I will check out the nutrition section,  I've been trying to get with a nutritionist/dietitian- someone... it's a work in progress

Canuck, nah, you're not overloading me. Appreciate your perspective. 

Creatinine was 2.6 in January and has settled around 2.2 since March or so. I don't know if India will have much to say tell me till end of treatment,  but any I will send tests  I do anyway. 

That makes better sense, the LFT's drop rather quickly. I wasn't sure if your Indian physician had meant fibrosis when writing it that way. That's what happens when I assume, my bad!

I'm also curious about the beet smoothies. Check out our Nutrition section for some good smoothie recipes.

Hi LC,

Sorry if I am overloading you. I am actually only wanting things to go easier for you! I also know what it feels like to make sure everyone has a copy of everything, for a short while I had 3 docs, public health, and myself to make sure all had copies of pertinent stuff at one point!

I thought maybe LTF was really just a transposed LFT.

One of your docs says "downtrending", the other says "normal", both comments can be true - any which way you take it, both comments are good news, goes well with your UND. So too, is it good news, his unelaborated upon "unremarkable" U/S, AFP result. Both docs get identical lab test results, right?

Creatinine was stated as being "stable" at 2.2. Sound good (perhaps like no great change for the worse?). There are differing scales - I guess 2.2 is mg/dl? Normal is (aprox.) .7 - 1.3 mg/dl. So, as I am guessing that with your stage 3 CKD, then at 2.2, they will just keep watching it and make no changes to your every other day dosing with sof? I am wondering if reduced kidney function is an acceptable justification for reduced or every other day sof dosing?? Any idea how high your creatinines have been before? Glad to hear your BP is being controlled on the meds tho. 

Both your docs are men of few words, leaves a lot in the middle unspoken and open for interpretation, frequent eye ball to eye ball visits with spoken words, going over these labs, with opportunities for Q&A's would be a benefit to you, to make sure "none of you" falls between their cracks.

Blech - beet slurries!!, you go ahead tho. Let me know how they are.  C.

Tig-

My mistake, LFT (not ltf), India had requested LFT &KFT, assume liver and kidney function test. Both Dr's  viewed same tests. I kinda got the same feeling as you said "dismissive". I'm truly grateful for Drs, but I don't feel  a lot of concern or ?...  so will keep doing what I'm doin with the meds and reach out to my primary care physician and thanking you guys for the support. By the way, gonna get out the ninja blender & try some beet smoothies.

Hey LC,

Yes, you need to get your own local specialist onboard. Those responses were fairly generic, albeit a nice read. The Indian response could be their standard reply. I assume they are referring to long term fibrosis (LTF). Very true! We are hearing from people regularly with reports of improving fibrosis scores. Takes time, but who's counting? Every day after SVR is a good day!

They were quite dismissive (imo) by signing off unti Feb. 17. That may be okay for some, but a good local doc is a big plus, especially where testing comes into play. I'm still curious about the unusual Sovaldi regimen. 

Canuck,

Just to let you know, actually heard from both Dr's today.

India said "there is a decreasing trend in LTF. HCV RNA report is good. Please continue treatment.  Best wishes,  --------

Local Dr wrote: "creatinine stable  at 2.2. Liver function tests normal. Hep C  viral load is undetectable. Alpha fetoprotien level and ultrasound were unremarkable.  ...recommends cancer screening every 6 months.....will contact you in February 2017. ".

Anyway, think I'll send a message to my primary care physician, for starters.                      

Lchris, you can scroll up and down from the area reply from to see the messages you are replying to.

Canuck- it's tough to  reply to you, tryingto remember your questions. I made notes last time. My BP is being effectively treated with spironolactone, amlodipine,& propranolol. 

Since January, I have a GP, gastroenterologIst, and nephrologist. All associated with the hospital of my initial diagnosis. They provide online medical records of tests and other things. I forgot to bring  my tablet on trip, but had paper copies of my records.

You're right, I need to do something about this Dr situation. Wish there was communication between both Drs... 

Have to go bid a job, (work stuff). Will revisit your reply again in a bit. Thanks again for your encouragement!

Lchris1 wrote:

---

Canucks,

I'm about 8 wk into 24 wk treatment. Three follow up consultations -wks 4,24,36-  with India, I am to send HCV RNA and CMP. Our communication is questionable as I haven't gotten any feedback since I sent test results. I'd at least like to verify he received tests. 

The Dr's office here discouraged my trip. When I finalized decision to travel, their office said "feel free  to contact our office when you finish treatment ". Upon returning I told them started treatment and they requested CMP and RNA. Since not getting any explanation of test results, can I assume no response is good?

I found a lab close by where I can get periodic CMP done at very reasonable cost.

About 5yr ago I had BP issues, didn't seem too serious. Was unaware of any health issues till January when symptoms arose.  Assume I  got HCV about 15yrs ago+/-. 

Since January I've had 2-3 ultrasound, fibrospect, liver and kidney biopsies.  

In India, endoscopic diagnosis - Portal Hypertension, GAVE, Esophageal polyp. FibroScan - CAP dB/my 249,  EkPa 29.5.

---

Hey Wendy and Juliet,

Good thing for BP meds that work for people! Welcome again Juliet, I said hello on the other thread. C.

Lchris,

Another question for you (I sure am full of 'em eh?) - are you (or were you) on any BP or other meds?? Drugs or treatment aside from sof/dac for your HCV?

I just have to commend you again for your efforts and good work in getting yourself so far. You are doing a good job of it, amidst the difficulty. I am sorry this has all caught up with you in such short order, it's a lot to deal with. But dealing with it, well, you are doing. You have got yourself assessed and that is important as is treatment.

This biggest gap (missing link in your care) I see is "the now", (between 4 weeks and 24 week EOT and on). Good, it seems your Indian doc will be expecting you to get repeat labs and PCR's at the EOT 24 week mark, and at the EOT+12 week mark. But otherwise, the "following" seems skinny. You have more work cut out for you I am afraid. You will have to pursue the communication with the Indian doc for his feedback. You need to be well followed (on this side of the ocean) for all aspects of your health, on a ongoing basis, due to your conditions and your HCV treatment. It should be an all inclusive package, observed in whole with nothing in isolation.

You seem to have ready access, to see/know your labs, including PCR results as well, which is a very good thing. The elephant in the room is the silence from your doc here. He could be doing so much to assist in helping/watching you.

Is the doc (over here) that you do not seem to be getting much assistance/watching/guidance from, your family doctor, a "General" practitioner, or is the doc over here you mention, a hep doc (some specialist your family doc referred you to)?

I think you definitely need more following/guidance/watching through treatment (and after). Work on it. If necessary, get yourself to another doc, if possible, and if you have to - surely any doc (even a good reliable GP) will see your need for this. Explain your "wholistic care" dilemma to your silent doc, to your abroad doc and see if that helps, if they cannot figure out a way for you to be better followed over here, then go shopping yourself to find a more attentive doc to help watch you on this side.

You are doing a super job. I had to bone up on GAVE. Good that Indian doc did his due diligence with the endoscopy, GI assessments and fibroscan. He obviously had all your lab tests/assessments/history from this side? YOU? provided the Indian doc your hard copies from this side? And you have had no other feedback from your doc on this side about your labs and PCR? There has not been? nor can there be? ANY communication between docs here and over there for your "continuity" of care??!! You need to be seen wholistically.

You need both your medical advisors, on both sides of the ocean to be acutely aware of you, your body and labs, so none "of you" slips between their cracks. 

I understand you have been forced to take good care of yourself but you should not be feeling alone (professionally) on any of your health issues

No response/feedback is NOT good patient care (in my book). C.

Yup at age 51 I got put on bp meds too. It does not run in my family,  all labs came back fine so mine is stress and change of life hitting. Oh joy! But being free from the dragon is a blessing and hopefully you too Diana will be clear e of that in the near future. 

Welcome to the newbies. 

Canucks,

I'm about 8 wk into 24 wk treatment. Three follow up consultations -wks 4,24,36-  with India, I am to send HCV RNA and CMP. Our communication is questionable as I haven't gotten any feedback since I sent test results. I'd at least like to verify he received tests. 

The Dr's office here discouraged my trip. When I finalized decision to travel, their office said "feel free  to contact our office when you finish treatment ". Upon returning I told them started treatment and they requested CMP and RNA. Since not getting any explanation of test results, can I assume no response is good?

I found a lab close by where I can get periodic CMP done at very reasonable cost.

About 5yr ago I had BP issues, didn't seem too serious. Was unaware of any health issues till January when symptoms arose.  Assume I  got HCV about 15yrs ago+/-. 

Since January I've had 2-3 ultrasound, fibrospect, liver and kidney biopsies.  

In India, endoscopic diagnosis - Portal Hypertension, GAVE, Esophageal polyp. FibroScan - CAP dB/my 249,  EkPa 29.5.

Lchris,

Some of that data was from the same link Jimmy posted.

So, it sounds like you are/will be followed by both docs (one way or the other), just to what degree and frequency is undetermined as yet?

What was arranged/suggested for you ... as to follow-up with the prescribing doc in Indian? Did the Indian doc lay out a suggested follow-up protocol on a ongoing basis, periodic consults, labs to be drawn with results sent to him, in tandem with seeing a doc in your own country overseeing you?? If you ARE about 8 weeks into a 24 week length treatment, who ordered the recent PCR showing UND and when was that drawn - at 4 weeks?

You did well to get and push for as many assessments as you achieved while you were waiting, and, for getting yourelf to as early treatment as was possible.

I am just curious ... you mentioned you had a "fibrospect" and "biopsy" (I assume a liver biopsy?), and write in your sig. line "Fibroscan F4" ... can you elaborate? Do you know what your Fibroscan F4 kPa number was? You also mention cirrhosis, "fatty" liver, ascites. Did you also have an abdominal ultrasound or any other imaging done then? All your tests or assessments were done since your recent initial diagnosis earlier this year??

Before your HCV diagnosis, did you have any longer standing kidney/BP/liver history? 

Do you have an idea how long you may have had HCV?

Too many questions, I know. But I am just trying to figure out how recently you arrived at your overall health conditions in relation to how long you may have had HCV.

I am glad for your first UND!  C. 

Thanks Canucks,

Some of that I read before but wasn't paying enough attention... The Dr in India was concerned about my renal function so he didn't prescribe a generic harvoni.I say I'm stage III CKD, but pushing IV, with a gfr of 30. (Stage IV <29).

Hi Lchris,

This may be too much info and not helpful, but here goes:

Searching for possible indications to justify SOF dose reductions ...

Found a few references, and I am thinking you are right, that your Indian doc is perhaps trying to take into account "stage 3" (give or take) CKD, and the accompanying high BP, as a condition to make allowances for? Perhaps he is approaching a decrease in renal ability with an abundance of caution? No idea, I've never run across SOF reductions before. People on renal dialysis though are considered a special group when considering how to treat them for HCV and what to use.

Some reference to possible SOF dose reductions do show up, but not much found when googling, but when found, they do relate to renal function.

"Standard" excerpts from Gilead's SOF guidelines

8.6  Renal Impairment. No dosage adjustment of SOVALDI is required for patients with mild or moderate renal impairment. The safety and efficacy of SOVALDI have not been established in patients with severe renal impairment (eGFR less than 30 mL/min/1.73m2 ) or ESRD requiring hemodialysis. No dosage recommendation can be given for patients with severe renal impairment or ESRD [see Dosage and Administration (2.4) and Clinical Pharmacology Gilead Sciences 12 (12.3)]. Refer also to ribavirin and peginterferon alfa prescribing information for patients with CrCl less than 50 mL/min.

(I did find some other studies that did try reduced doses of SOF (and other drugs) - giving SOF at 200 mg versus 400 mg daily, for people with some renal impairment.)

Another bit googled up:  Kind of "old", dated 2015?

Use of New Direct-Acting Agents in Patients with Renal Disease: The availability of new direct-acting antiviral agents (DAAs) has sparked major enthusiasm for treating HCV-infected patients with renal impairment. The following summarizes key studies involving use of new DAA-based therapy in patients with chronic renal insufficiency.

·         Daclatasvir: In a recent study (AI444-063), investigators compared the pharmacokinetics and safety of a single 60 mg dose of daclatasvir in patients with renal failure (moderate, severe, and hemodialysis) with healthy controls. None of the patients in the study had hepatitis C infection. The increases in daclatasvir levels in patients with renal failure were within the normal range of variability and patients tolerated the dose well.  

• Sofosbuvir: The main sofosbuvir metabolite (GS-331007) is eliminated primarily via renal clearance. No dosage adjustment is required for patients with mild or moderate renal impairment (CrCl greater than or equal to 30 ml/min). Pharmacokinetic studies using a single 400 mg dose of sofosbuvir in HCV-negative patients with renal impairment show a significant increase in serum levels of sofosbuvir and the metabolite GS-3310007, when compared to levels in persons with normal renal function. Nevertheless, the safety and efficacy of sofosbuvir has not been established in patients with severe renal impairment (CrCl less than 30 ml/min). At the time of this writing, inadequate data exist regarding use of sofosbuvir in patients with severe renal impairment (CrCl less than 30 ml/min) or end-stage renal disease requiring dialysis. Thus, based on available data, sofosbuvir may be used in the setting of mild-moderate renal impairment, but should not be used for severe renal impairment (CrCl less than 30 ml/min or in patients on hemodialysis).

Tig 

I have concern about regimen after seeing everyone's response. I did tell my Dr a few weeks ago,  his nurse told me that wasn't how it's administered and left it at that. Should have some consultations with Dr in India soon. Will discuss it with him.

Welcome to the forum.  It's been a long time since I've posted in here. And am both happy and proud to say that my husband Tom continues to be hep C and liver cancer free. This forum has been a god send to me at times and I am so grateful that I stumbled upon this at a time when I needed to vent.  Keep coming back, as you will make so  many wonderful friends and find a wealth of information. Good luck on your journey. 

Tom and Laura

Hi LC,

There is a lot of division on what's actually neccesary versus what is desired. You start with your pre treatment baseline. Genotype, RNA viral load, fibrosis estimation, CBC (Complete Blood Count) and a CMP (Complete Metabolic Profile) which includes the ALT and AST. Often, but not always done is another RNA viral load at week 4 or 6 to see how things are going. At that time another CBC and CMP may be done. People taking Ribavirin have to be monitored for anemia during treatment, but that doesn't apear to be as critical without it.

Depending on the results of these tests, additional monitoring may be required. Some doctors don't test the viral load again until the end of treatment and some not until 12 weeks after the end of treatment. They couldn't make the requirements any more confusing!

I would like to have a 4-6 week RNA viral load, CBC and CMP. Same at end of treatment and 12 weeks after the end of treatment. Other tests may be desired by your doctor.

As we have said already, that every other day Sovaldi regimen is concerning. There is no data supporting that administration schedule I'm aware of. 

Would you please fill out your signature line so we have a quick reference to your care? It helps when replying. There is a link to instructions in my signature.

How often should I  be getting  labs done during treatment? 

Now that was nice to read!

Thank you for posting it Jimmy

Syd and of course John.

In line with what you are saying see this article just out.

Healio -DAA/Liver Transplant

JimmyK

Had to shorten the link. Members may need to register to view Healio articles. Thanks.

Hi LChris,

i am in awe of you for having enough guts and determination to go to India to get the life saving treatment yiu needed.

i have known I have Hep C since the 90s but because interferon was the only treatment available here in Australia until last year I just went into denial. 

I was seeking a specialist every 6 months. She knew the new DAAs were going to be approved here eventually and made her own decision in thinking I was deteriorating slowly enough to wait. Unfortunately the Hep C went into over drive last year. I got ascites, extreme fatigue, muscle cramps, bleeding, nausea and felt very sick. I ended up getting my first 3 months of sof/dac/RIBA through a guy in Tasmania who was sourcing it in India. 

Just as my 12 week treatment ran out, it went on the PBS here so I could take another 12 weeks. I am still waiting for my 12 week EOT blood test. Anyway a long winded way of saying that I know what you are going though as do many people here.

to find out you are that sick takes a while to get your head around. They don't know how much people with decompensated cirrhosis improve. There are a lot of good news stories here from people who have been cured years ago. However most of them have less liver damage. Also some people go on deteriorating and there's not enough known about it to know why. If you've got cirrhosis through dtinking liver improvement is more likely then through Hep C and they don't know why that is either. But one fight at a time. Your treatment seems to be working. Hopefully you can have regular blood tests done and will beat this thing. In the meantime, cut yourself some slack - it's a huge thing to get your head around. Keep drinking heaps of water - especially if your kidneys are a bit dodgy. 

Good luck, this is a great place to come to laugh, cry and ask questions.

Hugs,

Syd

Welcome Lchris,

We are glad you found us. This is a place to talk about things with people who understand, have been there or are yet to go into treatment. Many people here are very knowledgeable about these protocols and when something like you are taking gets their eye, as you can see, they will chime in because we are a family and concerned for all who join us.

It would be great if you had a doctor here to watch things closely but I understand that is easier said than done. Being UND is great but please keep us posted and I am absolutely sure, there will be lots of information here for you to read and learn and questions to ask your doctor, whether here or India. These are important questions based on the combined knowledge of many people.

Take care and keep well

SF

All these responses are a bit overwhelming, in a good way.. much appreciated. Thanks Pablo and all.  I looked up a little about  taking Sovaldi a few weeks back.  Did see that daclatasvir by itself was associated with developing resistance.  The Dr. In India prescribed treatment this way, as I understand, to reduce any negative effects on my kidneys. I returned home with 6 jars of Mydacla- 3 Sovaldi. I'm not sure how much interest my Dr here is giving my treatment, he did request Comp.Metabolic and RNA PCR. How often should labs be done? It seems my Indian Dr is competent, experienced and has good credentials. I'm waiting to hear from him about lab results I sent. As far as I can tell, my labs were about the same as before treatment (except vl). 

Hi Lchris

Welcome to the forum.  And well done for going to India.

Like the others have questioned, why are you on Solvadi every other day?  Are you sure you've got this right? Sofosbuvir (the drug in Solvadi) has a 27 hour half life, which means that it lasts just slightly over a day so alternate days makes no sense...

...you are undetected at this stage - congrats - so unless we're missing something here it sounds like the velpatasvir is doing the job on its own, which it can do as it is more potent that sofosbuvir, but it is never given on its own because it is prone to RAVs (resistant mutations) unlike sofosbuvir.  And if it is working on its own that means you don't have NS5A-specific RAVS (i.e mutations that block Dac from working), but....

....you really need to get to the bottom of the alternate day regime issue as if, God forbid, you were to get a viral breakthrough you run the risk of developing RAVs to sofosbuvir by taking it stop-start.

Pablo

-- Edited by Pablito on Tuesday 23rd of August 2016 06:43:27 PM

Hey LC,

One day at a time! We'll help you get there... Here's a good thread on nutrition. It has been a favorite here:

Green Smoothie Ranch

PS: There are several good ideas in our Nutrition section, check it out!

Thanks for your comments. I'm learning to be good  to my liver, trying to develop a diet plan has its challenges. I'm still unclear how bad my lIver is...as long as it doesn't get worse.  

Hi  Lchris1

Welcome and congratulations    on not detected     Your beginning of the Hep C fight sounds a lot like mine  right down to this This statement interested me 

"After my first visit with him (when I was given 50% chance to go 2 yrs.)," 

My first dr visit was in Aug 2008 after testing he didn't give me much hope either maybe a few years / or a  A transplant.  He said he wouldn't treat me till I have 6 Mos sober and prove it  so 8 years ago and my liver still functions and does all it needs to keep me alive  I had 3 previous TX with failed as well That alone should have killed me.

I don't think they can make a call on how long you can live with cirrhosis like that  Unless its cancer  My point If you liver numbers improve as you clear the Hep C And functions your not doing so bad 

Don't do anything to stress your liver Like Drink / Drugs  Watch everything you eat is not toxic to the liver The liver is known to improve

Keep reading ask questions your on your way Good Luck

BS

Greetings and welcome.

I have to also chime in with some initial concerns regarding proper treatment.

Sovaldi dosing consists of 400 mg per day. Dosage modification is not recommended.

https://www.drugs.com/pro/sovaldi.html

You are to be commended for wanting to tackle this Dragon but in each case regarding DAA's one of the main things that is incredibly important is compliance with the guidelines. As others have mentioned, every other day dosage of Sovaldi is quite unheard of and we want to make sure you are safe and on the proper path.

Again, Welcome

JimmyK

Welcome LC.

I echo all of the comments below. 

I just wanted to welcome you to the support of this forum.  You learn so much from the people who are going through, and have gone through, this experience.  Each is unique, of course, and yours is an eye opener.  I know what you mean about being grateful for the wakeup call.  It reminds us to quit wasting precious time.  

Eat well, love lots, and drink water like crazy.

Cheddy

Hi LC,

Welcome to our group! You definitely got a diagnosis that would bring reason to pursue treatment from someone. I'm sorry you had to go through so much to get it. Good for you for going after it!

Like others here, I'm unaware of any recommended treatment that prescribes Sovaldi every other day and Daclatasvir daily. What is the dosage of each drug? I have to assume the regimen was decided by an Indian specialist. I do recommend you seek continued care here in the States to watch your progress.

It would help us if you would complete your signature line. It helps to have a brief history when replying to future posts. Wendy provided a link that will explain it. There's one in my signature as well. How long you'll be on treatment, genotype, lab values, etc., are useful.

I look forward to knowing more and following your progress. Good luck!

Hello lchris, I'm John and you in a good place to learn, share, complain, vent, brag, and just feel a sense of unity . We're all in the same boat here , battling a cowardly virus hiding in our bodies. But we will prevail and live one day at a time.

Hi LC1,

Welcome and wow you have been through it! Glad to see you are getting the help you need and most importantly that it is working. 

Here is a link to show you how to create your signature:

 Create signature/abbreviations

Looking forward to learning more about you and your treatment.

Shortened link!

Hi Lchris1, welcome to the forum! 

Thanks for sharing your story so far, and full marks to you for taking the initiative in getting yourself to India in order to obtain your treatment meds!!   And after the massive shock of your diagnosis and the thought of long delays going through the orthodox route, I can well understand your impatience! 

Great news that your first viral load test came back as `undetected`, that certainly demonstrates that the treatment is working, so congratulations on that!  Although as Canuck has already pointed out, your dosage protocol of taking your Sovaldi every other day is unusual to say the least!  I have to say I am slightly concerned about how well your tx is being overseen and I hope you have a competent hepatologist doing all the necessary labs along the way.

More people will be along to greet you soon, and we`ll be very interested in hearing more about your situation.

All good wishes and best of luck to you, I`m glad you found us! 

Hi Lchris,

Welcome here! 

Wow, what a story! I am so sorry you got "hit" like that, but so glad you took matters into your own hands, and have received an und!

I have not heard of a regime quite like yours before (sof every other day with dac daily)! 

I assume you are being guided/followed by a doc (now), all along your treatment? That you are getting all regular labs done? Who suggested this particular dosing regime (every other day sof)?

How long is your course going to be, and how far along are you now to reach this und? With one bottle of sof done (every other day dosing) you must be around 8 weeks into treatment?

So glad you have arrived and posted here, good for you for being so good at getting yourself to treatment, none of this was an easy feat!

Let us know more. I am sure more of the folk here will be along, right shortly, to welcome you!  C.

Like I said,I'm new to this online stuff and fairly new to the world of HCV. Tested positive the end of January 2016. Also diagnosed with high blood pressure, stage3 CKD, cirrhosis, portal hypertension, ascites... I'm 56 yrs old and thought I wasn't in too bad of shape till all this hit like a Mack truck.  Dr didn't give me much hope for the future. Nor did I sense any urgency on his part to address my condition. After my first visit with him (when I was given 50% chance to go 2 yrs.), I was scheduled for a 2nd appointment in mid/late August. With all the questions & fears....I couldn't wait until August. I pushed as much as I thought I could, got more blood tests,  fibrospect, biopsies, but still no treatment or plans. In June the Dr had me do a urinalysis and blook test for alcohol/drugs.- a baseline for insurance coverage in 6 months. Wait another 6 months? At that time I made up my mind to travel to India. Was I just fearful, impatient, ignorant to medical procedures.  Anyway, apparently   without Dr's approval, I went to get treatment. I was prescribed Sovaldi and Mydacla. (Sovaldi alternating days & Mydacla every day). Nearly finished with 1st jar of Sovaldi & my viral load iso "not detected ". I thank God for this disease, as it made me focus on the important things. I'm thankful for the love and long distant support of my family. I'm also thankful for all of your support and encouragement through things I face, that you've already experienced. I'm confident in being hep c cured, focusing on not letting my complications deteriorate.