Aa
Docs say to stop tx
I'm geno 1b baseline vl 2600000, 2wk vl 15750, 4wk vl 50, 5wk vl <10 und, 8wk vl<10 und, 16wk vl <10 und. I'm in week 18 of tx and my docs are advising me to stop tx due to exacerbation of early parkinson's symptoms. I was seeing a neurologist before starting tx who had not diagnosed parkinson's but said it could be early Parkinson's. I now have weakness on my left side with tremors and they have gotten much worse with tx. My question is if I stop now is there a chance to svr?
Your opinion is valuable and useful. I'm hoping you get into the boceprevir trial soon. I'd love to have you as a fellow pioneer. :) Keep us posted, fret. Take care.
You're absolutely right the question was related to attaining SVR and that was it. I often worry about ppl on tx and how strong their position is on attaining SVR at all cost. I was merely stating what I would do with the amount of information given.
"The tough part, the decision-making, lies with the person".
Absolutely the bottom line! Anyways, I hope you're doing well, I'm hoping to get into the boceprevir trial soon, real soon. God Bless
"The tough part, the decision-making, lies with the person".
Absolutely the bottom line! Anyways, I hope you're doing well, I'm hoping to get into the boceprevir trial soon, real soon. God Bless
jasper, fret...I agree with you that you don't mess with trading off one problem for a worse, life-long one, particularly when you have time to wait. I am not nor have been a "push through treatment at all costs" person. You might have caught me a little while ago actually recommending a riba reduction...imagine. :) Each situation is so individual and stage of damage plays a part too.
Was looking at a suspicion of Parkinson's rather than an actual diagnosis of one and the tremors getting worse without an actual diagnosis. Also, seeing a neurologist before treatment - yet cleared for treatment. And, as comeagain mentioned, too many posts where doctors are pulling people due to lack of experience dealing with a situation rather than based on actual situational requirements so that's where the second opinion suggestion comes in. If I was dealing with treatment AND potentially Parkinson's or an unknown potentially neurological condition, I'd want to make sure I had experienced, knowledgable care all around.
As to the actual question.....if treatment was stopped at THIS stage is SVR possible? Yes....odds drop accordingly but yes, still possible and on top of that, some liver damage can have been reversed.
It all comes down in the end to what that person feels is their own risk level on any of those things and everybody knows what they're willing to risk and what they're not. Those decisions are so individual and very hard to make. All we can do here is present information, perspective...and support. The tough part, the decision-making, lies with the person.
Trish
Was looking at a suspicion of Parkinson's rather than an actual diagnosis of one and the tremors getting worse without an actual diagnosis. Also, seeing a neurologist before treatment - yet cleared for treatment. And, as comeagain mentioned, too many posts where doctors are pulling people due to lack of experience dealing with a situation rather than based on actual situational requirements so that's where the second opinion suggestion comes in. If I was dealing with treatment AND potentially Parkinson's or an unknown potentially neurological condition, I'd want to make sure I had experienced, knowledgable care all around.
As to the actual question.....if treatment was stopped at THIS stage is SVR possible? Yes....odds drop accordingly but yes, still possible and on top of that, some liver damage can have been reversed.
It all comes down in the end to what that person feels is their own risk level on any of those things and everybody knows what they're willing to risk and what they're not. Those decisions are so individual and very hard to make. All we can do here is present information, perspective...and support. The tough part, the decision-making, lies with the person.
Trish
bla. bla. bla interesting theorie ( puzzle one )you´ve got, might be true but on the other hand might not.
Glad you bla blaed though, because Parkinson is a severe issue and this matter really course for a second opinion with the best skilled docs available.
Many of us have the firsthand experience of docs how are a little bit to eger to dose reduse or stop treatment, their simply not knowledgeable enough and only follow the instruction that goes with the meds package.
I think alagirls advice that you shall for sure find out if it is parkinson you dealing with here is a good one.
ca
Glad you bla blaed though, because Parkinson is a severe issue and this matter really course for a second opinion with the best skilled docs available.
Many of us have the firsthand experience of docs how are a little bit to eger to dose reduse or stop treatment, their simply not knowledgeable enough and only follow the instruction that goes with the meds package.
I think alagirls advice that you shall for sure find out if it is parkinson you dealing with here is a good one.
ca
Yeah, some of you might say, bla, bla, bla and you can do it but at what price? Some people are pre disposed of having health related problems later in life and I am a believer in that these meds for tell ones future health issues, laugh if you will but think about what does Interferon do? Boost the immune system and at higher levels than normal, speeding up the process, well what starts breaking down in the process of the higher interferon levels, the body, because it is in overdrive for a long duration. Just look at your own time in treatment and what has gone haywire during that time, true most symptoms will have dissipated after stopping treatment but one has to remember the puzzle has been blown apart and not all things come back together as they once were and are altered or exasperated which should be telling you something, sad but true.
jasper
jasper
When I first read this post my first thought was it’s a no brainer! Done, Finished, Caput, over and Out! and my thoughts are still the same. Forget second opinions or anything else, Parkinson's is a quality of life thing and over powers anything in the present, period! Take the UND and run as fast as you can to the nearest exit, I wish you well,
jasper
jasper
A second opinion isn't that easy to get, at least it's not that easy for me and could take anywhere from 1 to 3 or 4 weeks. I first have to get a referral which takes a day to a week, then you have to locate a Heptologist. Then you have to get in, I'd say the fastest I could get in to see one would take at the minimum 2wks. I just think if I was in the same position, that I would most likely stop. No referral needed for me as I would go with how I feel personally and how much confidence I have in my tx team. Also, in this particular situation I don't think it's that important to absolutely get the second opinion from a Heptologist and go thru all the trouble you would have to go thru. I personally know a couple of doctors who I could get ahold of and I trust their opinions totally as they have both treated me in the past and both of them would give me their professional honest opinions. Personally I feel that lbl1007 has a very good chance at attaining SVR. With that said, I posted a study and that was the only one I could find. Just so you know, I had already made up my mind before I read the study to stop. Some things can be pushed and pushed, but when it comes to something neurological in nature, I sincerely think you have to take the safest option possible, as fast as possible.
God Bless
God Bless
I'm pretty sure there were studies that used RVR and higher VL's that showed shorter course therapy worked...I will have to flip computers and check my bookmarks. I would have noticed, I'm sure, if it only pertained to low VL's since I started with med VL at 2.3 mil.
I would agree that one can argue there's a chance there to fit the criteria with a low VL of 50 at Week 4 and UND at Week 5. Could have cleared later the same day or the next morning.
The question is .. "is there a chance to SVR" if stopping early and I would say yes, there's a chance. Greater chance of SVR if continuing of course, but also a chance if stopping at 24 weeks and even now for that matter. Odds are reduced but yes, a crack at it exists based on the sometimes SVR results of others who have had to shorten treatment times due to exacerbating other health issues even if sacrificing "x" points towards SVR, as you put it, Jim.
I would go for a second opinion before stopping if you can .. no information on the knowledge or experience of your treatment team and some teams will stop treatment earlier than others if their own lack of experience with treating HCV makes them too cautious where more experienced teams would feel comfortable proceeding with caution.
Incidentally....a question to anyone on getting a second opinion. You all make it sound so easy as if it's pick up the phone and ask for an appointment. How do you get a second opinion in the U.S.? In Canada, I have to go through my family doctor who has to give me a referral to the doctor for a second opinion and then to speed things up, I can call and ask to be put on the cancellation list once I get my GP's referral .. but there's no calling directly to the specialist and asking for an appointment. Perhaps there is a "who you know" thing here..but officially, it's get a referral from your GP and wait your turn or wait for a cancellation. What is it in the U.S.?
Good luck to you, lbl ... you at least have as close to RVR as one could hope for and I hope this all sorts out for you favourably.
Trish
I would agree that one can argue there's a chance there to fit the criteria with a low VL of 50 at Week 4 and UND at Week 5. Could have cleared later the same day or the next morning.
The question is .. "is there a chance to SVR" if stopping early and I would say yes, there's a chance. Greater chance of SVR if continuing of course, but also a chance if stopping at 24 weeks and even now for that matter. Odds are reduced but yes, a crack at it exists based on the sometimes SVR results of others who have had to shorten treatment times due to exacerbating other health issues even if sacrificing "x" points towards SVR, as you put it, Jim.
I would go for a second opinion before stopping if you can .. no information on the knowledge or experience of your treatment team and some teams will stop treatment earlier than others if their own lack of experience with treating HCV makes them too cautious where more experienced teams would feel comfortable proceeding with caution.
Incidentally....a question to anyone on getting a second opinion. You all make it sound so easy as if it's pick up the phone and ask for an appointment. How do you get a second opinion in the U.S.? In Canada, I have to go through my family doctor who has to give me a referral to the doctor for a second opinion and then to speed things up, I can call and ask to be put on the cancellation list once I get my GP's referral .. but there's no calling directly to the specialist and asking for an appointment. Perhaps there is a "who you know" thing here..but officially, it's get a referral from your GP and wait your turn or wait for a cancellation. What is it in the U.S.?
Good luck to you, lbl ... you at least have as close to RVR as one could hope for and I hope this all sorts out for you favourably.
Trish
Wasn't there at least one study that only used RVR as a requisite for the shorter course? I understand that RVR is week 4 UND, but one could argue that week 5 is almost as good since the studies probably didn't test again until week 12. In any event, if the Parkinson findings are serious, sounds like tx should be stopped right away. But if it's marginal, the 24-week shorter course might just fit the bill, even if sacrificing "x" points toward SVR.
-- Jim
-- Jim
The study is on patients that obtained RVR at 4 weeks AND started with a low viral load. She doesn't meet either.
And in addition to seeing a hepatologist, I would want to get in a really quick visit with the neurologist to further assess your neuro symptoms just to make sure that you have a diagnosis of Parkinsons and also to make sure that your weakness on one side isn't due to another neuro problem.
Personally I would get a very fast second opinion, but if time won't permit I would stop period. This was the only item I found on pubmed and although the patient improved during tx, he relapsed. Jim gives you the best advice IMO. Oh, the article was dated Nov. 2007 and I ran my search hcv AND parkinson's. Good luck and God Bless
Recovery after L-DOPA treatment in peginterferon and ribavirin induced parkinsonism.
Bersano A, Aghemo A, Rumi MG, Ballabio E, Candelise L, Colombo M.
Department of Neurological Sciences Fondazione Ospedale Maggiore Policlinico, Mangiagalli e Regina Elena, 7 IRCCS, Via F. Sforza 35, Università degli Studi di Milano, Milano, Italy. anna.***@****
BACKGROUND: Hepatitis C virus (HCV) chronically infects approximately 2% of the European population. Antiviral therapy with pegInterferon-alpha (PegIFN) and ribavirin (Rbv) is the standard of care, leading to HCV eradication in roughly 50% of patients. IFN-based therapy has been associated with high rates (20%) of central nervous system side effects, but only a few case reports exist on extrapyramidal side effects. RESULTS: We report a 64-year-old man developing parkinsonism during PegIFN alfa-2a and ribavirin therapy for chronic hepatitis C. No improvement was observed after treatment discontinuation. Therefore, on the basis of previous clinical and experimental reports, levodopa-benserazide treatment was started. After substantial improvement, symptoms relapsed following drug tapering. CONCLUSIONS: This is the first case of parkinsonism in a Caucasian patient receiving PegIFN/Rbv therapy. The rapid and significant improvement of symptoms obtained in our patient with levodopa-benserazide, suggests that this therapy could be considered as first line symptomatic treatment.
PMID: 18549943 [PubMed - indexed for MEDLINE]
Recovery after L-DOPA treatment in peginterferon and ribavirin induced parkinsonism.
Bersano A, Aghemo A, Rumi MG, Ballabio E, Candelise L, Colombo M.
Department of Neurological Sciences Fondazione Ospedale Maggiore Policlinico, Mangiagalli e Regina Elena, 7 IRCCS, Via F. Sforza 35, Università degli Studi di Milano, Milano, Italy. anna.***@****
BACKGROUND: Hepatitis C virus (HCV) chronically infects approximately 2% of the European population. Antiviral therapy with pegInterferon-alpha (PegIFN) and ribavirin (Rbv) is the standard of care, leading to HCV eradication in roughly 50% of patients. IFN-based therapy has been associated with high rates (20%) of central nervous system side effects, but only a few case reports exist on extrapyramidal side effects. RESULTS: We report a 64-year-old man developing parkinsonism during PegIFN alfa-2a and ribavirin therapy for chronic hepatitis C. No improvement was observed after treatment discontinuation. Therefore, on the basis of previous clinical and experimental reports, levodopa-benserazide treatment was started. After substantial improvement, symptoms relapsed following drug tapering. CONCLUSIONS: This is the first case of parkinsonism in a Caucasian patient receiving PegIFN/Rbv therapy. The rapid and significant improvement of symptoms obtained in our patient with levodopa-benserazide, suggests that this therapy could be considered as first line symptomatic treatment.
PMID: 18549943 [PubMed - indexed for MEDLINE]
Wow...this is the first I have seen on near seizures/tremors, and early Parkinson's. I just saw my doc today about similar problems (severe limb, torso, and head jerking) along with other neuro symptoms. I have been trying to determine if they are just extreme SX or something neurological. They did some prelim blood work and are referring me to a specialist.
lbl1007 - Was it a neurologist, GI doc, or hepatologist that suggested you stop TX? I would hate to see you stop TX after such great progress, but as jmjm mention, early Parkinson's may precede the risk factors of HVC at your stage of liver disease. I would consider a second or even third opinion...both diseases are serious and need careful consideration.
alagirl - How did you find out that the tremors were SX related...did you just have to wait and see what happened post treatment? It is very helpful to hear of someone else having similar issues, I have been pretty fuzzy headed and unable to come up with anything helpful in searching. Thanks!
lbl1007 - Was it a neurologist, GI doc, or hepatologist that suggested you stop TX? I would hate to see you stop TX after such great progress, but as jmjm mention, early Parkinson's may precede the risk factors of HVC at your stage of liver disease. I would consider a second or even third opinion...both diseases are serious and need careful consideration.
alagirl - How did you find out that the tremors were SX related...did you just have to wait and see what happened post treatment? It is very helpful to hear of someone else having similar issues, I have been pretty fuzzy headed and unable to come up with anything helpful in searching. Thanks!
I agree with those that suggest seeing a top hepatologist before deciding. Other docs usually don't get it in re to treatment and sides. That said, I'd move heaven and earth to see someone within a week or so because it sounds like you might have to make a decision soon. Regardless of what the phone secretary tells you, many of these top docs will see you promptly if you convey a real sense of urgency with a valid reason like you appear to have
You might SVR -- maybe 50/50 -- but that's a real guess, but I don't think that's the issue. If your docs think it's too dangerous to continue, then dont' continue, regardless of your odds. If you're not confident in their opinions, then get a second opinion. There are lots of things worse than being positive for HCV, so don't have tunnel vision that happens to many of us during treatment. Factoring into the decison would be amount of liver damage. For example, if you are stage 1 or 2, then you shouldn't take much of a risk. Stage 3 or 4, take more or a risk. At least that is how I would process things.
The tremors and near seizures I had during tx (my muscles in my back would convulse so violently it would throw my entire body forward) have completely resolved post treatment. So I am wondering if your Parkinson's would at least get better post tx than while on tx. I agree with what someone else said about seeing if they will let you go to six months.
You didn't mention the results of your biopsy before starting treatment. Could you post them?
I can't answer your question about SVR but it seems to me that you have to weigh the condition of your liver and the urgency to treat it with the risk of underlying disorders becoming worse during and/or after treatment.
Your tx numbers look so promising - superb, really - and you've invested so much so far. On the other hand, Parkinson's is not something I'd want to hasten along if that's what you have and if in fact tx exacerbates it.
This is one instance where I'd move heaven and earth to get a second opinion from a top-notch hepatologist before throwing out the baby with the bathwater.
I can't answer your question about SVR but it seems to me that you have to weigh the condition of your liver and the urgency to treat it with the risk of underlying disorders becoming worse during and/or after treatment.
Your tx numbers look so promising - superb, really - and you've invested so much so far. On the other hand, Parkinson's is not something I'd want to hasten along if that's what you have and if in fact tx exacerbates it.
This is one instance where I'd move heaven and earth to get a second opinion from a top-notch hepatologist before throwing out the baby with the bathwater.
Hey, You should ask them what it would mean for yo to continue for another 6 weeks. You don't quite fit into this group (und at 5 weeks instead of 4) but SO SO CLOSE! There is definatly HOPE even if you stop now. Maybe they would let you taper?
March 6th, 2007
PEGASYS(R) Gets European Approval for a Shorter Treatment Duration for Some Genotype 1 and 4 Hepatitis C Patients who Show a Rapid Response to Therapy
http://www.prnewswire.co.uk
- Shorter, Simplified Treatment Option May Encourage More Patients to Seek Treatment
Some hepatitis C patients with difficult-to-treat HCV genotype 1 who respond quickly to treatment with a combination of PEGASYS(R) (pegylated interferon alfa-2a (40KD)) plus COPEGUS(R) (ribavirin) can benefit from a shorter and simplified course of therapy, following Thursday's Commission decision. With the new approval, a subset of patients with genotypes 1 and 4 HCV who achieve rapid viral response can now receive a shortened, 24-week duration of treatment with Roche's PEGASYS plus COPEGUS. This is half the normal treatment duration.
Shorter, Simplified Treatment Shows Excellent Chance for a Cure
The EU approval is based on data from two pivotal clinical trials for PEGASYS plus COPEGUS.(1,2) Results from these trials show that among patients who achieved a rapid viral response (undetectable viral load at week 4) in the first month of treatment up to 93 per cent of patients with genotype 1 HCV with a low pre-treatment viral load and 83 per cent of patients with genotype 4 were cured following only 24 weeks of therapy - a similar cure rate to that seen following 48 weeks of therapy.(3)
"This is excellent news for patients with hepatitis C," said Dr Peter Ferenci, Professor of the Department of Internal Medicine IV, Gastroenterology and Hepatology, at the University of Vienna, Austria. "This means that patients can find out within one month of starting therapy if they have an excellent chance of being cured and can benefit from a shortened treatment duration. This is likely to encourage patients to seek treatment and motivate them to stay on therapy."
New Recommendations for Treatment
A shorter, 24-week course with PEGASYS plus COPEGUS is now an option for the following patients:(4)
Genotype 1 HCV with a low pre-treatment viral load (defined as <800,000 IU/mL) and an undetectable viral load at weeks 4 and 24;
Genotype 4 HCV regardless of pre-treatment viral load and an undetectable viral load at weeks 4 and 24.
"This licence change reflects Roche's commitment to finding better treatment solutions for patients with HCV by improving treatment with existing therapies and developing new medicines to treat hepatitis C," said Claire Steers, PEGASYS Lifecycle Leader at Roche in Basel, Switzerland. "Roche is committed to finding solutions for a broad range of hepatitis C patients by continuing to simplify treatment with PEGASYS."
March 6th, 2007
PEGASYS(R) Gets European Approval for a Shorter Treatment Duration for Some Genotype 1 and 4 Hepatitis C Patients who Show a Rapid Response to Therapy
http://www.prnewswire.co.uk
- Shorter, Simplified Treatment Option May Encourage More Patients to Seek Treatment
Some hepatitis C patients with difficult-to-treat HCV genotype 1 who respond quickly to treatment with a combination of PEGASYS(R) (pegylated interferon alfa-2a (40KD)) plus COPEGUS(R) (ribavirin) can benefit from a shorter and simplified course of therapy, following Thursday's Commission decision. With the new approval, a subset of patients with genotypes 1 and 4 HCV who achieve rapid viral response can now receive a shortened, 24-week duration of treatment with Roche's PEGASYS plus COPEGUS. This is half the normal treatment duration.
Shorter, Simplified Treatment Shows Excellent Chance for a Cure
The EU approval is based on data from two pivotal clinical trials for PEGASYS plus COPEGUS.(1,2) Results from these trials show that among patients who achieved a rapid viral response (undetectable viral load at week 4) in the first month of treatment up to 93 per cent of patients with genotype 1 HCV with a low pre-treatment viral load and 83 per cent of patients with genotype 4 were cured following only 24 weeks of therapy - a similar cure rate to that seen following 48 weeks of therapy.(3)
"This is excellent news for patients with hepatitis C," said Dr Peter Ferenci, Professor of the Department of Internal Medicine IV, Gastroenterology and Hepatology, at the University of Vienna, Austria. "This means that patients can find out within one month of starting therapy if they have an excellent chance of being cured and can benefit from a shortened treatment duration. This is likely to encourage patients to seek treatment and motivate them to stay on therapy."
New Recommendations for Treatment
A shorter, 24-week course with PEGASYS plus COPEGUS is now an option for the following patients:(4)
Genotype 1 HCV with a low pre-treatment viral load (defined as <800,000 IU/mL) and an undetectable viral load at weeks 4 and 24;
Genotype 4 HCV regardless of pre-treatment viral load and an undetectable viral load at weeks 4 and 24.
"This licence change reflects Roche's commitment to finding better treatment solutions for patients with HCV by improving treatment with existing therapies and developing new medicines to treat hepatitis C," said Claire Steers, PEGASYS Lifecycle Leader at Roche in Basel, Switzerland. "Roche is committed to finding solutions for a broad range of hepatitis C patients by continuing to simplify treatment with PEGASYS."
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