Author Topic: Anxious about Starting Treatment (Read 60165 times)

David · « **on:** June 18, 2015, 10:46:49 pm »

Anxious. I am scheduled to have labs drawn at the VA next Friday, June 26, 2015. If everything checks out ok I am scheduled for group and individual class on Tuesday, June 30, and begin twelve weeks of Harvoni + Ribavirin that same day. My Ribavirin is weight based, of course, but my Pharm-D notes say that my Ribavirin may need to be adjusted because of my PTSD meds which are Buproprion HCL 200 MG 12 HR SA tablets and Buspirone HCL 10 MG tablets for depression and 45 10 MG Diazapam per month, 30 for sleep and 15 for anxiety. I have had PTSD as long as I have had Hep-C, but PTSD won't necessarily kill you, but HEP-C will. If it comes down to it, I'd rather do without my PTSD meds for three months than my full dose of Ribavirin, even though depression can be a monster in itself. Also, I read this statement in clinical trial results- "In all trials, Ribavirin did not increase response rates in the participants." This has me a little bewildered. I am sure I can ask about it in class, but I have my reservations about the VA. If any of you quite knowledgeable folks can clue me in, I would greatly appreciate your putting my mind at ease. Thanks.

lporterrn · « **Reply #1 on:** June 19, 2015, 11:25:26 am »

Hi David,
I am a bit bewildered too. I am not clear why ribavirin is being considered. Not only is it unnecessary (assuming I am missing your doc's rationale), it might not be the best choice with PTSD.

I am further confused by the pharm-D's notes - although it is wonderful when the pharm is looking over the doc's shoulders, I don't see why any of the drugs you mentioned would be a problem. At most, it might be a situation of timing the meds so there is a few hours in between, but I didn't see any of these listed. (http://www.hep-druginteractions.org/) And if ribavirin is out of the picture, then it will make things much easier.

Bottom line is I encourage you to find out if ribavirin is necessary, emphasizing the fact that you have PTSD

David · « **Reply #2 on:** June 19, 2015, 11:55:59 am »

Thank you, Lucinda. I am new at this forum thing, plus I'm having to use this stupid Kindle fire because Office Depot ruined my computer. If you don,t know, as smart as you are, then I'm truly lost. Hopefully someone else with some experience can help, as I certainly am not comfortable trusting the VA with my life. Maybe I would be better off to postpone my treatment until I know for sure. Again, thank you for your support.

lporterrn · « **Reply #3 on:** June 19, 2015, 12:29:43 pm »

The only reason I can think of adding ribavirin is if you had decompensated cirrhosis (do you know what this is David) or if you already had a liver transplant.

David · « **Reply #4 on:** June 19, 2015, 01:00:37 pm »

Lucinda, I have not had a transplant, and I am not sure what compensated cirrhosis is. I talked to a nurse via telephone after my last lab tests, which said that there was a 52% chance that I was in stage three or four fibrosis. She said that stage four was considered cirrhosis and that I did not have any cirrhosis or cancer, so I took that to mean I am in stage three, since the VA will not treat you until you are in stage three, according to my doctor. I must find out for sure, because I am not willing to risk my life based on assumptions. I have requested a call back from the pharmacy to try and clear this up. I will let you know what I find out, if anything. Any advice you can give me will be greatly appreciated and may possibly save my life. Thank you immensely.

dragonslayer · « **Reply #5 on:** June 19, 2015, 01:15:04 pm »

>>I talked to a nurse via telephone after my last lab tests, which said that there was a 52% chance that I was in stage three or four fibrosis.<<

David, what diagnostic procedure caused her to make this determination? ie, have you had a biopsy? Fibroscan? something else?

David · « **Reply #6 on:** June 19, 2015, 01:55:46 pm »

Thanks for you response, Dragonslayer. When I saw my G.I. or whatever she is, she told me to go to the lab for collection. All they did was draw blood, not even urine. I do not even know what fibroscan or fibrosure is. My only biopsy was done ten years ago, in 2005. At that time, a different doctor told me my liver damage was so minimal that if it was any less, it would not even be detectable, and to wait until something better comes along. I did not believe him, because when it comes to drinking, I was Marine Corps trained and up to that point had drank enough to float at least one heavy cruiser. He set me up an appointment with the chief of Hepatology, who told me the same. Something is seriously wrong with this picture and my life depends on finding out what it is. Thanks again for your concern.

dragonslayer · « **Reply #7 on:** June 19, 2015, 02:33:03 pm »

Ok, David.. Some of this you will know already, and some will appear redundant, so take this as general advice, and take from it whatever you can use:

I would think first, determine what kind of doctor youre seeing. Ie, PCP, Gastroenterologist, Hepatologist, Infectious Disease Specialist, etc. A PCP should be referring you to one of the latter 3 for HCV treatment.

Second, its important to find out the staging of your fibrosis. The gold standard for this test is a biopsy which is supposed to be done at 5 yr intervals. Nowadays, Fibroscan, fibrotest, fibrosure, etc, are often used as a noninvasive means to rule in or out cirrhosis, but they are not as reliable as the biopsy especially for detection of liver condition in the middle range. The condition of your liver generally needs to be demonstrated, not as percentage/odds based on nothing but labs and a 10 yr old biopsy, but on fairly recently performed liver staging tests such as those mentioned above... Generally, without this liver scoring, insurance will not cover treatment. Plus which, without it, the doctor wont be able to prescribe a duration based on current guidelines. Lastly, you will need to get a current viral load blood test before a a prescription can be filled.

This sounds daunting, but believe me, its not that difficult once you make your mind up to do it. And a doctor who's any good will guide you through what now appears like a labyrinth.

Best of luck David in moving forward.. Weve all been there, and believe me, it is doable!

David · « **Reply #8 on:** June 19, 2015, 05:28:25 pm »

Thanks, Dragonslayer and Lucinda. My PcP referred me to Hepatology and my doctor is a Gastroenterologist. I just talked to a clinic nurse at the VA. She could not answer my questions, but she promised the PharmD Doctor or the pharmacist who is handling my case would call me on Monday. As far as lab results go, I have a letter from my Doctor dated May 21 stating the following: Hep A antibody test-positive; Hep B antibody test- negative, we can discuss this on your next visit; P T / I N R- ok; Ceruloplasm- ok; HepaScore- ( this is a test that gives us some idea about how much scarring is present in your liver): 52% Probability of having F3-F4 fibrosis. When the pharmacist called after my last appointment to explain that we would have lab work done next Friday, and group and individual class the following Tuesday so as to have the most current results, I failed to ask her what tests would be performed. Only after having read my online records I saw that they were recommending Harvoni + Ribavirin. I don't know why the Ribavirin if it makes no difference, but I will be sure to ask about that and fibrosure and the others on Monday. When I talked to her last my notes had not been posted yet and I had yet to discover this forum. It has truly been a blessing to communicate with knowledgeable people who have been there; it helps tremendously to deal with the fear of the unknown. I am genuinely happy for you who have been cured, and I pray for those who have yet to do so. Sincerely, thank you all.

lporterrn · « **Reply #9 on:** June 20, 2015, 12:53:37 am »

David, At this point, it sounds like you are being well-cared for, despite the questionable ribavirin. Sometimes things get said, or put in to notes, but upon further investigation, it gets straightened out. The fact that you have enough info to ask them "why" is the most important part. I have a hunch this will all get straightened out as you go forward.

David · « **Reply #10 on:** June 20, 2015, 12:51:16 pm »

Thank you, Lucinda. I,m confident that your hunch is right. I should know Monday when the pharmacist calls. I have been a patient at the VA since the early 1980's, and I have learned from experience that there are two types of people who work there. There are the two percenters who are only there for a paycheck, who I have a very low tolerance for. Unfortunately, most likely due to my PTSD, this causes me to have trust issues. Then you have the vast majority who are there because they do care and are there because they truly want to help veterans. Sadly, sometimes it's difficult for me to distinguish between the two, as was the case going into this journey. I, however am convinced that these people belong to the latter group, if for no other reason than for their willingness to treat me. I know I must look beyond the first group and be thankful for the second group, just as I am for the good people on this forum, as they have given me much enlightenment and peace of mind. I am greatly indebted to both. I will be sure to post whatever I learn on Monday. I cannot express how grateful I am for all of you.

David · « **Reply #11 on:** June 20, 2015, 11:43:36 pm »

Dragonslayer, I forgot to mention that about five years ago I did ask my Pa if it wasn't about time for another biopsy. His response was " As long as your liver enzymes are in the normal range there is no need to stick your liver." I suppose there are different ways to look at this reasoning, but since there was only interferon at the time, and I had seen the hell that my dear friend suffered with nine months of interferon before he was forced to abandon that course of treatment due to his platelet count, I reluctantly agreed with his logic. I suppose it is a moot point, now since I haven't seen my name in the obituaries yet, I guess I am still alive. I will post whatever I learn on Monday when I talk to the pharmacist via telephone. Thanks for your advice.

lporterrn · « **Reply #12 on:** June 22, 2015, 01:10:35 pm »

Hi David,
I know you are busy with your appointment today, but when you have time, you might like this story: http://www.hepmag.com/articles/veterans_cured_hepatitis_c_2502_27397.shtml
I thought he wrote well, and extended such hope.

David · « **Reply #13 on:** June 22, 2015, 02:51:05 pm »

Thank you,Lucinda. This article brings me much comfort, especially knowing I have the advantage of Harvoni. I go for my pre- treatment labs to be drawn on Friday, with group and individual class on Monday, a week from today with treatment starting the same day, God willing. I have been waiting all day for the pharmacist who is handling my case to call so I can ask about the Ribavirin. I consider this journey to be the chess game for my life, in that I cannot make a move unless it is beneficial to me, as there is always the possibility of a bad decision being detrimental. It would be a dark and lonely journey indeed without the support and advice from you and the others on this forum. Words are not sufficient to express my gratitude, all I can say is thank you all. God bless you all.

David · « **Reply #14 on:** June 22, 2015, 03:14:20 pm »

Sorry about the double posting. Trying to use this Kindle is almost as bad as the hep-c. Like me, If something doesn't' change soon it will not survive much longer.

lporterrn · « **Reply #15 on:** June 23, 2015, 06:47:46 pm »

LOL - hep C and social media are opportunities for great embarrassment. I don't even have hep C to blame anymore - now I pull the gray card

David · « **Reply #16 on:** June 23, 2015, 08:52:58 pm »

Hi,Lucinda;
Being somewhat of a hick, I'm not completely sure what the gray card is, but if you're referring to your hair, if you'll pardon me for saying so, it, like you is beautiful.
I got my computer back today, after much ado and I talked to the pharmacist in charge of my case today via telephone and I wanted to let you know what she said, at least what I can remember of it. I explained to her that I was concerned about the Ribavirin and it's side effects, specifically nausea. I told her that I did not want to be regurgitating $1100.00 pills. She said not to worry about that, because they dealt with that all the time. She said it was not a big deal, they would give me something for it.
I also discussed with her my concerns about what I had read about clinical trials and the statement that said, " In all trials, Ribavirin did not increase response rates in the participants." I told her I was wary of taking anything that did not show a clear benefit, as there was the possibility that it could interfere with the Harvoni. She said it was good that I had a support mechanism in this forum, and it was good that I had done some research, but there had been many more trials done, and it was shown to be beneficial, as to me seems to be supported by your signature. She said that her logic was that they wanted to attack the virus with everything they could so as to insure success, but that if I was uncomfortable with taking it, then I didn't have to. I told her no, she was the expert and if she told me to eat a cowpie every day for twelve weeks, if it would clear the virus, I would be happy to oblige her. I asked her about the extent of my liver damage, and she began quoting percentages which I cannot begin to remember, but ultimately she said the test they used, Fibroscore, usually gave results on the high side and even though it said there was a 52% probability that I was in stage three or four, it was more likely that I was a high end stage two.
I asked her if my viral load of nearly twelve million was something for me to be concerned about. She said, no, that she had seen viral loads as high as twenty million become undetectable at the four week mark, and that she expected I would be as well and that would give us two more four week periods to be sure.
I am skeptical by nature, but if what she says is true, then it sounds like good news. I have a lot to be thankful for. I have my computer back, the comforting support of the wonderful people on this forum, the VA and the news I recieved today, and clearly, the love of Jesus. I have to say that today has been a good day. I am certain I will sleep well tonight. I thank you all more than I can say.

lporterrn · « **Reply #17 on:** June 23, 2015, 09:53:27 pm »

Well, all in all, she sounds wonderful and supportive, and like she is in your corner. If she has research on the value of ribavirin, I haven't seen it, nor do the HCV guidelines use them. This is not to say that she is wrong. I'd probably do exactly as you are doing, but I might ask for the evidence (the studies).

Also, I don't do nausea well at all and it really wasn't an issue for me when I took ribavirin with Harvoni. It was a huge problem with peginterferon, so like you, I was concerned. However, I had other side effects. They were gentle in onset, and really didn't kick in until at least 4 weeks, so all in all, it wasn't too bad. Good side effect management is the key.

David · « **Reply #18 on:** June 23, 2015, 11:41:03 pm »

Lucinda,

After reading Kim in the forest thread, I am seeing that hemoglobin levels seem to be a concern as far as Ribavirin dosing is concerned. It seems that maybe the pharmacist mentioned today that mine is in the low normal range. this does not make sense to me since I am diabetic and my hemoglobin A1C is around 7.3. It's getting late here and the VA records site is down for maintenance and I cannot access my records until tommorow. Also, platelets seem to be a concern with Ribavirin. At last glance earlier this evening, I believe mine were around 208 on may fifth. I could be mistaken about this count, but I will check my labs again in the morning and get back to you. I would very much like to know your thoughts on these complications and your opinion on the subject of Ribavirin. Also, I try to walk at least a mile at least three days a week, but I wonder now if I will be able to during treatment. I will post again tommorrow. Thank you.

KimInTheForest · « **Reply #19 on:** June 24, 2015, 12:59:10 am »

Hi David. Ribavirin does seem to produce some degree of hemolytic anemia in nearly everyone. (I.e., your red blood cell blow up faster than your bone marrow can manufacture new ones.) This will result in a lowering of your hemoglobin and red blood cells while on treatment. Some people drop below what is considered acceptable and safe, and those people are then dose-reduced (i.e., told to take less ribavirin each day) or in some cases taken off it altogether. However, lots of us do not fall that low, and are not dose-reduced.

I am now into Week 8 out of 12 of Harvoni+Ribavirin, and I am finding the whole thing quite manageable. No real problems. Yes, I get out of breath easily if I climb a hill or even a flight of stairs some days. And that is because of low hemoglobin. But I am leading my normal life, doing my normal work, I am happy and not experiencing any discomfort. The only persistent Ribavirin side effect I have had has been a dry cough, which is a pain in the butt but controllable with Ricola cough drops. And the pay-off at the end will be totally worth it. That's what we all need to remember and not get too caught up in anticipating and stressing over possible side effects. Everyone responds differently to these drugs. Go into it with an open mind and optimism.

I have felt a great increase in my energy and mental clarity since about Day 5. I had a viral load of 4 million at the start, and it had dropped to just 130 by end of Week 1, so no wonder I had more energy and mental clarity. By Week 4, I became undetected, which is typical with Harvoni. I am very much hoping and expecting to achieve SVR12. In New Zealand's ELECTRON-2 trial of exactly the same profile and parameters (treatment-naive Genotype 3 people on 12 weeks of Harvoni+Riba), the cure rate was 100%.

All the best to you in you journey to being cured, David!

kim

lporterrn · « **Reply #20 on:** June 24, 2015, 02:01:31 pm »

Hi David,
Kim summed it up for me. Also, I wouldn't worry about platelets and ribavirin. Even if they dropped, they'd have to drop a lot before it is an issue. Mine went up during treatment, and now that are over 300K (from 180K).

Hgb is a different issue, and not to be confused with your A1C - usually the diabetes-related tests improve on treatment.

Of all your concerns, I am most troubled by the PTSD. Good support is essential.

David · « **Reply #21 on:** June 24, 2015, 03:20:31 pm »

Thank you both very much. I called Gilead and talked to a nurse and she told me that Ribavirin made absolutely no difference, but other than the comment about the clinical trials I read, she is the only one who told me that. Apparently it helped the both of you, and I am sure I'm not the VA Pharmacist's first case. I certainly won't make a decision based on what one person told me when three other people have told me from experience that it helps. My daddy used to say " Old lady experience is a hard teacher, but you don't forget the lessons." Between the hep-c, the chonic and severe PTSD and these potential race wars here in Columbia, South Carolina because of those killings in Charleston and the fact that every media outlet including the BBC is driving it in the ground, it's a wonder I'm sane at all. I forgot to ask Gilead about the PTSD, but I will call them back and let you know what they say. For the money they are making from this, they can tolerate a little agravation from me. Thank you both for your valuable support, and Kim, I will be praying for you to achieve a full and permanent SVR.

David · « **Reply #22 on:** June 24, 2015, 04:01:39 pm »

I just talked to Gilead again, who passed me off to some manufacturer of generic Ribavirin, who, not surprisingly couldn't or wouldn't give me any specific information. From what I have seen and heard so far, there seems to be more pros than cons in favor of Harvoni + Ribavirin. I am sure I'm not the first patient with PTSD to be treated at the VA, so it seems my only option is to stay in control until Tuesday when we have our class and take things one day at a time and not get overwhelmed. Thank you all, sincerely.

KimInTheForest · « **Reply #23 on:** June 24, 2015, 04:12:29 pm »

I think that is the key, David. Like you said: stay in control, take things one step at a time, don't get overwhelmed.

I will be eager to hear how things go for you. Best of luck.

kim

motor · « **Reply #24 on:** June 24, 2015, 04:23:05 pm »

David, I often wondered how you have fared. Good to see you've got the attention of the site's most helpful posters.
You seem to be following same protocol I experienced. The VA has a team that gets you through your treatment. They have a ton of data backing them on what's working for different situations.
At same time you'll be in your orientation class, I'll have a follow up appt with a team nurse. I'll ask her about your deal. The only difference I see is treating stage 3 and I was told stage 2 as threshold.
Every one is different, but the Harvoni was a walk in the park with no side effects for me. I'm happy for you that your treatment is getting started. I'm confident you're in good care.

KimInTheForest · « **Reply #25 on:** June 24, 2015, 04:24:51 pm »

Hi again David. The one thing I think you really want to pin down is exactly what stage of Fibrosis you are at. [edited] Lucinda and I each got (or am getting, in my case) our Harvoni+Riba through a clinical trial, not a doctor's prescription. And that was nature of our 2 trials: Harvoni+Riba. Choice of drugs is not an option with a trial. In my case, as a Geno 3 person, I actually need the ribavirin added to have maximum chance of success. But that is geno 3.

If you are Geno 1, treatment naive and do not have cirrhosis (i.e. are not at Stage 4 fibrosis), then I have a feeling ribavirin does not improve your chances of a successful outcome. I think your chances of being cured with Harvoni alone are very high with the profile I just described, if that is you. I hope others here will correct me if I am wrong.

So staging your fibrosis accurately would appear to be the missing piece of the puzzle.

Wellness to all,
kim

David · « **Reply #26 on:** June 24, 2015, 04:51:10 pm »

Thank you, Motor, Kim and Lucinda. You are all very kind people and your support will get me through this. I will definitely keep you posted. Tons of gratitude to all of you.

lporterrn · « **Reply #27 on:** June 24, 2015, 06:22:11 pm »

David - I need to clarify big time. I agree with what you were told by Gilead, ribavirin makes no difference. I am sorry if I didn't make that clear. The ONLY reason I took it was because I was in a clinical trial. I'd never take it now if I was facing treatment. I think the data is clear, but I am not your doctor, and this decision is between you and your medical team.

KimInTheForest · « **Reply #28 on:** June 24, 2015, 06:32:49 pm »

Sorry if I mis-stated anything about your situation, Lucinda. I made a slight edit to my post to simplify what I had written earlier.

best,
kim

David · « **Reply #29 on:** June 24, 2015, 10:59:10 pm »

Kim and Lucinda, please don't worry about a simple misstatement. All of your guidance is greatly appreciated. This is simply a process to collect all the information I can before I decide, and I still have almost a week to do so. Were there parallel trials done with Harvoni alone? If so, how do they compare? The very reason I waited ten years for treatment is so as to avoid any bad side effects. I saw the hell my best friend went through with Interferon and Ribavirin for nine months before being forced to abandon treatment because of his platelet count. So close but yet so far. One nurse has already told me that I have no cirrhosis or cancer, and my treating pharmacist told me yesterday that the HepaScore test usually gives results higher than they actually are. All the information I have on Rivavirin seems to indicate that it does have some fairly serious side affects, including the statement I read on trials, the information I got from the nurse at Gilead today and what I have learned here. The nurse at the company that Gilead transferred me to about the effects of Ribavirin in cases where PTSD is concerned couldn't give me any useful information because, I believe, that patients with PTSD only make up a small percentage of the civilian population who participate in clinical trials. I doubt if any trials have been done on this particlar group exclusively. My pharmacist has alredy stated in my record that my Ribavirin dosage may need to be adjusted because of my PTSD meds. The last two things I want to do is to start taking medication that I may have to stop taking mid stream simply because of the possibility of mutation, viruses are tricky that way. And I certainly don't want to take anything that could interfere with my PTSD meds and possibly lead me into that dark abyss of PTSD and suicidal ideations again. It's bad enough with treatment, and people who haven't been there can't possibly know the personal hell it can be. I have been following the introduction of direct acting antivirals since long before the first pill was pressed, and I have always heard that when it becomes available, it will be all you need. Nothing lives forever, and if a virus can't reproduce, it cannot possibly proliferate and carry on it's existance. I believe you were spot on, Lucinda, when you said I should ask for evidence, ie. clinical trials that show the good outweighs the bad. I truly believe that my best course of action is to try and keep my anxiety under control and learn all I can about it, and have a heart to heart discussion with my phamicist about my concerns at orientation on Tuesday before I make my final decision. If I rush to judgement, it could possibly be the last decision I ever make. I am not medically trained, but it is my life we are talking about. I greatly appreciate all the advice you all have given me and I hope you will continue to do so, but ultimately I have to make the final decision based on what I know. I thank you all immensely.

KimInTheForest · « **Reply #30 on:** June 24, 2015, 11:10:56 pm »

In the case of New Zealand's ELECTRON-2 trial on Genotype 3, treatment-naive people… those who got 12 weeks of Harvoni+Ribavirin had a 100% cure rate. Those who got 12 weeks of Harvoni alone only had a 64% cure rate. But that is Genotype 3, and does not apply to you David. Genotype 3 is especially hard to treat and cure - it needs more help.

From everything I can recall reading (and perhaps Lucinda and others can add more or correct anything), for Genotype 1 people without cirrhosis, I believe 12 weeks of Harvoni alone was the same as 12 weeks of Harvoni with Riba - above 95% cure, if I am not mistaken. However, what I cannot recall is if treatment-experienced Geno 1 people who have not been successful at previous therapies need to add Ribavirin to Harvoni for better results. I DO know that Geno 1 people with cirrhosis (i.e. Stage 4 fibrosis) are supposed to have either 12 weeks of Harvoni+Riba or 24 weeks of Harvoni alone. They need more help.

best of luck and keep us posted,
kim

lporterrn · « **Reply #31 on:** June 24, 2015, 11:12:57 pm »

David,
Yes, there were parallel arms, and they showed that ribavirin did not increase efficacy, and it did increase side effects. Basically, look at the package insert for Harvoni, and http://www.hcvguidelines.org/full-report/initial-treatment-hcv-infection

Here is what distresses me - not just that ribavirin is being offered, but it puts you in an awkward position - of having to consider whether to override your obviously caring medical team. They are the experts, and I keep hoping they show you the evidence. For your sake, I want to be wrong. If I were in your shoes, there would be the "what-ifs?" The what-ifs are very painful.

I have PTSD - I am tough - I went through 3 treatments. Honestly, I could do it again, but I hope I never have to take ribavirin for anything ever again.

David · « **Reply #32 on:** June 24, 2015, 11:37:18 pm »

This is the kind of advice I need, and I hope you will continue to do so. Thank you both for your compassion.

David · « **Reply #33 on:** June 25, 2015, 01:20:35 am »

Lucida, I read the geno 1a section of you link, and from what I can deduce, there is hardly any difference in results in treatment naive or experienced, regardless of their state of liver damage with or without Ribavirin. I have not read the package insert for Harvoni, but I will at my first opportunity. I wondered why you were so concerned about my PTSD, now I know you are speaking from experience concerning this matter. I am very sorry to hear that you too have PTSD. Now I am really concerned about the side effects of Ribavirin. If it is not too personal, could you please explain to me the effect it had on your PTSD and why you say you hope you never have to take Ribavirin again. If I am out of line in asking, please forgive me, but this information seems to be exactly what I need to know, and it has me very concerned. Again, please forgive me if I am out of line. Thank you.

David · « **Reply #34 on:** June 25, 2015, 01:52:10 am »

Lucinda, never mind the side effects of ribavirin, I just read the endless list of nasty side effects on drugs.com. It seems to me that the side effects very much outweigh the benefits. I can't say for sure until I talk to my pharmacist in depth, but I think I have made my decision on Ribavirin. Drugs.com did not list side effects concerning PTSD, and this concerns me. I do not want to go there again. Thank you.

lporterrn · « **Reply #35 on:** June 25, 2015, 02:39:39 pm »

No question is out of line here. Trust me, if I don't want to answer something, I won't.
Although PTSD is not specifically addressed in the info, here are the psychiatric sides:
Irritability/Anxiety/Nervousness
Insomnia
Depression
Concentration impairment
Mood alteration

Here is what is well-known and not specifically spelled out: patients call it riba rage (medically it is called Irritability). I am told that I am one of the most laid back people my friends know. On ribavirin, my temper was easily triggered. The insomnia didn't help. As a nurse, I saw it a lot. I had to pull a patient off of treatment because of road rage - he chased a guy with the intention to ram his truck in to the other car because he felt the other guy went ahead of him at a 4-way stop.

I got smarter the last time I was on treatment, and I took ativan. This was a huge help, but the decision was not one I entered in to lightly, since I am in recovery. However, I worked with my medical team and recovery sponsor to be sure I didn't trigger a relapse.

Like I said, I could do it again, but I'd rather not. BTW, I've written 2 books on managing HCV treatment, so there is tons of help for you if you do decide to go that route.

If I may be so bold, I hope you make the decision based on evidence, response rates and AASLD recommendations, and NOT on fear on side effects.

David · « **Reply #36 on:** June 25, 2015, 05:54:20 pm »

Thank you so very much, Lucinda.
In order to defeat your enemy, you have to know your enemy. I have read the prescribing information for Harvoni, the ION 3 clinical trial results, which, as you know, applies to treatment naive non cirrhotics such as myself. They don't highlight it or print it in bold writing, but they do state that the results of treatment with Harvoni are the same with or without Ribavirin. I have read all three ION trial results and they all seem to say the same thing, regardless of treatment duration, stage of progression or cirrhosis. I have seen this statement made in several different places throughout the course of my research. I however have not once seen it written anywhere that Ribavirin increases positive results at all, let alone ANY overwhelming evidence of the same. I have printed these results and also four pages of very ugly potential side effects from Drugs.com. I just finished speaking at length with a very nice gentleman named Steve Jackson with the FDA. He looked at the ION 3 results and the side effects and agreed that there is not any evidence to suggest that the benefits of Ribavirin overwhelmingly outweigh the potential side effects, which, after reading the side effects, I have pretty much decided that this is what it would take for me to decide to go the Ribavirin route. Thank you M'am, but no thank you, M'am.
I have very little fear, ( concern, maybe) and I do not make decisions based on fear, I make them based on all the information I can gather on the matter. Like Mark Twain said," Courage is not the absence of fear, but the mastery of it." I will go into my meeting with my pharmacist with an open mind, but I also know that too much of a good thing can be a bad thing. We know very little about viruses except that we know very little about them and that they can mutate at the drop of a hat.
I have pretty much concluded, based on what I have learned from you and the good people on this forum, my conversation with Mister Jackson and what I have read that taking the Ribavirin would be akin to shooting my foot to get rid of a headache. I already have a very short temper and have said and done some things that I shouldn't have, as well as having, as you know, some pretty ugly manifestations of PTSD, which I, by no means wish to agravate. I might be a hick, but I do not believe I am a stupid hick. To make a decision such as this out of sheer desperation would be very stupid. I do not want to, as they say, "upset the applecart" by starting on a treatment that I very well may have to reduce or abandon altogether, giving the virus any opportunity to mutate. I know that my pharmacist's recommendations are based on good intentions, but I also know that the road to hell is paved with good intentions. I believe that to forgo the Ribavirin, based on what I have learned is a no brainer. Please correct me if I am wrong.
I thank you and the good people on this forum infinately.

lporterrn · « **Reply #37 on:** June 25, 2015, 06:18:20 pm »

I admire your process, and I hope we'll be celebrating your cure in the fall.

David · « **Reply #38 on:** June 25, 2015, 07:07:06 pm »

Thank you, Lucinda, for everything.

lporterrn · « **Reply #39 on:** June 25, 2015, 08:55:52 pm »

You are most welcome. BTW, I just read this in the latest Hepatology (AE means adverse event):

Quote

Conclusion: LDV/SOF plus RBV was associated with a greater incidence of AEs as well as concomitant medication use than LDV/SOF alone. Use of RBV did not impact the efficacy of LDV/SOF regimens in the ION phase III studies. (Hepatology 2015;62:25-30)

From: Safety and tolerability of ledipasvir/sofosbuvir with and without ribavirin in patients with chronic hepatitis C virus genotype 1 infection: Analysis of phase III ION trials
Authors: Saleh A. Alqahtani, et al.

David · « **Reply #40 on:** June 25, 2015, 09:51:22 pm »

Thanks Lucinda,
This is great ammunition to bolster my argument. BTW, I forgot to mention that the VA Hepatology clerk called today to ask when I wanted to schedule my next appointment with my GI. I told him anytime was fine. He said how about July second, I said that would be fine. Interesting. Two days after I start treatment. I would think she would want to see me BEFORE I start. Miscommunication? After all I am dealing with the VA, who are not exactly on the top of my confidence list. Maybe I should check with them when I go for labs in the morning. I will keep you posted.
Many Thanks

KimInTheForest · « **Reply #41 on:** June 25, 2015, 10:47:01 pm »

Good luck, David! Sounds like you are on the right path.

kim

David · « **Reply #42 on:** June 25, 2015, 11:19:15 pm »

Thanks for your support, Kim. It has been a great source of comfort. I pray for your continued SVR. Please keep me posted.
Thanks
David

lporterrn · « **Reply #43 on:** June 26, 2015, 02:26:32 pm »

Sometimes an emoticon says it best. The GI AFTER you start treatment? Yikes.

David · « **Reply #44 on:** June 26, 2015, 05:49:18 pm »

Hi Lucinda,

Sometimes it seems the older I get, the less I understand. I have a letter dated May fifth, which is the day I saw her last. Reading from my VA records, the last time I saw her before this last visit was on 04/04/2005 with an addendum dated 04/12/2005 about scheduling a biopsy. Prior to this I saw a Doctor Mouratev on 09/10/2004 who ordered an ultrasound be done in preparation for a biopsy. I saw Doctor Mouratev again (exact date unknown) sometime before my 04/04/2005 appointment with Doctor Siddiqui (who I am seeing now). He said, " I've got some good news and some bad news. The bad news is they did the ultrasound on your kidneys, but not your liver, so we have to repeat the test. The good news is there's nothing wrong with your kidneys!" On June 02, 2005, an ultrasound guided biopsy was done at a civilian hospital. On 06/29/2005 we discussed the biopsy results. He told me if my liver damage was any less, it wouldn't even be detectable. He reccomended that I forgo the interferon and wait for something better to come along. With my confidence in the VA already shaken, I told him that was impossible and I did not believe him and that I wanted another biopsy done. After a brief discussion about Article One and "First doing no harm", he scheduled me a second opinion with the chief of Hepatology, who concurred. I might add that these appointments were all conducted based on lab results from March twenty- fourth, 2005. After my May fifth appointment with Doctor Siddiqui, I got a letter from her saying that I would get an appointment to see PharmD, and to come back and see her. The scheduling clerk Called this past Wednsday and told me I needed to make an appointment with Hepatology, I told him that when the PharmD Pharmacist called earlier in the month she told me I was to have labs drawn today, June 26, 2015 and would have group class and individual counseling on Tuesday, June 30, 2015 and after that they would give us our meds that same day. I took this (and still do) to mean treatment would start on the 30th, or at least the first of July. He said no, he meant with Doctor Siddiqui. I told him any time was fine with me, if something came up, I would call. He said," How about July second?" I told him that would be fine, but upon reflection, I wondered if it might be better to see her before I started treatment. So, after I got home from the lab this morning I called and asked him about it. He said that he didn't know but he would check. After he came back, he said she said after I start my treatment would be fine. So, please don't ask me to unravel this can of worms, because clearly you know more about it than I do.

Many thanks for your concern,

David

lporterrn · « **Reply #45 on:** June 26, 2015, 08:25:02 pm »

Oh, I think I am just as confused as you are - and basically, you summed up modern healthcare!

David · « **Reply #46 on:** June 26, 2015, 10:16:16 pm »

Hi Lucinda,

Sorry I didn't get right back to you. I was exhausted and laid down for"just a little while" and it turned into four hours. It's now after ten o'clock on the east coast. Who cares about circadian rhythms, right. Thank goodness for diazepam.
Like they say, sometimes the only reason I stick around is to see what happens next. I'll let you know.

Thanks,
David

David · « **Reply #47 on:** June 30, 2015, 08:47:44 am »

Today's the day! Class at 10:00 (E.T.). Meds to follow.

David · « **Reply #48 on:** June 30, 2015, 02:03:12 pm »

I got my Harvoni today and start tommorrow at noon. And NO RIBAVIRIN!!! Prayers and fingers crossed!

lporterrn · « **Reply #49 on:** June 30, 2015, 05:32:25 pm »

I am delighted. Hope we will be celebrating your success.

KimInTheForest · « **Reply #50 on:** June 30, 2015, 07:29:11 pm »

Quote from: David on June 30, 2015, 02:03:12 pm

I got my Harvoni today and start tommorrow at noon. And NO RIBAVIRIN!!! Prayers and fingers crossed!

Well done, David!! Wishing you the very best on this journey.

kim

David · « **Reply #51 on:** June 30, 2015, 09:44:59 pm »

Thank you both, Kim and Lucinda, for your kindness, your compassion, and most of all for your support. You are both on a very noble mission, and you are helping save the lives of more people than you will ever know, let alone immeasurable suffering. Never let up.
I do not believe the Lord has brought me this far and to this forum only to let me down now. I will keep you posted.

I cannot express my full gratitude, so I will just say, thank you both. David

lporterrn · « **Reply #52 on:** June 30, 2015, 10:31:56 pm »

Well, that is one of the best thank yous I've ever received, and you are quite welcome. Now go and defeat this dragon!

David · « **Reply #53 on:** June 30, 2015, 10:35:04 pm »

Yes Ma'm.

KAL · « **Reply #54 on:** June 30, 2015, 10:55:26 pm »

CONGRATS DAVID !!!for starting the journey....treat yourself well , stay hydrated , and conquer !

David · « **Reply #55 on:** June 30, 2015, 11:03:43 pm »

Many thanks, KAL. I've been waiting for this for ten years. Many thanks. Best of luck and God's speed to you.

David · « **Reply #56 on:** August 09, 2015, 01:07:52 am »

I just got back from a two week camping trip where cell phone and Wi-Fi service was practically non-existent, so I wanted to post this little update.
I started on twelve weeks of Harvoni last month, July, 2015 taking my first pill on the first day of the month. This put my four week viral load test on the twenty-eighth. Since I was leaving on my long planned trip on the twenty-third, the pharmacist said it would be O.K. to come in on the twenty-first for my viral load test and consult, and pick up my second bottle of twenty-eight pills. I offered to come back to town on the twenty-eighth, but she said, no, it would be O.K., that it would tell us what we needed to know. I was a little apprehensive, because I would think they would want the results from the first twenty eight days before they handed me another $30,000.00 worth of pills. She said it didn't matter, that they were going to treat me for the entire twelve weeks, anyway, and she was confident the results would be good. She said that it was a sophisticated test and they sent them to an outside lab and it would take a little more than a week to get the results back and I could call after the twenty-eighth and get the results, if I was in cell phone range, which I made a point of being.
My baseline viral load at the beginning of treatment was fourteen million, five hundred thousand Iu/Ml. When I called the nurse the next week, after the normal identification questions, she told me my results were twenty-five. I said " Twenty-five thousand?" She said, no, "Twenty-five international units per milliliter." I was stunned. All I could say was, " Well! If I had waited another week, I might have been undetectable!" She said I might have been, and probably would be at the eight week mark, (Knock on wood). I will be at the six week mark on Tuesday of next week, eleven August, 2015, the half-way point. The only side effects I have noticed has been during my third week when my pre-treatment fatigue and headaches began to disappear. Other than a four or five day bout with a stomach virus that I have pretty much recovered from, I still experience joint and muscle pain that also were pre-existent. Aside from that, I can only say that It appears the Good Lord has bestowed yet one more miracle on me. (Knock on wood).
I am very grateful to and for the V.A. and the support and knowledge I have gained from this forum. I will keep you posted and in my prayers. I wish you all the best.
Thank You All,

David

Scoutdoy · « **Reply #57 on:** August 09, 2015, 01:48:26 am »

Hi David,,,congrats on getting the Harvoni. I started mine on July 27. My viral load was 13.9 million. I don't know what to even expect on my first 4 week blood test. Other than a slight headache the first couple of days I have really had no side effects to speak of. I am sooo ready to get this beast off my shoulders though. I hope your next test shows you are undetected. Good luck

Scout

David · « **Reply #58 on:** August 09, 2015, 11:49:50 am »

Hi Scout,

Thanks for your reply and well wishes. I am glad that you got started. That, in itself is a great relief. As for your four week V.L., I feel confident you will be pleased with the results. My pharmacist told me at the start that, even with a V.L. as high as mine, there was a good chance that mine would be undetectable at four weeks. She said that most people are, and that she had seen people with viral loads as high as twenty million come back undetectable in four weeks. Had I waited the full four weeks instead of just three, I am confident that I would have, but I am extremely pleased with the status quo, and I believe you will be too. I think the worst part is the waiting and the anxiety. Achieving a good result on your four week milestone will be a great relief and confidence builder. Remember, you still have at least eight more weeks of treatment left. Take your medicine on time every day, eat right, don't drink or drug, rest and stay hydrated, and keep the faith. And don't waste time or energy worrying. It never helps, it only makes things worse. I wish you the best and will pray for your full SVR.

Sincerely,

David.

dragonslayer · « **Reply #59 on:** August 09, 2015, 02:23:28 pm »

A few of us were NOT undetectable at 4 wks, or even 8 wks on-treatment. At EOT I was detected 29. It wasnt until 12 wks post treatment that I achieved Undetected.. It varies for a lot of us, but by 12 wks post, somewhere around 95% of us will achieve SVR.

Scoutdoy · « **Reply #60 on:** August 10, 2015, 12:32:01 am »

Thank you both for the words of encouragement. It really means a lot, especially since I haven't seen anyone with a higher viral load than mine on the forum. It honestly kind of worried me. I am very anxious to see my 4 week results and they are still several weeks away. I will be happy with any drop at this point. I will say one thing, and it may just be in my head, but my joints have quit hurting as much, which has been excruciating the last few years, and my fatigue doesn't seem quite so bad. If it is just in my head I am ok with that too...LOL....

Scout

David · « **Reply #61 on:** August 10, 2015, 11:59:36 am »

dragonslayer,

Thanks for your reply and posting, as I should have mentioned, that not every one has identical results. There is the possibility that I could still be detectable at the eight week mark. I suppose I should consider myself lucky to have received the hope and encouragement that I did at three weeks, but as we all know, "It ain,t over 'til it's over." I can't imagine the disappointment you must have gone through, but I am very glad you achieved your twenty four week SVR. It is like the last lap of a race, it is the only one that matters, and we all need to view this from the proper perspective. Thanks again, and I wish you all the best in your future endeavors.

David

lporterrn · « **Reply #62 on:** August 10, 2015, 03:13:22 pm »

You are correct David, but even if you are detectable at the end of treatment, you will likely be cured. Enjoy the moment of hope.

David · « **Reply #63 on:** August 10, 2015, 09:14:49 pm »

Thanks, Lucinda;

Coming from you, I find great comfort in your words.

David

David · « **Reply #64 on:** August 25, 2015, 08:16:22 pm »

I went to the V.A. for my eight week class and lab results this morning. I just wanted to post these numbers:
ALT-18
AST-16
VL- Undetected
I start my last twenty-eight Harvoni pills tomorrow. The rest is up to the good Lord. Many thanks and God's speed to all. I will keep you posted.

KimInTheForest · « **Reply #65 on:** August 25, 2015, 08:19:00 pm »

Well done David!! And good luck on the rest of the journey.

kim

lporterrn · « **Reply #66 on:** August 25, 2015, 10:16:59 pm »

I am ecstatic David! That looks so promising!

David · « **Reply #67 on:** August 25, 2015, 11:09:03 pm »

Your numbers aren't bad either, Kim. Best of luck and God's speed to you. We will know in October and December. 2015 might turn out to be a pretty good year after all. Many thanks to you and to you, Lucinda, for your continuous support.

Bree · « **Reply #68 on:** September 12, 2015, 07:41:06 pm »

Oh, how I wish I had seen this thread a couple of months ago. I want to share this in case it helps someone else who ends up feeling obsessed about this decision. This was my biggest issue on treatment ...
I am on last 2 weeks of Harvoni... when I was at the 4 week mark on treatment, I was wondering about adding riba to my treatment as I had seen such success with a cure with those with added riba. I fell into fear.

My doctor was willing to add it if I really wanted it but we waited till 4 week blood results which showed non-detected from a 13.5 mil VL. After that he didn't want to add it. I was so upset, thinking this might be the final kick for the virus and wanted to do everything possible and that I might have messed up by not having it.

I worried and stressed for weeks. I called the nurse back. (While super smart, my doc is not the most approachable guy) ... his nurse said it was a thoughtful decision and I'm doing great. I felt like my fate was in his hands and because I paused for the first VL result at 4 weeks he took the choice away. He said he considers it for 3 reasons: 1. prior treatment (me) 2. cirrhosis 3. slow reaction to reach undetected levels - I had one out of 3 (previous treatment).

Finally, I had to decide get over it and trust Harvoni as a complete treatment to mentally and emotionally give it my all for a positive outcome. I wanted to recapture my belief system as when I started out totally feeling and believing this is all I needed. And, that's what I've done as best I can. Still it has weighed on me as I want to be done and do everything I can.

I might also add that riba wasn't really a great idea for me to begin with. I had extreme sides from it. I'll spare the details. But I hung it to finish, because that's who I am. Because of that, I don't even think I was a candidate for V-pak/riba.
But, I figured I could handle it for a couple of months.

This post has helped me to be a peace with it as much as I can. Until I started seeing others with Harvoni and riba it hadn't even occurred to me. I did see most were on clinical trials... I'm so very grateful to have gotten Harvoni and hope for full recovery for me and for everyone.

David · « **Reply #69 on:** September 12, 2015, 11:08:38 pm »

Hi, Bree,

As you may have read in some of my earlier posts, I get my medical care at the VA. When I saw my Hepatologist, I told her I wanted to be put on Harvoni. She made an appointment for my Pham-D class and when the pharmacist called, she told me I would be on twelve weeks of Harvoni + Ribavirin for twelve weeks. Since I was treatment naïve and everything I had read, clinical trial results and such, said that it didn't make much difference in overall success rates in, I guess, treatment naïve patients. This concerned me because I know from reliable sources that Ribavirin has some bad side effects. I collected considerable research on the subject and took it to my appointment. But before I could argue my case, she told me she had made a mistake on my information package, and I wouldn't have to take the Ribavirin. Great.
I was surprised at how many people in my class of ten were taking both Harvoni and Ribavirin, and I was equally surprised to hear almost all of them say they didn't have any bad side effects. I too have only ten days of treatment left. I took my four week VL test at three weeks instead of four because I was going out of town. I had gone from 14.5 mil. IU/ML to 25 IU/ML. My eight week test was undetectable. I pray it stays that way. My only side effect from Harvoni was, as far as I can tell, a little gastro-intestinal distress, and truth be known, that could just as well be my diet.
My best friend of many years has been denied HARVONI three times now, by two insurance companies. Support path won't help him, because he has insurance. Blue Cross has agreed to pay for Viekera Pak + Ribavirin for twenty four weeks, because he is treatment experienced with interferon and Ribavirin. He had very bad depression and was eventually taken off all treatment because of platelet depletion. He expressed his concerns about Ribavirin to his nurse and she told him that most of the bad side effects he experienced were probably caused by the Interferon. I guess he is going to try it. After all, success rates are similar, I believe, and everyday he wastes on appeals is one more day of liver damage. I pray he can tolerate it and be successful with his treatment.

I suppose you and I will know in December. An undetectable 12 week VL test would be a pretty good Christmas gift and a good start to a new year with out Hep. C in many years. You will be in my prayers.

David

Bree · « **Reply #70 on:** September 12, 2015, 11:23:47 pm »

Thanks David. My platelets are already low too so that's one more reason... trying to tell myself best decision was made and really do believe that.

I got Harvoni from Gilead Support Path after denials and appeals that included legal counsel. They had rather be sued than offer it apparently. But right before the change in Support Path rules, I got an awesome advocate there that got me in. I feel so lucky and blessed...I cried with joy.

I'll be hoping the best for your friend also.

Yes, my 12 week post will be Dec. 21 but I think I will take it a little earlier so I will have results before Dec. 25. I want the SVR before Christmas. Best present I can think of.... for both of us!

Bree · « **Reply #71 on:** September 24, 2015, 10:16:17 pm »

Hey David, it's Bree. I think you have just completed treatment this week right?

I finish Sunday night (Sept. 28). How are you doing?

David · « **Reply #72 on:** September 25, 2015, 10:31:41 pm »

Hi, Bree,
So nice of you to ask, thank you. Yes, I took my last pill on Tuesday, the 22nd. When the alarm on my phone went off at noon on Wednesday to remind me to take my pill, I said " Heyyyy. I can delete THAT alarm!" I have a doctors appointment on October 2nd but they are not asking for labs. I have an appointment on December 2nd for my last hep-b shot. It does not ask for labs, either, but my 12 week EOT date is December 15th. Yes, it would be a pretty good Christmas to have an undetectable VL result in December, and a pretty good start to the new year. I suppose they will do a 24 week EOT VL test, but undetectable at 12 weeks will be a miracle in itself. It's in the Lords hands now. I will keep you in my prayers. Keep me posted and I will do the same. If I don't hear from you by then, Merry Christmas. And throw in a " Good luck" for good measure.

David

Bree · « **Reply #73 on:** September 25, 2015, 11:12:22 pm »

Yes, I'm getting my 12 week post labs week before Christmas. Here's hoping we are wishing each other a Merry Christmas with great lab results! I'm thinking yes, that is the case. I'm claiming it for us!

Bree · « **Reply #74 on:** September 25, 2015, 11:15:48 pm »

Oh and p.s. My doc wants end of treatment labs and he wanted 24 week after. I told him end of treatment and 12 and 24 weeks after because I have to know before 24 weeks. He agreed. If you want some in between now and 12 weeks, maybe you can request at that next visit...

And, it will be strange when my phone alarm doesn't go off at 9 p.m. every night. I think I will take a pretend Harvoni in my mind and tell my body keep up the good work!

Scoutdoy · « **Reply #75 on:** September 25, 2015, 11:22:41 pm »

I am very happy for you guys. Funny that the big thing to do now is to shut off your reminders... Congratulations to you both

Scout

Bree · « **Reply #76 on:** September 25, 2015, 11:28:37 pm »

Thanks Scout! David finished on 22nd and my last day is Sunday 28th. Wow.

MaryC · « **Reply #77 on:** September 26, 2015, 11:02:16 am »

Congrats to you David in finishing tx and to you Bree for nearing the end (only 2 days left - yay!). Hearing from so many that are able to access and complete treatment is heartwarming and encouraging! One step closer to eradicating this horrible virus!

I pray that treatment becomes more affordable and accessible for everyone. This is really the only way to stay one step ahead of the spread of this destructive virus!

MaryC

Bree · « **Reply #78 on:** September 26, 2015, 11:19:36 am »

Thanks Mary - I'll be complete Sunday night (2 more pills). Hasn't been that hard, actually been pretty good. I'm wishing you the best on your treatment and thereafter also!

Yes, somehow I believe these meds will become more accessible. It's for the public good and will save lives and medical expenses in the long run. Plus, it's just the right thing to do... to make cures available. It's what humanity is supposed to be about.

David · « **Reply #79 on:** September 26, 2015, 12:51:23 pm »

Many thanks to all of you for your support, and I will pray for all who are in treatment, or seeking it.

David

rnpj2000 · « **Reply #80 on:** September 30, 2015, 04:12:01 pm »

I am excited myself. Monday I went to the infectious disease doctor for the first time. Wow they are already on the ball and ready to fight with insurance if needed. I talked to the Dr's nurse on the phone today. They are ordering all kinds of tests and procedures that the insurance company could possibly want. Through another doctor I am scheduled for a colonoscopy, EGD and Hida scan! My new doctor wants to get all that out of the way so the insurance company doesn't deny me saying they are waiting on results for my gall bladder. The Dr's nurse said she had trouble getting one patient approved because he had gall bladder issues regarding antacids but she said she finally got him approved! I told her I don't take antacids etc... and that my neurologist has me on percocet for pain on days I don't work and that he is going to start giving me just the Oxycodone without tylenol etc.. she said she would put that info that we already talked about the antacids and percocet! I have some awesome docs and nurses!

.

David · « **Reply #81 on:** September 30, 2015, 07:32:41 pm »

That's great, rn, sounds like you're with the good hands people. Hope you can hit the ground running. Take your medicine on time every day, stay hydrated and eat healthy. We're all pullin' for ya! Good luck.

David

rnpj2000 · « **Reply #82 on:** September 30, 2015, 08:36:31 pm »

Thank you David. Yea we are definitely hitting the ground running! All my other tests will be done by Oct. 20. After that we should be ready to battle the insurance company... and we will be loaded with ammo if they deny me. Hubby is a teamster and we carry his insurance through Team Care BCBS. We will soon find out how good or bad teamster insurance really is.

Bree · « **Reply #83 on:** September 30, 2015, 09:25:45 pm »

mpj2000 that's terrific that you have such a strong advocate team! I had to nudge mine and do the footwork every step of the way. I also got all the other medical stuff out of the way before this... glad that's all done so I could just focus on this treatment. Done now and so glad. It is so worth it!!! Good luck... I have a feeling it's going to work out well for you...

chino1969 · « **Reply #84 on:** November 25, 2015, 10:56:06 am »

David,
I just completed 24 weeks of Harvoni with no Ribavirin and am undetected 12 weeks after treatment. It is your job to take control and run this like you would a job. Question the rationale behind Ribavirin.

David · « **Reply #85 on:** November 25, 2015, 12:56:17 pm »

Thanks, Chino. That's exactly what I did. I took my research with me to my initial meeting with the pharmacist the day I started, and before I even got in the room with her she informed me that they had concluded that Ribavirin was not indicated in my case and I would not be taking it. I finished my treatment with twelve weeks of Harvoni on September twenty third. I took my four week V.L. test at three weeks, because I was going to be out of town the fourth week. I had gone from 14.5 M to 25 IU/ML in three weeks. When I took my eight week test, I was undetectable. I am scheduled for labs to be drawn on December sixteenth for what I pray will be my final V.L test. My doctor said she would send a letter with the results, or I can possibly view them on line after three days. I only thought I was anxious before I started treatment. Now I am learning what anxious really means. Thank heaven for valium. Thanks for your reply. I will keep you all posted.

Scoutdoy · « **Reply #86 on:** November 25, 2015, 01:21:28 pm »

Congrats David, that's great!

Scout

Bree · « **Reply #87 on:** November 25, 2015, 01:32:34 pm »

Quote from: David on November 25, 2015, 12:56:17 pm

Thanks, Chino. That's exactly what I did. I took my research with me to my initial meeting with the pharmacist the day I started, and before I even got in the room with her she informed me that they had concluded that Ribavirin was not indicated in my case and I would not be taking it. I finished my treatment with twelve weeks of Harvoni on September twenty third. I took my four week V.L. test at three weeks, because I was going to be out of town the fourth week. I had gone from 14.5 M to 25 IU/ML in three weeks. When I took my eight week test, I was undetectable. I am scheduled for labs to be drawn on December sixteenth for what I pray will be my final V.L test. My doctor said she would send a letter with the results, or I can possibly view them on line after three days. I only thought I was anxious before I started treatment. Now I am learning what anxious really means. Thank heaven for valium. Thanks for your reply. I will keep you all posted.

Hey David! We'll be taking our 12 weeks post at about the same time. I had the opportunity to have a 6 week post for several reasons and it was undetected!!! That helped me to relax a lot. I think we have every reason to believe the 12 week post will be SVR. Fingers crossed for both of us and for all of us!!!

Scoutdoy · « **Reply #88 on:** November 25, 2015, 01:35:38 pm »

Bree I am getting a 6 week EOT done next week....I hope it's still undetected

Scout

Bree · « **Reply #89 on:** November 25, 2015, 01:40:52 pm »

Quote from: Scoutdoy on November 25, 2015, 01:35:38 pm

Bree I am getting a 6 week EOT done next week....I hope it's still undetected

Scout

It will be... I looked in my crystal ball

David · « **Reply #90 on:** November 25, 2015, 02:25:09 pm »

Hi, Bree. Thanks. That's reassuring. Been thinking about you. Glad to know you are doing well. I'll keep you posted and in my prayers.

David · « **Reply #91 on:** December 26, 2015, 08:47:44 pm »

The following is taken from a letter from my Gi. Doctor at the V.A. in reference to my 12 week EOT labs, dated December 23, 2015 and received by me late this afternoon:

"Dear David(sic),

The results of your recent laboratory tests are as follows:
- Liver Function Tests (LFT's) : OK
- Hepatitis C quant. : Target Not Detected

What this means: The treatment worked and you have been cured of Hepatitis C. Congratulations."

Thanks be to God and his son, my savior Jesus Christ, the V.A., and the good people on this forum. I will continue to pray for you all every day. I thank all of you for your support.

Sincerely,

David

Bree · « **Reply #92 on:** December 26, 2015, 09:43:29 pm »

That's awesome David!!! Me too! 12 weeks post EOT NOT Detected!

Got the news on Christmas Day!

Thank you for being my forum friend. Enjoy your life!

David · « **Reply #93 on:** December 27, 2015, 12:18:49 am »

That is wonderful news, Bree. It was very comforting to have a "battle buddy" throughout this treatment. It made a bumpy ride a lot smoother. Thank you and I wish you all the best.

David

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