Canuck, 

Appreciate your input, it helps me heading the right direction. If I can't get into my new Dr quickly, I'll get tests done myself. Gonna have to be more of a squeaky wheel with my liver and kidney Drs, it would be nice to have a little support from them. 

Lchris1,

When you first joined and told us you were on an "every other day" regime of the sofa, I searched for other cases, and found only some studies done where they reduced sofa for people with renal insufficiencies. Sofa is dealt with by the kidneys, dac is not, explaining why (perhaps) he decided on full dose of dac but with reduced sofa at every other day? Your regime is unusual, but I can only guess that kidney function was what your hepatologist was trying to take into consideration? You did need treatment for your HCV, that was a priority, and, so would be preserving kidney function (IF the effects of sofa on kidneys IS truly a concern in your situ), I certainly would not know, I can only guess. There are some writings about sofa, where they say it is OK in full dosage for "degrees" of renal insufficiency, especially found so in the manufacturers guidelines. 

You had a UND for your 6 week PCR and that is a very positive heralding sign of your regime working well. Also, at 6 weeks (and all along), i believe both your docs shared the same lab work, including your LFT's and kidney function tests, (so, me reading between the lines of your posts on this) all labs appeared to be good and/or holding - that is also a good sign. So, IS it right or wrong, considering your kidney function, and your HCV, to BE on reduced sofa?? Maybe your hep doc not "wrong", your other doc's nurse said "that's not the way it is done", how can you feel assured without a good doc to talk to, to be at your side to guide you! If the feedback and following is limited with no opportunity for Q&A's, then you need an extra middleman doc to go to for coalescing/wholistic oversight - a "family" doc?, or, would it be possible to ask your nephrologist to be the middleman and help oversee you through this treatment period? Perhaps they feel they ARE assessing you/ following you adequately (to their satisfaction), but it really seems to be leaving the pt. out of the communication picture during a long and stressful treatment period!

It IS really good you have made sure to have frequent labs for LFT's and kidney function. And, you said both of your doc's each get a copy of these, right? So, if something was untoward, one or both would contact you??

Because you are on a different regime, and because you have kidney and other labs which need to be well followed, you DO need an eye ball to eye ball doc you can access, sit in a room with, and talk to, for Q&A's. You do need feedback/opinion about the reduced sofa dose, and, on how your kidneys are doing, I would keep on with the frequent kidney/LFT labs and, personally I would want a 12 week PCR (at least), in addition to the end of treatment one at 24 weeks. Then a EOT+12, +24, +48. I would assume a doc would WANT to follow you after treatment, including further imaging, just based on your cirrhosis, but as well because you have other conditions that should be followed.

DO get an accessible doc, ask for his opinion (on everything). Ideally he should be knowledgeable on BOTH HCV and nephrology. If time and money are no obstacle, then I would want to be to be tested/followed frequently, I would ASK to be tested and followed frequently.

I so admire how well you have pulled for yourself, and the good job you are doing, all on your own, getting yourself to treatment and coping with all of it. Very admirable indeed. It would be nice if you had more help and advice from them through it tho.  C.

I was happily ignorant about the every other day Sovaldi till I got to this forum. Been a little unsettling to find out this schedule is unheard of... it's been around 6 weeks since last vl, -with the cost of that test I don't want to do it unnecessarily. I'm getting a new primary care physician in a couple days, my last one moved a few weeks into treatment . My Dr situation could be better. I'll try to get with  new doctor,  (it's cheaper if they order tests), otherwise I'll get tested myself soon. It's morning in dehli, I'll  send an email that way..

Honestly, I have never heard of every-other day dosing with Sofosbuvir/Sovaldi with Dac Did your India doc give you any supporting information? I'm curious to know more about your regimen. Whatever the case, I'm glad you're getting this chance to treat. 

I wouldn't want to wait 24 weeks for my VL test. Trust me, it would fuel too much anxiety and opposing little voices. 12 weeks can seem like forever when it's YOU that's waiting! The latest viral load guidelines call for a test after 12 weeks following treatment. Some have one at the end of treatment and EOT+4. If you remain undetected at EOT+12, you are considered SVR12 and unless there is a desire to have additional testing, you're done with HCV. Some physicians want that 24 week test, perhaps out of habit or curiosity. That's between you and your doc.

The next time the Dr in India wanted a Quantitative test is at 24 weeks(EOT).  Is there any reason to get tested before then?  I've had 3CMP & CBC done since starting treatment, was going to have another in a few weeks,  is that reasonable?

Pablo- yeah, I got 30% ? Kidney function, Dr has me on sofosbuvir every other day & daklinza daily. 

Yo L'Chris

Congrats man.  24 weeks of sof/dac - nice one and should do the trick.

What's this about a lower dose of sofosbuvir?  Is that 'cause of the kidney probs?  What's the dose out of curiosity?

Pablo

"Half Way".

LOL that was so yesterday eh?

Cheddy- I like that-"learn not to believe everything we think at the  moment ". I can use that.

Good to hear from you Canick,  yeah my work schedule can be a challenge sometimes, I've cut it back but I've always had problems saying no...I  still tend to estimate jobs from the perspective of an all around healthy guy. My Dr situation is about the same,so I  found a lab thats reasonable,  been thinking about getting a  PCR done soon, -kinda waiting to talk to a new primary care physician in a few days first-, that's a bit more expensive and I'd rather not pay out of pocket. 

Hey Lchris1,

I was just talkin about ya the other day, about being on that lower dose of sofa thing.

I am glad to hear from you again and your update. Good to hear you are OK, and getting on, and dealing with everything. That you have been getting your bloods done (between the docs), and perhaps, between all your work and travel which i think you may do a lot of? I like your avatar pic BTW, hee hee. Pushing yourself through this, past work and fog is one thing (an admirable feat knowing how hard it can be), but rest/relaxation/pacing your energy/working on some regular stress-busting fitness and a healthy diet can take a back seat, when you are motivated and pressed to continue as usual. It not JUST the water and pills and labs that will assist in treatment and getting healthier. Maybe you can figure out a way around the demands of your schedule to get more rest and do non-stressful healthy things. That could only help. Maybe make the next 12 weeks a wee bit easier? Is there any wiggle room in your schedule? 

I assume all your LFT's, renal bloodwork and BP are OK and/or holding. Your 6 week UND was great news and heralds the rest of the good news to follow, but I cannot recall when your next PCR is, you'll have to tell me again, (sorry) when your next PCR(s) planned?

It's great you are at the halfway mark!!! It IS a long haul, 24 weeks, but you should be feeling very proud of yourself not only for getting yourself to treatment, but for slogging it out so well, making it work, and doing well.  C.

Chris,

Wow.  You've got it: whirlwind, forever centered on hepc, keeping the faith, a better person for all of this.  Hang it there.  Your strength will pay off.

The mental fuzziness is disconcerting. It does get better in spite of the fear that you may be losing it  You're not.  You're just half-way.

Somewhere along the way, we learn not to believe everything we think at the moment.  The next moment comes and we climb out of the muck.  Life really is better post hepc.  Keep your eye on the goal and your new future.  Good for you for facing the journey.  Relax as much as you can let things unfold.

We're with you.

Cheddy

Thanks Jimmy,Tig,the whole things a trip- been a whirlwind since being diagnosed in January. In a way it seems like forever that my life's been centered on hepc. Appreciate the encouragement to be positive,  try to remind myself but I get a bit drained dealing with everything. I got faith that I'll soon be hepc-free,  and be a better person  for all of this. 

This is a good report! Half way through and you're feeling better than you have in a long time. That's wonderful and worth sharing by all means!

The mental fuzziness, we fondly call it "Brain Fog", is very common and will improve following treatment. It's something we have all dealt with before and during treatment. It takes a while to resolve, but you can look forward to even better days ahead.

Keep a positive attitude, it's so important. The days you feel less than stellar, just check in here and somebody will crack a joke. I guarantee it will be enough to put a smile on your face! Especially if it's one of my lame ones... Never was a very good joke teller, lol. 

Continued good luck to you!  

It is all downhill from here. Once you get there it is hard to believe you have arrived.

The whole thing is quite a trip actually.

We are blessed.

JimmyK

Just about 12 weeks in, 12 to go. Physically feeling better than in a long time. Lacking some strengthings- stamina. Still don't have any communication with the gastroenterologist, lab results are steady. I've had 3 CBC's & CMP's done since starting tx, kidney Doc had couple other labs done. Mentally still fuzzy, forgetful to a point that causes some concern. Anything outside my normal schedule is kinda up for grabs. Been having to apologize to clients for missing things. Anyway, mostly just wanted to reach out to you all...