Hep C Discussion Forum

Tig · Admin

RE: Lil started Harvoni this evening.

Observer · Guru

Hurray Hurray Hurray

I am so happy for you.

Canuck · Guru

Happy days lillB! Just grand to see that beauty UND. The way it should be. Glad to hear you are going to try some things to help you recover and feel healthier, you have been through a LOT! You deserve to feel good. I bet this lab report helps! : ) Big congrats on your news and this day. It's a nice feeling, that feeling of relief and feeling grateful, isn't it. You did good! C.

lilbrownie · Member

Everyone!!! I got my SVR results!

HCV PCR Quantitative Not Detected IU/mL Not Detect IU/mL

The relief I feel is indescribable. I was SO worried after all the stuff I came down with just days after my last Harvoni pill.

My doctor says nowadays they no longer require a 6 month SVR test. I am to keep testing liver enzymes once per year at my Primary care physicians office.

Iris:

I know what you mean about the lead weights, my main side effect during treatment (alternating with days I felt super energized) was profound exhaustion. I felt like my arms were full of wet sand. I still feel that way on some days, but I attributed that to shingles. I was told that it may be another few months before I am feeling 100% myself.

I too have joint pain, that kind of moves around, this is new for me since treatment and shingles. It is most noticeable in my shoulders. Could all this have something to do with Harvoni? Nobody, not even my doctors know for sure. It is a strong medicine that is given at the same dose no matter your weight, so common sense tells me that some people are affected more profoundly than others.

The closeout, I have to say that this was still easier than those before us who had to deal with the old treatments. It is GONE, and I am grateful. I am shoring up my immune system, now with good food, supplements, and exercise. I am GOING to get a shingles vaccine as soon as I am cleared to get it (doc wants me to wait till September )

I pray you get to feeling better Iris, you are in my thoughts. <3

Iris Dragonfly · Guru

Hey Lil, sorry you are dealing with all that, and it makes me wonder...seems like many of us are complaining about nerve problems. I really don't remember any mention in the sides effects of Harvoni, but I think if enough people to report these problems then maybe they will take a look at it? At least address this in possible sides?

I felt so debilitated starting day one, like I was made of lead weights. It's been terrible trying to move around even 9 months post Tx. I haven't had shingles, yet the dr. thought my back pain was that and treated me for internal shingles, prior to that treatment, which was like 3 months post Harvoni EoT, I had broke out in herpes maybe every 3 weeks. Since the Acyclovir that has actually lessened greatly. It's the tremendous joint and back pain that is taking me out now, I get these days were it feels like I'm still lead weights, real sore lead weights, do you get that too?

Best, Iris

Cheddy · Moderator

Reminder to all: the earlier shingles shot was only 40% effective. The new one 90%. It's a series of 2 shots, a couple of months apart. So if you have ever had the chicken pox, be sure to get vaccinated, especially the over 60ers. I've seen people suffer with shingles so I hope you all are up on preventions.

Best to all my buddies here!

Observer · Guru

Oh lil, you poor dear... cry

shingles are so horrid...and the flu and bronchitis as well are no picnic either.

SVR will make such a big difference to your quality of life...once you recover from your post treatment situations smile

5-1-18 · Guru

hi lil, i didn't take the antivirals either way back when. and yup, the nerve zaps lasted a few months.

i hope you feel well soon.

5

Tig · Admin

Hi Lil,

I'm glad you and your husband are finally (?) getting a hold on these different ailments. Geez, what a lousy time of it you have both gone through. That's enough for the rest of the year and then some!

Try hard to let the anxiety go for your next round of blood work. I know it's difficult, but as we've mentioned, these treatments are so effective and I'm sure you're going to fly through them with flying colors! I do know how nervous I got each time, but even on my medications, I was successful and the tests were consistently better and better, until that golden SVR came rolling in. You're on a road to wellness and this will be the cherry on top!

lilbrownie · Member

PS, thank you all for your kind support during all of this. It means more to me than you'll ever know <3

lilbrownie · Member

One of you asked if I was given any meds for my shingles, the answer is no. And yes it STILL hurts around my ribcage a bit now and then. I was told it could take months for the shingles symptoms to disappear. I have to wait till September before I get the first vaccination. My doctor gave my hubby (we have the same family doc) Tamiflu for his flu, then a steroid pak plus antibiotics for his bronchitis, THEN an Antiviral for his shingles. OH, did I mention HE caught shingles too?! The doctor was flabbergasted, could not believe we both had it. We seemed to share everything, except the hep c!! I however got none of those meds. Since I got all my stuff at once, doctors decided not to treat (except for my nebulizer). It sucked. Eight weeks later I'm still couphing occasionally. 5 more days until my SVR tests. I'm SO SO nervous!!!!

Cheddy · Moderator

That sounds awful, lil! I'm so glad you are up and at 'em again. The next few months should have you feeling better and better.

Don't overdo it. Just enjoy your (surely) hep free future.

Canuck · Guru

Oh dear!

Sorry for all that very bad luck yucky illness, yes, as 5 says, we hope things are all getting turned around now and "more better" is on the way. Dreadful, all the things you had, but, the shingles was really insulting on top of and after everything else! Do you still have any residual nerve pain from the shingles, it was around one side of your abdomen you said? Did they even consider medication for the shingles, or was it too late to start anything?

Ya, quite a few of us seem to feel the shats or get stuff just after finishing our HCV treatment, it may be as simple as the amount of stress and duress we had been under, allowing us to succumb more easily to flu and bad luck things. Certainly a rude happening after all we have been thru! Man, you must have really drank a lot of water to actually get your sodium that out of wack, usually drinking that much water is quite an effort.

Fingers crossed you have now finished having every malady known to man (and woman) and will just keep cruising smoothly from now on. Great your SVR12 is coming up, those walks and that good SVR news will definitely make a body and mind feel better.

Good to hear from you, wondered where you went! Now we know, you WERE busy! : ) C.

5-1-18 · Guru

oh lil,

my month after tx was my worst too...not sure what that was all about but it def turned around again.

so sorry to hear you were so sick and then shingles.

non of that can change the svr so that's the good news

keep on hanging in there, more better is on the way. and yay for the long walk

Tig · Admin

Hey Lil,

Whoa! That’s enough of that to last a lifetime! So sorry you had to go through all of that. The sodium loss can be deadly. Your heart doesn’t function well with that problem. Actually, lots of things can go haywire! I recently went through something similar, minus the shingles and sodium loss. I had bilateral pneumonia and bronchitis in December. I’m still coughing and my chest feels like it did when I smoked. I quit 30 years ago and this reminds me of those days.

I wouldn’t worry about the SVR testing, you should be fine. It would take quite a bit more to reduce your immune system so much that a relapse would occur. Just concentrate on getting your strength back and tell your husband, next time to keep his distance! Thanks, but no thanks, lol!

lilbrownie · Member

Hi everyone, it's been a few months. An exhausting few months. Two days after I finished treatment, my dear husband came down with flu, which he generously shared with me . I decided to do like I did when I was on treatment, and guzzle water. Bad idea since I was not eating much. Seems Influenza A takes away my appetite. I ended up in the hospital with dangerously low sodium level, which took a few days to level out. I get home and start coughing, got so bad I bruised my ribs and was in terrible pain. I then started wheezing, back to the doctor for x-rays. Happy to find out no pneumonia, but a bad case of bronchitis, they gave me prescription for Albuterol and a breathing treatment machine. THEN... I broke out with odd blisters on my abdomen, with awful nerve pain. Back to the doctor.. again. Yep... I had shingles. So.... Two weeks after I celebrated finishing my treatment, I had (at the same time) Flu, bronchitis and shingles. It was the worst I've ever felt in my 63 years ugh. After weeks of feeling like crap, I am finally well. I went for my first 4 mile walk yesterday, feeling so grateful for my health. In two weeks I go for my 12 week SVR tests. I'm a tad nervous, since my immune system was so stressed so soon after treatment. I'll let you all know how it pans out.

Ashenvale · Member

Late to the party as usual - but congrats Lilbrownie, hope it all goes well for you from now on! xxx

5-1-18 · Guru

def a round of applause for the great ppl that made the daa's possible

Canuck · Guru

Technically NO ONE is allowed to celebrate until SVR12 and beyond, but to heck with that, anyone who crashes as stupendously as you have, both in VL and LFT's, it's a done deal - you can celebrate! I am, even if you are not! I am super pleased with your crashed LFT's and VL at EOT. We just get to celebrate again for your SVR12.

What a nice drops in all your labs, your liver is having a much happier time already.

I know you did not get a VL at 4 weeks, but I thought they took some LFT's at 4 weeks? Or am i wrong?

So, how are you feeling, now that you are finished?

Me too, BTW, that feeling of "grateful" to Gilead and all the scientists and folk behind the science in giving us these great DAA's. C.

Cheddy · Moderator

No kidding, Lil. Not only are the little HCV buggers tenacious, so are you!!! It's great to be a survivor and to know that you can get through the most unexpected challenges and come out with great gratitudel!

Well done, Lil.

lilbrownie · Member

I HAVE learned from all this what tough, tenacious , little buggers this HepC virus is, and and how amazing it is , that there is a clean drug that can fight it so effectively for the most part, and if it doesn't work, there are other drugs like Vosevi .

For anyone reading this later ; don't hesitate, you can do it. If anxious, nervous , sensitive lilbrownie can do it, you can!

My journey through treatment was , for the most part uneventful, compared to what was going on , on a cellular level. There was an all out war going on in my body!! I am eternally grateful to all the unknown, unsung hero scientists/ researchers who made this possible.

I remain positive and will update .

-- Edited by lilbrownie on Friday 8th of March 2019 12:11:28 PM

lilbrownie · Member

Thank you all, I spoke further to my doctor , plus I sent a copy of my test results to my Primary Care Physician, who has been my beloved family doctor for over 25 years. They both said this is great news, and the < stuff is understandably confusing. Perhaps I an a pragmatist, I'm happy for the work my magic pill did, but I'm going to put off celebration till I get my final results

5-1-18 · Guru

lil brownie.

this is it.. your stats are good... you did good. the daa's did good.

i focused on the not detected part ..... not sure why they confuse us with the less than thing..

but for sure, you will be club zero after all this

-- Edited by 5-1-18 on Friday 8th of March 2019 02:42:20 AM

Tig · Admin

Hi Lil,

I agree with Lam, don’t worry about it. You can still be detected, but below the LLOQ, or Lowest Level of Quantification. It only takes a straggler to put a blip on the PCR radar. It has been documented in others at EOT and each went on to SVR12. If you want to ask, see if you can get it repeated at Week 4. I bet it will be undetected. Do your best to not overthink it. The time from EOT thru week 12, always seems like it’ll take forever. It’ll be over before you know it!

lamassu · Senior Member

I would not fret about it. Even those whose HCV PCR Quantitative comes back undetected may still have a few HCV virus hiding somewhere in the body. When you have the test repeated in 3 months the test will most likely come up undetected. There is some variance between labs so if you have a choice you might want to use a different lab for the next test. The gold standard is still undetectable 6 months after end of treatment.

lilbrownie · Member

Okay, I'm kind of confused. I got my results, and here they are. I'm a numbers person, so I was baffled on this, called the office and I was told not worry, I mean you either have it or you don't , right?

My doctor told me these tests are incredibly sensitive, and anything under 12 copies is considered undetectable, so why is it show HepC still in there? I was told I may see this, and not to worry, in their opinion, I was in remission.

I will be retested in 3 months, but they are confident I will be cured.

Also got a pretty comprehensive Metabolic work up and all was normal. I did notice my AST and ALT numbers have skydived to normal.

HCV PCR Quantitative Detected <12 IU/mL Not Detect IU/mL

This result is a positive result indicating the presence of

hepatitis C virus, but at a level that is below the limit of

reliable quantitation for this assay.

COMPREHENSIVE METABOLIC PANEL - Details

Component Your Value Standard Range

Glucose 99 mg/dL 70 - 100 mg/dL

Creatinine 0.76 mg/dL 0.50 - 1.20 mg/dL

BUN 11 mg/dL 5 - 24 mg/dL

Sodium 135 mmol/L 135 - 145 mmol/L

Potassium 4.4 mmol/L 3.5 - 5.5 mmol/L

Chloride 97 mmol/L 96 - 108 mmol/L

Bicarbonate 24 mmol/L 18 - 30 mmol/L

Anion Gap 14 mmol/L 5 - 16 mmol/L

Calcium 9.8 mg/dL 8.5 - 10.5 mg/dL

AST 27 U/L 0 - 40 U/L

ALT 29 U/L 0 - 35 U/L

Alkaline Phosphatase 54 U/L 28 - 123 U/L

Albumin 4.5 g/dL 3.8 - 4.8 g/dL

Bilirubin, Total 1.0 mg/dL 0.1 - 1.3 mg/dL

Total Protein 8.0 g/dL 6.5 - 8.2 g

CBC W/ AUTO DIFFERENTIAL - Details

WBC 8.8 10e9/L 4.3 - 11.0 10e9/L

RBC 4.42 10e12/L 3.93 - 5.19 10e12/L

Hemoglobin 14.2 g/dL 11.6 - 15.9 g/dL

HEMATOCRIT 43.4 % 35.7 - 47.8 %

MCV 98.2 fL 83.2 - 100.5 fL

MCH 32.1 pg 26.8 - 33.3 pg

MCHC 32.7 g/dL 30.9 - 34.7 g/dL

Platelets 281 10e9/L 170 - 422 10e9/L

MPV 9.0 fL 9.3 - 12.9 fL

RDW 11.8 % 12.2 - 15.3 %

RDW-SD 42.6 fL 40.1 - 52.1 fL

Nucleated RBC, Absolute 0.00 10e9/L 0.00 - 0.00 10e9/L

Nucleated RBC 0.0 0.0 - 0.0

Neutrophils 58.8 % %

Lymphocytes 26.7 % %

Monocytes 10.7 % %

Eosinophils 2.3 % %

Immature Granulocytes 0.5 % %

Basophils 1.0 % %

Neutrophils, Absolute 5.17 10e9/L 1.80 - 7.80 10e9/L

Lymphocytes, Absolute 2.35 10e9/L 1.00 - 4.00 10e9/L

Monocytes, Absolute 0.94 10e9/L 0.20 - 0.90 10e9/L

Eosinophils, Absolute 0.20 10e9/L 0.00 - 0.45 10e9/L

Basophils, Absolute 0.09 10e9/L 0.00 - 0.20 10e9/L

Immature Granulocytes, Abs 0.04 10e9/L 0.00 - 0.10 10e9/L

GFR CALC - Details

eGFR Non African American >60 mL/min >=60 mL/min

eGFR African American >60 mL/min

-- Edited by lilbrownie on Thursday 7th of March 2019 05:08:34 PM

-- Edited by lilbrownie on Thursday 7th of March 2019 05:10:07 PM

-- Edited by lilbrownie on Thursday 7th of March 2019 05:24:00 PM

Cheddy · Moderator

Good to hear from you Lil Brownie!

Oh yeah, I remember having a case of the scares. And that fatigue! Good that it does pass and that you are not feeling it continuously. I became acutely aware of how important water is. Still, now I am quick to notice when I starting to run low. I like the way 5 put it so I'm just going to repeat it below. Happy EOT LilB!

Permalink Reply Quote More
lilB, EOT , we all had the scareds before our labs.... it's fight or flight instinct, we are born with it you will be fine, these pills work. and oh yea, i can relate to that weired tired ,am i dying feeling. so glad it's all over now ,.. we'll celebrate soon. and for sure, they got back up meds up the kazoo now days; still i'm sure these worked for you too

Hoodietree · Senior Member

Congrats on your EOT Lil brownie

Ive got my dancing shoes all ready to celebrate your UND status with a great big happy dance! Please keep us posted and thanks for the update!

5-1-18 · Guru

lilB, EOT , we all had the scareds before our labs.... it's fight or flight instinct, we are born with it blankstare

you will be fine, these pills work.

and oh yea, i can relate to that weired tired ,am i dying feeling. so glad it's all over now ,.. we'll celebrate soon.

and for sure, they got back up meds up the kazoo now days; still i'm sure these worked for you too

Canuck · Guru

Hey lilB,

Good to hear your news.

So, all finished your pills (tomorrow) and then off for your EOT blood draw on Tues.

Hooray!

Harvoni has cured SO SO many, I am betting it has easily done the trick for you, just like it has for thousands of others - I am betting you are very well cured right now! Even though your doc is right - "officially" we cannot use the word "cure" until SVR12. It is good he will be doing a SVR24 as well. People like to get good news repeated. Some docs are not even doing the SVR24's.

I know you did not get a 4 week VL done, but you did have 4 week LFT's drawn (I think you said?), so, did you say what those LFT results were?

He is also right about the not fretting about extending Harvoni (should you have been slow to respond), there is EVERY likelihood you have already been perfectly well-cured with the harvoni, so, it is just a wasted concern, and had you not been cured on harvoni, then the other new regimes would work perfectly for you.

I too, did not always drink enough water while on my vosevi and I know i paid for it! I just found it so hard to believe (at the time, whilst I was in the midst of things) that i needed to drink more - but lesson learned, often too late, I still to this day try to drink more water, I can still help myself cure a headache or maybe feel a little better just by making sure I have enough water in me!

Harvoni has SUCH a great track record - but we know and understand what you are going through with doubt, many of us still go through worry about failing. Until you get your EOT bloods back (which will be great relieving feedback), just keep concentrating on the TRUTH of HOW UNLIKELY failure is. Your doc is right to express to you that he would be VERY surprised if harvoni had not worked beautifully for you. You will not have to be worrying about drinking water while doing another treatment - cuz you won't have to do another treatment - you will only need to worry that you drink enough water period (in general - as a "cured" person!) as it always does a body good. C. ; )

lilbrownie · Member

Canuck wrote:
Hey Lil B,
You are a positive trooper!
You said ... " My doctor was careful in saying that if I am UND in 4 weeks, I'll be in " remission" and not until 6 months UND I can say I'm cured. " ...
In other words, your doc plans on giving you a VL at EOT, and then again testing your VL at EOT+12 weeks (3 months after EOT), and then again at EOT+24 weeks (6 months after EOT) - is that what you are describing? Historically, that has been a fairly typical (standard) EOT protocol, to test for SVR 12 (sustained virological response at EOT+12 weeks), and, some docs still do test for SVR 24 (at EOT +24 weeks).
Your treatment is only 8 weeks, just as mine was, and just as a fair number of other folk around here who have been nicely cured on short courses. Many people are still receiving 12 week therapies though, perhaps the majority, it may be a case of we just don't get to see how many of us do get the short courses though.
Many have been easily cured on 8 weeks of harvoni, so will you be cured, so be positive when you doc speaks of having a "back-up plan", it is just him doing "due diligence". You said ... " My doctor has laid out a plan in case I don't respond, including a timeline and alternative medicine. " ...
This is just good preparation and planning - mind you i wish i knew what his "plan" was??, did he tell you?? - would it be simply to extend your harvoni by 4 weeks, or, would he choose to be re-treating you at another time with a dif regime??
Regardless of whether a person is on a 12 week therapy or an 8 week one - i am a big believer in "you can never have too much information, nor have it too early". Whether you are on an 8 week or 12 week therapy, I like to see everyone receive a 4 week VL and LFT's, so that they can know where they are at, that they have started to respond well to the drugs (but, if you are on a 8 week course and your doc elects to do only a EOT VL), then (in that case) i would ask for the VL to be done early (plenty shy of your EOT date) just so that if he chooses to, he might extend your Harvoni therapy by 4 weeks seamlessly.
As Tig mentioned, VL testing is not that great an expense (nowadays) when you look at the overall cost burdens of treatment. Being on a short course (just like many others who are on ANY length of therapy), I would prefer and appreciate to know how well therapy has affected my LFT's and VL at the week 4 mark. Having all the info possible is only good feedback and can only help gauge options, if options ever need to be considered. That's the way i look at it anyway.
But, i am just wasting words here - as you ARE going to be well cured and quick too! Just wanted to share my thinking on rationales.
5 is right, if you start getting headaches or constipated or perhaps any other not so nice feeling, you'll soon know to try drinking more water. Just like being on quite a few different kinds of drug therapies (from antibiotics to whatever), your GI tract/liver and kidneys bear the brunt of dealing with the processing and excretion of same, water often does a body much good and is a helpful ally at any time, especially when on many varied drug therapies. Sof in your harvoni for instance is mostly dealt with by your kidneys, it is really quite difficult to do water intoxication to yourself to any degree that would appreciably show up in low sodium blood levels for instance, but the ample water intake certainly helps the sof course through every cell of you and sof's aftermath being excreted nicely in dilute urine, and all the while perhaps preventing feeling sides. That's what i think anywho. : ) C.

Hi Canuck..

To answer your question, about my doctors plan in case I do not respond, he said he would NOT extend the Harvoni after this last pill. That is why he did not do a VL mid-treatment.

IF (and he said he would be extremely surprised if I did not respond) was to wait a few months, and move to another medication that works on nonresponders, instead of putting me on more Harvoni. According to him, if I am not responding to Harvoni at 4 weeks, keeping on it would most likely not help.

He plans to test me at EOT, then at 3 months, and once again at 6 months. At 6 months UND, he said he would be confident in saying I was cured. He said he used to test all the way up to one year out, but no more.

It is interesting that after he told me it was not necessary for me to drink a gallon a day, I stopped. You know what? I did not feel as good! IF I have to do this again, I will drink ALOT like I did the first 30 days.

Hope I clarified some things!

lilbrownie · Member

Hi everyone!

Been awhile since I have posted, and tomorrow is my last pill.

So...my journey since I last posted, has been interesting. The only side effect I had, and it really was only a couple of days a week, was OMG Fatigue and anxiety. I have gotten to where I recognize it coming. First, my hands and arms would get this odd heavy feeling. Then I would just get SO tired. I mean, so tired I could barely speak tired. This would make me anxious so I could not sleep. Thank God, I have my low dose Xanax, it got me through those days. Last Sunday was brutal, my poor hubby was so worried. I just laid there on the recliner, cold, exhausted, and he felt so helpless. Next day I was fine. SO weird. Since that awful day last Sunday, I have been fine. Great in fact.

I go in on Tuesday for my EOT tests....guys I am SO nervous. I know I said earlier in treatment, that I was not going to worry about the outcome, but I was lying to myself and to you all. I am SO afraid this didn't work. I know there is a possibility, but right now, at this second, I am just shaking inside. I said I would not go there...well I did :(

I know also there are alternatives to those who fail Harvoni, my logical mind knows if that happens, I'll soldier on and do THAT too...but fear is kinda trumping logic at this point lol.

I will let you all know what the results are as soon as I get them. Many of you said this would be a roller coaster for some of us...well you were right!

-- Edited by lilbrownie on Sunday 3rd of March 2019 08:53:05 PM

Canuck · Guru

Hey Lil B,

You are a positive trooper!

You said ... " My doctor was careful in saying that if I am UND in 4 weeks, I'll be in " remission" and not until 6 months UND I can say I'm cured. " ...

In other words, your doc plans on giving you a VL at EOT, and then again testing your VL at EOT+12 weeks (3 months after EOT), and then again at EOT+24 weeks (6 months after EOT) - is that what you are describing? Historically, that has been a fairly typical (standard) EOT protocol, to test for SVR 12 (sustained virological response at EOT+12 weeks), and, some docs still do test for SVR 24 (at EOT +24 weeks).

Your treatment is only 8 weeks, just as mine was, and just as a fair number of other folk around here who have been nicely cured on short courses. Many people are still receiving 12 week therapies though, perhaps the majority, it may be a case of we just don't get to see how many of us do get the short courses though.

Many have been easily cured on 8 weeks of harvoni, so will you be cured, so be positive when you doc speaks of having a "back-up plan", it is just him doing "due diligence". You said ... " My doctor has laid out a plan in case I don't respond, including a timeline and alternative medicine. " ...

This is just good preparation and planning - mind you i wish i knew what his "plan" was??, did he tell you?? - would it be simply to extend your harvoni by 4 weeks, or, would he choose to be re-treating you at another time with a dif regime??

Regardless of whether a person is on a 12 week therapy or an 8 week one - i am a big believer in "you can never have too much information, nor have it too early". Whether you are on an 8 week or 12 week therapy, I like to see everyone receive a 4 week VL and LFT's, so that they can know where they are at, that they have started to respond well to the drugs (but, if you are on a 8 week course and your doc elects to do only a EOT VL), then (in that case) i would ask for the VL to be done early (plenty shy of your EOT date) just so that if he chooses to, he might extend your Harvoni therapy by 4 weeks seamlessly.

As Tig mentioned, VL testing is not that great an expense (nowadays) when you look at the overall cost burdens of treatment. Being on a short course (just like many others who are on ANY length of therapy), I would prefer and appreciate to know how well therapy has affected my LFT's and VL at the week 4 mark. Having all the info possible is only good feedback and can only help gauge options, if options ever need to be considered. That's the way i look at it anyway.

But, i am just wasting words here - as you ARE going to be well cured and quick too! Just wanted to share my thinking on rationales.

5 is right, if you start getting headaches or constipated or perhaps any other not so nice feeling, you'll soon know to try drinking more water. Just like being on quite a few different kinds of drug therapies (from antibiotics to whatever), your GI tract/liver and kidneys bear the brunt of dealing with the processing and excretion of same, water often does a body much good and is a helpful ally at any time, especially when on many varied drug therapies. Sof in your harvoni for instance is mostly dealt with by your kidneys, it is really quite difficult to do water intoxication to yourself to any degree that would appreciably show up in low sodium blood levels for instance, but the ample water intake certainly helps the sof course through every cell of you and sof's aftermath being excreted nicely in dilute urine, and all the while perhaps preventing feeling sides. That's what i think anywho. : ) C.

5-1-18 · Guru

Tig wrote:
5-1-18 wrote:
it's such a comfort to know that they do know what they are doing with us now days
Hey 5, Are you sure?

hahahaha, . hubs is sure that the dr tried to poison him with an extra month of harvoni , but he never had to try interferon so..... he is cured now so to me that is the most important part of our life; and i can see his improvements but they are too slow for him cry

and i can understand his frustration.

i wonder if a week would be enough since the life span of the virus is 3 weeks.... oh well, i think 8 weeks was ok for a life saving treatment

-- Edited by 5-1-18 on Tuesday 5th of February 2019 07:15:34 PM

Tig · Admin

5-1-18 wrote:
it's such a comfort to know that they do know what they are doing with us now days

Hey 5, Are you sure? wink

Hoodietree · Senior Member

1 week! Thats awesome. Then can we tell those whippersnappers how lucky they are and how we had to do TWELVE WHOLE WEEKS??

5-1-18 · Guru

it's such a comfort to know that they do know what they are doing with us now days

lilbrownie · Member

5-1-18 wrote:
hi lil,
i think they change protocol every few months as new stats become available.
if you want to, go to your regular dr for a liver panel.... just that the liver panel makes us feel better when we see it going well. it's true tho, the tx is so good now days that they assume it will work.
you will drink more water if you need to
glad to hear you are resting

Oh this is so true!

My doctor told me he is confident that a ONE week treatment will be possible sooner than we think. It's amazing!

lilbrownie · Member

Thanks for the replies and support! About the viral load test, I find I really don't have much interest in knowing at this point.

My doctor has laid out a plan in case I don't respond, including a timeline and alternative medicine. I prefer to think this course will be successful, but if not , I'll deal with it then. I'll know in 4 weeks if this has a chance of being a cure.

My doctor was careful in saying that if I am UND in 4 weeks, I'll be in " remission" and not until 6 months UND I can say I'm cured. Until then, I soldier on ;)

-- Edited by lilbrownie on Monday 4th of February 2019 10:49:46 AM

5-1-18 · Guru

hi lil,

i think they change protocol every few months as new stats become available.

if you want to, go to your regular dr for a liver panel.... just that the liver panel makes us feel better when we see it going well. it's true tho, the tx is so good now days that they assume it will work.

you will drink more water if you need to

glad to hear you are resting

Tig · Admin

Hey Lil,

Back when I was on treatment, the viral load was a required test. Many of the protocols demanded it. They called it “response guided treatment”. If your viral load wasn’t crashing or was elevating, they would stop treatment. We had to have them at least every four weeks.

Your doctor is right, the value during treatment is of little use, unless it’s elevating. There is a lot to be said about that VL at 4 weeks though, it’s a huge morale booster. They used to be expensive, I paid $1800 for one once! They can be had now for $200, big difference. There are labs that will do them on demand (without a doctor’s order), if you’re willing to cover the cost.

Your energy swings are very common. Enjoy the buzz and take a nap when the fatigue sets in. You’re going to experience this as long as you’re on treatment and about a month post. Your body is in a tug of war with a determined Dragon! They don’t go easily, but little do they know, it’s futile...

lilbrownie · Member

Hi everyone!

In three days I start my next box 28 pills. I visited my doctor who told me that he would NOT be doing a viral load test until I finish treatment. He said VL would not affect his treatment protocol at all, it is an expensive test, and unnecessary at this point. At the end, in four weeks, I either responded to treatment or not. Afterward, I will be monitored at three-month intervals, until six months.

So...this time they only did a Differential CBC, which was mostly normal with slightly higher Neutrophils (Absolute) at 8.75, which I guess my body is fighting something at this time. WBC was also slightly higher this test, but the doctor does not seem concerned.

The fatigue/energized cycle comes and goes, but its mild and it passes within a day or so. I think I get fatigued because on the day I'm energized, I way overdue. I mean WAY. SO I am forcing myself to rest even when I want to go full blast.

One thing the doctor did comment on, is the hydration. When I told him I was drinking a gallon a day, he asked: "on purpose?" I laughed and said yes. He told me it was NOT necessary with the DAAs, as it was with the old Interferon treatments. In fact, he sais as small as I was, he wanted me to be careful of getting an electrolyte imbalance by drinking too much water. I told him I used to do two liters a day, now I do three. He told me to keep at it if I wanted, but two liters for my body weight is FINE. So...I went down to two liters and I feel about the same other than I have to pee less haha :)

As soon as I am finished I am going on a juice cleanse, Proteolytic enzymes, and acupuncture to normalize the army that is working full blast right now. Can't wait!

Take care and will write more soon

Iris Dragonfly · Guru

Wow half way already? you go girl! sounds like you got this in the bag.

love that sign C.

best wishes, Iris

tanner · Senior Member

Canuck wrote:
: )

I am starting to copy & paste all these wonderful images to hang around all around my office and kitchen; this, Tig's water jug. The images make me smile and give me and probably most of us, a good push to stay positive.

Observer · Guru

Halfway done. Yay

No sides. YAY

Canuck · Guru

: )

Image result for halfway there

5-1-18 · Guru

lilbrownie wrote:
Hi all you lovely folks , thanks for all the replies and positivity, haven't posted in a few days , been super busy. Feeling fine, no more sides for now. Go for blood work this week, and pick up my last box of magic pills. I'll post results when I get them, crossing fingers it's good. Half way there phew! TTYL !! Lil

great news lil

Tig · Admin

Drummmmm roll, pleaze!! I know the results will be impressive, they always are with these new treatments. No side effects is always good to hear and calms the fears of others behind you. It’s nice to know how much easier things are getting.

Keep hydrating, that’s going to keep the SFX at bay.

Cheddy · Moderator

Eager to hear, Lil

lilbrownie · Member

Hi all you lovely folks , thanks for all the replies and positivity, haven't posted in a few days , been super busy. Feeling fine, no more sides for now. Go for blood work this week, and pick up my last box of magic pills. I'll post results when I get them, crossing fingers it's good. Half way there phew! TTYL !!

Lil

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