Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
patiently_waiting said
Jun 11, 2014
Gator Man wrote:
I am scheduled to stop by LabCorp today to have what I hope will be an HCV test confirming SVR. It's a little early post EOT, but my doctor likes to make a little show with the SVR pronouncement, so he needs the results in hand prior to my 12 week follow up.
A year ago, I was resigned to the belief that I would progress to decompensated cirrhosis or worse before there was any available interferon free therapy.
As my wife frequently points out, I was wrong!
I am a lucky man, along with the rest of us fortunate enough to have good tx options.
-- Edited by Gator Man on Wednesday 11th of June 2014 03:43:00 PM
Good luck Gator Man! We're all pulling for you.
pierre said
Jun 11, 2014
Or, as they put it in French, merde, Gatorman!
Isiscat2011 said
Jun 11, 2014
Good luck, Gator Man. In this case it will be your pleasure to be wrong, I'm sure. :)
Tig said
Jun 11, 2014
Good luck Gator Man! I have a great feeling about this and just know the word is going to be good!!
Tig
Gator Man said
Jun 11, 2014
I am scheduled to stop by LabCorp today to have what I hope will be an HCV test confirming SVR. It's a little early post EOT, but my doctor likes to make a little show with the SVR pronouncement, so he needs the results in hand prior to my 12 week follow up.
A year ago, I was resigned to the belief that I would progress to decompensated cirrhosis or worse before there was any available interferon free therapy.
As my wife frequently points out, I was wrong!
I am a lucky man, along with the rest of us fortunate enough to have good tx options.
-- Edited by Gator Man on Wednesday 11th of June 2014 03:43:00 PM
Tig said
Jun 11, 2014
Hi Mike,
I'm familiar with OMJ and that means two weeks after she started treatment.I'll mention that to her next time she logs in. It is confusing if you're not familiar with her meaning.
Tig
Mike716 said
Jun 11, 2014
Hi, OMJ.
You wrote:
> 2 weeks post tx of only Solvaldi and Olysio:
> VL: 28
Is that 28 IU/mL, 2 weeks after the end of Tx? How do you/your MD interpret that?
Mike
patiently_waiting said
Jun 10, 2014
As of today I'm also on this regimen with riba @1200mg/day. I'll post here any sides and other info that comes up.
Matt Chris said
Jun 10, 2014
Hey Tanya
Super congrats on the UND status its a day that you will come to cherish, from here out its up up and away.
Keep up the routine with the meds and good eats and you will be done before you know it.
matt
Matt Chris said
Jun 10, 2014
Hey Pierre
Belated congrats on the EOT plus four weeks UND.
The best news you could ever have received.
matt
tgcd78 said
Jun 10, 2014
I started the Sovalidi/Olysio combo on 05/27/14, the same day I started lurking around these boards. Today 06/10/14 I heard the news that I was UND. I was not expecting that news so soon so it still processing.
A little background for you all, I am on the OPTIMIST clinical trial in NYC. I am 35 years old, female, healthy liver. No one aside from my husband and a very select few other individuals know about my HepC. I have been holding onto this secret since I found out in 2008. I felt the need to share my news and so I share it here.
FibroScan - 4.2 genotype - CT 1b (not sure what the CT means) Starting viral load - 8MIL 3 day viral load - 300 1 week viral load - UND
That is all of the information I really have. I need to continue to take the drugs for another 10 weeks. I am in the 12 week arm of the trial. I know there is still a chance things can take a turn for the worse but I'll continue to stay optimistic, like the trial name.
thanks for reading.
-- Edited by tgcd78 on Tuesday 10th of June 2014 05:49:41 PM
Omnamahshivaya said
Jun 10, 2014
wow! can't thank you enough Pierre!
Peter M said
Jun 6, 2014
Thank you Pierre. I appreciate you taking the time to provide the foundations of your healthy diet. - Peter
re low-glycemic diet: Here, a quick breakdown as we are off tomorrow for three months' work in Europe but that will give you an idea. My wife Nicole Peyrafitte has a blog on which she has posted some recipes. Do not hesitate to write to her blog w/ more culinary questions she is a trained cooked. http://nicolepeyrafitte.com/blog/category/low-glycemic/. (It is she who has implemented & kept us on this for two solid years -- & made it palatable by creating amazing dishes, including excellent no-sugar deserts).
LOW GLYCEMIC is the key word in order to avoid insulin toxicity.I learnt that even if your glucose is "normal" it doesn't mean your insulin works really well. And good insulin balance is core to keeping the liver's household on an even keel.
First the nono's & yesses, then a few links for further info:
NO Flour: Grains are eaten whole, though we do eat Ezekiel bread or pumpernikel fitness bread in moderation (2 slices a day & always with a little cheese or butter: reaching for that bread before your meal at a restaurant will trigger an insulin spike...wait for your salad)
Needless to say NO pasta at all.
NO Potatoes
NO Rice -- occasionally some brown rice but rarely
NO processed foods (cured meats, prepared dressings, etc.)
YES to: Raw & sautéed green veggies & salads -- simple dressings (olive oil, lemon)
Whole Grains: Quinoa, buckwheat, barley, amaranth, whole oats, Farro, spelt
Cheeses (Goat & Cheddar preferred)
PLAIN Yogurt (Goat or sheep preferred)
Organic nuts & seeds
All legumes ( lentils, beans, soy, mung, adzuki..)
Grilled organic meats & white fish
Fruits (only organic green apple & berries)
Beverages: NO beverage other than tea (preferably green),we have 2 cups of coffee a day (organic ground at home, no sweetener); a lot of plain water &/or plain seltzer water (flavored ones have sugar).
Rice or soy milk unsweetened / no flavor
we do make our almond milk because a lot of these heathly milks have high sugar content even if theres no added sugar.
I lost 40lbs, Nicole lost 20 a year 1/2 ago...the beauty is if you stick to this diet, it the weight remains really stable and cravings disappear after a while.
We can continue the conversation once I land in Europe...
Pierre
Omnamahshivaya said
Jun 6, 2014
first off, congratulations Pierre! I'm on Olysio/Solvaldi one week over the 4 week mark. Wasn't UD last week but probably am now.
What is your low-glycemic diet and liver supported foods you eat? Please share!~
Thank you so much!
OMJ
maddie said
Jun 5, 2014
Fantastic news Pierre!!
Peter M said
Jun 5, 2014
Hi Pierre,
congratulations on 4 week eot und! I'd be interested in the details of your low glycemic diet when you have a chance to post them. Thanks!
cheers!
Peter
Tig said
Jun 5, 2014
Hi Pierre,
Congratulations! So happy to hear your good news. The fact you've made it to EOT +4 still undetectable is a very promising sign indeed. Your chances for SVR are very likely and would be thrilled were I in your shoes! Good luck....
Tig
pierre said
Jun 5, 2014
Hi ya'll -- have been away & traveling for a few weeks. Was very sorry to hear of darkstar's setback, though my strong belief is that with the other improved new treatments coming in there will be one that works! This dragon is on its last legs & will be slayed.
I am now one-month post-treatmnet & the results of the latest tests came in last night: still UND & all liver functions normal! Two months to go until UND will hopefully be changed to SVR.
I am being very careful and have kept the very low-glycemic tight dietary regimen I've been on for the last 2 years, while also doing everything to keep stress to a minimum (giving myself extra days of rest before & after I travel overseas, etc.) & getting exercise, as that combination has been essential for maintaining a general level of good health. Can't insist enough on the need for good, liver-friendly nutrition during the whole process. If anyone wants more specific details, please ask.
Avanti!
Pierre
maddie said
May 29, 2014
Sara, I can so understand your bittersweet feelings. You are so right about the discrimination...like the leppers of past times.
Audreyanna, good luck on your results tomorrow. So glad you are feeling well.
Sara said
May 27, 2014
3 weeks to go for me until EOT.
Today is a bitter sweet day - my son's birthday - the day I contracted hiv and hep c from blood transfusions I received after he was born. I have been living under a shroud of social injustice - as with racial discrimination - we have come a long way but we are still discriminated against.
-- Edited by Sara on Tuesday 27th of May 2014 09:16:59 PM
-- Edited by Sara on Wednesday 28th of May 2014 12:22:07 PM
-- Edited by Sara on Wednesday 28th of May 2014 12:23:51 PM
Audreyanna said
May 27, 2014
Well, went for my 4 week into treatment bloodwork today. Hoping to be virus free! I should know by Friday. I feel great!
Gator Man said
May 22, 2014
Hi Bob,
I think many of us have had the "what if" conversation with our doctor. Mine seems pretty confident that there is a successful Tx option for everyone in the near future, whether it's Sovaldi/Ledispavir or other drugs in the pipeline. In the meantime, you've given your liver a break until the next Tx regimen. Take advantage of feeling better knowing that the new therapies are a walk in the park compared to the INF days.
We're here for you ... Good luck and keep us posted.
darkstar said
May 22, 2014
Maliani,
The mutation is an issue for one but not both of the drugs. No clear evidence that riga actually adds anything. Bottom line is that we will see and I am hopeful about other new combos!
mallani said
May 22, 2014
Hi Bob,
Sorry to hear the news. From my understanding, you only did 12 weeks of Sovaldi/Olysio w/o Riba, after previous Rx-failures with Peg/Riba and were taken off the Incivek triple. As a cirrhotic, I mentioned in an earlier post that this was probably not the best combo, as you have the Q80K mutation. We should all be aware that previous antiproteases failures and cirrhotics need extra treatment, and push our doctors. Don't worry, Sovaldi/Ledipasvir will soon be available and SVR has just been delayed. Cheers.
Sara said
May 22, 2014
Ditto what Greg said...I'm truly sorry.
Having energy level restored is a highlight in the struggle to win this battle.
Hopefully with Sov/Led the war will end for all!
Groupergetter said
May 22, 2014
Bob, truly sorry you are the one that brings us back to the sometimes harsh reality of tx. There has been so much good news of late it seemed that everyone on the newer regimens was on the path to SVR. While none of us can understand fully your disappointment, most here have experienced relapse or non-response. Keep the faith, this is a short detour, your time is coming.
-- Edited by Groupergetter on Thursday 22nd of May 2014 06:30:08 AM
Dee Dee said
May 21, 2014
Darkstar.. What treatment were you on?
darkstar said
May 21, 2014
Thanks for all of your kind words! It is good to know that there are many who understand and are also fighting the battle. In response to a question, this was my four week post treatment lab work. As was pointed out, I was undetectable at 2 weeks, so even more of a shock. Many questions about what to do next and of course, no certain answers. To me, the bottom line is that with an almost 40 year battle, long time compensated cirrhosis, hopefully I can continue to dodge the bullet while killing the virus for good. The best news for me has been to see that at 62 yo my energy level prior to treatment was HCV and not increasing years.
Tig said
May 21, 2014
I'm sorry to hear this news too Bob. Who knows why, but I agree that PI's don't seem to have what's needed keep the beast at bay in your case. I thought with your fast response, you were on your way to a final and permanent solution. There's nothing that will ease your total disappointment at this point, but you know now what won't work and with Sov/Led just around the corner and it's trial successes, let's hope it will. Give yourself the time between this unfortunate realization and the release of Gilead's blockbuster combo to regroup and recover. Then hit the dragon with a final killing blow. Stay strong and hang in there Brother, we're always here to talk.
Tig
Caryn said
May 21, 2014
I am sorry to hear this dark star. I know it is devastating, but don't be defeated! You will have more options available very soon.
OldenSlow said
May 21, 2014
Awful news, Bob. Saying I'm sorry just doesn't seem to cover it. Have followed your progress since your 2 wk und report in January. Thought for sure you had it this time around. Seems you'll want to avoid another anti-protease in the future. Thankfully the newer options are right around the corner. Crap!!
wayne
maddie said
May 21, 2014
Bob, I'm very sorry to hear that the virus has come back. You must be so devastated.
Hopefully, the fact that there are other drugs available or soon to be available will help make this disappointment a bit more bearable. I am glad that you are feeling well physically, and I pray that your next treatment will be the one.
All the best, Maddie
Fireman Rob said
May 21, 2014
Darkstar,
I'm so sorry to hear that. So to clarify, what's your situation? Are you cirrhotic? And have you finished S/O Tx and are 4 weeks EOT? Please excuse my ignorance to your current status.
Luckily for all of us, there's a better option on the horizon, hopefully in October! Keep your head up and try to stay positive.
-Rob
darkstar said
May 21, 2014
Well guys, the best laid plans. Four week labs today. Mild worsening of LFTs now barely abnormal and virus back. Titer 410,000. Hopefully, if nothing else, I partially reset the clock. I do feel better than I have in years and am back to working out at almost my old level. Hopefully, there will be other options. The two drug combo plus ribavirin?? Other new drugs? Don't know, on the one hand obviously devastated, but on the other hand still hope.
Tig said
May 19, 2014
I used Odansetron (Zofran) for nausea too. It does work very well and very fast. If you ask for a prescription, be sure to ask for the generic (Odansetron), because the brand name med is uber expensive. I also found if you allowed Coke or Ginger Ale to go flat and to room temperature, that it provided some relief. For sleep, I found Melatonin helped. I tried it after I started having severe tinnitus. Interferon is known for causing and aggravating it. I read an article that low doses of it might help reduce it and fortunately it did. But I also noticed an improvement in my ability to fall asleep and stay asleep, when I was supposed to be sleeping. It's inexpensive and worth trying. However, it took a couple of weeks to notice a difference. But when very little has worked, it's a good place to start.
Tig
Isiscat2011 said
May 19, 2014
Hi Omna:
Regarding your nausea: I felt like I had morning sickness every day of my tx and what finally worked is a prescription medicine called Ondansetron. That stuff works and it works fast. It is the same medication they give to chemo patients.
Before I got that, however, I tried soda crackers with ginger ale or a small glass of a carbonated beverage. That helps for a little nausea but for a lot of nausea only the Ondansetron worked. If you want you can ask your doctor about getting a script for Ondansetron if the nausea continues.
Hang in there! You are doing great.
Peter M said
May 19, 2014
I use melatonin time release (nutraspray) and 5htp (which also increases seratonin and may help with depression). Start with low doses of both and work your way up till you sleep like a baby.
Barnacle said
May 19, 2014
Insomnia is a symptom of hep C as well as the itching I suffered through for years. I am not sure about how much cause and effect is going on with me but my itching has pretty much subsided since week 2 of Tx and I have slept like a baby since I found out I was UND at wk 4.
All the tests leading up to my Tx waiting on approval for the expensive combo being told I have a protein that might indicate HCC, delaying treatment until I could get MRI and CT scan to rule out cancer. No wonder I couldn't sleep.
I found the strong sleep drugs ambien and the like made me dopey the next day. I used benadryl with some success to make me drowsy. Often just warm milk and a good book did the trick.
I have to say halfway through treatment I feel better than I have in years. Other than sun sensitivity (olysio?) and riba rash this treaatment is going very well for me.
Omnamahshivaya I wish I could be more help but I seemed to have dodged most of the Sx others have experienced but I wish you the best. It will soon be over....
Groupergetter said
May 18, 2014
Omna I have a week to go on this regimen. I've had insomnia as well and it does make work more difficult. Sleep problems are a recognized se of HCV even without the meds. Take a short nap when the little one goes down. It will help. I found that when needed Zyrtec/certirizene helps me sleep a bit better without knocking me out. Stay strong, you've got a battle to win. Take care.
Omnamahshivaya said
May 18, 2014
I'm three weeks into Olysio/Solvaldi and am unfortunately starting to experience insomnia. Sucks. Because I have a toddler who wakes me up about 5:30-6am every day. Last night I was up from 2:45 am til about 4:34 am and finally took half an ambien to sleep... and I was finally in a DEEP sleep when I got that charming but unwanted wake up call at 5:30.
Also, I have what feels like "morning sickness" nausea most days but it comes and goes. And my eyes are very sensitive to the bright sunlight - but it's super bright here right now.
And I've been covering up a lot b/c it's been in the high 90 degrees here, so I haven't gotten burned yet but it's not easy to cover up while driving, getting the mail and playing with my little guy outside. It's inconvenient but I keep reminding myself of the huge payoff!
Oh and I've been emotional. I tend to cry more... for no apparent reason other than I feel nausea and emotional. Today I was feeling like I wouldn't be able to go the next two plus months on this. I felt like giving up b/c honestly, it feels so challenging doing this protocol, feeling this way, and having to take care of my toddler who is at home with me all day and very attached. But I will forge ahead. I think of all of you and how much you've endured and are enduring. And all those who took Interferon. Not to mention I have a mom friend with a toddler who found out she had breast cancer two weeks prior to giving birth. It's been nearly three years and the cancer is everywhere and she copes, fights, and rarely complains. Her child is in preschool all day, but still, I commend her.
So forge on. I'm actually so grateful that I nearly cleared the virus in two weeks.
Lots of light to everyone.
Dzdayscomin said
May 18, 2014
Hello all,
I have a question.....I have 10 days left of Olysio/sovaldi only tx
I have been feeling pretty darn good, but what will it be like off the tx? Will I have even more energy?
As far as side effects id say the major (if ya wanna call it that) is the insomnia, minor would be a few headaches and sunburn even with sunscreen.
Labs are good accept alk phos is high and seems to be getting higher each test, but my hepatologist does not seem to be to concerned even though its gone from 248 at the beginning to 311 May 1st.
One other thing I want to share ...this may fly in the face of some peoples thinking but because my liver is in such rough shape I experience a lot of joint pain, acites pain, and as others have stated in a different thread nerve pain.
I was precribed oxycodone IR 5mg as needed, now I dont like meds at all,but I find this to be a Godsend, I don't take it every day, but every couple days 1 tab before dinner when I'm not going to go anywhere...it has greatly improved my appetite, and motivation to do things where as before all I wanted to do is just lay around hurting, and feeling depressed with the situation, and not just while taking it, but it seems to have a longer term effect.
I signed a controlled substance contract with my doc and have not had any issues getting it refilled, and I have experimented with not taking it for a couple weeks and have not experienced any physical dependency needs but do notice that the symptoms of ESLD are much more difficult to deal with when I don't take it.
So I would say if you struggle with liver problems beyond HCV like I do .....talk to your doctor it's a huge quality of life improvement and may really help those that experience more severe sx.
Is everybody waiting for HCV testing 12 weeks post tx like I am? It doesn't seem like it :-\
Anyway my main question is how do people feel after finishing the tx, I remember being very fatigued at the beginning and wonder if after nearly three months ya just get used to it being the norm.
EXCITED TO BE NEARLY DONE AND I'M SURE THE BEAST HAS BEEN CONQUORED!
Thanks, Duane
Tig said
May 14, 2014
Congratulations Ryan!!! One more day? Doesn't seem possible... There are so many of you coming to the end of treatment at the same time, it's almost mind numbing that Tx can be so fast and so successful. All that and without the nasty side effects we've all come to know. I'm happy for ya man, "the end is near"!!!!!
@PW, I have to agree with you. It's seems to me and we do have some attorneys here that will probably agree as well, that these pharmacies are just asking for trouble. I'm not the litigious type but if my liver was in good shape and I could afford to wait for the next best thing, I'd go after an offending pharmacy like a rabid dog going after an ignorant bunny. Seems like they're in bad need of a precedent setting case or two. This problem goes way above the pharmacy head, but I'm sure s/he could move a lot of BS out of the way if desired. If common sense ruled society, things would be a lot simpler.
Tig
Rybronco said
May 14, 2014
I am down to one pill each of Sov/Oly and the end of therapy. I was thinking about the differnences between the two attempts, Sov/Oly and Inf/Riba, I have had to rid myself of this virus.
I will complete the course of therapy tomorrow - I only lasted 3 months or so on Inf/riba
I have not missed a day of work in 12 weeks on Sov/Oly - I could not work for the entire time I was on Inf/riba
My hair has been growing like normal - I lost my hair in some places and it was horribly thin in others
I have gained 4 pounds on Sov/Oly - I lost 30 pounds on Inf/riba
I have been emotionally stable this 12 weeks - I was terribly depressed and felt hopeless on Inf/Riba
Normal RBC vs Anemia
The list goes on and on. I am truly grateful to have the opportunity to rid this virus at such a nominal physical cost this time. (Financial cost is no where close to nominal)
Ryan
patiently_waiting said
May 13, 2014
I'm no lawyer but it sure seems like these pharmacies are exposing themselves to massive liability operating this way. If someone were to fail treatment because they couldn't get their refill, would they not have cause to sue?
Gator Man said
May 13, 2014
I went through the same battle with CVS Caremark. My initial prescription was filled by a local specialty pharmacy because Caremark lacked inventory back in January. As I have encouraged in previous posts, start early and stay vigilant with your pharmacy and insurance provider. Caremark was not very forthcoming when they initially denied my second refill. I couldn't get a straight answer regarding my refill status for almost two weeks.
Good luck and let us know if you have any problems.
John
Audreyanna said
May 13, 2014
It appears Skyemed Pharmacy and CVS Caremark are fighting over my 2nd month prescription and I'm stuck in the middle, trying to get them to play nice! For some reason, my insurance wont use Skyemed for more than 30 days. Money makes everyone strange....Wish me luck.
angelwish said
May 13, 2014
Yes that's where we were.
Meds are being delivered Friday.
Peter M said
May 12, 2014
If you are talking about the Weil-Cornell in Manhattan, I visited with Dr. Ira Jacobson there several years ago and was impressed. Not only that, but I think Dr. Jacobson was the main man behind the COSMOS study upon which this Sovaldi and Olysio treatment is based. Keep us posted as the good news comes in. You're in good hands!
angelwish said
May 12, 2014
I am so happy reading all the great results with a minimum of side effects. My husband was approved for treatment.
Our visit at Wiel Cornell was so thorough and supportive.
Good luck Gator Man! We're all pulling for you.
Or, as they put it in French, merde, Gatorman!
Good luck, Gator Man. In this case it will be your pleasure to be wrong, I'm sure. :)
Good luck Gator Man! I have a great feeling about this and just know the word is going to be good!!
Tig
I am scheduled to stop by LabCorp today to have what I hope will be an HCV test confirming SVR. It's a little early post EOT, but my doctor likes to make a little show with the SVR pronouncement, so he needs the results in hand prior to my 12 week follow up.
A year ago, I was resigned to the belief that I would progress to decompensated cirrhosis or worse before there was any available interferon free therapy.
As my wife frequently points out, I was wrong!
I am a lucky man, along with the rest of us fortunate enough to have good tx options.
-- Edited by Gator Man on Wednesday 11th of June 2014 03:43:00 PM
Hi Mike,
I'm familiar with OMJ and that means two weeks after she started treatment.I'll mention that to her next time she logs in. It is confusing if you're not familiar with her meaning.
Tig
Hi, OMJ.
You wrote:
> 2 weeks post tx of only Solvaldi and Olysio:
> VL: 28
Is that 28 IU/mL, 2 weeks after the end of Tx? How do you/your MD interpret that?
Mike
As of today I'm also on this regimen with riba @1200mg/day. I'll post here any sides and other info that comes up.
Hey Tanya
Super congrats on the UND status its a day that you will come to cherish, from here out its up up and away.
Keep up the routine with the meds and good eats and you will be done before you know it.
matt
Hey Pierre
Belated congrats on the EOT plus four weeks UND.
The best news you could ever have received.
matt
I started the Sovalidi/Olysio combo on 05/27/14, the same day I started lurking around these boards. Today 06/10/14 I heard the news that I was UND. I was not expecting that news so soon so it still processing.
A little background for you all, I am on the OPTIMIST clinical trial in NYC. I am 35 years old, female, healthy liver. No one aside from my husband and a very select few other individuals know about my HepC. I have been holding onto this secret since I found out in 2008. I felt the need to share my news and so I share it here.
FibroScan - 4.2
genotype - CT 1b (not sure what the CT means)
Starting viral load - 8MIL
3 day viral load - 300
1 week viral load - UND
That is all of the information I really have.
I need to continue to take the drugs for another 10 weeks. I am in the 12 week arm of the trial. I know there is still a chance things can take a turn for the worse but I'll continue to stay optimistic, like the trial name.
thanks for reading.
-- Edited by tgcd78 on Tuesday 10th of June 2014 05:49:41 PM
wow! can't thank you enough Pierre!
Thank you Pierre. I appreciate you taking the time to provide the foundations of your healthy diet. - Peter
Omnamahshivaya & Peter,
re low-glycemic diet: Here, a quick breakdown as we are off tomorrow for three months' work in Europe but that will give you an idea. My wife Nicole Peyrafitte has a blog on which she has posted some recipes. Do not hesitate to write to her blog w/ more culinary questions she is a trained cooked. http://nicolepeyrafitte.com/blog/category/low-glycemic/. (It is she who has implemented & kept us on this for two solid years -- & made it palatable by creating amazing dishes, including excellent no-sugar deserts).
LOW GLYCEMIC is the key word in order to avoid insulin toxicity.I learnt that even if your glucose is "normal" it doesn't mean your insulin works really well. And good insulin balance is core to keeping the liver's household on an even keel.
First the nono's & yesses, then a few links for further info:
NO Sugar ( of any sorts that includes honey, maple syrup ,agave; use only Stevia & be very careful most the Stevia biz had been recuperated by agrobiz -- we get only this one http://www.amazon.com/Stevia-Whole-Concentrate-Ounces-Bottles/dp/B001EO5RG8 & are now about the experiment w/ the leaves)
NO Flour: Grains are eaten whole, though we do eat Ezekiel bread or pumpernikel fitness bread in moderation (2 slices a day & always with a little cheese or butter: reaching for that bread before your meal at a restaurant will trigger an insulin spike...wait for your salad)
Needless to say NO pasta at all.
NO Potatoes
NO Rice -- occasionally some brown rice but rarely
NO processed foods (cured meats, prepared dressings, etc.)
YES to: Raw & sautéed green veggies & salads -- simple dressings (olive oil, lemon)
Whole Grains: Quinoa, buckwheat, barley, amaranth, whole oats, Farro, spelt
Cheeses (Goat & Cheddar preferred)
PLAIN Yogurt (Goat or sheep preferred)
Organic nuts & seeds
All legumes ( lentils, beans, soy, mung, adzuki..)
Grilled organic meats & white fish
Fruits (only organic green apple & berries)
Beverages: NO beverage other than tea (preferably green),we have 2 cups of coffee a day (organic ground at home, no sweetener); a lot of plain water &/or plain seltzer water (flavored ones have sugar).
Rice or soy milk unsweetened / no flavor
we do make our almond milk because a lot of these heathly milks have high sugar content even if theres no added sugar.
I lost 40lbs, Nicole lost 20 a year 1/2 ago...the beauty is if you stick to this diet, it the weight remains really stable and cravings disappear after a while.
there is some good info here:
http://majidalimd.me/2011/04/30/seven-stages-of-insulin-toxicity/
this guy explains it very well:
http://kidneylifescience.ca/drjasonfung/
this video explains it well:
https://www.youtube.com/watch?v=4oZ4UqtbB_g
We can continue the conversation once I land in Europe...
Pierre
first off, congratulations Pierre! I'm on Olysio/Solvaldi one week over the 4 week mark. Wasn't UD last week but probably am now.
What is your low-glycemic diet and liver supported foods you eat? Please share!~
Thank you so much!
OMJ
Fantastic news Pierre!!
Hi Pierre,
congratulations on 4 week eot und! I'd be interested in the details of your low glycemic diet when you have a chance to post them. Thanks!
cheers!
Peter
Hi Pierre,
Congratulations! So happy to hear your good news. The fact you've made it to EOT +4 still undetectable is a very promising sign indeed. Your chances for SVR are very likely and would be thrilled were I in your shoes! Good luck....
Tig
Hi ya'll -- have been away & traveling for a few weeks. Was very sorry to hear of darkstar's setback, though my strong belief is that with the other improved new treatments coming in there will be one that works! This dragon is on its last legs & will be slayed.
I am now one-month post-treatmnet & the results of the latest tests came in last night: still UND & all liver functions normal! Two months to go until UND will hopefully be changed to SVR.
I am being very careful and have kept the very low-glycemic tight dietary regimen I've been on for the last 2 years, while also doing everything to keep stress to a minimum (giving myself extra days of rest before & after I travel overseas, etc.) & getting exercise, as that combination has been essential for maintaining a general level of good health. Can't insist enough on the need for good, liver-friendly nutrition during the whole process. If anyone wants more specific details, please ask.
Avanti!
Pierre
Sara, I can so understand your bittersweet feelings. You are so right about the discrimination...like the leppers of past times.
Audreyanna, good luck on your results tomorrow.
So glad you are feeling well.
3 weeks to go for me until EOT.
Today is a bitter sweet day - my son's birthday - the day I contracted hiv and hep c from blood transfusions I received after he was born. I have been living under a shroud of social injustice - as with racial discrimination - we have come a long way but we are still discriminated against.
-- Edited by Sara on Tuesday 27th of May 2014 09:16:59 PM
-- Edited by Sara on Wednesday 28th of May 2014 12:22:07 PM
-- Edited by Sara on Wednesday 28th of May 2014 12:23:51 PM
Well, went for my 4 week into treatment bloodwork today. Hoping to be virus free! I should know by Friday. I feel great!
Hi Bob,
I think many of us have had the "what if" conversation with our doctor. Mine seems pretty confident that there is a successful Tx option for everyone in the near future, whether it's Sovaldi/Ledispavir or other drugs in the pipeline. In the meantime, you've given your liver a break until the next Tx regimen. Take advantage of feeling better knowing that the new therapies are a walk in the park compared to the INF days.
We're here for you ... Good luck and keep us posted.
Maliani,
The mutation is an issue for one but not both of the drugs. No clear evidence that riga actually adds anything. Bottom line is that we will see and I am hopeful about other new combos!
Hi Bob,
Sorry to hear the news. From my understanding, you only did 12 weeks of Sovaldi/Olysio w/o Riba, after previous Rx-failures with Peg/Riba and were taken off the Incivek triple. As a cirrhotic, I mentioned in an earlier post that this was probably not the best combo, as you have the Q80K mutation. We should all be aware that previous antiproteases failures and cirrhotics need extra treatment, and push our doctors. Don't worry, Sovaldi/Ledipasvir will soon be available and SVR has just been delayed. Cheers.
Ditto what Greg said...I'm truly sorry.
Having energy level restored is a highlight in the struggle to win this battle.
Hopefully with Sov/Led the war will end for all!
Bob, truly sorry you are the one that brings us back to the sometimes harsh reality of tx. There has been so much good news of late it seemed that everyone on the newer regimens was on the path to SVR. While none of us can understand fully your disappointment, most here have experienced relapse or non-response. Keep the faith, this is a short detour, your time is coming.
-- Edited by Groupergetter on Thursday 22nd of May 2014 06:30:08 AM
Thanks for all of your kind words! It is good to know that there are many who understand and are also fighting the battle. In response to a question, this was my four week post treatment lab work. As was pointed out, I was undetectable at 2 weeks, so even more of a shock. Many questions about what to do next and of course, no certain answers. To me, the bottom line is that with an almost 40 year battle, long time compensated cirrhosis, hopefully I can continue to dodge the bullet while killing the virus for good. The best news for me has been to see that at 62 yo my energy level prior to treatment was HCV and not increasing years.
I'm sorry to hear this news too Bob. Who knows why, but I agree that PI's don't seem to have what's needed keep the beast at bay in your case. I thought with your fast response, you were on your way to a final and permanent solution. There's nothing that will ease your total disappointment at this point, but you know now what won't work and with Sov/Led just around the corner and it's trial successes, let's hope it will. Give yourself the time between this unfortunate realization and the release of Gilead's blockbuster combo to regroup and recover. Then hit the dragon with a final killing blow. Stay strong and hang in there Brother, we're always here to talk.
Tig
I am sorry to hear this dark star. I know it is devastating, but don't be defeated! You will have more options available very soon.
Awful news, Bob. Saying I'm sorry just doesn't seem to cover it. Have followed your progress since your 2 wk und report in January. Thought for sure you had it this time around. Seems you'll want to avoid another anti-protease in the future. Thankfully the newer options are right around the corner. Crap!!
wayne
Bob, I'm very sorry to hear that the virus has come back. You must be so devastated.
Hopefully, the fact that there are other drugs available or soon to be available will help make this disappointment a bit more bearable. I am glad that you are feeling well physically, and I pray that your next treatment will be the one.
All the best, Maddie
Darkstar,
I'm so sorry to hear that. So to clarify, what's your situation? Are you cirrhotic? And have you finished S/O Tx and are 4 weeks EOT? Please excuse my ignorance to your current status.
Luckily for all of us, there's a better option on the horizon, hopefully in October! Keep your head up and try to stay positive.
-Rob
Well guys, the best laid plans. Four week labs today. Mild worsening of LFTs now barely abnormal and virus back. Titer 410,000. Hopefully, if nothing else, I partially reset the clock. I do feel better than I have in years and am back to working out at almost my old level. Hopefully, there will be other options. The two drug combo plus ribavirin?? Other new drugs? Don't know, on the one hand obviously devastated, but on the other hand still hope.
I used Odansetron (Zofran) for nausea too. It does work very well and very fast. If you ask for a prescription, be sure to ask for the generic (Odansetron), because the brand name med is uber expensive. I also found if you allowed Coke or Ginger Ale to go flat and to room temperature, that it provided some relief. For sleep, I found Melatonin helped. I tried it after I started having severe tinnitus. Interferon is known for causing and aggravating it. I read an article that low doses of it might help reduce it and fortunately it did. But I also noticed an improvement in my ability to fall asleep and stay asleep, when I was supposed to be sleeping. It's inexpensive and worth trying. However, it took a couple of weeks to notice a difference. But when very little has worked, it's a good place to start.
Tig
Hi Omna:
Regarding your nausea: I felt like I had morning sickness every day of my tx and what finally worked is a prescription medicine called Ondansetron. That stuff works and it works fast. It is the same medication they give to chemo patients.
Before I got that, however, I tried soda crackers with ginger ale or a small glass of a carbonated beverage. That helps for a little nausea but for a lot of nausea only the Ondansetron worked. If you want you can ask your doctor about getting a script for Ondansetron if the nausea continues.
Hang in there! You are doing great.
I use melatonin time release (nutraspray) and 5htp (which also increases seratonin and may help with depression). Start with low doses of both and work your way up till you sleep like a baby.
All the tests leading up to my Tx waiting on approval for the expensive combo being told I have a protein that might indicate HCC, delaying treatment until I could get MRI and CT scan to rule out cancer. No wonder I couldn't sleep.
I found the strong sleep drugs ambien and the like made me dopey the next day. I used benadryl with some success to make me drowsy. Often just warm milk and a good book did the trick.
I have to say halfway through treatment I feel better than I have in years. Other than sun sensitivity (olysio?) and riba rash this treaatment is going very well for me.
Omnamahshivaya I wish I could be more help but I seemed to have dodged most of the Sx others have experienced but I wish you the best. It will soon be over....
Omna I have a week to go on this regimen. I've had insomnia as well and it does make work more difficult. Sleep problems are a recognized se of HCV even without the meds. Take a short nap when the little one goes down. It will help. I found that when needed Zyrtec/certirizene helps me sleep a bit better without knocking me out. Stay strong, you've got a battle to win. Take care.
I'm three weeks into Olysio/Solvaldi and am unfortunately starting to experience insomnia. Sucks. Because I have a toddler who wakes me up about 5:30-6am every day. Last night I was up from 2:45 am til about 4:34 am and finally took half an ambien to sleep... and I was finally in a DEEP sleep when I got that charming but unwanted wake up call at 5:30.
Also, I have what feels like "morning sickness" nausea most days but it comes and goes. And my eyes are very sensitive to the bright sunlight - but it's super bright here right now.
And I've been covering up a lot b/c it's been in the high 90 degrees here, so I haven't gotten burned yet but it's not easy to cover up while driving, getting the mail and playing with my little guy outside. It's inconvenient but I keep reminding myself of the huge payoff!
Oh and I've been emotional. I tend to cry more... for no apparent reason other than I feel nausea and emotional. Today I was feeling like I wouldn't be able to go the next two plus months on this. I felt like giving up b/c honestly, it feels so challenging doing this protocol, feeling this way, and having to take care of my toddler who is at home with me all day and very attached. But I will forge ahead. I think of all of you and how much you've endured and are enduring. And all those who took Interferon. Not to mention I have a mom friend with a toddler who found out she had breast cancer two weeks prior to giving birth. It's been nearly three years and the cancer is everywhere and she copes, fights, and rarely complains. Her child is in preschool all day, but still, I commend her.
So forge on. I'm actually so grateful that I nearly cleared the virus in two weeks.
Lots of light to everyone.
Hello all,
I have a question.....I have 10 days left of Olysio/sovaldi only tx
I have been feeling pretty darn good, but what will it be like off the tx? Will I have even more energy?
As far as side effects id say the major (if ya wanna call it that) is the insomnia, minor would be a few headaches and sunburn even with sunscreen.
Labs are good accept alk phos is high and seems to be getting higher each test, but my hepatologist does not seem to be to concerned even though its gone from 248 at the beginning to 311 May 1st.
One other thing I want to share ...this may fly in the face of some peoples thinking but because my liver is in such rough shape I experience a lot of joint pain, acites pain, and as others have stated in a different thread nerve pain.
I was precribed oxycodone IR 5mg as needed, now I dont like meds at all,but I find this to be a Godsend, I don't take it every day, but every couple days 1 tab before dinner when I'm not going to go anywhere...it has greatly improved my appetite, and motivation to do things where as before all I wanted to do is just lay around hurting, and feeling depressed with the situation, and not just while taking it, but it seems to have a longer term effect.
I signed a controlled substance contract with my doc and have not had any issues getting it refilled, and I have experimented with not taking it for a couple weeks and have not experienced any physical dependency needs but do notice that the symptoms of ESLD are much more difficult to deal with when I don't take it.
So I would say if you struggle with liver problems beyond HCV like I do .....talk to your doctor it's a huge quality of life improvement and may really help those that experience more severe sx.
Is everybody waiting for HCV testing 12 weeks post tx like I am? It doesn't seem like it :-\
Anyway my main question is how do people feel after finishing the tx, I remember being very fatigued at the beginning and wonder if after nearly three months ya just get used to it being the norm.
EXCITED TO BE NEARLY DONE AND I'M SURE THE BEAST HAS BEEN CONQUORED!
Thanks, Duane
Congratulations Ryan!!! One more day? Doesn't seem possible... There are so many of you coming to the end of treatment at the same time, it's almost mind numbing that Tx can be so fast and so successful. All that and without the nasty side effects we've all come to know. I'm happy for ya man, "the end is near"!!!!!
@PW, I have to agree with you. It's seems to me and we do have some attorneys here that will probably agree as well, that these pharmacies are just asking for trouble. I'm not the litigious type but if my liver was in good shape and I could afford to wait for the next best thing, I'd go after an offending pharmacy like a rabid dog going after an ignorant bunny. Seems like they're in bad need of a precedent setting case or two. This problem goes way above the pharmacy head, but I'm sure s/he could move a lot of BS out of the way if desired. If common sense ruled society, things would be a lot simpler.
Tig
I am down to one pill each of Sov/Oly and the end of therapy. I was thinking about the differnences between the two attempts, Sov/Oly and Inf/Riba, I have had to rid myself of this virus.
I will complete the course of therapy tomorrow - I only lasted 3 months or so on Inf/riba
I have not missed a day of work in 12 weeks on Sov/Oly - I could not work for the entire time I was on Inf/riba
My hair has been growing like normal - I lost my hair in some places and it was horribly thin in others
I have gained 4 pounds on Sov/Oly - I lost 30 pounds on Inf/riba
I have been emotionally stable this 12 weeks - I was terribly depressed and felt hopeless on Inf/Riba
Normal RBC vs Anemia
The list goes on and on. I am truly grateful to have the opportunity to rid this virus at such a nominal physical cost this time. (Financial cost is no where close to nominal)
Ryan
I went through the same battle with CVS Caremark. My initial prescription was filled by a local specialty pharmacy because Caremark lacked inventory back in January. As I have encouraged in previous posts, start early and stay vigilant with your pharmacy and insurance provider. Caremark was not very forthcoming when they initially denied my second refill. I couldn't get a straight answer regarding my refill status for almost two weeks.
Good luck and let us know if you have any problems.
John
It appears Skyemed Pharmacy and CVS Caremark are fighting over my 2nd month prescription and I'm stuck in the middle, trying to get them to play nice! For some reason, my insurance wont use Skyemed for more than 30 days. Money makes everyone strange....Wish me luck.
Yes that's where we were.
Meds are being delivered Friday.
If you are talking about the Weil-Cornell in Manhattan, I visited with Dr. Ira Jacobson there several years ago and was impressed. Not only that, but I think Dr. Jacobson was the main man behind the COSMOS study upon which this Sovaldi and Olysio treatment is based. Keep us posted as the good news comes in. You're in good hands!
I am so happy reading all the great results with a minimum of side effects. My husband was approved for treatment.
Our visit at Wiel Cornell was so thorough and supportive.
Waiting for the gold-plated delivery.