my knowledge) that can be added to the regular treatment to potentially increase the odds.  It may be several years till they are out, but at least for now, I can wait.

And I also should comment that my reason for not wanting to go through it again is just based upon the hassle.  As I said I had no problems (Oh yeah, someone asked so I should say that I was on Pegasys and ribavirin) with side effects other than a bit more tired than usual.  But it was the hassle of continually having to have the Pegasys refrigerated.  If you needed to travel somewhere on work or vacation or whatever, you had to worry about how you traveled ... how to keep the stuff cold while traveling ... if the hotel had a refrigerator ... if you would be home or free at exactly the same time every week for the shot .... the constant wondreing of how "this one" was going to hit you ...etc, etc, etc.  Also, my insurance made me get the medicine through mail order.  So, you had to plan it up front, figure out how many days in advance to order the stuff, then worry for a week about when it would be delivered.  If it got put on your and you were not home or away on a business trip, what would happen?  Would someone steal it?  Would it melt sitting outside in the heat for several hours?  And tehn teh hassle of teh constant doctors visits.  I don't know about you guys, but I hate doctors offices.  You make an appointment for 10:00.  You get there at 9:50 to make sure you are on time.  You end up sitting there and waiting until 11:00 and then they finally call you back to an exam room where you again sit and wait for several minutes (up to an hour).  I jsut hate that kind of stuff.  If I have an appointment at 10:00, I expect to get in there at 10:00 and preferably be out soon therafter. It was just hard to plan and schedule around the doctor.

Oh well, enough said, and maybe too much!  Anyhow, I did not reach SVR, but lucklily I have no lasting side effects from the treatment either.  So, I am no better but no worse for trying it.  And if I had to make the decision over ... would I do it again?  You bet I would, but I would do it differently.  At least for a few things, I would get in better shape 1st and insist on extended treatment.  And who knows what else?

[avidreader]

I think we tend to hear more from the folks with serious side effects then those who aren't/don't suffer quite as much. Prior to starting treatment I was already dealing with extreme fatigue, aching bones and joints, and 'brain fog'. Treatment has not made those symptoms worse, and if anything, I feel a little better, but I think that is psychological. For years my fatigue was written off by my primary doc as depression/stress and my aching joints were written off to aging. Now, at least I know what's going on.

I started with a month of straight Inteferon (Pegasys) because I had some medical stuff to deal with before I could take ribavarin. I'm now on week 4 of the combined therapy and, so far feel very lucky. Because of my travel schedule and my doc's vacation schedule I haven't yet gotten the results of my first batches of blood work--I should know by tomorrow. I'm hoping for my sake that the theory I hear tossed around--the worse the sx the better the chances for successful treatment--aren't true. I'm type 1a, so I figure if I don't respond, I'll wait until something else rolls along. My insurance company won't go past 28 weeks unless I'm responding within their dictates but they don't know about the 4 weeks of straight Inteferon so, at least I fell like I'm pulling something over on them ;-)

[danity]

hi, everyone. just wanted to find out from those of you that have type 1a w/high viral load (mine is over 8500000)& moderate inflamation (inflammation), no fibrous or cirr. just wanted to know what decisions you made as far as treatment & what kind of symptoms you have if any due to the hep c. i guess i just need to hear from both sides. those that went for treatment & those that didnt. thanks everyone.

[Nooma]

Hi, Danity.

I was diagnosed in January, 2005, 1a, Grade 1, Stage 0, viral load of 950,000, age 55.  Decided to wait because the doc told me I could, but as soon as I told him I would wait, I felt I had made the wrong decision.  Then I went to another doc about 4 months later and when he tested me, my viral load had increased to 60 million.  Quite a jump.  Second doc told me I should wait and see.  He said my symptoms did not seem to be that bad--although I have extreme fatigue and cannot tolerate stress at all (it really wigs me out) and have had a pretty significant bone loss (15%) and some cryo (my hands turn blue in the cold).  I changed jobs a couple of years ago before I knew I had the virus to eliminate the stress and can now manage (I just go to bed early every night, try to eat right and drink lots of filtered water). One thing I did do when I found out I had the virus was to quit drinking any kind of alcohol.  I felt better immediately, but fatigue is still there.  I have to really watch it.  Now, I am going back to the first doc.  His office is closer to my home and he is on the liver transplant team, so I have some comfort in that.  Like you, I want to be treated, but hesitate because of the sides.  I started seeing a psychiatrist before finding out I could wait on treatment and she suggested that I could start treatment and if the sides were too bad, I could then quit.  Anticipating that the second doc would treat me, I started taking an AD because I suffered from a pretty severe panic disorder about 20 years ago--just to be on the safe side.  I was really disappointed when I learned my viral load had increased so much and that the second doc did not recommend treatment at that time.  This was so different from my first doc who would have treated me then and there if I had wanted it.  My plan now is to go back and talk to my first doc about treatment and see, again, what he says.  The gastro that referred me to him was really quite insistant that I take the treatment--but it's not coming together for me in the way that I had hoped.  I pretty much live by the philosophy that everything is exactly the way it should be at any given point in time.  When the time is right, treatment will be there for me.  With that in mind, I guess waiting and seeing is what I am supposed to do--that is, until I see my doc again next month.  As you can see, it is not easy making the decision to treat.  I feel your anguish, pain and anxiety over this decision.  I hope my experiences help.  I'll say my prayers that you make the right decision for you.  

Nooma

[cuteus]

I seem to remember your posts, but my memory of the last 2 years is sketchy. Sorry you have to live with this bug a little longer but you gave it quite a scare for 48 wks!

You might be right in that treating outside of the box might have given it the last dosages for good measure.
In my case, I started with low VL, mild damage, but with aches and pains, fatigue and other minor things. I only wanted to do tx once, so when i still showed VL at wk 12, I fought for extension. I got 72 wks and went for it since the tx was not killing me.  So far it seems to have worked and will now next month a little more, at my 9 month PCR (post).
good luck in your future decissions.

[bobbyullc]

THAT IS A GOOD SUBJECT. I HAVE HAD HEP C FOR 33 YEARS AM 1A AND VL OF 154,000. I HAVE BEEN FEELING SLUGGISH AND NOT ABLE TO GET "UP" LIKE I USED TO. I THOUGHT AGE BUT NOW MAYBE THE HEP C. MY FRIEND JUST FINISHED TX AND SAYS SHE FEELS BETTER THAN SHE HAS IN YEARS. CAN I LOOK FORWARD TO AN INCREASE IN QUALITY OF LIFE IF I BEAT THE HEP C ? I JOG AND KEEP MY WEIGHT DOWN BUT DO NOT FEEL "GOOD' ANYMORE. I START IN SEPT. AND AM NOT LOOKING FORWARD TO IT BUT DO NOT WANT TO DIE THE WAY ANOTHER FRIEND DID. I WILL BE POSTING ON A REGULAR BASIS I AM SURE WHEN I START. SHE ALSO TOLD ME OF A SUPPORT SITE CALLED "BE IN CHARGE" WHERE YOU CAN ASK MEDICAL QUESTIONS 24/7 FOR FREE. THEY HAVE SOME GOOD INFO FOR US NEW C-ERS.

GOOD LUCK TO ALL
BOBBY

[danity]

i want to thank everyone so much for your experiences w/hep c. it has given me some peace of mind to hear from both sides. those of you that have went through tx & those of you that are waiting. i still do not know which way i will go, but i think i'm leaning towards tx. i would still like very much to hear from any of you that have type 1a w/very high vl & no fib or cirr w/moderate inflamation (inflammation). it helps to hear different experiences & information. i know that sometimes i feel like why me. i dont even know how i contacted hep c. its amazing how many people out there that have this disease. i have lots of family that are concerned & i can talk to, but it helps so much talking to people that are having the same experiences you are. again i thank you all so much for helping me out and answering my questions. i go back to the gastro fri so any more info would be welcome. god bless.