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Does Ribavirin cause anemia when used with Sovaldi??
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Does Ribavirin cause anemia when used with Sovaldi??

My husband just got approved for Sovaldi + Ribavirin for 24 weeks. We are very excited but he needs to get his hemoglobin up before starting his treatment. We already have the  meds in the house but can not start using them. He had a shot of procrit yesterday - labwork in a week to see if his hemoglobin is up from 8.9 (normal range starts at 13.9). His red blood cell count is 2.94 (normal range starts at  4.5).

I am confused. I had been told that when my husband was on triple treatment and had to stop because of severe anemia that ribavirin was the drug that caused the anemia but I just read in some old literature its the interferon shots that cause the anemia.  So which is it? Or, is it both?

Is anyone who is using Ribavirin now with Sovaldi experiencing anemia?  Just want to know what to look out for.

Thanks
Nan
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Riba will cause anemia on it's own.

Anemia

The primary toxicity of Ribavirin is hemolytic anemia, which was observed in approximately 13% of all Ribavirin/peginterferon alfa-2a- treated subjects in clinical trials. Anemia associated with Ribavirin occurs within 1 to 2 weeks of initiation of therapy. Because the initial drop in hemoglobin may be significant, it is advised that hemoglobin or hematocrit be obtained pretreatment and at week 2 and week 4 of therapy or more frequently if clinically indicated. Patients should then be followed as clinically appropriate. Caution should be exercised in initiating treatment in any patient with baseline risk of severe anemia (e.g., spherocytosis, history of gastrointestinal bleeding)

http://www.drugs.com/pro/ribavirin.html
108 Comments Post a Comment
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Riba will cause anemia on it's own.

Anemia

The primary toxicity of Ribavirin is hemolytic anemia, which was observed in approximately 13% of all Ribavirin/peginterferon alfa-2a- treated subjects in clinical trials. Anemia associated with Ribavirin occurs within 1 to 2 weeks of initiation of therapy. Because the initial drop in hemoglobin may be significant, it is advised that hemoglobin or hematocrit be obtained pretreatment and at week 2 and week 4 of therapy or more frequently if clinically indicated. Patients should then be followed as clinically appropriate. Caution should be exercised in initiating treatment in any patient with baseline risk of severe anemia (e.g., spherocytosis, history of gastrointestinal bleeding)

http://www.drugs.com/pro/ribavirin.html
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According to the prescribing info document for Sovaldi the incidence of anemia in all trial groups receiving Soavldi/Ribavirin therapy was 6%-10%

Take a look at page 6 here:

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf
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Thanks for your responses. Both were helpful

I continued reading Page 7 of the prescribing info for Sovaldi and if I am interpreting the info correctly, Ribavirin in combination with interferon has a much higher incidence of anemia.

As I mentioned in my original post my husband had to stop triple treatment after 5 weeks because of severe anemia. It was really awful so no wonder I am apprehensive about the Ribavirin piece of this new treatment. But I think  these statistics make me feel better since interferon is not part of this treatment.  I think his doctor is on top of it because she plans to start him on a lower dosage of Ribavirin and increase it in increments.

He has been through hell these three years and I am praying that he will see SVR with this treatment  and be able to address his other complications without Hep C taunting him/us any more.

Your prayers and good thoughts on his behalf (and everyone in similar circumstance)  for a successful treatment will mean so much everyone.

Thank you.
Nan

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Hi Nan, This subject is of interest to me as well since I am now on day 4 of Sovaldi/Ribavirin therapy. Keep in mind the statistics cited in the prescribing info is from trials. There is a relatively small amount of data used to compile these results, just a few hundred patients total. Some patients groups are quite small. There are multiple variables, such as co-morbidities, etc that may not have been represented in the trial group. Many trials explicitly exclude certain conditions. Since we are now in the "real world" of this therapy being prescribed more information will become available as time passes. I have been asked to report any side effects or anything at all that might be relevant to Gilead through supportpath.com  so they may expand their database. So far I have nothing to report thankfully. I will await the results of my 2 week blood draw with great interest.....
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Anemia observed with SOF+RBV and SOF+PEG/RBV treatment

Hemoglobin reductions with SOF+RBV similar to historical data with RBV monotherapy 1,2

RBV monotherapy results in ~2 g/dL reduction

Interferon contributes to anemia through bone marrow suppression

PEG/RBV results in ~3.5 g/dL reduction

.http://www.fda.gov/downloads/advisorycommittees/committeesmeetingmaterials/drugs/antiviraldrugsadvisorycommittee/ucm375286.pdf
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Having gone through the triple treatment (with Incivik) experience, I know exactly what you mean. The thinking was that that would be the end of the virus also. How disappointing it was when he had to stop treatment.  The real world results are what counts.

Please let us know how your treatment progresses (any signs of anemia, side effects, etc.)  I am praying that you will soon see/hear the word "undetected".

Nan
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That link takes you to the FDA advisory PDF, this link will take you to the page where you can also click on the text version, it is the complete application presented to the FDA for SOF

http://google2.fda.gov/search?q=Sofosbuvir&client=FDAgov&site=FDAgov&lr=&proxystylesheet=FDAgov&requiredfields=-archive%3AYes&output=xml_no_dtd&getfields=*

Have a great day
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Thanks! I will post my progress once in a while. I am very fortunate in that I am very healthy other than having the virus and have never had any issues or symptoms. The virus was discovered in a routine physical. I have F2-F3 fibrosis on biopsy from June 2013. I sincerely hope this time will be the charm for your husband! I am being treated at the Dartmouth Hitchcock Medical Center in Hanover, NH. This is a large teaching hospital with a large hepatology/transplant facility. Some transplant patients here were granted an early "compassion" approval of Sovaldi/Ribavirin several months ago. I was told by my doc that they are "sailing through" the treatment beautifully. This not only makes me very happy for them, I am taking this as a very good sign for us all.
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Thanks so much  for that pdf link. It has lots of good information and easier to read than the small print product info.

What I am taking away from this is the Ribavirin definitely poses a risk of anemia for him but it would have been worse with the interferon. That is probably why he is considered interferon ineligible.

I think his doctor is handling his particular situation well.

Thanks again for your input.
Nan
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I hate to use the word "lucky" when talking about HCV so I will say you have been blessed to find out you have this virus before significant damage was done to your liver.  

My husband is Genotype 1a. The preferred treatment is Sovaldi/Rib/Intf
for this group but as he is ineligible for interferon he will be on Sovaldi/Rib for 24 weeks.  Would you mind sharing your genotype?  We are in NYC and he too is being treated at a major teaching hospital with large transplant center.
That is definitely the way to go for anyone who is fighting this virus, especially if he/she has advanced liver disease.
Nan
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HI.

For someone with anemia before starting treatment will have issues with anemia during treatment as anyone would with other conditions will have as well.Depending on the cause of the anemia treatment may or may not increase his anemia. As someone in a post above pointed out the treatment will normally drop hemoglobin is patients without initial anemia a few points but won't drop their hemoglobin enough to cause anemia (< 10.0). So the treating doctor must be aware of this and has plans for managing your husband's anemia during treatment.

The following comments are based on folks WITHOUT initial anemia as the people that participated in the clinical trials and my comments about my own experience treating for 48 weeks with the Sovaldi treatment. People with initial anemia were excluded from trials to the best of my knowledge.I know that people with Hemoglobinopathy, a hereditary hemoglobin disorder were excluded from the FISSION trial for example. And the NEUTRINO and FUSSION trials excluded those with "History of clinically-significant illness or any other major medical disorder that may interfere with subject treatment, assessment or compliance with the protocol."
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As others have said the incidence of anemia when treating with Sovaldi is very low as seen in the data sets from the clinical trials.

There were in five Phase 3 trials with Sovaldi with a total of 1724 HCV mono-infected subjects with genotypes 1 to 6 chronic hepatitis C. This do not include the many people who were in the phase 2 trials.
Of course everyone responds to treatment differently. As we know there are people the treat with peg-INF treatments and have none to little side effects. Trial data sets only indicate what happened to most people not what will happen to any individual.

Triple treatment (Incivik and Victrelis) although having higher success rates than peg-INF and RIbavirin alone, is notorious for anemia and is especially difficult for folks with cirrhosis to complete due to side effects including anemia. Many cirrhotics need procrit or transfusions to complete the treatment.

As I have post for over a year it is the combination of peg-INF AND ribavirin that causes anemia NOT ribavirin alone in THE MAJORITY of patients as has been shown is numerous studies.  

As you may remember while awaiting liver transplant for HCC (liver cancer) I  was one of the first 61 cirrhotics to be treated for 48 weeks with Solvaldi and ribavirin. I never became anemic (< 10 HGB) during the entire treatment. As treatment progressed I did experience increased fatigue from the ribavirin but then I treated for 2x the duration as your husband will and I had advanced cirrhosis with ascites and HE. One side effect of ribavirin I would point out is insomnia. I took my meds at 12 hour intervals and took my night dose late in the evening. For many months I could only sleep 3-4 hours a day. I am sure my cirrhosis also contributed to the sleep problems but it is something to be aware of should sleep issues arise during treatment. All in all it is a was easy treatment to do. By weeks 4 at the latest he will be undetectable and through treatment will not have the virus doing further damage to his liver. The only other side effect I had was headaches (which is one of the common side effects of treatment) for a few weeks around weeks 5-10 and then they went away. All this information is available in the Sovaldi label including the early results of the trial I was in for us with HCC awaiting liver transplant. That is the reason that Sovaldi is approved for patients with hepatitis C and HCC (liver cancer).

All of what I am saying can be found on the Sovaldi label.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

I wish the best to your husband with his treatment!
Hector
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Hi Nan, I'll use the word lucky, yes I am lucky on many levels. The experience has been a wake up call. I stopped drinking, lost 35 lbs and rode my bike 6000 miles in 2013 all in preparation for treatment. I am lucky to not be sick. I am lucky to be a genotype 2. I am lucky to have found this group for support. I want to give back and am thinking about how best to do this...any ideas?
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You already are by being a participating member of this forum. You are getting help and you are also giving help by sharing your knowledge, experience, and encouragement.

Once you have reached SVR, I am sure other ways of giving back will come easily to you. You will have much to celebrate having dodged a big bullet!

I wish you the very best in your quest for SVR!

Nan
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Thank you, Howie. As usual you always provide valuable information based on knowledge and experience.

Yes, I believe his doctor is preparing to treat his anemia throughout this treatment. She already ordered 5 vials of Procrit for him (40,000   which he will inject once a week (or at least that's the initial plan anyway).

Since going through the prior terrible experience of anemia on triple treatment, I think it is normal to be really nervous about this. Its what caused him to having to stop treatment and just the thought of that happening again is
just too hard to think about. Hence, the post.

My gut tells me he will probably have some issues with the anemia but he will make it through treatment this time - successfully.

Thank you for your encouraging post as usual.

Hope you are continuing to do well post-transplant, Howie.

Nan
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Just an update -
My husband's ;atest labwork shows some improvement in hemoglobin and hemocrit one week after his first shot of Procrit.  Hemoglobin is at 9.1
and Hemocrit is at 28.0.  Dr prefers to start treatment after Hemoglobin is above 10 and Hematocrit above 30. He had his 2nd shot of Procrit today.
Hopefully he'll be ready for treatment soon.

Nan
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I hoping to start Sovildi & Ribavirin in about a month Genotype 2a,2c

My readings last week
HEMATOCRIT 47.3 % 38-50
HEMOGLOBIN 17.1 High g/dl 13.5-17

My doctor wasn't too concerned because my reading were near or a tad over the high end and have been like that for quite awhile although my PLATELETS ave 90 to a 100.   Once I start treatment I will provide regular updates.  In my journal I posted some blood test and biopsy history.  
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Hoping you start your treatment very soon and that you will soon hear the words UNDETECTED and SVR!

Nan
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I am posting this to nan, just because that is the predominant poster here, although this actually reaching out to the group. I am a newbie-starting treatment tomorrow with Sovaldi and Ribapak. I am a genotype 2 having been exposed in the early 70's. I decided that I will share info as I go through this treatment. I am nervous about what to expect, but I am sooo grateful for the new meds. Interferon scared me. I don't really see where anyone has had very serious side effects. That to me, is good news. Anything I should be aware of?
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So many posts and not sure which one to address.      Week 5. Solv/ribv.         12 weeks.      Geno 2.      Undetectable virus after 2 weeks.     Side effects are minimum to none so far.    No anemia.    Labs all good.    Get more results on Friday so will post when I know.     Please don't be nervous about taking these meds.    I've had antibiotics that made me feel worse than this combo.    Honestly if I had to stay on them forever I would do it to keep this virus at bay.   Never took interferon but the Ribavarin seems to get a bad rap as well.    So far I don't see any bad reactions from it.    To nan not sure about the anemia with your husband but sure he will be watched so carefully that if a problem arises you will know what to do.    Perhaps they may start with a lower dose to see how he does.     I go to Mayo Clinic and the only thing they told me was if my temp exceeds 101.3 to go to the. ER.    I have cirrhosis as well.      Wish you all so well on this journey and will give you further updates.   My only wish is that this drug will be available soon to everyone as no one deserves to have this virus.        Kim
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Great news!  My husband's hemoglobin is now up to 10.1 and he will be starting Sovaldi plus Ribavirin tomorrow!  Livelife777 you are right - they are starting him with only 400 mg. of Riba  and will increase as they see what happens with it.

What a great birthday present for him! It's his birthday tomorrow too. I can't help but think its a great omen after everything he's been through. He's geno 1a so we know its not the best possible option but God willing he'll be undetected soon and it will give his new liver a much needed break. He will continue to take Procrit once a week and have labs done once a week to see how things are going.

Thanks everyone for your continued support and prayers.

Nan

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Fantastic news Nan good luck and wishing your husband a rapid SVR for his birthday
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Hi Nan, I am so happy for you and your husband!!!! I am still trying to help my husband get on treatment. We got soooooo far and now all of a sudden his gastro wants him to come in next week to discuss the plan. You see, he wrote a script for Olysio and Sovaldi. We have the bottle of Sovaldi sitting here on the table. The Olysio is at his insurance company just waiting we us to call to have it shipped!!!!!!! The plan was to have him checked for Q80K and then decide. So after waiting for 4 weeks for results (and of course me calling them every few days to see if results came in) GUESS WHAT? He is negative. So what could be the problem? He is genotype 1a, has a major accident last year, over 8 surgeries and still has issues. He is in early stages of cirrhosis. Do you think he is considering going to Sovaldi, RBV and Interferon. I am so upset. I need advice and support. My husband can't understand all this science and gets very confused when I try to explain. His accident also caused two bleeds on his brain, so he has some cognitive issues. I want to cry....I can't see him going through the interferon with all he had already gone through. We have a prescription for Zoloft that he was going to fill if he was to go on the interferon and that was before we got the doc to write a script for the off label combo. However, have you ever gone on an antidepressant and then come off? The withdrawal from that stuff is horrific. Nan, I feel like we share somewhat similar situations, I again, know what you are going through. I am praying for you and your husband.  
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Wow, just when you think you are alone with all the madness, you hear someone else's story and realize no, you are not alone -there are others out there who are dealing with as much or even more than you are. Your husband is lucky to have you as his advocate and supporter - that is a huge part of his being able to get through this terrible ordeal.
So sorry to hear about your husband's accident and surgeries. Head injuries are really tough and then throw in the possibility of hepatic encephalopathy starting as a result of beginning cirrhosis, it makes it very, very difficult to deal and live with.  
You mention that he is being treated by a gastroenterologist. Has he been evaluated by a hepatologist, preferably at a major transplant center? They work in teams and would be the best qualified to make these decisions.
I know your husband is still at early stages of cirrhosis and God willing won't need a transplant but I think you would want the very best overseeing his case given his other complications. He may have a very good doctor already.
The important thing is that you have confidence in his decisions.  I'm not sure that's what's happening right now. That's why I would suggest another consultation with a hepatologist.

Hang in there, Faithdove! I truly know how difficult life is right now for you and your husband. The hope these new meds provide is priceless.  Be patient and know that things will be better with time.

All the best,
Nan
    


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Thanks so much.  I was so happy filling his medicine tray last night. Don't know what to expect but it does provide new hope for FINALLY get rid of this insidious beast that has caused us so much trouble these last three years!

Here's to slaying that "blankety" dragon at last! I know many of you know exactly how we feel!!!

Here's to SVR in the near future for all  of you.
Nan
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You and my husband are starting together. He's 1a so sovaldi and ribavirin for 24 weeks is his treatment. It's not the best treatment option for him but he is interferon ineligible. I hear this treatment has great results  for geno 2 so stay positive, follow your treatment well, and before you know it, you'll reach SVR!

Nan
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Great News Nan  Wish you rapid SVR and rising hemoglobin.

My VA doctor approved me for Sovildi & Ribavirin Genotype 2.  Then was told that there was only an interim approval for Sovildi for the most serious patients right away. (special quick approval urgent compassionate care guidelines)

The Hep C treatment person is waiting for the VA pharmacy to receive further information and guidance for the criteria for the next type of patients to be treated.  Since I am F3/F4 well compensated I should meet the criteria for the next patient classification to get treated. They were hoping within the 2 to 3 months but could be longer as they really don't know yet at the hospital level.
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Thank you. Jimmy. for your encouraging words. It may be wishful thinking but I can see an improvement already in my husband. I think its because of the two shots he's had of Procrit.

I am sorry you will have to wait a little longer. It was hard waiting just two weeks for his hemoglobin to rise enough so we could have him start treatment.

I hope your wait won't be too long. I believe I  read in one of the trials that 97% of Geno 2 reached SVR with this treatment. That's what you have to look forward to!

Wishing you the best.
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Hi Nan.    Had blood work done today and knew you were worried about hemoglobin so here's what ribv/solv is doing in that department.    Week 2 was 14.4 and week 5 1/2 is 11.2.   My doc at Mayo said very typical and usually after week 4 the #s level out.    Didn't think it would drop to much after this last work up.     Go back in 2 weeks for a recheck so they said I was right on target.     Hope so.     Virus still undetectable.     Still feel really good.    Nausea for a few days but think that's resolving. RBC was a little off to as we're INR but will come back to normal when treatment stops.      Platelets in the normal range.      Bili total a little up.   AST and Alt in the 20s.     Hope your husband does well and have a lot of faith in the treatment.      Keep us posted as he moves forward with treatment.     Take care.      Kim
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Thank you so  much  for the update, Kim. It is helpful to know what others are experiencing.  He is on day 3 of treatment, had his 3rd shot of Procrit yesterday. He had a fever yesterday of 101.4 but resolved quickly after taking a tylenol. As long as he does not have a bout of HE, we're good.  So far so good. Doctors keeping a close eye - labwork once  a week. Let you know what happens after his next tests.

Thrilled for you that you are undetectable. Makes everything you have to go through so worth it.  Happy you are feeling really good. That is just so great..

Nan



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Hi there,

Finally another person with GT 2a or 2c !  Have you started your Sovaldi and Riba yet ?  I am in my 5th week and a bit tired from the Riba but otherwise doing good....  Good luck !
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Hi !  Glad you feel good on 5th week...  I am on same meds - 5th week.  Just feeling a little fatigued but not bad.  Have some mouth cankers which I think might be from the Riba.  What's your dose of Riba ?

GT 2
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Hi, we are going to go with Sovaldi Interferon and Ribavarin. My husband thinks he can do this for 12 weeks. I was hoping we would get approved for the off label Sovaldi/Olysio, but it did not happen. We start on Sat. As all the meds should arrive on Friday. Sending positive thoughts for you and you husband as we all move forward!!
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That is the preferred treatment for Geno 1a. I wish him every success with this treatment.

As I mentioned before, the reason my husband is not on that treatment is because he is interferon ineligible. Anemia was a big problem for him when he was on triple treatment with Incivik and had to stop. That was pre-transplant, and he had decompensated cirrhosis with edema, esophageal varices, and HE at the time. Probably wasn't a good idea to start him on that treatment at the time, but I don't blame the doctor for trying. It was after that that he was evaluated for transplant at a major liver transplant center. I'm not really sure why he is considered ineligible for interferon but my guess is because he is post transplant with bile duct complications, low hemoglobin and some kidney issues. His creatanine (kidney function marker) has been between 1.7 - 1.9 for months.  High normal is considered 1.4.

Assuming your husband does not have these issues, my guess he'll do fine
with the added interferon.  And he only has to treat for half the time my husband does.  That's great.  

Please keep coming back here and letting us know how he's doing.  I'm wishing him an easy treatment and SVR. You both deserve a break!

Nan


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Thank you Nan, I will keep you posted.
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Update
Today is Day 9 of my husband's  treatment (Sovaldi + Ribavirin for 24 weeks).  Based on his prior serious anemia on triple treatment, we were concerned that it may be a problem again. He has been having Procrit shots weekly as a preventative measure. Riba dosage is being kept at 400 mg. due to kidney issues.

Today's labwork shows hemoglobin is at 10.2 so Procrit is doing what its supposed to. AST (39)  and ALT (14) are both in normal range since I don't remember when. Billirubin also improved to 2.0.  So numbers are heading in the right direction.

Follow-up Hep C RNA test next week. Last week's baseline VL was at 582,497.  Doctor predicts it will come up UND.  That would be amazing!

Now if we could just get these bouts of HE under better control. Doctor thinks he may be getting dehydrated from the diarrhea caused by the Procrit.
Told him to drink lots of fluid.  Good luck with that!  He is one of these people who just won't drink water.  He does drink cranberry juice but I guess its just not enough.. Any suggestions?

Nan



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Hi Nan!! Day 1 for us here. I am forcing him to drink water too. Lol, I also mix cranberry juice wit a bit of water and seltzer and he loves it. Just make sure he is not on any meds such as warfarin, because cranberry juice interacts with it. I also cut up lemons and cucumbers and add slices to a pitcher of water. He likes that. Then I make fruit smoothies in a blender: strawberries, blueberries, 1 banana, a splash of juice and a few scoops of vanilla ice cream make for one happy hubby!!!
Sending positive healing thoughts and prayers.

Oh, when you say "bouts of HE" what symptoms do you see?
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I remember Day 1 felt great.  Just knowing that you had the weapon needed to kill this virus was awesome.  Congratulations!

Thanks so much for your suggestions. I will definitely be using them.

Having HE is the pits. He is up most of the night walking "back and forth" looking for the bathroom. There are times he decides the kitchen is the bathroom and pees in the kitchen trash bin (sorry to be so graphic) or other times he decides that the front door leads to bathroom and proceeds to walk out the front door in nothing but his underwear.  TG most times I catch him before he actually makes it out the door.  It is a scary experience to see him so confused and unable to comprehend whats going on.

One bout last June was the worst. I saw he was having a particular bad episode of confusion so I called his sister and asked her to come over as I was going to call EMS to take him to the hospital. After she arrived, I called 911 and they sent a firetruck and EMS. They tried to place him on a stretcher but as he was so confused he starting fighting six burly men. He thought he was protecting himself. They had to tie him down. It was horrible. I learned then never to call 911 again and just deal with it myself.  He takes lactulose daily and an antibiotic called Xifaxin. That helps alot but the episodes still come up periodically though not as severe. Since he been taking the Procrit shots hes had an episode weekly. The doctor thinks he may be dehydrated as the Procrit causes diarrhea so I cut the lactulose the days he gets the shot.

Just writing all this is exhausting...imagine living it.  

God willing he/we will get some relief once this virus is vanquished. t least that's my hope.

Thanks you so much for your positive thoughts and prayers for healing. he could really use them.

Nan
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Oh geez, that is very difficult and very frightening for him as well as you. Once the virus is gone that will be much of a relief to his body. Have you asked the doctor about giving him pedialyte? Maybe he would drink that and get some electrolytes back into him. I will pray for him and you. (((((((((Hugs)))))))))))
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Little over one week for me on the Sovaldi + Ribavirin, side effects, none really, after I take it all I get is a little high type of feeling, Lots of water, I drink almost a gallon a day, seems to work great for me.... 23 weeks left :) good luck to you
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My husband is on Day 18 of meds (Sovaldi/Riba 24 wks).  Labwork shows continuing improvement on all liver enzymes. AST and ALT are in normal range.  Billirubin is now at 1.3. It hasn't been below 2.0 in many months.  
He is post transplant 1 and 1/2 years with cirrhosis of new liver.  Has been getting a procrit shot weekly to keep Hgb above 10.  Has had 5 shots so far.

Started at 8.9  + procrit   next labs 9.1 + procrit  next labs 10.1  + procrit  next labs 10.2 + procrit  next labs 9.8   So the procrit is helping to keep him at or near 10.  

Problem is he has an episode of HE every time he has the shot and that results in much more fatigue over the next couple of days. He is also taking daily lactulose and Xifaxin. I'm just wondering if the improvement in his liver function will help to stabilize his hgb eventually where he won't need the procrit shots. Dr said his HE should improve based on this previous study.

http://hepatitiscresearchandnewsupdates.blogspot.com/2013/11/compassionate-use-regimen-of-sofosbuvir.html

"Overall, 64% demonstrated improvement of decompensation events; 11% showed stabilization of events

Marked improvements in liver function tests observed during treatment, including reductions in ALT, bilirubin, and international normalized ratio

Hemoglobin levels decreased during treatment, likely in association with RBV
MELD score also decreased during treatment"

Sounds very hopeful for all - not just for post-transplant patients.
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Additional key points from the study in my prior post:

    Sofosbuvir plus ribavirin (RBV), with or without peginterferon (pegIFN), well tolerated and active in patients with severe HCV recurrence after liver transplantation
     Marked clinical improvement and/or disease stabilization in majority of patients (75%)
     More than one half of patients (56%) achieved SVR12
     Liver function tests improved during treatment
     Substantial mortality due to disease progression (25%)
    Sofosbuvir-containing regimens well tolerated, with only 1 serious adverse event attributed to treatment

Reading the results of the study, (and assuming I am interpreting the date correctly) sadly, 12 patients involved in this study died from their very advanced liver disease resulting in the lower SVR12  number of 56%. Their deaths were not attributed to the new meds. Almost all of the remaining living patients did achieve SVR12.

This study made me understand better why his doctors chose this treatment for my husband. Guess we will just have to deal with RBV side effects.

Nan
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Great news!  My husband's baseline viral load was 582,497 on 2/7/14. He started treatment on 2/13/14.  Just got results of 2 week retest taken 2/27/14.
His viral load came back at 250!  Amazing meds!

Based on these results doctor believes he will be undetected by week 4 retest. This is a really great result because he has been taking only 400 mg of the Ribavirin to avoid anemia. given his history.

Nan
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Fantastic news Nan!!!!

SVR go! SVR go! SVR! SVR! SVRRRRRRR!!!!!!!!!!


Doing my best cheer leader imitation I hope no one is looking LOL

Lynn
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You go, girl! I'm right there with you!


SVR go!  SVR go! SVR go! SVR! SVR! SVRRRRRRR!!!!!!!!!!

lol :-)  Feels good to laugh

Nan
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I have just joined the group today. I am grateful that my Dr. found my HCV in 1997. I also am geno 1a. I've heard that it is the hardest geno type to eradicate. Could this be true? I've tried treatment 3 times and it was no help.
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Hi ChazC
Welcome to the Hep C forum!

You have come to the right place. There are so many people here who have the knowledge and experience to help guide you as you learn more about Hep C. You have been through a lot already having gone through treatment 3 times unsuccessfully.

Know that there are great new meds out now and others to be approved by the FDA very soon  that will give you hope that you will finally get rid of this
virus at last.

You may want to share some information about your current medical condition
and which treatments you tried previously.

Keep coming back. You will find help and hope here.

Nan
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My name is Joe Giordano. I have gen. Type 2, I start sovaldi/ribivirin treatment on the 24th. I'm a little worried about the side effects. Has anyone had any serious side effects?thanks and God bless.




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Hi Joe,

I am also genotype 2 and have been on the same treatment for 6 weeks...I'm 1/2 way through and have had NO side effects at all. I am out XC skiing 3-4 days a week and feel fine. I have no other health issues and am in good shape so that may have something to do with it. Everyone is different but from what I am hearing from my doctor's office folks are tolerating this treatment very well. Wishing you the best for SVR and an easy treatment! Dave
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Thanks Dave, I appreciate your comment.
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Hi there and just want to let you know how the anemia looks.    In my 9th week of treatment at Mayo.      Hmg is 10.5 and down from 2 weeks ago at 11.    They are not worried so the regimen stays the same.    Will be done April 7 so trying to keep them up with diet.     How is hubby and hope his levels don't drop to much.         Kim
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Hi Kim
You had started treatment at 14.4 hgb right?
Now you are at 10.5. So the doctors agree the
Ribavirin has been lowering your hemoglobin/rbcs?
There is a reason I'm asking which I will get to in
my next post.
Nan
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Think that my hmg was 13 to 14 to begin and sorry I'm not sure which.   During treatment it's been at 12.8' 11.2,  11,  and now 10.5.    Been told that hmg goes into anemia in 12% of the patients.    Think that's also stated on the ribavirin pamphlet .    My RBCs are also lower and were in normal range when I began.        Kim
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Thanks, Kim.  

As I previously posted my husband has been having increased episodes of HE since starting the procrit and sovaldi/ribavirin treatments. So I wanted to see if there is a connection between raising his hmg and rbc's and the HE.

I found online that a blood transfusion may result in mild hemolysis. Hemolysis is the breakage of the red blood cell’s (RBC’s) membrane, causing the release of the hemoglobin and other internal components into the surrounding fluid.  This results in elevated blood ammonia levels (which is one of the causes of hepatic encephalopathy). So I was thinking couldn't a shot of Procrit do the same as its purpose is to stimulate the production of rbc's?

Then by coincidence, today I'm reading a list of side effects of Ribavirin given to me by the nurse.  Third on the list of side effects experienced by up to 64% of patients is hemolysis!  Bingo - so the Procrit is stimulating the the production of rbc and raising the hemoglobin. The ribavirin is causing the hemolysis which is resulting in higher blood ammonia levels - which is likely the reason he has been having these episodes of HE weekly lasting several days.  

So now the problem is what do we do? Dr said he does not need procrit  this week as his hmg is at 11.4.  That's great. But since his hgb is up already, the ribavirin will continue to cause the hemolysis which will continue to raise his ammonia levels causing encephalopathy.  (How do I know this? Because he is in the middle of an episode of HE right now (up all night long).

I don't know how we can continue this treatment for another 5 months like this. Doctor said we can reduce his ribavirin to 200 mg from 400 mg but I am worried what impact that will have on getting rid of this virus.  

I asked about the Olysio instead of Ribavirin and she said he is not able to take it (my mind is a total blank as to why at the moment but it made sense when she said it).
I guess we will see if anything improves since no shot this week and the hgb will likely go down.  This is just the latest crap this poor man is dealing with in the long, insane journey we have been on for three years now.  AARRRGGHH!  (Just venting)

Nan







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Wow!!!! You are such a great detective. I guess years of med school doesn't help some doctors! Your husband is so fortunate to have you by his side. So the doctor said no to Sovaldi and Olysio? Has your husband had his viral load checked yet since starting treatment?
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Viral load will be back in a couple of days.  
I'm afraid if they don't change something he will have to stop treatment. I wrote his doctor and told her whats going on.  This is so reminiscent of his experience on triple treatment except that they are giving him procrit to prevent the anemia. So instead he now has HE which is getting worse.
He had to quit last time at 5 weeks and here we are at 5 weeks. I really can't see him continuing like this.  ;-(

Nan
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So sorry that you are going thru this.     Makes perfect sense.   Haven't done much research into how this virus is eliminated as I recently found out that I have the virus.   Guess lucky somewhat that didn't endure the traditional treatment.  From the little information I've gathered feel that the Sovaldi is the major prime mover in the elimination of hep c.   I know they are synergistic with the combo of the two but the newer drugs are the key.   You mentioned being on this protocol for 5 months, is that correct?   Guess I'm wondering if you took the extended version with the Ribvavirin at 200 mg would that impact the cure rate?   I'm sure you must be so frustrated with this situation.  Don't even know if the meds would be covered if the format changed.   Only had HE once but that in itself was more than enough.  Would have thought your Doc would have been aware of the possible contraindications upon prescribing this treatment.    Other than consulting with
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Sorry........Sovaldi or clinical trial orgs not really sure what to do.   When in doubt I've always gotten a 2nd opinion.     Someone must have the answers to help you.            Kim
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Keep us posted on his viral results. Sending positive healing thoughts!!!
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Thank you for your posts.
Last night's HE episode was by far the worst one he has had in a very long time..  He couldn't walk and fell twice because his legs couldn't hold him up. He couldn't talk, he was totally unfocused. I had to literally shove the lactulose into his mouth.  I really thought I would have to call 911 which is the last thing I will do because of a prior very bad experience when I did that. (They had to tie him down.)  Thank God the lactuose did what its meant to do and a good bit of the ammonia/toxins were expelled. He is much better this morning yet extremely fatigued. He took his meds without incident.
    This treatment is for 24 weeks because he is interferon ineligible (due to post transplant immunosuppressant drugs)   Since he has some renal issues the dose was fixed at 400 mg. Now being reduced to 200 mg. because of the HE episodes.
     I have emailed his doctor again and asked her to have the team reevaluate the possibility of prescribing Sovaldi/Olysio in his case if reducing the ribavirin doesn't help things. I do think he will be undetected when he gets his results as he was only at 250 at week 2.
     He had an aggressive recurrent Hep C and has bile duct problems which are destroying his new liver. If he has to stop this treatment, I really don't want him to wait until the end of the year for the new meds that are not even approved yet if there is another option available now.

Thanks for listening. It really does help to be able to share all this. It's so hard to know what to do.

Nan
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"Guess I'm wondering if you took the extended version with the Ribvavirin at 200 mg would that impact the cure rate? "

I too have been wondering the same thing.  I can't help but think that it will have an impact on the possibility of his being cured.

I just got an email letting us know that  the results of the Week 4 HCV RNA test came back    "Detected but less than 43".   Week 2 had come back at 250.

I am disappointed but the truth is I thought that it was a possibility that it would still come back "detected" because of the lower Ribavirin dosage.

This is such a "deja vu" experience.  When he tried triple treatment with Incivik his viral load came back as "detected but less than 43" at Week 4 and even though he quit treatment at week 5 it remained at "detected but less than 43"  for 8 months until his transplant.

So weird to hear that he has the same result now.

Nan


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About 6 days ago you mentioned your husband HE episode was by far the worst one he has had in a very long time.

I hope he is doing better now.  

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Thank you for asking. Unfortunately things got worse after that post. On Tuesday he had another episode of HE and literally collapsed on me. I called 911 and they took him to nearest local hospital. He had 104 fever and was dehydrated. They started him on multiple spectrum IV  antibiotic and fluids. Meanwhile arrangements were made to transfer him to the transplant center hospital. We were in the ER for 28 hrs. before  he was transported.  A nightmare but they did stabilize him. He is still in the hospital but they expect to transfer him to a acute care rehab facility on Monday where he will get physical therapy while they continue to monitor him.
They plan to leave him on 200 mg of ribavirin trying to find the right balance for him that will reduce the HE episodes and hopefully eliminate the hep c
I have come to accept that this is his only chance right now to get rid of this virus. Hopefully they will find a way for him to stay on treatment for the remaining 18 weeks. Then we will deal with whatever's next.

Nan
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I am so sorry for what you and your husband have been going thru.     Hope that they can find the right combo so that he can clear this virus.   I so admire your determination and hope for a successful outcome.         Kim
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I appreciated reading all the above posts.  I start on the sovaldi / riba combo next week.  We were told at class that we would be given lab schedule for blood work and that if we missed appointments we could be taken off the protocol.  

As any of who have taken riba in the past know, we have been told that it can affect your blood count and that is why it is important to do the lab work.  I can understand your concern.  I so envy the ones who have spouses who are such good helpmates.  This is hard to do alone...That is why I read every ones posts.  Howie is my hero and crusader on this...I figure if he can do it so can I or at least try 100%.  

I am geno 1/ stg 4 Esld / decompensated liver / on transplant list with an over the top HCV load so I'm crossing my fingers....it's good to read everyone's posts and good luck to your husband and I will be watching his progress.
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I pray, hope and wish the best of luck for your husband and your support of him.
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Thank you all for your support and kind words. It's been a long and difficult road for us since we found out he had this virus and end stage liver disease back in Dec. 2010. He has done everything that has been asked of him - fighting bravely to stay alive. Nothing has come easy for him and now this.
He is probably the strongest person I know, never giving up, and just pushing forward no matter the roadblocks. We have been together over 40 years and I know that we are each other's source of strength. So we will keep fighting and look forward to the day when he hears he has finally beat this virus and then hopefully go on to a hep c free life.

Your prayers and positive thoughts are so appreciated. Thank you.

Nan
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I am hoping and praying that all goes well for you on treatment. This is the same treatment that Hector was on for 48 weeks and he was able to get through it pretty well.  Unfortunately, my husband has not been that lucky (so far).  Hopefully they will find a balance that will make treatment easier for him in the weeks ahead.
     The labs are very important. I gave my husband a procrit shot once a week for the first five weeks. Each week his hgb increased but unfortunately so did his HE episodes.  After the fifth shot, his labs showed 11.4 hgb. No shot that week,  yet he ended up in the hospital. By this 6th week, his hgb had already dropped to 8.8 and he was given a procrit shot on Friday.
     Not everyone has this problem as Hector's experience has shown.  I'm just writing about my husband's experience because I think it will be helpful to others in knowing what could happen and what to look out for.

Please keep us posted and know that you are NOT alone. Draw your strength from all of these  members here on the forum who are wishing you the very best as you go through treatment to finally get rid of this insidious virus.

Nan
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I was wondering why his hgb had dropped so rapidly from 11.4 to 8.8 in less than two weeks time. I think I found the answer. While in the hospital, he is being giving heprin to reduce the risk of blood clots. I just read online that heprin can lower the platelets. I am guessing that would reduce his rbcs and hemoglobin.

Does anyone have any input on whether the heprin shots lowered his hgb?

Nan
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I just read all that is going on with your husband. Oh geez, I hope the doctors can get him on the Sovaldi/Olysio now and stop the RBV already!!!!
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Happy to report my hubby is out of the hospital after seven days of IV antibiotics and fluids. He is doing so well they cancelled the acute care rehab they had planned for him on discharge.

He will be continuing with the sovaldi/ribavirin treatment (with only 200 mg. of ribavirin for now). His doctor said he will probably have to be periodically readmitted to the hospital while on treatment given his HE episodes. His ammonia levels go up causing encephalopathy, needing more lactulose, causing dehydration over time. After six weeks of HE, his body just had enough. He got 104 fever and ended up in the ER.

But the news is not all bad. They are upping his prograf (immunosuppressant) for the first time in over a year. Seems his prograf level is low indicating his liver is working better to remove it from his body. They had kept the prograf level on the lower side so his immune system would still be able to fight the virus from attacking his liver.  Now that the viral load is  <43  it is no longer attacking th liver with such verocity so they can increase his prograf.

Thanks all for your continued support, positive thoughts and prayers.
They are working!

Nan

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I am so happy to hear this news!!!!! I am continuing to pray for your husband and for you to have the strength to also take care of yourself. This is very exhausting to the patient and us care takers. ((((((((((Hugs)))))))))))
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Hi you.     So sorry with all that has been going on with your Hun.     Seems tho at least you have some good options to explore and hope with success.  Wanted to let YOU know have 10 days to go and had blood draw today.     2 weeks ago we were hovering at 10.5 with the hmg and today it actually went up to 10.9.     Sooooo perhaps there is hope for your man that it may not keep declining.     Will keep you in my thoughts and pray for a less bumpy journey.       Kim
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Wow, Kim! Only 10 days to go!  That's just terrific.  Happy to hear about the increase in the hmg.  Sounds like your organs are starting to better do what they're supposed to.  I'm praying for an outstanding result for you.

What a wonderful possibility - SVR soon for you.  Yay!

Nan
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Hi Nan,

What does HE stand for?

I have been doing 2 injections per week of procrit. My HB finally stabilized at 12 and stayed there, so I stopped taking the procrit. 1 and 1/2 weeks later my HB dropped to 8.8. I think some people just happen to be extremely susceptible to anemia.

Yes and I did end up in the hospital for 3 days with high fever, vomiting and diarrhea. After 8 or 9 IV bags of rehydration fluid and antibiotics I was ready to get out of bed again.

I am interferon/ribavirin 48 weeks. I have 13 weeks left.

I wish you and your husband well.  Sending prayers!
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Nan, we continue to pray for your husband and you. Hoping his hepatic encephalopathy is getting better.  When my ammonia levels were up there was a med called Xifaxin (rifaxamin) they prescribed for this. If he is having difficulty with the lactulose  you may wish to ask the doctors about this. I also took the lactulose with a later bout and it did help my HE.  Hoping and praying for your husband to improve.  Stay strong, be well.
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I am so sorry for your trouble. You are so incredible. Please take time for you in all this (do you do yoga/meditate/run?-these things are my stress reducers). On the bright side, you noted that his liver is seemingly getting a break in all of this. If you are like me, I would hold on to that as you struggle through this.

Note-From what I know (and I am not an expert on this-as always,-ask your doctor for an expert opinion) about dosing for heparin anticoagulation therapy and blood monitoring that is done and why from when I practiced as a nurse AGES ago, the heparin would not have lowered his hemoglobin directly (even though it can reduce a persons platelets - this is generally because of an immune response to the heparin and not a direct result of the heparin's mode of action). But, as an anti-coagulant, it increases the potential for bleeding, which can result in a decrease in the Hgb and Hct in addition to the hemolytic anemia associated with the medication. I am sure that they are checking for bleeding and have ruled that out.

Our physiological responses to drugs will not all be the same (and the  level of disease can add to the complexity of our responses.  This is why clinical studies are phased the way they are and are conducted in such a way as to look at different modes of treatment/dosing/length of treatment and why they monitor so many things.  We like to think that we are a clear box when it comes to medicine, but really, we are all black boxes that are treated based on probability, not certainty. That said, the infection MAY have been a contributing factor to his hemolysis. I am hoping that things stabilize.

I admire you and your husband's enduring fight and am wishing better days for the both of you. Joanne
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So sorry to hear about your stay in the hospital. Glad to know you are doing better.  I think these treatments are just so tough that after weeks of it, the body just breaks down (it seems to saying "I just can't take it anymore") and becomes more susceptible to dehyrdation, anemia, and infection.

HE is short for hepatic encephalopathy.  This link will give a explanation of what it is.   http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm
Unfortunately, my husband has cirrhosis of the new liver and now has portal hypertension and HE which are symptoms of advanced liver disease.  

I don't think the procrit itself was the problem causing the encephalopathy as I explained in a prior post above.  Its the raising of the hgb along with the
daily ribavirin.  One of the side effects of the ribavirin is hemolysis, which release more ammonia into the blood.  As his hgb got higher each week, his encephalopathy worsened.  It's a vicious cycle - worse encephalopathy means more lactulose and more Xifaxin (rifaximin) which means more bowel movements which means more dehydration which can cause more encephalopathy. I think as his body gets more fatigued, he becomes more susceptible to infection.  Infection also brings on encephalopathy.

So happy to hear you don't have much longer on treatment. My advice to you is when you are not feeling well, go into the hospital again for another  "tuneup". That's what I intend to do with my husband.

I wish you the best.  Keep us posted.

Nan
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Wow...reading all of this is a bit overwhelming.  I have had my sovaldi / riba since Wednesday and as much as I wanted it...I keep putting off popping that first pill.  Scared of a few pills...how silly.  At least there's no self shots.  

I have HCV, HE and ESLD.  Stge 4/decomped liver/high HCV viral load/ MELD of 13/on pre-transplant list/geno 1  

Previous trails and therapies induced a bit of anemia.  I am scheduled to take a blood test EVERY week...above what they normally require...to check for the anemia and watch my MELD.  I take Xifanan for HE. 500 mg x 2 a day... Every so often I do silly things like yesterday was filling up the sink to wash a few dishes and walked outside to walk my dog for about 10 minutes.  Needless to say I have a very clean floor.  I'll do things like open the frig and walk away and come back later.  I notice I can get distracted very easily...lose a sense of time/days/months...forget to eat...sleep is like upside down and minimal....but I still drive...go to the store and the doctor by myself...maintain my home and self.  I just have to focus more when I am home. I will not cook and sit down...now I will do the same for the dishes...LOL...They say with HE you can start to have unusual personality characteristics....

Was told that my HE would dissipate after my transplant and I wouldn't need to take the Xifanan. Maybe this is only if I clear the HCV prior to transplant. Hector probably could correct this if that info is wrong.  

Nan...your poor husband has had so much to go through but thank God he has you to help him through this.  I've stated before I envy those who have a mate to support them through this.  It's just like today...I need to go to the store...do I have the energy to do this...no...but will I...yes...because there is no other choice.  So having someone just there is the best gift you will ever give him.  Pat yourself on the back.....it's spouses like you that are awe too....we have read about and I have so many people email that they do not have a mate or if they do they are in denial so just the fact that your husband is so cared for is wonderful.  
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Hi Joanne
Thank you so much for your input. I am an educator by profession and don't have any medical training.  I am retired but still work a couple of days a week. I just can't sit and watch my husband go through so much and not have an understanding of what's causing it.  As you noted every person is different and with these new treatments, its impossible for doctors to have all the answers. It's just too soon. One of my strengths is that I pay attention to detail and I can do research online.  That has helped me to put two and two together since I am spending so much time with my husband, observing his symptoms, when they start, and what may have caused them.
   He is my hero - he has fought so hard for his life. His doctor  told him today that he has already beaten the odds several times over the last three years and that is because he has a strong will to live.
So we will continue to fight and we will beat this thing, whatever it takes!!

Thank you, Joanne.
Nan


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Thank you so much for your support and prayers. This is such a wonderful forum that brings us all together to support one another and provide a place to share information and experience. I am very grateful for that. I don't know how I would have handled everything we have gone through over the last three years had I not found this forum.

My husband is on both lactulose and Xifaxin daily since June, 2013 when he first had a really bad episode of HE (post transplant).  We found out then that it was being caused by a rare portosystemic shunt.  Doctors recommended he just remain on lactulose and Xifaxin and not attempt further surgery.

Nothing has come easy for him. I figure sooner or later he will finally get a break.  Thank you for your support.
Nan


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Thank you very much for your kind words. My husband is my first and only love. We have been together for over 40 years. He is a part of me and I of him. There is no way I could not do whatever I could to help him. I am just very grateful that I have the ability and time to do more than most in this situation. I know it has helped us both to get through everything he has been going through.

When I read your post, it really concerned me. Do you have a close family member or friend that can support you through this treatment?  Your description of your HE episodes are very reminiscent of what has happened with my husband pre-transplant and post-transplant, even before starting treatment.

I am concerned that my posts about my husband's experience are causing you to be more fearful of treatment.  My husband is in a special category.  He is post transplant, taking immunosuppressant drugs. He has bile duct blockages and recurrent aggressive Hep C, which have caused cirrhosis of the new liver.  Your case is very different. Yes, you have end stage liver disease, and you have episodes of HE, but your immune system is intact, still fighting this virus.

It is really important for you to try to get rid of this virus before transplant. The sooner you start, the better. Although he is having such a hard time with the episodes of HE, his labwork is definitely showing great improvement already after only 6 weeks of treatment.  I hope this info will be encouraging to you.

Hep C Viral Load  - Pre-Treatment
11/6/13     1,638,977
2/06/14        582,497
Hep C Viral Load After Starting Treatment  
2/27/14            250
3/13/14            <43    (detected - below level of quantification)

(Last labwork pre-treatment)      vs     (On treatment after 6 weeks)
Billirubin 2.2                                               Billirubin     1.2      
Creatanine 1.86                                         Creatanine 1.4
Alk Phos  439                                             Alk Phos     257
The response of the liver to any form of biliary tree obstruction is to synthesize more ALP. This shows his obstructions may be improving.
AST   61                                                       AST  35
ALT  (SGPT)  24                                           ALT (SGPT) 11
EGFR  43.93                                                EGFR          55.02

I hope you will be able to turn to someone close to help you through it. Sometimes  we don't want to bother others with our problems, but they are only just waiting for us to ask for help. I hope that is the case for you. If not, remember you have all of us here on the forum.

Big hug,
Nan





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Thank you Nan.  No you aren't scaring me and I value all of your information and that of some of the others.  I just have been dealing with trials and protocols for almost 25 years and I am not a pill taker by nature.  

As for my family and friends.  Get a lot of rah-rahs from the few friends who I have left who haven't passed on and as for my family...they say they will be there..."we'll be there for you Mom" but are thinking more about the transplant stage.  My one brother is in Minnesota and my other who is here is a reclusive alcoholic...if you need to go to an appointment he is johnny on the spot but I can go weeks and never hear from him.  My Mom thinks I'm making it all up...was asleep the other day and she said why do you keep sleeping...I told her...she said well life's a ***** maybe you just won't wake up one day..... Nice Mom ah?  My biggest supporter was her sister who just passed away.  

Think my biggest problem is everyone looks at me and I look healthy...and I have always been so strong....and have overcome so much in life that they just think I will do that with this too.  Have sat down with all of my kids and gone over this several times and my oldest son who had a phd listens and then will say you will beat this Mom.  So they have faith in my mental strength but at the same time get upset with me when I am physically too tired to do something's.  An oxymoron for sure.  Got a wake up call when I busted my knee 5 weeks ago on the ice.....am rethinking my "support team"  right now my best supporters are my 7 year old granddaughter and my son-in-law.

Have been straight with them...this disease has just been going on for so long that the urgency of it almost becomes insignificant if you know what I mean and I have been very, very good in not asking for help, physical or financial and created such successful independent individuals. All graduated from IU with honors...one with Masters and Phd inv Finance...the other is a vice president of major bank, and the 3 works for the railroad.  Their spouses all have similar positions and my older grandkids are at IU and Purdue.  So darn me for doing such a great job....LOL.  But really wouldn't want it to be any other way.  And I try to lead by example.  I had a high power job about 10 years ago I had to take a LOA to care for daughter and son-in-law who were sitting at a dead stop at a stop light and some kid careened through the light mowing them over and breaking all limbs, pelvis, ribs in both.  His mom is  a  nurse and she I worked together taking care of them.  Oddly my daughter responded better to her and my son-in-law to me.  Think that even though he is finance manager he is the one who checks on me because he remembers and he can see though the veil of health.

So I am worried too but I try to deal with it.  I am extremely asute except for periodic spaceiness but really I have been that way most of my life.  People has always been bewildered how I can have such a high IQ for which I've been tested t
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Hi Nan,

I read your link on HE, and my heart goes out to both you and your husband. I'm happy that you are rallying love and support on this forum, as I know it must be more than difficult.
Hang in there, and take care of yourself too.
His viral load is getting close to undetectable so if he can just hang in there through the treatment he can be well on the road to recovery, right?

Bless your hearts.

Ribavirin is brutal. Really it is. I think it must not only be destroying RBCs.

Thinking of you and praying for you both.
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Congratulations on the wonderful job you did on raising your family.
You wrote:
"Think my biggest problem is everyone looks at me and I look healthy...and I have always been so strong....and have overcome so much in life that they just think I will do that with this too."  I understand that completely.

These meds are tough which I know you already know. With your liver disease so advanced now, it can get serious fast. You need to have someone
check on you regularly - if your kids can't do it - how about getting a home health aide for the time you will be on treatment?  You need someone to make sure you are taking your meds how and when you need to.  Bouts of HE can interfere with that.  

I think you know all this already. Sometimes it just takes someone else who is been there  to make you realize you need to do something now. I hope so.

I think your son-in-law is someone you can count on - besides he owes you.  (big time!)   :-)  

Nan


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Thanks Nan,,,have been thinking about having someone do a call a day to make sure I'm still breathing.,,,course they or even an aide couldn't be with me 24/7.  Just like when I overflowed the sink I felt energized and fine.

So somehow we will figure it out....oddly enough I have a small service dog...a miniature poodle that I put through the training program a few years ago to get certified after I ran into a lady at the post office who had MS and had a full size poodle... The dogs were mirror images of each other, only difference in size and I started talking to her.   She gave me a number to call,,,I did..they told me they usually do not do that with such a small dog but would test him.  After testing they said they would put him through training. So he gets to wear his little certified service dog vest and can go in stores with me.  He is so smart...and all 13#s of him is fiercely protective of me. Never barks but if you get a foot too close to me he does a low rumbling growl and people turn thinking it is a pit bull.  People are shocked at what he can do...he gets all my clothes, shoes, my hats...etc.  If i say I am cold he will start pulling on a blanket until he gets it to me.  He won't let me out of the door if he senses something...even that day I overflowed the sink he was resisting going out but I ignored him. He wakes me if I sleep too long...he never leaves my side when I sleep.....if I'm ill he is attached himself to me.  When I broke my knee I had to stay flat and prop my knee up and he would wrap his legs, front and back around my left arm and nestle his face on my shoulder and not let go.   If I am driving he will not let me start the car if he has one of his feelings.  He starts kissing my face and positions himself in-between me and the steering wheel and won't even let me start the car.  He knows what to do if we are out and I would collapse.... He is a little blessing that was a throw away at 8oz who someone gave me to nurse back to health for adoption and I bonded with him so much even taking him to work with me and everywhere else that I don't even have to verbally say a command...he just looks at me and knows.  I am blessed to have him. Almost said no. Never really liked small dogs...last dog I had was a malamute/wolf so I wasn't real keen on this 8oz of fluff.  If I could only teach my kids to be a bit more like him or at least teach him how cook, drive and shop.  LOL.

Will be looking forward to future emails about your husband and thank you for your suggestions...they are taken to heart. and seriously....I know I sound like the class clown and I think that is because that was always me role to make people happy and laugh.  God bless you for your knowledge.  
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Your service dog sounds just wonderful. Happy to know you have him there with you.  
You wrote that your role has always been to make people happy and laugh.
I just want to say that just makes me absolutely certain there are others out there who will be willing to help you if you just ask.

Keep in touch.
Nan
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Praying for you and your family.   We all have our stories but one thing is for sure that prayers keeps me going.  I also have a husband, married 29 years, 2 children and 5 grandkids, he  has end stage liver, 1b and are the newest treatment, with a  meld scores are 14.  He has been on the treatment for 8 weeks and was undetected week 2.  He still have to worry about getting a new liver,  You've done a great job raising your family, now its time to take care of you, so stay strong and know you will overcome this.
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Hope you don't mind me jumping in here. The fact that he was undetected at Week 2 is terrific. Being free of the virus before transplant will make a huge difference after transplant.  The immunosuppressant drugs he will take  after transplant to prevent rejection unfortunately allows the recurrent Hep C to be very aggressive in attacking the new liver. It only took a year and a half for my husband to have cirrhosis again of the new liver.
The good news is if he should not achieve SVR before transplant at least there are more treatments in the pipeline that will be available to him after transplant. Wish they had been available to my husband sooner.

Nan
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Pooh had a good post about the difference between being UND and SVR...check out his posts....it was last week and he responded to me about a question on someone else's post.  It was clarifying too.  .  
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I am in week 3. I have geno Type #2, I am taking 400mg- Sol and 1200mg -Riba, per day. I have had no severe side effects except when I do not drink enough water. My goal is 1 gal per day and a couple of days ago I did not and I started having chills, headaches, and slight nausea. Drank a quart of water and behold they went away. So now if I think I've drank enough water, I drink more.
My pharmacist recommended the excess amount of water, it keeps the medicines in solution and the medicines don't settle in one area. Also eating lots of leafy greens decreases the chance of anemia.
My ALT readings after the first week dropped from pretreatment values of >245 to 61 and my week 2 values dropped to 27. All blood results are trending exactly where my doc and pharm want them to be and so do I. This stuff is amazing.

So I will keep drinking excessive water and eating my leafy greens and I recommend all do the same.

I wish the best to all and I am privledged to be able to share my treatment results with my fellow suffers of this virus.
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Thanks for sharing your experience on treatment.  So glad you are already getting good results. It is an amazing new drug, isn't it?!

Please keep coming back here as you continue treatment.
Wishing you continued success going forward.

Nan
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Gilead just released this press release showing Phase 3 Clinical trial result for Genotype 2 patients in Japan.  This sounds really promising for a successful outcome for you.

http://www.gilead.com/news/press-releases/2014/4/gilead-announces-results-from-phase-3-study-of-sofosbuvir-among-hepatitis-c-patients-in-japan

"In the study, 97 percent (n=148/153) of genotype 2 HCV-infected patients receiving 12 weeks of an all-oral regimen of sofosbuvir plus RBV achieved a sustained virologic response 12 weeks after completing therapy (SVR12). "

That sounds like wonderful odds for success to me.  :-)

Nan
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My husband is back in the hospital but that is for another thread and post.
Hopefully he will be out soon.

The reason for this particular post is to CELEBRATE! Doctor told us last night his 4/3/14 HCV RNA test came back UNDETECTED!!!!  Many of you have been reading my posts and know everything this man has been going through these last three and a half years as a direct result of this insidious monster. So to hear that his test came back "undetected" for the virus (despite his being on a lower dosage of the ribavirin)  is just  incredible.
His doctor had explained that because his kidneys do not function at full capacity, the ribavirin is not expelled as it normally would be, so although he is on a a lower dosage, its actually as if he were on a higher dosage.  Given this result, I don't need further proof!

His hgb is now at 9.5 without the procrit shot this week so they are holding it unless they determine he needs it.  I am praying -  no procrit - no HE episode!
Will he will finally get a break?

He has 16 more weeks on treatment to go.  God willing, the next 16 weeks will be a lot better than his last 8.  But it will all have been worth it, if he reaches SVR.  

Last thing - his liver biopsy showed cirrhosis caused by recurrent Hep C and bile duct blockages (result of hepatic artery blockage found one month post transplant). Eight weeks after starting this treatment his billirubin is now 1.2 (normal range). This shows his bile is getting through probably because of the reduced inflammation.  

This new medicine (Sovaldi)  is amazing! Its destroying the virus's ability to replicate, thereby  removing the agent that's causing the injury, and  allowing the body to heal itself as best it can. My husband's weekly labwork is proof of that.  

Nan

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What great news for you and your husband!  I wish you both continued success with this.
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Thank you, Mark.

I think this is wonderful news not just for my husband and I. I think it is terrific news for anyone who is struggling all these years with fibrosis/cirrhosis as a result of Hep C just waiting for something to help them.

All of you, take heart, if it can help my husband, it can certainly help all of you!
Get on a Sovaldi treatment asap!

Will he reach SVR? Will he be cured?  I don't know but in the meantime, his body is getting a very much needed break from this virus and it will give him time to get to another treatment if need be that will cure him.

Am I excited? You bet I am!
Nan
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I am so glad to hear that you and your husband are hearing some good news. I know I and so many here are rooting for you both! Joanne.
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This is just fantastic. I know you both must be really happy. Hopefully for whatever the reason he's in the hospital will be resolved and he is able to finish treatment. A HGB at 9.5 with a low dose of Riba should stay stable. Finally maybe the break you both deserve is going to happen. Hang in there.
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Thank you both for your kind and supportive words. It means so much.
My husband is very cautious in accepting good news. Who the heck can blame him?  I have been watching his labwork improve week after week and that's what gave me hope despite the very difficult HE episodes. He needs to be able to finally "feel" that things are improving. God willing, he will get this break from HE and know that things are getting better.

Thank you all again for your support through this. You have no idea how much it has helped me.

Nan
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I am so glad to hear the good news about your husband and hope the other issues will be resolved soon.  You are a blessing to him and many others. Your positive attitude and information and love for your husband has been inspiring to many.  Give him a collective hug from all of us.
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That is very encouraging news.  Hope he gets out of the hospital soon, hgb continues to rise and undetected becomes permanent.  
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Oh Nan!!!! This is great news, undetectable!!!! Continuing to send prayers and positive healing energy. Please take care of the caretaker. :)
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Nan, know that both you and your husband, remain in my prayers.
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Oh Nan.     Bravo (big clap).      Such wonderful news.   It's about time you and your husband get hopefully permanent break from this horrible beast. Really makes sense how the kidney is processing the med even tho it is a reduced rate.    Haven't really wanted to scream it from the rooftop because so many are still suffering thru treatment and waiting for such, but finished meds Mon. and can't believe how much better I feel.    Sovaldi is truly a wonder drug and if it sticks so many lives will be changed.   Always have trusted my intuition as it has always been my guide and def feel we will see the end of this virus.    I hope you will take care of yourself as it sounds as tho you and your husband have a bright future to look forward to.          ..Kim
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Hi..I'm new to this forum.........I am so happy to hear ur good news Nan that is wonderful I'm sure it's been along time coming! I am in my third wk of Sovaldi/Ribivirin with 21 to go. I have been told by my gastro that by wk 3 all of his patients have been UNDETECTABLE... I don't know what there GT is however. I am GT1a the hardest to treat of the gt1's. I went into this tx positive and knew it would be nothing like the dreaded interferon tx I was on. I only lasted 5 wks due to multiple hospital stays and transfusions due to anemia and low lytes.  Sovaldi has been great so far and I'm hoping the absence of most of the side effects will stay just as they are.  I do however have some more apparent deep hip bone pain as the weeks progress. I have had my HCV for approx 30 yrs and I am a 59 yo female. I would like to update my progress and if any of you have any advice foe me I would be grateful as I'm finding I don't really care about eating these days. I know that it's not good with the Rib and low anemia count and all.  I go for my first set of labs on the 20th of Aug and I'm hoping for good news...I'm keeping the faith! Thank you for letting me post....take care everyone
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Thank you "resurrecting" this thread as reading it over again, it gave me an opportunity to see just how difficult his initial weeks were on treatment.  As it turned out his hepatic encephalopathy episodes improved greatly once the procrit shots, Xifaxin and a multivitamin he was taking daily were stopped.  Along with all his other meds,  it was just too much for his poor new liver to handle creating toxins daily  that went to his brain.
     He made it through the 24 weeks of treatment 2 weeks ago and we are now waiting to see it he reaches SVR. His labwork shows great improvement and God willing that will continue.
     My husband lost about 20 lbs on treatment because he too lost his appetite.  Since ending treatment most days his appetite is good though he still has some days when he has no appetite coupled with mild HE. It's going to take a while before these meds finally clear his system.
    My advice is to drink lots of water while on treatment. Your last experience sounds an awful lot like my husband's experience with the triple treatment with Incivik. He lasted only 5 weeks.  
     How advanced is your liver disease? Do you have cirrhosis? If so, any signs of decompensation?  Hopefully not, as that will probably make this treatment a little harder on you.
    This is a wonderful forum where you will get great support. Keep coming back. We all care about you and will be there for you if you need us.  I know I never would have made it through these 24 weeks without the support I got here.
Big hug,

Nan
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Hi. I found this while trying to research the new Rx for my father. I know little about his first Rx years ago as he did not tell me much and I live everywhere but near him (military life). I know he and my cousin referrer to it as a type of Chemo. My father went from 205 to 116, he's 5'9". Lost his hair and his teeth and got cataracts from Rx.  It was an injection in the belly and thighs thing and it was over-nighted to him to administer himself. He went into a type of remission for 3 1/2 - 4 years. His doctors have been trying to get him to do another Rx for awhile now. He has agreed to the Solvaldi + Ribivirin starting next month (Sept).
With me so far away, again, and that he is not keeping me in the dark this time (prayerfully)... I'm looking for some insight to be mindful of when I speak with him and questions to ask him. He just turned 61 this month and all I know is he has chronic Hep C (diagnosed 16-17 years ago), was chronic at that point too.
Thank you in advance for help.  
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Thx for your feedback. I have stage 3-4 fibrosis w/compensated liver, VL 11 mil, GT1a. Today I went in for my SOT labs, plus TSH test.  I was told by my Gastro that all of his patient that have been treating with the Sovaldi/RIBA  have been UND @ wk 3 so I am very hopeful and a bit nervous. I will come back and share my experiences w/HCV.  At wk 3 I'm short of breath, have very little energy left and have a some of that "RIBA rage". Everything irritates me and all I want to do is sleep. I wish you & your husband has continued good health.
Big Hugs back
Debbie
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    You will be undetected soon. My husband was undetected at week 6 and remained UND for the remaining 18 weeks of treatment. He will have his first post treatment HCV RNA test next Thursday (4 weeks post EOT). We are praying he will still be UND but if he is going to relapse I think it's better to know that sooner rather than later.  I can imagine how difficult it is to first find out at 12 weeks post treatment that you have relapsed (as has happened to a couple of members of this community).
    The most important thing for everyone to remember is that it is just a matter of time before everyone here will be cured.  The new treatments in the pipeline have some excellent cure rates.  So whatever happens right now, know that you will be cured in the near future. So, hang in there.
   My husband also definitely experienced some "RIBA rage".  I had to keep reminding myself that it was the meds and it would not be forever. Now that he is three weeks post treatment I am definitely seeing an improvement in his temperament. The encephalopathy he had experienced so much throughout treatment is also greatly improved.  
    You've got a long way to go yet so just take one week at a time . I wish you the best possible outcome.

Nan
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