Patient just diagnosed with Hep C Genotype 1. Has joint aches, body aches, extreme fatigue, insomnia, depression, feels like feet are swollen and painful. Doctor said these symptoms aren't from diagnosis and dismissed his complaints. He doesn't know what to believe. He is having ultrasound on liver next week. He is trying to decide if he should wait for the new treatment or do traditional. Is there any news about when the new treatment will be available? He is so discouraged and doesn't know what he is going to be able to manage. Is his likely to continue to feel badly? What can he do for symptoms?
"Has joint aches, body aches, extreme fatigue, insomnia, depression, feels like feet are swollen and painful. Doctor said these symptoms aren't from diagnosis and dismissed his complaints."
His doctor is dead wrong. Hepatitis C can definitely cause multiple extrahepatic manifestations including all of the symptoms you mentioned. At least 75% of people with Hepatitis C have one or more extrahepatic manifestation. I am including a link that will list and describe many of the extrahepatic manifestation of Hepatitis C. In addition, the swelling in the feet can be caused from liver problems.
Maybe it would be worthwhile to print it out and give it to his doctor so his doctor will be a bit more enlightened.
After the ultrasound, he should see a competent Gastroenterologist or Hepatologist (liver doctor) who is experienced and knowledgeable in treating Hepatitis C. He should also get tested for his Genotype (if he has not already been tested for it). The Genotype will determine the type of treatment he will receive.
He should also have a liver biopsy to determine what his liver fibrosis stage is. Once he knows what his liver fibrosis stage is, then he can better decide how urgent it is to treat. He appears to have a lot of extrahepatic manifestations of Hepatitis C so, if there are no medical reasons for him not to treat, treating sooner rather than later is most likely a good idea.
"He is trying to decide if he should wait for the new treatment or do traditional. Is there any news about when the new treatment will be available? "
If he is Genotype 1, the current treatment is Interferon, Ribavirin, and a Protease Inhibitor.
If he is Genotype 2 or 3, the current treatment is Interferon and Ribavirin.
However, there are some new drugs that are awaiting FDA approval. They may be available early next year.
The new drugs for Genotype 1 will still include Interferon and Ribavirin, and they will also include Sofosbuvir.
The new treatments for Genotype 2 and 3 will include Ribavirin and Sofosbuvir.
In addition, there are other new drugs that are in the pipeline and may be available in the near future.
"Is his likely to continue to feel badly? What can he do for symptoms? "
If the symptoms he is having are extrahepatic manifestions, then some of them, or possibly all of them, may disappear after he treats and gets rid of his Hepatitis C.
He needs to treat and get rid of the Hepatitis C in order to improve extrahepatic manifestation symptoms.
He should be seen by a psychiatrist who can evaluate and treat his depression.
In addition, it may be beneficial to be seen and evaluated by a Rheumatologist for his joint and body aches and his fatigue and feet pain. Hepatitis C can trigger autoimmune diseases and other diseases which can cause his symptoms.
The feet swelling can be caused by many things so he should have that evaluated as well.
You've been given excellent advice above and I'm just chiming in to add another voice. The patient's symptoms are exactly what I got as extrahepatic manifestations of HCV. I went to the doctor 27 years ago with those symptoms and while running multiple tests to determine the cause, my hepatitis was discovered. Back then it was still called non-A/non-B hepatitis, there was no treatment available, and no one linked it with the symptoms that sent me to the doctor in the first place. It took about 10 years before they learned enough to link the symptoms, and it took until last year before a treatment actually worked for me and I could eliminate the virus. Now I'm free of the virus and I'm still hoping more of the extra hepatic symptoms will fade away with time.
Your friend needs to gather more information before he can determine the best pathway to wellness. He needs a specialist, not a general practitioner. He needs, at the very minimum, a gastroenterologist, but the best care would be with a hepatologist working at a large medical facility where different kinds of specialists can easily consult with one another. He needs a full set of blood tests to determine how well his liver is functioning and what genotype of the virus he has been infected by. He also needs the ultrasound results and he really should have a liver biopsy to determine exactly how much damage has already been done to his liver. This is ranked as stage 0 (no fibrosis, or scarring), 1, 2 or 3 are the various levels of worsening fibrosis, and stage 4 is considered cirrhosis. The number on this score will determine how urgent it is for him to treat right away or if he can afford to wait for the next drugs to be approved, and can also make a difference in how long he would need to take the drugs to maximize the cure rate. It's always best to study up on all these things and take a very active role in managing your own health, but its really critical if you are forced to settle for less-than-the-best in medical partners. Not all care is equal, and neither are all insurance policies. Medhelp is a good place to learn, and I also recommend http://hcvadvocate.org. Good luck!
The PCM is his case manager but he is being seen also by a gastroentologist and liver specialist at the VA Hospital. His doctor is decidedly ignorant but hopefully the specialists will be more involved and effective. Thanks for taking the time to give such detailed, thoughtful answers. He has genotype 1 and an ultrasound scheduled for next week..
I'd repeat that those symptoms seem like classic HCV symptoms, and may also be symptoms of advanced damage.
This patient needs prompt and *perhaps* heightened care, not the symptoms being dismissed as unrelated...
If it was me.....I would want to look at a variety of issues; the issues with the feet could be diabetes, could be neuropathy, could be liver damage/staging related. They sound like the general health needs a close look, not just HCV specific issues.
So far as HCV, they will possibly want to know if they are a 1a or 1b genotype. If the VA will spring for an il-28b genetic marker test it may also help assess some types of viral response to various types of treatment therapies. (for instance a diabetic il-28 T/T genetic marker w/ cirrhosis might have poor treatment success prospects)
I also would want to know the liver damage staging,
but I would be curious about many other allied issues since they all will play a part in the patients health, speed at which the damage may progress if untreated and the ability of the patient to withstand and succeed with the type of therapy which may be offered.
Without a lot more info I think they are flying in the dark......
.......and that doctor who thinks this is not related to HCV.....
well....... *perhaps* they are right, but many people at this forum might disagree.
Stay in touch and keep this patient in the loop. It sound like they need some help. Good luck with the next better qualified HCV speclists w/ the VA.
The above referenced link is to this article "Hepatitis C Drug Development Catapults Onward" By Tracy Swan gives expensive info on the status of up
coming treatment. It's also in an easy to understand format.
This was first posted by OH and I found this article informative and a good
site to book mark and watch about treatment development.
Looks like I have a lot to learn. Your responses are very sophisticated. One thing I have gleaned is Interferon is not desirable and maybe not even necessary with the new meds. He is so new with his diagnosis that he is still going through the stages of grief. Right now, I fear he is in denial and probably even drinking. If someone could give me a good explanation of the effects of alcohol on a Hep C patient, maybe I can enlighten him. He is also suffering from PTSD and TBI with extreme migraines, all combat injuries .Also, wife walked out on him upon his return from Afghanistan. This has been a tough year. Now this. Thanks for your support.
Interferon is still a important part of treatment for those with genotype 1 and looks to be for at least a couple of years..... As for alcohol and Hep C, not a very good ideal. A drink every now and then maybe not so bad from what I have read. To be honest It would be best to stop all together. Below is a link to maybe go through.....Good luck
Excellent advice. I've had a couple of people come to me needing advice after being recently diagnosed. One of them said she's seeing a local hepatologist here, so that was all I needed to know. She's in good hands. Makes a big difference.
Back when I was young, I took off once to go get my car...... I left at about 9 at night with a few bucks, under dressed and thought I would just hitchhike what might have been into the boondocks of rural iowa around new years eve.
I mean.... the car was only out in the middle of nowhere in the Iowa gulag; *shouldn't be a problem*. : )
Ummmmmmm it wasn't very well thought out, but I thought that I'd be OK, and besides..... I wanted the car for New Years eve.
Well....... I'm a little different now. I plan things a bit more.
Your friend isn't walking out of the house in late December.....
If he intended to treat 3 years ago, I might tell you that he was about to embark on a 1 year trip by foot.
If he had waited until 2011, then I would say that it would be more like he was doing a 6 month trip, but in a way...... in spite of the fact the trip was shorter...... he would be packing 30 additional pounds of gear.
Now I'm saying..... if he waits for the newest drugs to be approved (no clue when the VA would use them or if)...... he is back to about a 6 month trip....., but with maybe 10 pounds of gear.....AND it would be far more certain that he would arrive.... that first example might have had around 50% chance of making it, the second 70% the 3rd example, closer to 75-90%. (it ultimately depends upon many factors...factors it is unclear to me that have been discussed w/ the patient)
If he were to wait a bit more than a year maybe13-16 months...... his trip would probably be more like 12 weeks, and the chances of success very close to 100%.
I work in building trades..... but I assume that this same thing applied to soldiering; plan your work, and work your plan.
The treatments...... they are not anything to do impetuously, and I do not recommend starting a treatment until one has a competent doctor.
If he doesn't have a competent doctor, then....... he already has a few strikes against him.
FWIW...... I have never heard liver staging described as "normal" usually, it's stage 1, 2, 3 ect.
Boceprevir (w/ IFN and RBV) will have a lower success rate than Sofosbuvir (w/IFN and RBV)
Boceprevir will have more side effects
Boceprevir will be a longer period of treatment
If your friend happened to have a few negative predictive issues...... his chances of success would be quite low and almost certainly he would treat for a year.
I really think they need more information before they decide. I also have to wonder what the doctors rationale as to why they would treat this person with a less effective treatment when merely waiting a few months could make the difference between an under 6 month TX or a year of TX?
(and a decent size difference in chances of success as well)
I couldn't agree with you more. He is workng,with a specialist but I am not in on the conversations so don't have all the info.His main concern is that if he waits, his condition will worsen. Also, he feels like his life is on hold until treatment is over. He is afraid to commit to anything, not knowing how he will feel and how often he will have med appts. I was under the impression that the traditional treatment is 6 months and the new was 4. Sounds like that is too optimistic? The VA has a good reputation for treatment of Hep C and he likes his specialist (which is unusual for him). So I can tell him that traditional is more likely to take a year and new, 6 months? I will work on being included in an appointment with doctor. Thanks for your thorough and kind response.
Sorry...I didn't make it clear that my car had been left 6 hours away by driving....and i would be trying to hitchhike in the middle of the night in winter, below freezing..... really ill advised.
Your friend my be getting fine advice. I really don't know his liver damage staging, don't know if the specialist is a hepatologist..... I kind of knew/assumed that "Boceprevir" was being offered.... It's called Victrellis now.
A blood test can show what il-28 genotype your friend is...... if he is a TT type...... his odds of success w/ victrellis will be diminished. I also do not see if he is genotype 1a or a 1b. If you factor in a few things like that....or staging.....which I do not know....... other than "normal"..... his chances could be good or bad. I don't know since there isn't information.
I DO know that either of the new drugs being offered quite soon would likely have a better chance at success and could mean the difference between success or failure, a longer treatment or a shorter treatment, and more sides of less sides. In the case of a drug treatment which can cause anemia and compromise some peoples ability to perform their jobs..... there is a huge difference between having to treat 6 months versus 12 months........
I am not suggesting he do one or the other.....
I'm just suggesting that he better knows the risks and rewards of each type of treatment, and the game plan if things don't go as planned.
I believe that Sofosbuvir (to be used with IFN and RBV) will be approved in early December.... but I don't know when the VA will start treating with it.
FWIW..... I just finished treating in a trial with the newest form of treatment.
I'm 60, a stage 2, a geno 1a (which is harder to treat than 1b), and a C/T il-28 genotype (which is also a middle negative success predictor-non-CC).
I went from a viral load of 3 million ml/iu to below quantification in my first week- and that's about the norm.
This new form of TX will be available in just a little over a year, probably no longer than early 2015. I recently read that the scuttlebutt was approval late 2014. My trial arm pretty much was the longest running arm and most of us finished dosing this month...... in 3 and 6 months post TX the data is all collected, so data may be provided to the FDA in advance of that, but the 6 month PCRs will be done 3 months into 2014, the 3 month PCR's are actually now recognized as sufficient; they would be done the first of the year......
Approval takes about 6 months.
We will *see* when it gets approved and may hear more at the end of this month at a quarterly Gilead meeting.
There will also be more data presented on the new therapies in very early November at the AASLD liver conference.
I'm just saying....picking a treatment is closer to like buying a house, than buying a set of tires.
Good luck in whatever he decides, there is risk in waiting and risk in treating. My point is for him to understand better before he chooses.
Understand also.....I am very atypical and waited 10 years to treat. I passed up a comparable treatment to what he is now being offered 5 years ago. So take my advice with a grain of salt.
The current recommended treatment for Genotype 1 is Interferon, Ribavirin, and a Protease Inhibitor (either Boceprevir or Telaprevir). The treatment is response guided. That means that the length of treatment depends on when a person becomes Undetectable. If the person is on Boceprevir, and the person is Undetectable at week 8, then the person treats for 28 weeks. If the person is still Detectable at 8 weeks, then the person treats for 48 weeks. With Telaprevir, if the person is Undetectable at week 4 then the person treats for 24 weeks. If the person is Detectable at week 8, then the person treats for 48 weeks. Most people ckear early and are able to treat for the shorter period of time.
There are other factors that play into the length of treatment. If the person has Cirrhosis, they treat for 48 weeks. Previous response also determines length of treatment.
Your friend has never treated before so that is not a factor in his situation.
In one of your posts you said your friend was having an Ultrasound. Then today you said the Biopsy results were normal. Are you sure he had a biopsy already, or did you mean the Ultrasound was normal.
I ask because it is important to know his stage of fibrosis. The Ultrasound may show normal even if he has Stage 1, 2 or 3 liver fibrosis. The liver biopsy will give a more accurate determination of his actual liver fibrosis stage and how urgent it is to treat soon.
My Ultrasound was normal but my liver biopsy was Stage 2. I was diagnosed in July 2011. I chose to treat immediately and not wait. I started treatment in Se[pt. 2011 and I treated with Telaprevir, Interferon, and Ribavirin. I am now cured. I am exceptionally happy that I treated right away.
I had a lot of extrahepatic manifestations prior to treatment. I was quite symptomatic including having severe fatigue. All of that fatigue is totally gone and I feel better than I have in 20 years.
Your friend is symptomatic so he may wish to treat and get rid of the Hep C before he develops any more extrahepatic manifestations. That may be why he is so anxious to treat.
If he has not had a liver biopsy, he does need one so he know how urgent it is to treat and how long he should treat.
My post said: "With Telaprevir, if the person is Undetectable at week 4 then the person treats for 24 weeks. If the person is Detectable at week 8, then the person treats for 48 weeks. Most people ckear early and are able to treat for the shorter period of time. "
It should have said: With Telaprevir, if the person is Undetectable at week 4 then the person treats for 24 weeks. If the person is Detectable at "week 4," then the person treats for 48 weeks. Most people ckear early and are able to treat for the shorter period of time. "
Don't let any of the forum posters, especially posters who have never treated with interferon, scare you or your friend away from doing treatment. Treatment is no picnic but it is generally very doable.
I did 48 weeks of treatment with Interferon, Ribavirin, and Incivek. Like I said, it was no picnic, but in ABSOLUTELY NO WAY did it remotely compare to hitchhiking in the middle of the night in winter, below freezing to a car which had been left 6 hours away by driving. That scenario does not even remotely resemble treatment and, in my opinion, there is no legitimate reason to scare people away from treatment.
I attained SVR (cure) but, if I had not attained SVR, I would treat again in a heartbeat because I know that Hepatitis C can cause major health problems and it can kill.
Why the scare tactics? And from someone who never even treated before. I also treated, twice as a matter of fact and now SVR. Your friends does not want to become cirrhotic like I am....... Good luck to him
2 New drugs are about to be FDA approved that will not have black box warnings accompanying them (such as Incivek and Victrellis)
This isn't really about interferon, since in waiting for the most recently approved drugs will end up involving interferon.
Where the issue of interferon comes to play is that if you use a less efficacious drug, the response could be less or slower, thereby meaning a longer treatment risk in a percentage of those who treat. (and thereby greater exposure to IFN.)
Neither of you yet know the patients staging, IL-28 genotype, the patients sub-genotype, (1a or 1b) and yet you seem to suggest it is imperative they treat now or face cirrhosis.
Is that really going to happen before sofosbuvir is approved in December? Or Simeprevir is also to likely to be approved in December, and Daclatasvir very soon as well.
We will soon see what happens with writing off label soon after that. From what I have read, some doctors are ready to try it. We will soon see if providers will as well.
MY little story was to illustrate; THINK, and then act.
Don't be impulsive.
Gilead has it's meeting with the FDA the 25th of this month......
Gilead has its quarterly financial review the the 29th of October
Gilead will attend and have presentations in the 1st week of November at AASLD.
Information may be revealed at any one of these meetings which may be very useful to the person who is going to soon treat. If either of you think they should treat right now with victrellis without even knowing the patients staging, sub-genotype, or il-28 genotype, just say so. : )
I wanted to address the patients sides;
"Patient just diagnosed with Hep C Genotype 1. Has joint aches, body aches, extreme fatigue, insomnia, depression, feels like feet are swollen and painful. Doctor said these symptoms aren't from diagnosis and dismissed his complaints."
Pooh and I agreed on many of these things, in her post and my subsequent first post which followed hers
"He appears to have a lot of extrahepatic manifestations of Hepatitis C so, if there are no medical reasons for him not to treat, treating sooner rather than later is most likely a good idea. "
And I agree with that notion too, particularly when the patient also is interested in treating sooner...... but.......
Are the medical reasons for a patient to wait?
Well, here are a few;
Depression...... interferon is counter indicated for depression, it at minimum adds a whole new level to consider, particularly longer treatments with IFN.
Some of the symptoms *could* be RA or auto-immune issues, which could get worse with treatment, or which could be triggered into full blown issues with treatment or mere exposure to IFN
" feels like feet are swollen and painful." Hmmmmmm if the liver is "normal", whatever that means, I am less concerned about advanced staging issues,.......but he could be suffering from neuropathy due to inflammation. What is going to happen to that early neuropathy when you put the patient on victrellis, which is known for inducing even deeper anemia than SOC?
My feet were not that bad, but I still have neuropathy in my feet, but it was up past my knees when I stopped the riba, and I was on half dose at week 12.5 that would have put me barely into the victrellis treatment when I dropped. So what effect will an anemia inducing TX have on the current foot issues?
One other final issue....is the doctor..... the one who said none of these issues has to do with hep c, the one who said the staging was "normal" instead of providing a stage, the one who said treat now. Hey.... the doctor may be fine..... since this is all second or third hand information, but..... if I was treating and I had those many issues, counter-indications..... I would want the best doctor.
Flip side...... if your doctor isn't as great as some world class..... I would want a more simple course of medicine with fewer sides, because all doctors just are not equal.
This whole thread is just for information. You can see where I am coming from. It's fine with me if others disagree. It's fine with me whatever the patient chooses. If the reader learns something, that's what it's all about.
Willy please do not put words in my mouth, I am cirrhotic and don't want anyone to risk that... This is what I said.... "Your friends does not want to become cirrhotic like I am"
"2 New drugs are about to be FDA approved that will not have black box warnings accompanying them (such as Incivek and Victrellis) "
Nobody, not even you know what warning the FDA might end up putting on these new drugs
"Neither of you yet know the patients staging, IL-28 genotype, the patients sub-genotype, (1a or 1b) and yet you seem to suggest it is imperative they treat now or face cirrhosis.'
Nor do you,
As for interferon and Ribavirin that's all some have talked about, just how bad they are. I'm sorry but if something is that bad or terrible then any is to much whether it's for 3 or 4 months or 6 or 7 months. You can't have it all ways here......... If somebody shots someone once or twice, they still have been shot...Correct?
Willy this is from your own words. Treatment was stopped on these new drugs. So how can you say there will not be any bad effects or FDA warning?
"Essentially as the trial progressed the neuropathy increased, but I was working so much I really didn't notice it for what it was. I mentioned it a few times, but I thought it could be due to the work, the long long days, the physical nature of my work; whatever, it kind of escaped my notice.
My feet were more sensitive and might keep me from sleeping..... but I thought it was maybe the riba just keeping me awake.
About mid point through my riba was cut in half; 1200 to 600 mg.
And things improved as I became less anemic.
I started complaining more about the issue, and I could also dismiss it less.
At about week 19 I work up with tinnitus, something I could not dismiss or think; this is something different than what it is. I also thought, I seem to possibly have two nerve related issues going on right now.
I asked about both.... in my week 20 blood draw and I thought made it very clear I was worried that these were both TX related and I wanted to know that they would reverse. I got no answer....
over the weekend the neuropathy clearly was working up my legs.
I asked a few doctor friends/clients who seemed to think I was correct, both in my diagnosis if ailments and the cause.
I stopped the drugs Sept 10.
I still have both issues."
I appreciate everyone's time and energy around this issue. I will continue to reread your posts to try to assimilate the implications. All I really know is he tested positive for Hep C, his ultrasound was deemed "normal", he is fatigued, achy and his feet continue to hurt. The doctor who dismissed his symptoms was his primary care doctor but he is now under the care of a hepatologist who offered treatment now or later. He mentioned something about the doctor checking viral levels at 4 weeks to see if clear so that is in line with what you have said. He already has tintinitus from being hit by an RPG, PTSD, insomnia and anxiety so it is hard to separate the symptoms from the causes. The analogy of throwing gasoline onto a fire is powerful. He is going to hear that as soon as he wakes up. Hope he listens at least to that. Again, thanks.
"Neither of you yet know the patients staging, IL-28 genotype, the patients sub-genotype, (1a or 1b) and yet you seem to suggest it is imperative they treat now or face cirrhosis. "
Willy, you need to carefully and thoroughly re-read my posts and quite (falsely) stating that I said things I never said. I never said he needs to treat now irregardless of medical problems, psychiatric problems, autoimmune problems, or liver fibrosis stage. What I said was this:
*He should see a competent Gastroenterologist or Hepatologist (liver doctor) who is experienced and knowledgeable in treating Hepatitis C.
*He should also get tested for his Genotype.
*He should also have a liver biopsy to determine what his liver fibrosis stage is. Once he knows what his liver fibrosis stage is, *****then he can better decide how urgent it is to treat.
*He appears to have a lot of extrahepatic manifestations of Hepatitis C so, ***** if there are no medical reasons for him not to treat,***** treating sooner rather than later is most likely a good idea.
Then I said:
*If he is Genotype 1, the current treatment is Interferon, Ribavirin, and a Protease Inhibitor.
*However, there are some new drugs that are awaiting FDA approval. They may be available early next year.
*The new drugs for Genotype 1 will still include Interferon and Ribavirin, and they will also include Sofosbuvir.
*In addition, there are other new drugs that are in the pipeline and may be available in the near future.
Then I said:
*If the symptoms he is having are extrahepatic manifestions, then some of them, or possibly all of them, may disappear after he treats and gets rid of his Hepatitis C. He needs to treat and get rid of the Hepatitis C in order to improve extrahepatic manifestation symptoms.
*He should be seen by a psychiatrist who can evaluate and treat his depression.
*it may be beneficial to be seen and evaluated by a Rheumatologist for his joint and body aches and his fatigue and feet pain. Hepatitis C can trigger autoimmune diseases and other diseases which can cause his symptoms.
*The feet swelling can be caused by many things so he should have that evaluated as well.
*Then I gave the OP the correct information about how long treatment will be depending on various factors.
*Then I reiterated the importance of knowing the liver fibrosis stage.
*Then I again stated how important it is to know liver fibrosis stage so he will know how urgent it is to treat.
In a later post you said there may be medical reasons not to treat. Well, my post covered that. Again, re-read my posts. I covered all of your concerns about medical problems and psychiatric problems.
Another thing, just because someone has a history of depression does not mean they cannot treat. I have a long history of endogenous depression, including one episode in 2011. I had just gone on antidepressants in May of 2011. That did not stop me from treating. I might add, that I had ZERO mental problems, depression problems, anger problems, etc. while I was on treatment. I sailed through treatment mentally and emotionally exceptionally stable.
Your said: "MY little story was to illustrate; THINK, and then act. Don't be impulsive. "
My posts absolutely never suggested being impulsive. They suggested getting thoroughly examined (for everything), evaluated, tested, and then making decisions based on all of the information to do so. Your post gave an analogy that has nothing to do with reality and, in my opinion, was used as a scare tactic.
This forum is here in order to try to give people facts and information and to help them with their diagnosis of Hep C and Hep C treatment. Trying to scare people away from treating is not, in my opinion, very helpful.
As another example of this scare tactic technique, in another thread, when I said I had started on Plaquenil, you immediately dug up and posted the 1 worst possible side effect that Plaquenil can cause (even though it is extremely rare). Well, that might have scared some people from taking a drug that can be immensely helpful to them. Of course, it did not scare me, but then, I am a medical person and I have a distinct advantage over many who are not. In addition, I have had some serious Hepatitis C related health problems/extrahepatic manifestations in my life and I know that some drugs can make the difference between living and dying. Choosing to live is a no brainer for me.
Maybe it seemed scarey, but all I posted were possible outcomes.
I feel no differently, that my words were used to portray something differently.
The thrust of what I said was get more information, choose carefully, the patient does not have enough info to make an informed decision, based on what I have read.
We are all different people, our thought processes are different.
If there are counter indications, drug warnings.....it's a medical forum......
expect that these will be discussed, and that both sides will be discussed, not only the benefits.
Regarding my friend who suffered from floroquinalone toxicity, only about 1/20 had the drugs prescribed as recommended by the FDA. Doctors at times do a dismal job of staying up on drugs that they prescribe. So often in antibiotics they are prescribed incorrectly.
If my attempt to warn you was taken as a scare tactic, please accept my apology. Someone else might have misinterpreted it quite differently.
Regarding the possible negative sides I have had..... I do not know if there will be a black box warning for any new drugs that are approved, but I heard (via gilead) that only less than 1% dropped out of trials. I believe that some of the triple therapy courses of treatment have had about +20% discontinuation.
In spite of my damage.....and I am nearly the only one I am aware of...... I can tell you that the sides and the damage may have been threshold pre-existing, or caused by another issue. Whatever they are, they are not that bad.....
.........because today I ran in a local 5k race, in spite of the fact I have not completely recovered from my treatment.
I did OK. In the actual race I beat last years time by about 20-30 seconds.
Last year my best time would have placed me in the top 25% of the finishers, and only about 30 people were older than me out of 1000+ 5K race participants. I'll have my hard data trial results tomorrow, but I would guess that I'm still in the approximate top 25%, that I'm very close to my best running time from last year, that I beat my race time of last year and twice I have come within 15 seconds of my fastest time from last year.
I think that is pretty impressive for a guy who had his HGB drop about 33% (17.3 to mid 11.'s in July). My last score was 14.5 about 5 weeks ago. You'll have to admit, most triple therapy people are not doing this 40 days after ending TX. : )
And so I assert; yeah, I got hurt...... but terribly. : )
I was writing this after I got back from the race..... and I thought I would see how I did so I went downtown to find out.
I don't have all the stats but I came in second in my age demographic.
I was 105th guy to cross the finish line. Last year there were about 500+ guys who ran.
I think that speaks a little bit about how gentle this treatment is compared to current triple therapy.
Yes.....I ended TX September 10 and finished second in my age demographic this year, October 20. (hahahhahaahah I'm 60 this year running in 60-64 years, that helps. : ) )
I have my reasons for believing what I believe, others have their reasons.
I actually think we agree on many points but cannot bring ourselves to admit it. : )
"I actually think we agree on many points."
Sorry, but I do not agree with you on much of anything. You are quite wrong on that point. You can draw conclusions for yourself, but please have the courtesy to refrain from drawing conclusions for me.
Hello, you have received excellent advice from every one. As you can see everyone cares very much and wants to help.
The first thing he needs to do is to have a biopsy. He can't really decide what to do until he knows how much damage he has.
When I was diagnosed, my blood work did not indicate how damaged my liver was.
So...I went from advice of "take your time, it moves slow" to "Oh my, you must treat asap"
Maybe you could print this out to give you your friend, or just take the important parts to give him.
You are a very good friend. I wish I had someone like you when I was diagnosed.
I felt very alone and isolated. In reality I was, no one I knew understood anything about hep c til Natalie Cole was diagnosed they had not heard of it. Even then it was a lot of misinformation. Don't even get me started on Pamela Anderson :)
"FDA said adding Gilead's sofosbuvir to the standard drug cocktail cured 90 percent of patients with the most common form of the virus in just 12 weeks.
The agency's reviewers state that the "shorter 12-week duration translates into a better tolerated side effect profile," adding that "no major safety issues associated with sofosbuvir have been identified to date."
Foster City, Calif.-based Gilead Sciences is one of a half-dozen drugmakers working to develop more effective treatments for hepatitis C, though many analysts predict the company's drug will eventually outperform its competitors. The FDA is expected to make a decision on the drug by Dec. 8. "
....."For most of the last 20 years, the standard treatment for hepatitis C involved a grueling one-year regimen of pills and injections that caused flu-like symptoms and cured less than half of patients. Then in 2011, the FDA approved two new drugs from Merck and Vertex Pharmaceuticals that raised the cure rate to about 65 and 75 percent, respectively, when combined with the older treatments.
J&J's new drug appears to raise the level of effectiveness again: simeprevir cured 80 percent of patients who had not previously been treated for the disease, according to the FDA. "
I admit to not fully reading all the replies so forgive me if I'm being repetitive.
The first thing anyone needs to know when considering treatment is how much, if any liver damage, they have. If there is none or little, than waiting for better treatment options or doing a clinical trial are good options.
As far as when these new meds will become available, nobody can see into the future ( including doctors) and all we can do is guess when the FDA will approve anything. My bet would be within the next couple of years but that is nothing more than a guess.
Here is some information about the new treatments, both were scheduled to be reviewed by the FDA by the end of this year. Not sure how the shut down affected them.
Armed with the information you have given me, I met with his hepatologist today to get questions answered in order to make an informed decision. My "awareness" helped me hone in on what I needed to know. It became apparent, waiting for the new protocols is the best choice for him. The provider was very forthcoming with information and pleased that I am taking such an active role in his treatment. Could not have done it without this forum. Feel so relieved. Now just waiting for the new medications to be released. Thanks!
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