Author Topic: Day 2 Harvoni + Ribavirin (Read 110194 times)

Be Free · « **Reply #100 on:** July 06, 2015, 08:12:53 pm »

Ricpark and Kim, thank you for the information. Kal, I discovered almond butter quite a while ago and love it. I didn't know about the extra iron. Good info.

Healing for all,
Marilyn

ricpark · « **Reply #101 on:** July 06, 2015, 08:33:39 pm »

I don't know about iron either, was told years ago to limit iron intake, that the virus needs it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716881/

KimInTheForest · « **Reply #102 on:** July 06, 2015, 09:58:09 pm »

re: IRON - It is my understanding that increasing dietary iron while on ribavirin is NOT a good idea. It can put you into an iron overload position in your blood, which then ends up as excess iron in your liver where it will do some damage. The reason is that this is not iron-deficient anemia we have. Increasing iron intake for anemia is only useful if it is iron-deficient anemia, not any other type of anemia.

We actually have a surplus of iron right now in our bodies/blood because we don't have enough red blood cells to lug it around as hemoglobin. Increasing our iron intake through diet or supplements right now just increases our serum iron since it literally has nowhere to go - insufficient red blood cells to convert it to hemoglobin and carry it around for oxygen transport. I have repeatedly read to not take iron supplements during ribavirin treatment for this reason. I suspect dietary iron does not give us as great a quantity of iron as supplements would, so perhaps not as dangerous. But I am not going out of my way to eat high-iron foods right now.

Rich: My cough has subsided substantially, for which I am very glad.

best to all,
kim

KAL · « **Reply #103 on:** July 06, 2015, 10:28:39 pm »

be free was responding to a post i left earlier (#97) regarding iron/ hemoglobin

K

KimInTheForest · « **Reply #104 on:** July 06, 2015, 10:35:21 pm »

Quote from: KAL on July 06, 2015, 10:28:39 pm

be free was responding to a post i left earlier (#97) regarding iron/ hemoglobin

Yes, I know. And as far as I am aware, it is NOT a good idea to try to increase one's iron while on ribavirin, for the reasons I stated. A lot of people make the assumption that because they are anemic they must need more iron. Yet sometimes more iron is damaging. And I believe riba-anemia is one of those situations.

best,
kim

KAL · « **Reply #105 on:** July 06, 2015, 10:54:14 pm »

thanks Kim for the response

, the last thing i want to do here is spread bad information , i need to study more on this subject .

K

KimInTheForest · « **Reply #106 on:** July 07, 2015, 01:14:54 am »

That's just the way I have come to understand it, Kal, from my own reading. (Also HCV doctors and nurses I have spoken to have been pretty clear about not trying to increase one's iron intake while on ribavirin). If you find something different, let us know.

The reason our hemoglobin is low while we are on ribavirin isn't because we lack the building blocks to make hemoglobin, but because we lack the red blood cells to transport the hemoglobin. So the angle I would focus on is what can we do through diet, exercise, massage, epsom salt baths, sauna, etc. to support our red blood cells, protect them from oxidative stress of ribavirin, or give our body the building blocks that help build red blood cells. I think B12 is useful for that. I have been taking a B-complex vitamin that includes B12. But I usually forget to take it daily…

best,
kim

Philadelphia · « **Reply #107 on:** July 07, 2015, 05:34:56 am »

I was told what you were told Kim.

mcphe66 · « **Reply #108 on:** July 07, 2015, 06:32:24 am »

Kal, I am a junk food junkie but will try the rice crackers with almond butter. I am taking Harvoni but no Ribavirin. Can you tell my why your doctor prescribe both? I have been taking the Harvoni for 2 weeks now and will go in for my first blood work tomorrow. So far the side affects are at a minimal. I take it between 5:00 and 6:00 in the evening and sleep well at night. I have high energy from morning until 5:00 or so. I am praying for all of you to have success with the medication. Also, say a prayer for me. God bless

RightHere · « **Reply #109 on:** July 14, 2015, 05:02:14 pm »

Hi all,

Thought I would send out an update. My partner is at 5.5 weeks of 12 weeks of Harvoni +riba (clinical trial for genotype 3). There hasn't been much to report since the week 2 results (undetected) since his side effects have been pretty mild. He's still working away from home on a physically demanding job. However, in the past few days, he's had a difficult time with draining fatigue. We thought it likely that it related to a drop in hemoglobin, but we got his week 4 test results and his hemoglobin and platelets haven't really changed since week 2 results and are still at the low end of normal at 142; he started with a level of about 160.

Mind you these results are a week and a half out of date so it may have changed. I would be curious to know if anyone has experience with sudden fatigue on treatment that cannot be directly attributed to a drop in hemoglobin? Also welcome would be any thoughts or mental techniques on pushing through about another week+ of work with fatigue and related frustrations. He's on a job site, so there's no getting away from it all for now.

I know some folks have the end of treatment within sight which is fantastic. Hope everyone is doing well.

cheers RH

KimInTheForest · « **Reply #110 on:** July 14, 2015, 05:28:38 pm »

Hi RightHere. Thanks for the update. have been wondering how your partner is doing on same trial as I am on.

Re: his sudden fatigue - look at his glucose levels. I found that in the early weeks (between 2 and 5, I think) I was definitely experiencing glucose fluctuations, revealed both by my labs and by what my body was telling me. I would become exhausted to the point of hardly being able to move, and a sudden depression would overcome me (something I never experience). Then I would eat something, and within 5 minutes that would disappear. And there were just various things happening in my body that made me think glucose imbalance, or inadequate insulin or something. labs showed my glucose being above normal for a while, but never below. But I think it was swinging both ways - above and below normal. My labs were always collected in the morning.

Also re: the fatigue - I have not experienced any fatigue from the Harvoni. Iin fact just the opposite - it gives me a big energy boost each day for about 6 hours. (My riba-anemia has cut my stamina. But it doesn't sound like your partner is there yet on the riba effects.) However, I have seen a number of people on these forums who are on Harvoni only, and are experiencing extreme almost debilitating fatigue. So maybe that is a side effect of Harvoni for some people.

Good luck! 5.5 weeks is very close to the halfway point. And things feel a whole lot better and more tolerable after you pass the halfway point.

kim

KAL · « **Reply #111 on:** July 14, 2015, 09:41:48 pm »

hi Kim , i saw your post on the lymph nodes , has it gotten better ? ,,,,,,,
i noticed last nite swollen under my right jaw like yours ,,,reading your post put me at ease , sounds like were all just getting the toxins out,,,, just curious how your doing on that .
i started week 11 yesterday along with Ric , you started today ! yay !

all the best to you and the rest !........K

KimInTheForest · « **Reply #112 on:** July 14, 2015, 11:06:18 pm »

hi kal. yes, my lymph nodes have gone way down - i think as a result of all that lymphatic self-massage i did. but i am still aware of some swelling - especially in neck and under right jaw. i do very much think it is a sign of our bodies (and specifically our lymph nodes) working hard to clear out all the crap. So I view it as a sign of healing. But anything we can do to help our lymphatic system at this time would probably help reduce lymph node swelling. Could be as simple as walking or those rebound trampolines from walmart.

really nice to be looking at my last 13 days! hope everyone else is hanging in.

wellness to all,
kim

KimInTheForest · « **Reply #113 on:** July 14, 2015, 11:13:31 pm »

Here is a link to the best online tutorial I could find for lymphatic self-massage:

http://www.massagetoday.com/mpacms/mt/article.php?id=14639

Very clear photographs, very short simple explanations of what to do for each lymph node.

This is what I followed when I started having serious lymph node swelling 3 weeks ago, and I could tell they just were not able to move all the dead crud out of my body. The following day, my week-long purge of diarrhea and emotional release began. But it was worth it!

kim

KAL · « **Reply #114 on:** July 15, 2015, 12:07:03 am »

great information ! i will start doing this and continue this long term , i had no clue what lymph nodes role is ...........thanks!

KimInTheForest · « **Reply #115 on:** July 15, 2015, 12:17:40 am »

Great, kal. Good luck with it. It is my intention to also add it long-term to my health care routines. But knowing me, I will probably only haul it out when I become aware of a problem. haha! always the way

kim

RightHere · « **Reply #116 on:** July 15, 2015, 06:38:39 pm »

Hey Kim,

Thanks for your message. I also look for your updates; it IS nice to have some company on this clinical trial ride.

We'll definitely look to see how food and glucose levels might impact how he's feeling; I know he did perk up a bit after dinner yesterday.

Halfways sounds pretty good although I have to admit that I find myself looking ahead to that next peak of post-treatment SVR. However his current fatigue reminds us both to tackle first things first.

We'll be celebrating your EOT in no time. Sounds like you're doing really well and I hope it stays that way.

all best,
RH

KimInTheForest · « **Reply #117 on:** July 20, 2015, 09:38:33 pm »

How's everyone doing? I for one am very glad I just have 7 more days left.

Note to self: Riba Rage + Facebook = Bad Combo

haha! (but it wasn't funny at the time)

kim

ricpark · « **Reply #118 on:** July 21, 2015, 05:09:04 am »

Kim
It's 4:00 am and I just took a Harvoni pill, only 5 to go. The light is getting very bright at the end of the tunnel, my wife finished her radiation treatment for cancer last week, feels like the load is easing up on me. Still dealing with cramps in my legs no matter what I do but I'm feeling better over all.
rich

KimInTheForest · « **Reply #119 on:** July 26, 2015, 07:42:27 pm »

You must have taken your last pills today, Rich. I bet that's a nice feeling! And I hope your wife's radiation treatments went well (as well as those things can go) and that they did the trick for her.

I take my last pills tomorrow (Monday). I'lll have my EOT labs drawn on Tuesday, and I'll know the results about a week later. Then comes the long wait for 12 weeks post-tx (although I will also have labs done at 4 weeks post-tx).

I hope everyone else is doing alright. Any news from anyone? Hang in there, all!

kim

Philadelphia · « **Reply #120 on:** July 26, 2015, 08:08:47 pm »

Hard to believe it's the end of this particular journey for you guys, Kim and Ric! I'm still slogging away. 6 weeks left. It's not hard, it just "is".

ricpark · « **Reply #121 on:** July 26, 2015, 10:13:31 pm »

Kim I was waiting till morning to congratulate you, but you beat me to it. Yes last Harvoni this morning and Ribavirin this evening, it felt great getting thru it. Tomorrow I have a double header, labs for my liver doctor and ct scan for my cancer doctor (you know you can get liver cancer or Lymphoma cancer from Hep C, that why we all must beat this dragon).
Julie is done with her radiation it went OK, no chemo, doc wanted Tamoxifen to lessen the chance of recurrence. But with her Frontotemporal Dementia and bad side effects from any drug that messes with hormones we are going to skip it. I want the time she has left to be the best I can make it.

Hang in there Philadelphia and every one else.

I will post my 12 wk labs and then my 12 wk post labs.
Rich

KimInTheForest · « **Reply #122 on:** July 27, 2015, 12:47:29 am »

Quote from: Philadelphia on July 26, 2015, 08:08:47 pm

Hard to believe it's the end of this particular journey for you guys, Kim and Ric! I'm still slogging away. 6 weeks left. It's not hard, it just "is".

I know, I can hardly believe it myself. I made an 84-day wall chart (personal calendar thing) at start of treatment and have been drawing a big red X through each day as I went along. It really helped me visualize my journey and see my progress as the thing became more and more filled with red Xs.

Hang in there, Philadelphia. I think you're doing great! And I so admire the TV interview you gave and the courage that took to out yourself to your community and beyond.

best,
kim

ricpark · « **Reply #123 on:** July 27, 2015, 02:54:26 pm »

Just had my EOT labs, Will not get results till 8/26 when I see Doc.

KAL · « **Reply #124 on:** July 27, 2015, 04:07:44 pm »

CONGRAT'S RIC ! on completing the journey , ...downing those last riba's must have been a bitter sweet experience , ....all the best to you going forward , my thoughts and prayer's to you and your wife.

CONGRAT'S KIM ! i know in a couple hours you'll poping the last of those nasty but life saving riba's ,.....i bet your in a good mood !

you guys keep us posted going forward on how you feel and clearing the riba out of the system .

PHILADELPHIA , hang in there with 6 weeks to , sounds like your doing well , i still have 4 to go , .........we'll make it !!!!!!!

K

ricpark · « **Reply #125 on:** July 27, 2015, 04:36:07 pm »

Thanks Kal, very tired today can't keep my eyes open, It might be due to not much sleep last night (went to a picnic yesterday very hot and humid sweated a lot tried to keep up with water intake) either way bad leg and foot cramps. If I take a nap I'll be up all night. Other than that no systems of withdrawal from Harvoni + Ribavirin.
Rich

RightHere · « **Reply #126 on:** July 29, 2015, 08:15:49 am »

Happy Belated EOT to Rich and Kim! It's great to see you guys move through to that next train.

Kim, love the image of your wall calendar.When you take a thing on, you really take it on. I must applaud!

Rich, I hope those leg cramps ease up. I'm trying to remember, have you tried taking magnesium for that? I hope the best for you and your wife.

My guy is just about to finish week 8 of 12 on harvoni+riba and is flying home from one coast to another after more than 3 months away. Philadelphia's comment about a slog that just "is" is about right for him as well. He's tired, real tired, not surprisingly, but getting through. Now that his job has done, he's started to have some trouble sleeping in the past few days. Ah, change.

Best to all,
RH

KimInTheForest · « **Reply #127 on:** July 29, 2015, 11:25:07 am »

Thanks Kal & RightHere. I am feeling noticeably better, stronger, and more "like myself" post-tx, even though it is just my 2nd day post-tx. So for me, the burden of the ribavirin seems to be lifting pretty quickly.

Good luck on rest of your treatment, Kal. And good luck to your partner, RightHere.

kim

KimInTheForest · « **Reply #128 on:** July 29, 2015, 06:56:21 pm »

Quote from: RightHere on July 29, 2015, 08:15:49 am

Kim, love the image of your wall calendar.When you take a thing on, you really take it on. I must applaud!

I am quintessential Virgo - master (or mistress) of wall charts, filing cabinet organization, efficiency diagrams, labeling, alphabetizing… I know - sounds boring to others. But Virgos cannot help themselves. haha!

kim

ricpark · « **Reply #129 on:** July 30, 2015, 11:48:59 am »

Good news don't have to wait till 8/26/15 for 12 wk results, searched patient portal found lab results (Doctor wanted to be the one to tell me of the results, could not wait, will have to fake not knowing)

From records for 7/27/15 12 wk labs

HCV RNA Hepatitis C Pcr Quant
   HCV PCR QT LIN   Not Detected IU/mL (Better)   Range: Not Detected

   HCV PCR QT LOG   Not Detected LOG (Better)   Range: Not Detected

   Alanine Aminotransferase   25 IU/L (Better)   Range: 13-69

   Aspartate Aminotransferase   29 IU/L (Better)   Range: 15-46

still anemic
Red Blood Cell Count   3.22 MIL/uL (Below low threshold)   Range: 4.31-5.84
   Hemoglobin   11.2 g/dL (Below low threshold)   Range: 13.0-17.0

   Hematocrit   35 % (Below low threshold)   Range: 40-50

   Mean Corpuscular Volume   107 fL (Above high threshold)   Range: 80-99

   Mean Corpuscular Hgb   35 pg (Above high threshold)   Range: 27-34

   Mean Corpuscular Hgb Conc   33 % (Better)   Range: 32-36

   Red Cell Distribution Width   15.4 % (Above high threshold) Range: 9.0-14.5

   Platelet Count   395 TH/uL (Better)   Range: 140-400

   Mean Platelet Volume   9.9 fL (Better)   Range: 9.4-12.3

KimInTheForest · « **Reply #130 on:** July 30, 2015, 12:47:30 pm »

FANTASTIC NEWS RICH!!

kim

ricpark · « **Reply #131 on:** July 30, 2015, 06:51:22 pm »

http://www.healio.com/hepatology/cirrhosis-liver-failure/news/online/%7B242c60a7-02b1-4e29-a952-2ac8797760dc%7D/debilitating-muscle-cramps-common-among-patients-with-cirrhosis

Bad cramps the last 3 night again (no sleep), wondering if my cirrhosis is worse then f3. During the 6 months of chemo therapy the immune system is suppressed, my VL doubled (7.9 to 17.5 mil). Thinking of starting a new thread in "living with Hep c" for what has helped anyone else.

Kin post your results when you get them.

rich

sickpuppy · « **Reply #132 on:** July 31, 2015, 03:54:35 pm »

Quote from: ricpark on July 30, 2015, 06:51:22 pm

http://www.healio.com/hepatology/cirrhosis-liver-failure/news/online/%7B242c60a7-02b1-4e29-a952-2ac8797760dc%7D/debilitating-muscle-cramps-common-among-patients-with-cirrhosis

Bad cramps the last 3 night again (no sleep), wondering if my cirrhosis is worse then f3. During the 6 months of chemo therapy the immune system is suppressed, my VL doubled (7.9 to 17.5 mil). Thinking of starting a new thread in "living with Hep c" for what has helped anyone else.

Kin post your results when you get them.

rich

rich, you're not worse than F3. Trust me, I'm F4 (mildy decompensated) and have had cramps at F2, not F4. Seriously, that's the way it goes. Cramps actually go away the worse you get. Your right side gets.... stiff, feel bloated, and just... numb.

Also, with regards to your chemotherapy, it might actually have helped you with your HCV too. Here's the thing:

I've went from 0 to decompensated in a span of... maybe a few years, if even that. I was basically discovered at age 11 or 12 when I started to bleed out. The cramps were at age 9, infection was probably at age 6 when I distinctly remember picking up a syringe from the pavement which I found while playing outside, and sticking myself with it on purpose. I was a kid. I had no idea what I was doing, but I wanted to see how sharp the needle was. It was sharp enough, and what I thought it was a one second sting turned out to be... years and years of pain.

In any case, where am I going with this?

I have this theory, that the higher your VL, the less is your liver under assault. Why? Because you get cirrhosis, mainly, because of your immune system. You see, it cannot destroy the virus directly, so it destroys the hepatic cells which are compromised. In time, this progresses to scarring due to so many dead cells, and cirrhosis.

I'm testament to this. I've always had a strong (and I do mean strong) immune system, so my VL was always quite low, for years, under 100,000. However, my liver went from healthy to devastated in a very short time.

So, think about this way: if it wasn't for the chemo and immune suppression, you would probably actually, really be F4 by now, or worse.

But it's just a theory.

dragonslayer · « **Reply #133 on:** July 31, 2015, 04:07:17 pm »

Pup,

>> You see, it cannot destroy the virus directly, so it destroys the hepatic cells which are compromised. In time, this progresses to scarring due to so many dead cells, and cirrhosis.<<

Where can we read that the immune system destroys liver cells instead of virions directly? Or is this the 'theory' part?

KimInTheForest · « **Reply #134 on:** July 31, 2015, 04:20:47 pm »

An excellent 2-minute video of a Saskatoon Hepatitis C nurse explaining the real way that the body's immune system responds to the hepatitis C virus to cause liver scarring and the problems arising from that is here, embedded in this newspaper story. I found this video explanation very helpful for my own understanding:

http://www.thestarphoenix.com/health/Warning+baby+boomers+tested/11247147/story.html

As far as i know, there is no evidence of the immune system destroying liver cells (although the replicating virus itself certainly does that in order to spread the virus further). So I think that is perhaps inaccurate conjecture on your part, sickpuppy. But happy to be proved wrong if you can offer a link to a paper saying otherwise.

best,
kim

sickpuppy · « **Reply #135 on:** July 31, 2015, 04:46:55 pm »

Quote from: dragonslayer on July 31, 2015, 04:07:17 pm

Pup,

>> You see, it cannot destroy the virus directly, so it destroys the hepatic cells which are compromised. In time, this progresses to scarring due to so many dead cells, and cirrhosis.<<

Where can we read that the immune system destroys liver cells instead of virions directly? Or is this the 'theory' part?

It's not as much as the immune system destroying the cells, but more of a "normal cell behaviour".

That's how a cell behaves when compromised by any virus. You can find loads of documentaries and articles on the subject. The general way it goes is: Virus tricks the cell and gets inside > The motor proteins drag the virus towards the cell nucleus > Once close to the nucleus, it releases the RNA and gets absorbed in the nucleus > The nucleus is compromised and starts copying the virus RNA, instead of our own RNA > The cell is overwhelmed and does not stop producing these new RNA copies until it is absolutely packed.

In the same time, in another part of the cell, the virus "coating" is being mass-produced and injected with the previously produced virus RNA in the nucelus.

Once the cell is full and ready to go, its membrane is devoured and releases thousands of new virus copies in and around the other cells, and the process repeats itself. In time, this leads to cirrhosis.

Here's a study: http://www.ncbi.nlm.nih.gov/pubmed/22430873 (read first sentence of the abstract)
Here's a short animation specific to HCV: https://www.youtube.com/watch?v=mQ9Tb_ifCGo (you can see how the virus is carried to the nucleus by the motor proteins I mentioned at 1:33, but watch all of it).

And here's a study to answer your direct question: http://www.ncbi.nlm.nih.gov/pubmed/17199558

"HCV (hepatitis C virus) has a high propensity to persist and to cause chronic hepatitis C, eventually leading to cirrhosis. Since HCV itself is not cytopathic, liver damage in chronic hepatitis C is commonly attributed to immune-mediated mechanisms."

KimInTheForest · « **Reply #136 on:** July 31, 2015, 04:54:46 pm »

We are all in agreement then, sickpuppy, since you now agree that your original assertion that the immune system destroys liver cells was not correct. That is all we were responding to - that particular faulty assertion. We know how viruses replicate in cells.

best,
kim

sickpuppy · « **Reply #137 on:** July 31, 2015, 04:57:27 pm »

Quote from: KimInTheForest on July 31, 2015, 04:54:46 pm

We are all in agreement then, sickpuppy, since you now agree that your original assertion that the immune system destroys liver cells was not correct. That is all we were responding to - that particular faulty assertion. We know how viruses replicate in cells.

best,
kim

Yes Kim, that's what I knew too but on further examination (based on the studies I posted) it would seem that would not be enough to cause cirrhosis, at least not in a lifetime - the real culprit seems to be the immune-mediated response (look at the last study, it's particularly interesting).

That's basically how I formed my theory about a weaker (but not completely compromised) immune system slows cirrhosis progression. I'm sure it's not that simple, and not actually correct, otherwise we would all be on immune-suppressants

KimInTheForest · « **Reply #138 on:** August 05, 2015, 06:28:29 pm »

Got the results of my EOT labs today:

Virus undetected (and has been since Week 4)
ALT 12
AST 30

Hemoglobin 99 (normal=115-158 g/L)
Red Blood Cells 3.1 (normal=3.9-5.5 TI/L)

Everything else within normal ranges. I'll spare you the full 30 pages of my lab results. The above is what I am tracking the most closely.

So I am still feeling the effects of the ribavirin-induced anemia, with my Hgb and RBCs being below normal.

I still get winded easily and do not have the great mental clarity and energy that I had during my early weeks of treatment when the virus had been eradicated but the anemia had not yet kicked in. Still, those early weeks of treatment gave me a glimpse of the life I can look forward to once my body rebounds from the hemolytic anemia.

I'll be tested again at 4 weeks EOT, and again at 12 weeks, then 24 weeks, and finally at 1 year.

How is everyone else here doing? Any news? Lab results? Feeling better? Worse?

Good luck to all,
kim

KAL · « **Reply #139 on:** August 05, 2015, 07:57:20 pm »

Kim , happy to hear "still undetected" ! ....all other #'s good too !........the hgb & rbc's should work their way back to normal , , are these new #'s (hgb/rbc) an improvement from your last test ?

i've noticed a little loss in clarity and stamina the last couple weeks , im at 13 1/2 weeks with 2 1/2 to go..........all in all , feeling great !....much better than before treatment ,, all the side effects from cirrhosis are gone !

speaking of cirrhosis and,or, fibrosis , portal hypertension , insulin resistance and all the damage from hep c to the liver , i have found some good articles/ study's on fibrosis resolution and even cirrhosis resolution post svr ......also , i have found lot's of post's from other site's from svr patients who have reported almost complete fibrosis resolution and even cirrhosis resolution 6 month's to a year after svr .
have you or anyone else read or posted anything on this ? if so , iv'e missed it.....i don't see much talk on this subject around here , im surprised , it's like the pot of gold at the end of the rainbow.

K

ricpark · « **Reply #140 on:** August 05, 2015, 08:05:41 pm »

Congrats Kim, I knew you would be undetected and on your blood work. I'm still anemic on last test (don't test again till 12 wks post) 10 days ago. Hope your energy levels increase.
Best
rich

KimInTheForest · « **Reply #141 on:** August 05, 2015, 08:28:21 pm »

Thanks Kal & Rich.

Kal, my hemoglobin and red blood cells at EOT (Week 12) are about the same as they were at Week 8. So I guess we have to see how quickly those levels recover now that I have stopped taking ribavirin. I know Lynn K on these forums said her Hgb was back to normal (or back in normal range) in just 10 days. I would love to be so lucky. But for others it has taken a month or even longer. Still - it's a minor and temporary price to pay for getting CURED for the rest of my life.

Yes, I too have read quite a bit about the complete resolution of fibrosis (F1-F3) that is possible post-cure. Did not know it could occur as quickly as 6 months. But that is great to hear. And I had also read that even cirrhosis can reduce/improve/reverse to some degree once virus is gone. It isn't just that new healthy liver tissue is growing, but that the connective tissue that creates fibrosis (a scar tissue) actually starts to unravel and disintegrate once virus is eliminated.

I have seen a small amount of posting about this on these forums but not a lot considering how significant that piece of information is for all of us. We really can have a fresh start and may end up with healthier livers than most non-HepC people around us, because we have gotten in the habit of eating right to protect our liver.

kim

KimInTheForest · « **Reply #142 on:** August 13, 2015, 02:16:47 am »

How are my post-treatment pals on this thread doing? I am now 16 days post-treatment and am not gaining ground as quickly as I had hoped. Although I appear to be virus-free so far, so that is the important thing! Some minor sides that arose during treatment have worsened since ending treatment.

My low hemoglobin from 12 weeks of ribavirin is part of the issue. But my hgb is improving daily, while my health in some ways is worsening post-tx. I am sure it will sort itself out in time. But I had assumed that each day post-tx would be better than the last, as our bodies clear the drugs and regain their new healthier virus-free balance. Not so for me right now.

The following issues, which developed as drug side effects during treatment and were just minor annoyances during treatment, have now started to increase post-treatment: insomnia, oral lichen planus (including mouth sores), muscle cramps in calves and feet, persistent dry cough and breathing difficulties - asthmatic almost, yet I have never had asthma or allergies.

These are all carryovers from treatment. I think there is nothing to do but be patient and let my body restore its natural balance, or find a new balance. Not complaining, since this is a small price to pay for being FREE (in all likelihood) of Hep C after 45 years! But also not the steady upward ascent I had expected post-tx. How are the rest of you post-tx?

kim

ricpark · « **Reply #143 on:** August 13, 2015, 04:40:12 am »

Kim, yes insomnia on and off (3:30 am writing this), lower leg cramps and some breathing and coughing. The cramps bother me the most.

http://hepatitiscnewdrugs.blogspot.com/2013/11/articles-in-press-muscle-cramps-in.html

Interesting article, I have just started to try Taurine and Branched-chain amino acids (listed as no side affects). Printed the article and will talk to Doctor when I see him on the 26 of this month.
Best
rich

KimInTheForest · « **Reply #144 on:** August 13, 2015, 04:44:48 am »

Thanks for that link, Rich. That sounds interesting, Taurine and branch-chain amino acids. Be curious to know what your doctor says.

kim

KAL · « **Reply #145 on:** August 13, 2015, 05:23:37 pm »

hi Kim and Rich , sounds like clearing out the powerful med's take's awhile , maybe part is due to the body hard at work "resetting" it self back to normal range..............you've got all my wishing/hoping/ praying things get better soon .
......Rich , my thought's to your wife too .

i've got a little over a week to go of the 16 , im feeling a little bit saturated with the riba. but hanging in pretty well. .....this past week iv'e been getting these crazy riba attitudes , when someone crosses me wrong , within an instant im in full attack mode like a pit bull , then i settle down and laugh like i just won a nascar race ,,,,,strange,,,,, i think i better lock myself in the house for the next week lol !

good luck to all ! let the healing continue !..............K

KimInTheForest · « **Reply #146 on:** August 13, 2015, 06:04:33 pm »

Thanks Kal! I hear ya on the attack-mode stuff. Same happening here. Probably lost or alienated some friends in recent weeks. I deactivated my facebook account a month ago because I was just going berserk.

Also wanted to say that a while back you mentioned ceiling fan in bedroom as possible cause of cough. I didn't pay too much attention at the time, but I now think that is a factor. Had my worst coughing spree of all time yesterday (about 2 hours of coughing) after sleeping (or rather lying awake in bed all night) with my window fan going to cool the room down. I notice on other HepC forums, people are saying humidifiers in the bedroom really help them with the riba cough thing.

Great that you are so close to the end, Kal! Good luck to all of us.

kim

KimInTheForest · « **Reply #147 on:** August 14, 2015, 01:29:47 pm »

For anyone interested in the reason for the riba-cough, ribavirin temporarily "enhances cough reflex sensitivity", according to this 2010 study on INF/Riba treatment (but it is the riba that is responsible for the cough, so it will affect us as well):

http://www.ncbi.nlm.nih.gov/pubmed/21545621

Cough resolves within 2-6 weeks after completion of therapy.

Also, I took a Benadryl last night (25mg) and got a proper night's sleep for practically first time since EOT 18 days ago. It also suppressed my cough, which I had read that it might do. But it did take me 2-3 hours to fall asleep even though I was dead tired when I hit the sack around 9 pm. Also, my nasal passages got completely blocked for a few hours after the Benadryl. (It felt like what happened was my immune system rebelled against the antihistamine with a needless production of histamine, swelling the tissue in my nasal passages.) But I fell asleep around midnight and slept quite well all through the night. Don't feel groggy this morning.

kim

KimInTheForest · « **Reply #148 on:** August 14, 2015, 04:38:27 pm »

My theory about the post-tx problems that some of us experience - problems greater than what we experienced during tx - is that some of those post-tx problems are a result of a temporarily overactive immune system producing various temporary autoimmune issues.

-Oral lichen planus is an autoimmune thing, and it got worse for me post-tx (although it's better today).
-Rheumatoid arthritis, which many people are experiencing post-tx but often not during or prior to tx, is autoimmune thing. (No RA for me, thank goodness, but there are threads on these forums devoted to the problem of post-tx RA.)
-Asthmatic shortness of breath when there is no allergen present and patient has no history of asthma or allergies suggests overactive immune system, when viewed as part of the larger pattern.

Makes sense when I think about it. For 45 years my immune system has had a full-time job chasing the Hep C virus. Overnight it's unemployed. All dressed up with nowhere to go. Where's it gonna turn? Nothing else left to attack and defend against except the patient's own tissue post-tx. I think it just takes a little time for the immune system to settle down and locate its new balance (its new thermostat setting, one might say) now that less is required of it. Also, I expect I will improve considerably once my hemoglobin and red blood cells are back in normal range.

So far, today has been a better day for me.

kim

ricpark · « **Reply #149 on:** August 15, 2015, 10:43:06 am »

20 days post treatment

slight asthmatic feeling in chest and coughing when stopping Riba, but now almost gone.

main problem "CRAMPS", day 5 in my experiment, 5 nights in a row very little (morning when waking up) or NONE.
Mag-Tab SR 12 hr release magnesium 1 tablet morning and night
Taurine 500mg morning and night total 1000mg (bottle says on empty stomach with water)
Supplement Facts

Serving Size 1 Veggie Capsule
   Amount Per Serving
AjiPure® PharmaceuticalGrade Taurine    500 mg

Branched-chain amino acids 3 caps at dinner (dose is 3 before meal)
Supplement Facts

Serving Size 3 Veggie Capsules

Servings Per Container 30
   Amount Per Serving
Vitamin B-6 USP(as pyridoxine HCl)    7.5 mg
AjiPure® Pharmaceutical GradeL-Leucine    1,026 mg
AjiPure® Pharmaceutical GradeL-Isoleucine    513 mg
AjiPure® Pharmaceutical GradeL-Valine    513 mg

Study recommended
http://hepatitiscnewdrugs.blogspot.com/2013/11/articles-in-press-muscle-cramps-in.html
Taurine 3g (I'm taking 1G)
Branched-chain amino acids 4g 3 times daily ( I'm taking alot less)

Hoping with the latest studies showing a regression in fibrosis and cirrhosis over years when SVR12 is reached the cramps will go away.
http://www.annalsofhepatology.com/revista/numeros/2014/HP144-03-Long%20%28changes%29%20%28F_060614V%29_PROTEGIDO.pdf

KimInTheForest · « **Reply #150 on:** August 15, 2015, 12:07:15 pm »

Thanks for the update, Rich. Gives me hope to hear that your cough and asthmatic breathing are almost gone. And thanks for the details on your experiment to deal with muscle cramps. Great that is working too.

kim

maneman · « **Reply #151 on:** August 17, 2015, 06:41:54 am »

Hello Everyone,

I have been avidly reading this particular thread with great interest and the reason why is that I have just started my 12 week course of Harvoni + Ribavirin.

Allow me to introduce myself - I am in England and have HCV type 1a, F4 cirrhosis early compensated, fibroscan mean 24, ultrasound shows no real nasties but obviously liver is not good. The usual blood elevations but I don't have all the the latest figures to hand. Never been treated prior to now though have alleviated problems in the past with sylimarin and dandelion root, cannot recommend highly enough. Stopped taking them now due to lack of interaction data on doctors advice.

Fortunately I am one of the early NHS approved patients as we generally have no health insurance here. Been waiting for over a year to avoid the dreaded interferon regimen.

Well it's day 4 for me Harvoni at 8am then 200mg Ribavirin and 400mg at 9pm with blood tests every week. They are looking to increasing my Ribavirin depending on blood results.
So far so good, definitely feel as though something is happening, quite a strange feeling really not unpleasant at all. More energy for sure and my sore red palmed, hard cracked skin hands that tended to itching at times and tingling are improving quickly.
Currently I am still working full-time and my doctor has approved this as there is no reason at this stage that I should not do so.
I was concerned at being prescribed Ribavirin because of the adverse effects, however, there is evidence to show that with cirrhosis it could aid and help in a permanent cure. I did post a thread initially questioning this and many thanks to sickpuppy for his help and input.

So I feel fortunate to be on treatment at last, optimistic in view of others results and hopeful for those who are still waiting to be treated. I know that at my hospital they are only starting 2-3 new patients per week and they told me that I am the second patient they have started since the green light for patients that are not suffering decompensated cirrhosis as only those were being treated and then after failing with Interferon.

If you wish I will continue to post my progress through this journey in my life and share with you all my experiences. As one contributor said gnatcatcher I think, we are all beta testers to borrow a phrase from the IT world, for this wonderful new Harvoni and the DAA treatments that have become available to help us fight the dreaded HCV.

Good luck to all of you and congratulations to those who have been successful in achieving freedom from HCV.

KimInTheForest · « **Reply #152 on:** August 17, 2015, 01:11:36 pm »

Hi Maneman! Congrats on starting the harvoni journey, and welcome to the forums and to this thread!

By all means continue to post your progress here.

I too found treatment quite easy for the most part. (last 3 weeks of treatment were really wearing me down with riba anemia and emotional moods.) But big downturn occurred for me immediately post-tx. I got much worse. But I think that is finally lifting today. I am now 3 weeks post-treatment.

I too felt big increase in energy beginning in the first week of treatment. The new DAAs work very quickly so I think that is our new virus-free bodies we are experiencing when we feel that energy increase. Then the riba-anemia slowly takes that away in latter half of treatment - at least it did for me. But I was on 1,000 mg/day (weighing 120 lbs). So quite a bit more riba in my case. I have heard that 600 mg/day is not enough to induce anemia. But cirrhosis may change that equation - I don't know.

Good luck, and keep us posted!

kim

RightHere · « **Reply #153 on:** August 17, 2015, 08:36:03 pm »

Hello all,

Ric, I'm glad you have found something to try for the leg cramps. Kim, thanks for the post about facebook; it helps remind me to be patient during this chemically induced ride. Interesting thoughts about taxed immune systems post-tx.

A report from mid-week 11 of 12 of Harvoni+riba for my partner (GT3 clinical trial). Its been relatively smooth going until about week 10 when sleep issues seemed to take a big hold. Deep sleep seems elusive and he keeps finding himself wide awake very early in the morning. We're going to look into something to help him sleep this week.

And hello to emotional fluctuations - not sure if we call it sleep deprivation or riba-rage, but its real and exhausting too. He says that its one thing to try and be rational, but he's not sure what is rational. Needless to say, entry into a new chaotic, crazy-on-its-own-merits job at the same is proving challenging. Where's the riba-vacation?

Since we are all looking at the impact of riba on hemoglobin, I thought I would mention that his seems to be holding steady. It dropped from a baseline of 163 to 142 by week 2, but has remained just about 140 for both week 4 and week 8 tests. So at least numerically he seems to be steering clear of anemia.

Looking forward to the end of the beast.

Best to all,
RH

KimInTheForest · « **Reply #154 on:** August 18, 2015, 01:28:41 am »

Thanks for the update on your partner, RH. I was wondering how he was doing. Great that his hgb has remained so high.

Good luck with the final week and a half, and of course with the results beyond!

kim

maneman · « **Reply #155 on:** August 21, 2015, 08:18:41 am »

Thanks Kim for your kind post.

Well it's now day 8 and first blood test has been done (waiting for results).

I do feel better for sure and Harvoni it feels like its doing something as I have more energy, liver feels uncomfortable (a good sign I think as something is happening) and head is clearer.
The second dosing of Ribavirin in the evening is double the amount of the morning dose and I've increasingly noticed difficulty in going to sleep plus increase in random itching all over but this itching is not the same as the HCV itching, when you scratch it escalates the severity of the itching in that same area. The Ribavirin induced itching is more like normal itching, scratch and it goes but this doesn't stop an itch elsewhere.
Hence, I'm a little wary of the dosage of Ribavirin being increased and at this stage I'm unsure as to any other side effects associated with treatment or specifically Ribavirin.
To cope with the sleeping issue, I have started taking the evening dose much earlier around 6-7pm.

I had a difficult very stressful event earlier this week caused by a family member that I found more difficult to cope with and became very upset. The person concerned should have known better but I'm worried that this may or could affect my treatment and chances of success because I know stress is very bad for illness and especially liver problems.

Anyhow I plough on regardless in the hope for a successful overall outcome as I enter into week 2 of my treatment. Work has not been a problem so far in relation to this treatment that is good news as I feel more than able to perform my tasks with no issues. One still needs to earn to pay the bills.

Hope others are well and wishing all of you success.

KimInTheForest · « **Reply #156 on:** September 01, 2015, 12:24:09 pm »

YAY! My labs just came back and I am still UNDETECTED 4 weeks post-treatment!

I had been worried because I developed a mystery malaise shortly after finishing treatment. It had me in bed with fever and fatigue for at least 2 weeks, and I have been weak and pretty much dysfunctional the rest of the time. (Had no such problems during treatment.) But at least it is not Hep C. That’s the important thing!

The other good news is that, whatever my mystery malaise was, it is finally lifting and is substantially gone now. I have an appointment with my GP today, but there is not much for her to do or check at this point. I am 5 weeks post-tx as of today.

I think my main problem was that I got very depleted during treatment. I did not have much problem with side effects in terms of any physical discomfort – no headaches, no nausea, no aches or pains. And I was going around leading my normal life while on treatment. But I could hardly eat, I lost 10 pounds, I never once got a proper night’s sleep, and my hemoglobin was below 100 g/L from Week 4 until very recently. Last week it crawled back up to 104, but that is still below normal.

In retrospect, I would urge anyone else having severe problems eating while on treatment to go out and find a high quality protein shake, or try medical marijuana for appetite recovery, or anything else that works to get some nutrients in you.

So glad to still be on the road to being cured! Keep the faith, everyone. You can do it!

kim

RightHere · « **Reply #157 on:** September 01, 2015, 08:08:00 pm »

Yay Kim! - I've been looking for this fantastic news! So glad to see it. Good to know you have that very lovely bit of hope and reassurance in place now. I'm also glad to hear that you are feeling better from some of the post treatment symptoms.

My guy has finished treatment (Harvoni +riba, 12 wks for gt3 clinical trial) FYI for others, we found that sleep meds did help in the last couple weeks of treatment; it seems like at least some upheaval was due to sleep deprivation. I think there was more sleep disruption than he was even aware of and it was taking quite a toll. Plus his hemoglobin at EOT had dropped to a low level (130) if not anemic.

Now 4 days post-EOT and he's feeling pretty crappy in a way that is new in the last couple of days - very weak and nauseated. No way to tell what's going on of course but there does seem to be a bit of a theme with post-tx blech. So we'll just keep rolling on.

Hope all are doing well and taking good care.
RH

KimInTheForest · « **Reply #158 on:** September 01, 2015, 08:41:05 pm »

Glad to hear your partner is done with treatment, RH. But yes, it is a let-down when you end up feeling worse post-tx than during treatment. I was not prepared for that psychologically. I didn't have hemoglobin as high as 130 even when I started. haha! It fell to about 95 and was in that zone pretty constantly for last 3 weeks.

I would have probably benefitted from sleep meds. I am just so freakishly anti-pill that I couldn't bring myself to ask.

I hope your partner starts to improve soon, RH. And I hope he doesn't fall into a mysterious illness pit like I did for 4 weeks (although that is virtually gone now). It's tough, but we all have to stay focused on what this is really all about - getting rid of Hep C.

Rich, have you received results from your 4-week post-tx labs yet? Or did you get labs done at that time?

best to all on this journey,

kim

slats1056 · « **Reply #159 on:** September 01, 2015, 11:47:15 pm »

KiminTheClear is more like it!!! You go girl. Happy , Happy , Happy for You !!!!

KimInTheForest · « **Reply #160 on:** September 02, 2015, 12:34:52 am »

Thanks Tommy!

kim

maneman · « **Reply #161 on:** September 04, 2015, 07:39:14 am »

Hello again,

Haven't posted recently as nothing to add really but now things are different.

Just completed week 3 and side-effects not really an issue as far as I can ascertain, itching has virtually stopped completely despite taking 1000mg Ribavirin a day now and just feeling so much better. Energy levels are best they've been in years, thinking more clearly, skin is better, urine is more normal in colour now, any grazes or cuts to skin heal much quicker and my libido has improved significantly.
The best comes last as my viral load at start was 3,279,765 now from week 2 results it's down to 33!! Amazing!! I'm so pleased and so are the medics at the hospital. They are very pleased with my progress to date and are very optimistic for my future.
So far treatment hasn't affected my working life and I am more than encouraged to complete the course of treatment (not that I wouldn't). Now hoping things continue to progress favourably to the ultimate outcome that we all desire - freedom from the virus and a return to a more normal disease free life with every possibility of my liver improving and reversing some or much of the damage it's suffered.

Here's wishing you all the very best on your respective journey's in defeating HCV.

Maneman

KimInTheForest · « **Reply #162 on:** September 04, 2015, 12:47:45 pm »

Great news, Maneman! It's phenomenal to see those numbers drop so quickly. Harvoni really doesn't waste any time routing the virus.

best,
kim

KimInTheForest · « **Reply #163 on:** September 04, 2015, 04:25:50 pm »

Quote from: KAL on August 13, 2015, 05:23:37 pm

i've got a little over a week to go of the 16 , im feeling a little bit saturated with the riba. but hanging in pretty well. .....this past week iv'e been getting these crazy riba attitudes , when someone crosses me wrong , within an instant im in full attack mode like a pit bull , then i settle down and laugh like i just won a nascar race ,,,,,strange,,,,, i think i better lock myself in the house for the next week lol !

Hi Kal. How are you doing post-treatment? I think you finished 10 days ago? Did you have much problem with anemia during treatment? I did, and it looks like I will need B12 and iron supplements and/or shots to get my hemoglobin and RBCs back into the normal range, judging by my blood tests that showed me to be low in both B12 and iron. At least I am finally feeling better. All problems and post-tx issues gone now except for low energy from low hemoglobin.

Good luck to you and to everyone else on this journey.

kim

RightHere · « **Reply #164 on:** September 10, 2015, 11:09:38 pm »

Hi all,

Thought it right to post positive developments so folks get a balanced view. My partner is now just about 2 weeks post treatment (Harvoni +riba, 12 wks for gt3 clinical trial). I had posted that he didn't feel well shortly after the end of treatment; the sudden blech included nausea, some vertigo and bed spins, feeling drained and generally not well and quite sleep deprived. The folks at the clinical trial treatment centre said that they considered these symptoms to be the result of withdrawal which was a helpful way to think about it or at least better than worrying about some kind of damage. In any case, at two weeks post EOT he is noticeably improved from that sudden dip. Nausea and dizziness is gone and while sleep isn't perfect, it's better. So hoping for even better days ahead.

cheers,
RH

KimInTheForest · « **Reply #165 on:** September 10, 2015, 11:14:56 pm »

That's great to hear, RH! It gives me hope. I had a similar post-tx "dip" in health but more prolonged. And although I had finally climbed out of it last week, I seem to be back in it this week. Maybe from B12 injection, which sent me to bed immediately. Or maybe a recurrence of the mystery infection/fever/malaise that left me bedridden for 2-3 weeks last month when I came off tx.

Very interesting that his treatment team describes it as "withdrawal". I had wondered something similar. These are powerful drugs, and they are affecting our bodies in more ways than just the one we are so focused on - the elimination of HCV.

I hope he keeps on improving!

kim

KimInTheForest · « **Reply #166 on:** September 24, 2015, 09:34:02 pm »

How are all my treatment buddies on this thread doing? Rich, Kal, Right Here, Maneman… ?

I had difficulties post-treatment but seem to now be pulling out of it. No longer sick, feverish and bedridden as I was for first 6 weeks(!!) post-tx. But still pretty low energy. Will find out my latest hemoglobin, RBCs and iron levels next week. Turned out I was low in iron, B12 and Vit D, so am now taking daily oral supplements for all 3, plus B-complex and C for good measure.

best to all of you!
kim

spirit · « **Reply #167 on:** October 06, 2015, 04:39:55 pm »

First Post, Thank you all for being such a Gift I really felt alone out there. I am 70 yrs old. have has hep C 45 years and until a call from VA Infect-us deases Dr saying I needed Treatment the hep C was last thing on my mind.

I am being treated by the VA Today end of first Two weeks Harvoni and Riba 1200 mgs.

I gave blood yesterday and will see my Dr tomorrow . first visit after Tx started. I haver very little info as of yet. No Numbers little info, except the dr saying my Ultra sound was Normal but my Blood work showed Advanced liver Disease . The reason for the added Ribavirin.

Hopefully I will have the needed Info to be able to Post as you all do, with the Needed info. Until then Thank you all, for sharing your TX Good and not so Good info. Been a Great Help
I will post when I have the needed Numbers so I can Share my TX also.

KimInTheForest · « **Reply #168 on:** October 06, 2015, 07:04:31 pm »

Quote from: spirit on October 06, 2015, 04:39:55 pm

First Post, Thank you all for being such a Gift I really felt alone out there. I am 70 yrs old. have has hep C 45 years and until a call from VA Infect-us deases Dr saying I needed Treatment the hep C was last thing on my mind.

I am being treated by the VA Today end of first Two weeks Harvoni and Riba 1200 mgs.

I gave blood yesterday and will see my Dr tomorrow . first visit after Tx started. I haver very little info as of yet. No Numbers little info, except the dr saying my Ultra sound was Normal but my Blood work showed Advanced liver Disease . The reason for the added Ribavirin.

Hopefully I will have the needed Info to be able to Post as you all do, with the Needed info. Until then Thank you all, for sharing your TX Good and not so Good info. Been a Great Help
I will post when I have the needed Numbers so I can Share my TX also.

Welcome, Spirit. And thank you for sharing your story. We look forward to hearing your details and lab results as you get them. If you have any problems or questions about side effects or whatever, you've come to the right place. We've all been there. So ask away.

best,
kim

ricpark · « **Reply #169 on:** October 07, 2015, 08:14:39 pm »

Welcome sprint,
I went thru the same treatment at 67 years old and had the virus for 50 years. I say had because so far I'm undetected and will have my final blood test on the 19th. 1200mgs is what I started out with, but had it reduced to 800mg because of anemia. You need to watch your blood levels.
rich

spirit · « **Reply #170 on:** October 08, 2015, 03:38:29 pm »

Thank you both for your Posts

I just was almost finished with a post and it disappeared I think I was writing to much?
oK short version

Geno-1-a
VL pre treatment 1.44 no info of the two week load
AST 32
ALT-33 Dr said both were significantly Lower
Cirrhosis Likely F3-F-4
Glucose level 103

I have become more Anemic as many of you, she lowered the Riba from 1200
to 1000 and if con't to be a problem 800 and then No more Ribavirin, no matter how much I am Willing to deal w/ side effects it is not about that ""it's the Anemea

I was worried if I can't tolerate the Riba maybe the 8 weeks left with Harvoni alone
would not be long enough?

As she spoke I fought back Tears She the Dr said " if you cannot tolerate the Riba

I already got Approval for 6 Months of Harvoni alone WE are here to Give you all
the best treatments available no matter what the cost" You will leave here CURED"
NOT the VA from 1966 I have to get back to work I will write latter about other tx.
Issues
I am so Grateful for this Chance I buried my Two best Friends past 10 years from
intolerance to interferon Tx. I have the chance they never had.

Talk soon THANK YOU ALL
Russell

KimInTheForest · « **Reply #171 on:** October 08, 2015, 03:57:23 pm »

Spirit, are you getting copies of your lab results so that you can see for yourself what your hemoglobin and red blood cells have fallen to with the hemolytic anemia caused by the ribavirin? If so, maybe you could post those numbers for us.

I mention this because different doctors have very different standards about when to reduce a patient's ribavirin. Some will reduce ribavirin as soon as a patient's hemoglobin falls below 10.0 g/dL (100 g/L). Others will let them fall much lower. My hep doctor told me I wouldn't have been at risk unless I fell to 7.0 g/dL (70 g/L). I only fell to 9.5 (95), so I was never dose-reduced on my ribavirin.

Part of the difference in protocols among doctors is due to the fact that with old interferon-based treatments, patients needed to be monitored much more closely for anemia and dose-reduced on ribavirin more aggressively because not only was the ribavirin blowing up red blood cells, but the interferon was suppressing the bone marrow from manufacturing new ones. So a patient could really get into trouble.

With the new direct-actiing antivirals that we are all on, this is not the case. The bone marrow (in theory) is still working just fine and manufacturing new red blood cells at the normal rate. So one is only contending with the effect of the ribavirin on the red blood cells.

I think the more "up to date" doctors know this and are not so quick to dose-reduce on the new drugs. But other doctors are still abiding by "old school" rules about when to dose reduce.

Also there can be other factors. If you have any heart issues (arrhythmia, palpitations, congestive heart failure, etc.), then doctors will be more cautious about not letting your hemoglobin drop too low.

best,
kim

spirit · « **Reply #172 on:** October 10, 2015, 12:34:28 pm »

Kim Thank You

I don't have any Treatment results, other then what I posted. I tried to mention this Forum to the DR, she was Not Aware of it.
I will contact the VA and ask for all Records that have to do with My Hep C Results
before TX. and all afterwords.
I am not feeling to well, it seems as the few days First week that had a feeling of Wellbeing and Energy has stopped. It was nice, I forgot what it felt like to FEEL GOOD.

I am committed to except and deal with any side effects that have to be tolerated

The Issue will be the Anemia and ability to Stay with the Ribavirin. I try to keep
the Gift of this treatment in perspective, it's only been 18 days.

Nothing has helped More then the reading that is available on this forum All your experiences during Tx.
Also the thought that I will be able to be treated Longer on just the Harvoni if I can't con't
with the Ribavirin.

I learned yesterday That being out when it is HOT did make things Worse.
Thank you all have a Nice weekend.
Russell

KimInTheForest · « **Reply #173 on:** October 10, 2015, 01:16:16 pm »

Hi Russell. I think a lot of people here on treatment have commented that hot weather was intolerable and increased problems - particularly skin problems if ribavirin is involved.

Also, the general thinking is that the worst of the riba-anemia occurs in the first 4 weeks and then the body adjusts, learns to cope, maybe starts building more red bloods cells - I don't know really. But the idea is that your falling hemoglobin will stabilize after 4 weeks. This was NOT the case with me. My hemoglobin kept falling right to the end of treatment. But for many people, it is just the first 4 weeks that are the main problem.

It is important to make arrangements to get a copy of your lab results every time your blood is drawn. Some people get photocopies from their doctor's office. Other people get their results emailed to them. Others download them online from a portal where you get a user ID and password. It isn't enough to let a doctor tell you you are anemic. You need to see the numbers for yourself to know what's up and how serious it is.

Good luck!

kim

spirit · « **Reply #174 on:** October 10, 2015, 04:17:08 pm »

Kim
There is a way Called "My Vet" a way to get all Test Results emailed as soon as available.
I will activate this VA Option "Join My Vet" and have all the Needed Results so I can
post them Here, and not have to depend on the Drs as it is they are very short staffed
and I can do My Part during my Tx.
Just in the past year Relating to Back Issues I have 75 Pages and three Cds of MRI, nerve conduction tests etc, from Neurology and Neurosurgeons I just had to ask.

Thank you for Pointing out the importance of having every record in My hands.
BTW the Neurologist was Open to the Possibility of the Hep C being part of the Pain
and effects on my back and was looking forward to Following this Tx. How nice.
Thanks again
Russell

RightHere · « **Reply #175 on:** October 13, 2015, 09:59:05 pm »

Hello all and welcome Spirit,

My partner is now just over 6 weeks post treatment (harvoni +riba, 12 weeks gt3 clinical trial, F1).

Kim, it's been too long since my last update, but I wanted to let you know that your clinical trial shadow is doing well. SVR 4 no problem - yes! Such relief.

As for the post details - Somewhere 2ish weeks post-EOT, the glaring withdrawal (flu-like nausea and dizzyness) stopped, but flagging energy and insomnia has stuck around somewhat longer. The 4 week post-EOT labs tell us that his hemoglobin is back in normal range and we're told that the labs did not show any other levels of concerns. Now in the 7th week post-EOT, we've noticed that he's sleeping better in the past few days and we're hoping he will soon have more reliable energy.That would be nice. It's been a bit strange feeling like he has mono, but nothing specific to tie it to. Ah well. We'll get there.

Hope by any and all of your measures that you are all feeling better each day.
best, RH

KimInTheForest · « **Reply #176 on:** October 13, 2015, 10:32:24 pm »

Great to hear the news, RH. Thanks for letting us know how your partner is doing. And congrats on his SVR4. He is virtually guaranteed to make SVR12. I'll get my SVR12 labs done next week, and I guess Rich will too.

My own health is much better. I think my profound iron deficiency was behind my very slow recovery from the riba-anemia. So I have been pounding back a daily regimen of supplements since Sept 1: iron, B-12, B-complex, D, C. And I am feeling much better energy-wise. I will know after Oct. 20 where my hemoglobin and RBC's are at. And on Nov. 1, I'll have my iron level checked. (Am checking my serum ferritin monthly while taking the iron supplement to make sure I don't get too high, but there seems little likelihood of that.)

My post-treatment malaise also felt like mono. I even had my doctor check me for mono, but I tested negative. I literally was bedridden for weeks post-treatment with fever, sweats, severe fatigue and a quasi-delerium - like flu but it never developed into flu. However, that has all passed. I am eating normally, walking daily, in good spirits, feeling healthy, and actually getting some work done at last!

I still have the insomnia.

I think anemia itself can be a cause of insomnia. Maybe that's why your partner is sleeping better - his hemoglobin is back in normal range. Mine probably is not. But getting there!

Best to all of you,
kim

ricpark · « **Reply #177 on:** October 14, 2015, 11:07:26 am »

Great news Kim, glad you are feeling better and yes watch your iron intake.
rich

KimInTheForest · « **Reply #178 on:** October 28, 2015, 01:57:02 pm »

Got my results - I reached SVR12! No virus remaining in this bod after 40+ years of co-existing with the dang thing!!!

Health-wise I'm pretty much back to normal. Have recovered from my post-tx mystery malaise. On Nov 2, I'll know my latest hemoglobin and red blood cell levels. But I feel like the riba-anemia is gone or almost gone. Am still taking iron daily though. I was quite low. Will have that checked as well Nov 1.

How are the rest of you doing?

I'm gonna go celebrate!

kim

ricpark · « **Reply #179 on:** October 28, 2015, 02:07:30 pm »

congrats, go celebrate.
rich

spirit · « **Reply #180 on:** October 28, 2015, 02:51:46 pm »

Congratulation Kim It was your Turn.You give back so much.

I Received some bad news Yesterday .I saw Hematology They did a Bone marrow
Biopsy Apparently I have Cancer in my Bone marrow.

It was a nasty test and the little I know It does not look Good. I saw the other Vets
sitting down Hooked up to the Chemo Lines and Knew I would not go through the Chemo, Radiation and Stem cell replacement, and the side effects that even if Cured
it really takes a couple of Years to recover from and It's not what I would Want.

It makes it easier having no Family I just buried my best Friend on the 23rd he lost a Hand in Vietnam and fought 3-4 kinds of Cancer past 14 years family was the reason he went through it all.

I will know what stage and all the info soon, as well as how the Tx has been doing
although I can,t understand why Con't???

What I don't understand is Why my Hep C Dr in wanting to cont with the Harvoni
I an scheduled to see her in a week I will be out of harvoni that day..

She came down to see me as I waited for the procedure It was the hep C dr that
was Terrey eyed saying I'm so sorry.... and then said i'm not an oncologist so
I am limited and I will see you next week.

They were able to get enough of a Sample of my marrow And apparently the back pain I have felt and delt with was due to more then just four Disks Herniated It also seems
to be a Effect of marrow Cancer??
I know so little but I do know no matter what stage it is I will never chose the treatments available.

Life is Precious as we all Know, but Quality of Life is also meaningful I just turned 70
w/o Drama I really have been on borrowed time since 1964
Bladder cancer 8-9 yrs ago One surgery and BCG and TCM keep me Free and gave me all these years and I keep my Bladder.

I just need to know WHY She still wants to treat me Harvoni $$$$$
Why waist all that $ when that Bottle or Bottles of harvoni Could save another Life??

I am sure she will have her reasons? I will make my decision after I talk with her.

I am still trying to Digest is all It appears the Biopsy will tell much more.

I still feel Joy reading how most of you are all Doing well, putting up /w side effect for this GIFT of Harvoni and the other New Drugs that will Cure you.
I just wanted to write to Bill and Beto and all of you
I told Bill I would let it be know How things went yesterday AS hep C was not on my mind when I was Offered the harvoni Bone cancer was not on my mind Yesterday .

I will try to stay positive and the THOUGHT of I have the Chance to Go out on my Terms when and how To me that is the Greatest Gift

MY Father Died in 1977 at the Brooklyn VA Hospital he was only 57 The VA seems
to be part of my Family heritage He was at peace and I will hope to be as he was when it's my Time.
Thank you all for such caring ways it has and I'm sure will con,t to be a Place where
I can Share parts of my Journey
Russell

spirit · « **Reply #181 on:** October 28, 2015, 03:00:39 pm »

Sorry I posted this in the wrong Post?? my head iS a bit Off at the moment
This should have been posted under

Gratitude and Frustration Riba and Harvoni... I am not the Sharpest pencil in the box
when it comes to Computer Ability.

KimInTheForest · « **Reply #182 on:** October 28, 2015, 03:16:11 pm »

Hi Russell. So sorry to hear about your test results showing you have cancer of the bone marrow.

I understand where you're coming from in not wanting to be hooked up to tubes and go through chemo or radiation. Even so, I do think it makes sense to complete your Hep C treatment, and I can understand why your doctor wants to do that. You never know what new treatments and breakthroughs medical science may come up with for anything, including possibly bone marrow cancer. Until you have met with the oncologist and gone over all treatment options, do you really know what you are facing there? Even if you don't want chemo or radiation, maybe there is a clinical trial going that uses a totally different approach. Or maybe you could research online and find alternative treatments for the bone marrow cancer - involving TCM or other health perspectives.

I'm just saying: fix the thing you can fix (the Hep C) so you will be in a position to take advantage of any good option you may discover for the bone marrow cancer.

do keep us posted!
kim

spirit · « **Reply #183 on:** October 28, 2015, 04:29:25 pm »

Kim Thank you

I do hear what you are saying And your Right about Who knows ? what may be
on the horizon I thought about that for a Min, looking at the Harvoni Compared to Interferon etc I do also believe even if I don't live to see it A Cure is coming For
many if not all Cancers.

How many of you are or have been treated by being one of the Test groups Many I think.

I will go to my TCM Dr H Hann . I know he can Help .

It was just so unexpected I thought it was about Getting a Fibro Scan or something
to do with my Anemia

Same thing happened /w the Bladder Cancer Found by mistake in Pre Surgery Blood work for my Back.

The only thing I can think about Concerning my Thoughts When I was younger
and would hear Someone was looking for me The Fear would be so great I just had
to go find the person and get it over with it was easer that way.
I guess old ways die slowly
I know I will have a chance to sit w/ drs and hear what they have to say I usually
don't go to Worst case Scenarios For some reason I did this time. I would think i's
about Fear.

There must be a Sound reason for Continuing Tx maybe Curing the Hep C will give
me a better Quality of Life
I will know soon enough
Thank you all
Russell

ricpark · « **Reply #184 on:** January 21, 2016, 04:05:25 pm »

Just got results 24 week post SRV24 Undetected
Best to everyone
rich

KimInTheForest · « **Reply #185 on:** January 21, 2016, 04:11:56 pm »

Quote from: ricpark on January 21, 2016, 04:05:25 pm

Just got results 24 week post SRV24 Undetected
Best to everyone
rich

WAY TO GO, RICH !!!

I'm right behind you. Should be getting the results of my SVR24 viral load test any moment.

kim

KimInTheForest · « **Reply #186 on:** January 29, 2016, 02:30:27 am »

Just got my SVR24 results today!! And my book about my Hep C journey also came out today!! I feel like the Universe is carrying me along in its magnificent current right now.

I wrote my book during my 12 weeks of treatment, and posted about that here: http://forums.hepmag.com/index.php?topic=3853.msg37829#msg37829

Good health to all!
kim

ricpark · « **Reply #187 on:** January 29, 2016, 08:43:21 am »

Congrats
rich

will read your book

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