Aa
Doc 's stopping my treatment after ONE injection...huh??
I just started treatment last week Thursday and was good with symptoms till a few days later when I had bad panic attacks and ended up in the ER with a script for adivan!! Then today I woke up with little blister like marks all over my hands ..I called my doc and they said NO MORE!! They said that I have to stop ! After going threw months of insurance hell and trying to mentally prepare my self they are stopping me??? Does ANYONE know why the hand rash is such a big problem? and is there ANY hope that I will be able to see my 16 month baby grow old? Are the new drugs that may be coming out in combination with intron?
I stopped treatment at my third shot, my rage was so bad, I was going to end up homeless...I also couldn't breathe..I felt horrible,
I couldn't do it.
Yes it was quite a fight to get the treatment and it is very expensive... I hope maybe there will be a new treatment I can use later on or my health improves so I can try again later..I am 45. My last biopsy was 2 yrs ago, it was mild -one
I'm not sure what I want to do about my Hep C now, It was Dec. 2008 when I tried treatment...since I stopped I do see a GP and have bloodwork done. He is treating me for Lyme also, I first got lyme when I was 19. He thinks my mental /emotional probelms may be caused by the lyme. I'm not so sure.
I couldn't do it.
Yes it was quite a fight to get the treatment and it is very expensive... I hope maybe there will be a new treatment I can use later on or my health improves so I can try again later..I am 45. My last biopsy was 2 yrs ago, it was mild -one
I'm not sure what I want to do about my Hep C now, It was Dec. 2008 when I tried treatment...since I stopped I do see a GP and have bloodwork done. He is treating me for Lyme also, I first got lyme when I was 19. He thinks my mental /emotional probelms may be caused by the lyme. I'm not so sure.
I most def will be getting a biopsy!! I have a appointment on the 28 at Yale New Haven , CT and they are supposed to be the experts so I pray that he will do a biopsy and that it will be not that bad or not bad at all!! thanks so much for your concern and I will keep you updated !
god bless!! Would say more bu tI am VERY tired!! Went back to work FT and am on my last leg!!
god bless!! Would say more bu tI am VERY tired!! Went back to work FT and am on my last leg!!
Just popped by because you are still on my mind.
First, again, I'm so proud of you for getting C & S. That is so essential to do and sometimes it takes a big event, like a baby to get us there, but so be it. Blessings come in many unexpected ways.
Listen Dragonfly,I say this to you now, not to scare you, but because I've been doing volunteer work with at risk teens who are incarcerated for 15 years now. You really do need a biopsy.
The reason is, I've seen a few girls who had it all (spoiled brats) who ended up doing some heavy using...but the VAST majority of kids I see who ended up addicted were not just "curious or spoiled kids" but rather, they were deeply hurt, deeply troubled kids.
Most had been abused and/or molested...and many had one or both parents as alcoholics, IV druggies or both. One girl asked me once, "where do I go when I get out...I haven't got an aunt uncle, cousin or anyone I've ever known that's not a junkie".
What do you say to someone like that?? It's terribly sad for these kids...makes me want to take them all home.
So, the reason I bring all this up is that I don't know your whole story. If you lived with IV drug users it may be possible that you were infected at a much younger age than you think.
It would only take a shared razor for instance to have been exposed.
For this reason I mention the biopsy and stress again it's need as have others.
Even though we may think we know when we were infected, it's not always when we think it was, and the only way to really get a sure handle on more precisely what stage/grade you are at, is to do the biopsy. Insist you doc do one.
Even the kindest old gramma's and grampa's, or babysitters could have been carriers and exposed you unintentionally, never knowing they had it.
Veterans have especially high rates due to their wartime injuries and exposure to the blood of others, yet many died of heart or other problems, and died without ever being diagnosed with HCV. That's the incidiousness of this often initially "symptomless" virus.
So like I said, the chances are good you are an early stage patient, and have lots of time to dial this all in. But you don't want to bank on chances or guesses.
We have the technology, and you do need to know, you cannot make good choices on anyones hunches or gut instincts...that's what docs did BEFORE they had good tools, but there's no excuse for that now.
So get the biopsy, OK?? And let us know how it turns out so we can help some more.
Feel free to PM me if you need to talk, I'm not dropping in much what with taxes overdo, but I will see a PM alert.
mb
First, again, I'm so proud of you for getting C & S. That is so essential to do and sometimes it takes a big event, like a baby to get us there, but so be it. Blessings come in many unexpected ways.
Listen Dragonfly,I say this to you now, not to scare you, but because I've been doing volunteer work with at risk teens who are incarcerated for 15 years now. You really do need a biopsy.
The reason is, I've seen a few girls who had it all (spoiled brats) who ended up doing some heavy using...but the VAST majority of kids I see who ended up addicted were not just "curious or spoiled kids" but rather, they were deeply hurt, deeply troubled kids.
Most had been abused and/or molested...and many had one or both parents as alcoholics, IV druggies or both. One girl asked me once, "where do I go when I get out...I haven't got an aunt uncle, cousin or anyone I've ever known that's not a junkie".
What do you say to someone like that?? It's terribly sad for these kids...makes me want to take them all home.
So, the reason I bring all this up is that I don't know your whole story. If you lived with IV drug users it may be possible that you were infected at a much younger age than you think.
It would only take a shared razor for instance to have been exposed.
For this reason I mention the biopsy and stress again it's need as have others.
Even though we may think we know when we were infected, it's not always when we think it was, and the only way to really get a sure handle on more precisely what stage/grade you are at, is to do the biopsy. Insist you doc do one.
Even the kindest old gramma's and grampa's, or babysitters could have been carriers and exposed you unintentionally, never knowing they had it.
Veterans have especially high rates due to their wartime injuries and exposure to the blood of others, yet many died of heart or other problems, and died without ever being diagnosed with HCV. That's the incidiousness of this often initially "symptomless" virus.
So like I said, the chances are good you are an early stage patient, and have lots of time to dial this all in. But you don't want to bank on chances or guesses.
We have the technology, and you do need to know, you cannot make good choices on anyones hunches or gut instincts...that's what docs did BEFORE they had good tools, but there's no excuse for that now.
So get the biopsy, OK?? And let us know how it turns out so we can help some more.
Feel free to PM me if you need to talk, I'm not dropping in much what with taxes overdo, but I will see a PM alert.
mb
Just wanted to rectify. A liver biopsy is NOT a means of determining the genotype. As to a biopsy, it is the best way to determine liver damage. It is very important to get one done, IF you can. Not everyone can have a biopsy and there are also some other methods as the fibroscan, which is pretty close in accuracy for the low and the high stages of liver damage.
I think your with a doctor who is not with the program .
1. you need a liver biopsy PERIOD to determine liver damage and get your geno type .
2. rashes and such are not rare , now severe breathing problems are .
3. ANXIETY is a very real and treatable side effect .
4. find a doctor who deals with lots of Hep C patients.
1. you need a liver biopsy PERIOD to determine liver damage and get your geno type .
2. rashes and such are not rare , now severe breathing problems are .
3. ANXIETY is a very real and treatable side effect .
4. find a doctor who deals with lots of Hep C patients.
NYG- the guess was based on her other texts, stating she was only infected 5 yrs ago and had extremely low VL, only 200 and under until very recently, all that said, it was only a guess, as I indicated in the post.
It would be hard to get to stage 4 in only 5 yrs of infection, especially when she mentioned being clean and sober in the last 3 1/2 years, especially since her VL was extremely low until the baby taxed her whole immune system as having babies sometimes does do. That said, without a biopsy and/or scans or labs to go by, no one could venture more than a guess.
You are right Trish HCV is not linear, but the good news about that is that the stages progress very slowly at first in most instances. (unless one had progeria, coinfection with HIV, or a handful of other diseases that escalate disease progressions, and then all bets are off.) However, What I've read indicated that stage one and 2 can take 20 years or more to go through and most if not all damage to the liver can be reversed if treating in those stages. Stage 3 and 4 are more of a rapid progression as we know.
Of course various drugs, alcohol pot and RX's can escalate one through any stage more rapidly.
The operative thing would be for her to have a biopsy to determine with some degree of accuracy what stage she is at. Armed with that she could approach her treatment with a weighed and measured, and a more judicial approach. This might be wisdom for both she and her child. As always this is only one opinion, but it's mine because these chemicals unnerved me rather severely, as they have others, and I've seen and witnessed and had personal phone conversations and letters with some of the more severe cases, and ergo now know that folks must be properly monitored to succeed with this treatment.
Some folks do sail through treatment with only minor depression, exaustion or anxiety.
Others become violent, suicidal, end marriages, harm others, or even threaten to go postal in the ER as one poor soul in here did and later went to court for having done.
The operative concept should be to keep a sane approach in view of each situation and taylor each treatment to the patient and their physicallity and stage of disease
.
Considering Dragonfly may have that time gives her better options.
(Not that any of us should guess, but it looks as if her doctor just guessed, giving her treatment with no biopsy.) (which fact does not surprise me considering my hepatologist want to give chemo to my son without a genotyping or biopsy, for what turned out to be a non existant virus, only antibodies no VL....and yet they were ready to throw chemo down his gullet for 6 months....makes you wonder how many folks have been harmed greatly from too much guessing and false lab results...my guess is a lot have been)
All that said, I think DF's chances of reaching a positive outcome are probably very good long term, and that's what she may have needed to hear and know.... That having a negative result first time trying has happened to thousands who have gone on to treat successfully later.
Of course, were she in latter stage disease my opinion would be quite the opposite, and then she should press hard to continue and resolve things and not quit treatment.
Were she stage 3 or 4 that would be my opinion then.
Yet assuming based on limited info she is still in an early stage, well then even most hepatologist are advising early stage patients to wait for the new PI class drugs coming hopefully next year, less treatment time and a higher cure rate being the rationals of course, and if that proves to be her situation then I stand by what I already said.
ALSO, most important, I stress looking at these options because a high anxiety state is in essense the Manic phase of the Bi-polar state. The creation of, or exascerbation of that is created as serotonin is stripped away. Bipolar is a very real side effect of treatment in some men and women.
Being VERY familiar with the dangers that state can cause because in that state MY OWN mother killed my grandmother and took her own life as well (and my aunts said she wanted to kill me as well, but didn't get the chance). In any case, high anxiety can be dangerous to a patient and those around them....and ergo DF should make every attempt to understand and make sure her DOCTOR understands her vunerability to a chemical imbalance and heads off those issues with appropriate medication. In these cases a stitch in time can save time, and even lives.
DF, keep your chin up...you will get thru this...and nothing is over until He says it's over.
mb
It would be hard to get to stage 4 in only 5 yrs of infection, especially when she mentioned being clean and sober in the last 3 1/2 years, especially since her VL was extremely low until the baby taxed her whole immune system as having babies sometimes does do. That said, without a biopsy and/or scans or labs to go by, no one could venture more than a guess.
You are right Trish HCV is not linear, but the good news about that is that the stages progress very slowly at first in most instances. (unless one had progeria, coinfection with HIV, or a handful of other diseases that escalate disease progressions, and then all bets are off.) However, What I've read indicated that stage one and 2 can take 20 years or more to go through and most if not all damage to the liver can be reversed if treating in those stages. Stage 3 and 4 are more of a rapid progression as we know.
Of course various drugs, alcohol pot and RX's can escalate one through any stage more rapidly.
The operative thing would be for her to have a biopsy to determine with some degree of accuracy what stage she is at. Armed with that she could approach her treatment with a weighed and measured, and a more judicial approach. This might be wisdom for both she and her child. As always this is only one opinion, but it's mine because these chemicals unnerved me rather severely, as they have others, and I've seen and witnessed and had personal phone conversations and letters with some of the more severe cases, and ergo now know that folks must be properly monitored to succeed with this treatment.
Some folks do sail through treatment with only minor depression, exaustion or anxiety.
Others become violent, suicidal, end marriages, harm others, or even threaten to go postal in the ER as one poor soul in here did and later went to court for having done.
The operative concept should be to keep a sane approach in view of each situation and taylor each treatment to the patient and their physicallity and stage of disease
.
Considering Dragonfly may have that time gives her better options.
(Not that any of us should guess, but it looks as if her doctor just guessed, giving her treatment with no biopsy.) (which fact does not surprise me considering my hepatologist want to give chemo to my son without a genotyping or biopsy, for what turned out to be a non existant virus, only antibodies no VL....and yet they were ready to throw chemo down his gullet for 6 months....makes you wonder how many folks have been harmed greatly from too much guessing and false lab results...my guess is a lot have been)
All that said, I think DF's chances of reaching a positive outcome are probably very good long term, and that's what she may have needed to hear and know.... That having a negative result first time trying has happened to thousands who have gone on to treat successfully later.
Of course, were she in latter stage disease my opinion would be quite the opposite, and then she should press hard to continue and resolve things and not quit treatment.
Were she stage 3 or 4 that would be my opinion then.
Yet assuming based on limited info she is still in an early stage, well then even most hepatologist are advising early stage patients to wait for the new PI class drugs coming hopefully next year, less treatment time and a higher cure rate being the rationals of course, and if that proves to be her situation then I stand by what I already said.
ALSO, most important, I stress looking at these options because a high anxiety state is in essense the Manic phase of the Bi-polar state. The creation of, or exascerbation of that is created as serotonin is stripped away. Bipolar is a very real side effect of treatment in some men and women.
Being VERY familiar with the dangers that state can cause because in that state MY OWN mother killed my grandmother and took her own life as well (and my aunts said she wanted to kill me as well, but didn't get the chance). In any case, high anxiety can be dangerous to a patient and those around them....and ergo DF should make every attempt to understand and make sure her DOCTOR understands her vunerability to a chemical imbalance and heads off those issues with appropriate medication. In these cases a stitch in time can save time, and even lives.
DF, keep your chin up...you will get thru this...and nothing is over until He says it's over.
mb
Please, take a deep slow breath.
Whenever you feel panicky, take a deep, s l o w , breath, then another.
Viral load is not related to liver damage. Don't worry!
You do have time. Take care of and enjoy your baby.
Get another opinion. See that specialist. You don't want to go through tx with a doctor you don't feel comfortable with. And maybe the best thing for you might be to wait.
My heptologist says new meds should be available in a few years.
Best of luck, OH
Whenever you feel panicky, take a deep, s l o w , breath, then another.
Viral load is not related to liver damage. Don't worry!
You do have time. Take care of and enjoy your baby.
Get another opinion. See that specialist. You don't want to go through tx with a doctor you don't feel comfortable with. And maybe the best thing for you might be to wait.
My heptologist says new meds should be available in a few years.
Best of luck, OH
Actually, on here MedHelp if you scroll down and look on the right side of the screen you will find "Most Viewed Health Pages" and it contains "Common Hepatitis C Acronyms"
SOC = Standard of Care. Current standard for HCV therapy (SOC) is pegylated interferon and weight based ribavirin. People in drug trials are on SOC + the trial drug
HCV = hepatitis C virus
SVR = sustained viral response, staying free of virus for 6 mos. after drugs end.
UD = undetectable (0 virus detected in blood)
EVR = early viral response, UD by 12 wks of SOC
RVR = rapid viral response, UD by 4 wks of SOC
URVR= ultra rapid viral response, UD before 4 wks of SOC
AD = antidepressant
There are other common abbreviations; I think you'll find them on the janis site.
HCV = hepatitis C virus
SVR = sustained viral response, staying free of virus for 6 mos. after drugs end.
UD = undetectable (0 virus detected in blood)
EVR = early viral response, UD by 12 wks of SOC
RVR = rapid viral response, UD by 4 wks of SOC
URVR= ultra rapid viral response, UD before 4 wks of SOC
AD = antidepressant
There are other common abbreviations; I think you'll find them on the janis site.
I agree with all about the biopsy. I also think Dragonfly got the panic attacks awful early and that would raise a flag that she may have trouble completing 48 weeks. The rash also showed up pretty quick and may be indicative of an allergy. Hopefully the biopsy will give her hope of waiting on newer treatments. They are working on new interferons and a different form of ribavirin that may eliminate some of the hemolytic anemia that is so common with ribavirin. There have been some recent threads referring to this information. It's on Clinical Care Options websiste. Need to become a member to read it, but very informative. I got the panic stuff around 4 1/2 months. I was stopped for 2 weeks, and it did return awful fast and it's really gotten bad in 5 weeks. I'm done on Tuesday so I just take extra Xanax and deal with it.
Nice catch, Deb. I just skimmed merrybe's post and didn't see that line.
Hep C is NOT linear, in that you can't determine how far along someone's liver damage is based on timelines, etc!!!! You simply can't take chances like that. Argh!! While it's true that many people with Hep C can go a long time without their liver damage getting advanced, it's not the same for every person. Two people at Stage 1 can end up at Stage 4 on vastly different timelines. It needs to be diagnosed via biopsy or fibroscan, something that measures these things.
Basing treatment on elevated enzymes without a biopsy is irresponsible in my opinion. There could be various reasons why enzymes are elevated. I would go for that second opinion before going further and maybe it's a good thing they stopped treatment. These drugs are serious stuff and you want to make sure you're in good, experienced knowledgeable hands.
Trish
Hep C is NOT linear, in that you can't determine how far along someone's liver damage is based on timelines, etc!!!! You simply can't take chances like that. Argh!! While it's true that many people with Hep C can go a long time without their liver damage getting advanced, it's not the same for every person. Two people at Stage 1 can end up at Stage 4 on vastly different timelines. It needs to be diagnosed via biopsy or fibroscan, something that measures these things.
Basing treatment on elevated enzymes without a biopsy is irresponsible in my opinion. There could be various reasons why enzymes are elevated. I would go for that second opinion before going further and maybe it's a good thing they stopped treatment. These drugs are serious stuff and you want to make sure you're in good, experienced knowledgeable hands.
Trish
reaction might prove in the end to be a blessing in disguise. I was in stage 4 LD and so could not wait to treat, but you are in stage 1 or 2 at most (by the sound, just guessing)..."
How do you guess at such a thing? I thought honestly I was going to turn out to be a 1 but was already stage 3..........I'm not exactly sure telling someone you think they are stage 1 or 2 is fair though becasue without that biopsy the person could be almost cirrhotic and not have a clue! Liver enzymes don't correlate all the time with damage that could have occured in the past.
Get that biopsy and find out for sure rather then guessing. Many of us have absolutely no side effecrts before we find out we had advanced liver disease.
Good luck.
How do you guess at such a thing? I thought honestly I was going to turn out to be a 1 but was already stage 3..........I'm not exactly sure telling someone you think they are stage 1 or 2 is fair though becasue without that biopsy the person could be almost cirrhotic and not have a clue! Liver enzymes don't correlate all the time with damage that could have occured in the past.
Get that biopsy and find out for sure rather then guessing. Many of us have absolutely no side effecrts before we find out we had advanced liver disease.
Good luck.
Thank you for the encouraging post ..it really lifted my spirits! I am remaining hopeful that something will happen for me ! I need my son just as much as he needs me ! Let me first clear up some points that everyone had asked... 1.) it was my viral load that is 997,000 and my enzymes that were elevated (not sure how much Doc only said they were elevated) 2.) The doc told me her reason in treating me is cause my enzymes were elevated and that is how they seperate who should be treated and who is ok to wait! 3.)My son is 16 months, not a new baby any more and still it is not the right time I do not think cause he needs me to be attentive and watch him carefully. He is too young to understand that Mommy is sick and needs time ! 4.) I also am really anxious to know....What is SOC???
Hi there good mama..., I just popped in for a moment (as taxes have my head spinning Linda Blair style right now) but saw your post and can't help join in.
It sounds like you went for a scary ride there.
Had to read through some of your old posts to get a feel for your case but you are probably in better shape than you realize.
First of all, yes to second opinion, yes to biopsy, better to cross a few T's and dot a few I's before bowing out of treatment, but your age and length of exposure give you great advantage.
Secondly, two things could be going on with your hands (well dozens, but keeping it simple) the first that comes to my mind is allergies. Having been there, and speaking from experience and some medical knowledge, and having once taught anatomy, the body goes through an enormous strain during pregnancy, all organs are taxed and powerful hormones that exist at no other time of life kick in. The chemistry is facinating that allows you to turn into a milk machine for your offspring, or bring that life to fruition.
Read up on it sometime and it will undoubtedly increase your wonderment and appreciation of life! However, the down side is that the strain on the body is tremendous due to all this, and the lack of rest following the arrival of our jubulant bundles adds to that! (congrats by the way for junior, and your clean and sober achievement).
The result of all the strain often creates allergies in women that never before had them.
I developed severe allergies after giving birth...unable to go outside or leave a door open for 1 minute without sneezing for hours, and once a rash on hands that lasted 3 years from carrying a christmas tree. So, it's possible since your immune system is worn down from the birth that VL would go up, and histamine reactions could be in play.
Another possiblility however is the liver is not dealing well with the chemo. Red hands and rashes are common in liver distress.
Don't worry yet. Find out WHY your doc said stop...post results here and call a nurse and have someone explain labs to your satisfaction.
The other issue of course is your young child and your panic. I also had panic from the SOC, and was put on ativan throughout my 96 weeks of tx as a result. It calmed things down, but I'm now struggling to get off it, it must be withdrawn very slowly or will cause MORE panic, and I ended up in ER trying to get off it too fast.
Your docs may be worried about giving you a benzo class drug however, as they are as addictive as opiates your substance abuse history would naturally make a doc more cautious, not wanting you to stumble back into a drug dependancy issue.
Add to that, concern about your child, and how you might deal with that, and I can see why you got the call to stop. Of course, it would be helpful to know your Alt numbers etc to see what part that played in your docs thinking.
As I see it, if you take good care of yourself now, you may be in an ideal position to treat later rather than sooner.
For one thing, new drug coming,
2. your body rested,
3. your child in day care by then,
4. maybe vaccines coming than may shorten the tx time considerable,
5 the SOC PI class drugs coming will shorten time as well, as well as up your odds at success, as well as give you time to bond with your son now and enjoy his energy (you won't be energetic or nearly as patient once on tx.
6. Knowing you had the panic, you could retreat later with antidepressants on board for a couple months BEFORE starting treatment
7.this means less upsets or harm to you and/or your child.
8. With minimal damage, and as short a time as you've had this, (and knowing myself what 90 weeks of treatment was like), if I were in your shoes I'd wait, and when bambino is older, and you have a good support system in place, then tackle treatment, right now it could be brutal for you, especially if they refuse you anti-aniety meds (the anxiety is a direct result of the med incidently, not personality but chemistry) (mine was so severe that I was quivering in my sleep state more than when awake...when awake, I lay there, not worrying at all...but my belly was jumping like shaken jello...like someone inserted a big vibrator in the wrong spot!) grin..
Of course if you could get your doc to allow you the ativan for a short window, until an antidep can kick in...that might work. You will have to see a liver dude at least and a shrink probably to get that done though. How reasonable is your doc? It true that non-hepatologists are ill prepared to adjust patient meds in many cases, mostly because they don't deal with chemo and it's not par for the course for them, also because other than cancer specialists (who deal with pain and chemo daily) the rest have had it drummed in to them NOT to give patients heavy meds...but there is a time for them, hello.
2 more things, get your cholesterol checked...if its too low it can cause depression/anxiety bi-polar to develop as the SOC messes with your serotonin and cholesterol protects the brain supply, so those with low Chol. are more vunerable.
and, 2 go to clinicaloptions.org....join for free...there's a good tutorial on treating patients with depression or panic, take the quiz and see how many questions you can answer correctly, after answering they will tell you if you are right, and if not, what the proper clinical response is....you'll be way ahead of the curve if you spend an hour on this before talking to your doc again.
good luck to you sweetie, and like I said, don't worry, I think maybe your reaction might prove in the end to be a blessing in disguise. I was in stage 4 LD and so could not wait to treat, but you are in stage 1 or 2 at most (by the sound, just guessing)...so waiting may be wisdom in your case for many reasons. Now go hug that baby for me, and remember you are in "His" hands just as much as your boy is in yours. : )
merrybe
It sounds like you went for a scary ride there.
Had to read through some of your old posts to get a feel for your case but you are probably in better shape than you realize.
First of all, yes to second opinion, yes to biopsy, better to cross a few T's and dot a few I's before bowing out of treatment, but your age and length of exposure give you great advantage.
Secondly, two things could be going on with your hands (well dozens, but keeping it simple) the first that comes to my mind is allergies. Having been there, and speaking from experience and some medical knowledge, and having once taught anatomy, the body goes through an enormous strain during pregnancy, all organs are taxed and powerful hormones that exist at no other time of life kick in. The chemistry is facinating that allows you to turn into a milk machine for your offspring, or bring that life to fruition.
Read up on it sometime and it will undoubtedly increase your wonderment and appreciation of life! However, the down side is that the strain on the body is tremendous due to all this, and the lack of rest following the arrival of our jubulant bundles adds to that! (congrats by the way for junior, and your clean and sober achievement).
The result of all the strain often creates allergies in women that never before had them.
I developed severe allergies after giving birth...unable to go outside or leave a door open for 1 minute without sneezing for hours, and once a rash on hands that lasted 3 years from carrying a christmas tree. So, it's possible since your immune system is worn down from the birth that VL would go up, and histamine reactions could be in play.
Another possiblility however is the liver is not dealing well with the chemo. Red hands and rashes are common in liver distress.
Don't worry yet. Find out WHY your doc said stop...post results here and call a nurse and have someone explain labs to your satisfaction.
The other issue of course is your young child and your panic. I also had panic from the SOC, and was put on ativan throughout my 96 weeks of tx as a result. It calmed things down, but I'm now struggling to get off it, it must be withdrawn very slowly or will cause MORE panic, and I ended up in ER trying to get off it too fast.
Your docs may be worried about giving you a benzo class drug however, as they are as addictive as opiates your substance abuse history would naturally make a doc more cautious, not wanting you to stumble back into a drug dependancy issue.
Add to that, concern about your child, and how you might deal with that, and I can see why you got the call to stop. Of course, it would be helpful to know your Alt numbers etc to see what part that played in your docs thinking.
As I see it, if you take good care of yourself now, you may be in an ideal position to treat later rather than sooner.
For one thing, new drug coming,
2. your body rested,
3. your child in day care by then,
4. maybe vaccines coming than may shorten the tx time considerable,
5 the SOC PI class drugs coming will shorten time as well, as well as up your odds at success, as well as give you time to bond with your son now and enjoy his energy (you won't be energetic or nearly as patient once on tx.
6. Knowing you had the panic, you could retreat later with antidepressants on board for a couple months BEFORE starting treatment
7.this means less upsets or harm to you and/or your child.
8. With minimal damage, and as short a time as you've had this, (and knowing myself what 90 weeks of treatment was like), if I were in your shoes I'd wait, and when bambino is older, and you have a good support system in place, then tackle treatment, right now it could be brutal for you, especially if they refuse you anti-aniety meds (the anxiety is a direct result of the med incidently, not personality but chemistry) (mine was so severe that I was quivering in my sleep state more than when awake...when awake, I lay there, not worrying at all...but my belly was jumping like shaken jello...like someone inserted a big vibrator in the wrong spot!) grin..
Of course if you could get your doc to allow you the ativan for a short window, until an antidep can kick in...that might work. You will have to see a liver dude at least and a shrink probably to get that done though. How reasonable is your doc? It true that non-hepatologists are ill prepared to adjust patient meds in many cases, mostly because they don't deal with chemo and it's not par for the course for them, also because other than cancer specialists (who deal with pain and chemo daily) the rest have had it drummed in to them NOT to give patients heavy meds...but there is a time for them, hello.
2 more things, get your cholesterol checked...if its too low it can cause depression/anxiety bi-polar to develop as the SOC messes with your serotonin and cholesterol protects the brain supply, so those with low Chol. are more vunerable.
and, 2 go to clinicaloptions.org....join for free...there's a good tutorial on treating patients with depression or panic, take the quiz and see how many questions you can answer correctly, after answering they will tell you if you are right, and if not, what the proper clinical response is....you'll be way ahead of the curve if you spend an hour on this before talking to your doc again.
good luck to you sweetie, and like I said, don't worry, I think maybe your reaction might prove in the end to be a blessing in disguise. I was in stage 4 LD and so could not wait to treat, but you are in stage 1 or 2 at most (by the sound, just guessing)...so waiting may be wisdom in your case for many reasons. Now go hug that baby for me, and remember you are in "His" hands just as much as your boy is in yours. : )
merrybe
"my son does not deserve his mpther to take a "mental vacation" at his young age. NO I have NOT had a biopsy and I would like one!"
Good thinking on both points. I think if you get a biopsy done it will likely, and hopefully, put your mind at ease that you have some time to wait until your son gets a little older before you start treatment. If you are early stage liver damage, you can afford to wait until a better time for you. The key will be to monitor your liver over the years to make sure you are still okay and can still afford to wait until you're ready to do treatment or until it's simply time based on your situation.
I'm encouraged to hear that you're planning to get a 2nd opinion at a larger hospital (sounds like a larger one anyway) that will hopefully have experienced hepatologists who know the ins and outs of treating with Hepatitis C.
Like Bill said....learn all that you can... and take care of yourself and your wee one too.
All the best to you.
Trish
Good thinking on both points. I think if you get a biopsy done it will likely, and hopefully, put your mind at ease that you have some time to wait until your son gets a little older before you start treatment. If you are early stage liver damage, you can afford to wait until a better time for you. The key will be to monitor your liver over the years to make sure you are still okay and can still afford to wait until you're ready to do treatment or until it's simply time based on your situation.
I'm encouraged to hear that you're planning to get a 2nd opinion at a larger hospital (sounds like a larger one anyway) that will hopefully have experienced hepatologists who know the ins and outs of treating with Hepatitis C.
Like Bill said....learn all that you can... and take care of yourself and your wee one too.
All the best to you.
Trish
I think you might be getting your liver enzymes and your viral load crossed up, but it’s not important at this point. A viral load of 997,000 isn’t too terribly high; there are people out there with viral loads over 50,000,000 (fifty million). The point is to take this time to gather your thoughts, and continue to read, learn and ask questions about the disease and treatment. If it takes you another year to get ready for another treatment, that’s probably fine; ask your new doctor about all this to make sure. Usually, there’s no big hurry to treat this.
Take care, hang around and ask questions and listen; oh, and take care of yourself, too :o).
Bill
Take care, hang around and ask questions and listen; oh, and take care of yourself, too :o).
Bill
UPbeat...I believe that you are right! How can I go 48 weeks?? I owe it to my child to at least try to get to 12 weeks to see if it is working right??
Im 30 years old and got infected about 5 yeas ago MAX, how can this be happening so fast? My viral load was 55 until I got pregnant and then while I was prego it shot up to 230 and after a c-section and breast feeding for 5 months my viral load is 997,000 DRASTIC jump in a year! I am scared to death(no pun intended) and feel really depressed about the fact that i have been clean for 3 1/2 years doing the best ever and can not enjoy my life because I am always feeling sick! To Bill..thanks so much for the information, You have been a great help to me and to the rest of ya who took the time to respond to me thank you!
I am going for a second opinion in a month or so to Yale new Haven hospital and am going to see a hepatologist ho spec in Hep C so hopefully I will get some new hope out of that meeting!
Im 30 years old and got infected about 5 yeas ago MAX, how can this be happening so fast? My viral load was 55 until I got pregnant and then while I was prego it shot up to 230 and after a c-section and breast feeding for 5 months my viral load is 997,000 DRASTIC jump in a year! I am scared to death(no pun intended) and feel really depressed about the fact that i have been clean for 3 1/2 years doing the best ever and can not enjoy my life because I am always feeling sick! To Bill..thanks so much for the information, You have been a great help to me and to the rest of ya who took the time to respond to me thank you!
I am going for a second opinion in a month or so to Yale new Haven hospital and am going to see a hepatologist ho spec in Hep C so hopefully I will get some new hope out of that meeting!
If you end up in the ER after a few days then how can your doctor figure you can do this for 48 weeks?
i got the a rash on arm elbows and hands straight after starting treatment doc told it was the bodies way of dumping riba out of my body cleared up after few weeks and never had problem again on 27 weeks now
I totally agree with Newleaf and Bill. I have a suggestion. Can you take a picture of the rash so if it clears up before the "real" doc gets back you will have a picture? Sometimes they can tell if it is a drug rash.
And, I want to tell you when I was diagnosed in 1992 I already had cirrhosis. My girls were just starting their careers. I never thought I'd see them married nonetheless have grandkids. Well, here it is 2009 and my oldest granddaughter is almost 11 and the other five go all the way down to 19 months. I still have HCV. I still have cirrhosis and I am still here. You will see you child grow up. That's a promise.
And, I want to tell you when I was diagnosed in 1992 I already had cirrhosis. My girls were just starting their careers. I never thought I'd see them married nonetheless have grandkids. Well, here it is 2009 and my oldest granddaughter is almost 11 and the other five go all the way down to 19 months. I still have HCV. I still have cirrhosis and I am still here. You will see you child grow up. That's a promise.
Such an early rash may indicate an allergy to one of the treatment meds or even to the Atavan. Not common but it happens. Let the most experienced doctor in the practice get back and see what he says. Nothing personal, just a little CYA going on and the less experienced doc is worried about your quick reaction to something in your therapy. If the rash stays after you've been off the hep c meds for a week or 2, it may just be the Atavan and you'll need to try a different mood drug. Try not to worry. You've done things right. You just need more medical consultation to get going again.
If your doctor tells you to stop treatment, you should do so. It would be nice if you had another doctor on board to review your case, but this doesn’t sound like an option right now given the time constraints. You aren’t so invested in this treatment yet at one week; I’d take this opportunity to request a biopsy and review your treatment options.
Many people that have little damage decide to postpone therapy; with genotype 1, this might be a good idea for now. The only way to know how urgent treatment is for you personally is a biopsy or one of the surrogate blood tests such as Fibroscan or Fibrospect.
These meds can affect some people profoundly; take your time, review your options and learn more about this disease and its treatment. If you haven’t already, you might take a look at the following site for more info about HCV:
http://janis7hepc.com/
Good luck—
Bill
Many people that have little damage decide to postpone therapy; with genotype 1, this might be a good idea for now. The only way to know how urgent treatment is for you personally is a biopsy or one of the surrogate blood tests such as Fibroscan or Fibrospect.
These meds can affect some people profoundly; take your time, review your options and learn more about this disease and its treatment. If you haven’t already, you might take a look at the following site for more info about HCV:
http://janis7hepc.com/
Good luck—
Bill
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