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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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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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10175413 tn?1427173851
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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10175413 tn?1427173851
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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Nan:  Thank you for your post.  If I understand your post correctly, relapsing after being undetected on Sovaldi treatment, does happen?  We've been trying to get our doctor to discuss this subject, but he's not really wanting to do that.....probably wanting to "keep us in the positive mode" .... rather than giving us cause to worry.  My husband has one more month left of a six month regime of Sovaldi and Ribavarin.  He became undected after three months. Obviously, the next three months after the end of treatment are going to be rough on us.  The wait to see if he relapses is always difficult.  He has been on two previous rounds of treatment with the different types of interferon and ribavarin.  One session....did not clear at all.  Second session, cleared the virus, but relapsed.  He's type Genotype 3a which is a difficult one to clear.  We're hoping for the best with the Sovaldi/RIBA.  So tired of this battle.  Six months is a long time fighting not only the virus, but the side effects of the treatment drugs.  Lots and lots of prayer to get through it.  :)  Thank you Nan for managing this community site....giving us all a place to share our stories. On a positive note......he's had this virus more than likely since he was 18 years old (bad habits of the hippie days).....and he's 65 now and is in excellent health.  Good clean living since he was 28 (thank you Jesus) made all the difference in the world.  :)  
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Just found this site & read your post. Started therapy 4 weeks ago for HepC (Ribasphere & Sovaldi) geno type 3a. Unfortunately Dr I had so bad & dismissing of any complaints of side effects even the one where my meds say call your Dr immediately. Found new Dr, but do not see until 12/4/2014.
Does anyone know someone that has completed therapy & has been clear for 6 months after?

Since one of my side effects is feeling tired & depressed a
lot it is hard to keep my spirits up. Hanging in there though.
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Well. I hope I can get some answers and support. My husband started Sovaldi and a lower dose of Ribarvrin 2 1/2 weeks ago. He is in end stage liver disease, has had Hep C for over 50 years, finally progressed to cirrisis and ascites. Has been getting the fluid drained off his abdomen every 2 weeks for the past 10 weeks. His hemoglobin is already low so we are watching his numbers each week. If his hemoglobin drps below 10 he will have a blood transfusion. He is now on 400 mg of ribarvirin. My big question and concern is his exhaustion and extreme weakness. Is this a side effect of the treatment??  He has no appetite and I am so very worried that the side effects will do him in. He has lost a lot of weight and lean muscle.
We are hopeful that treatment will stop the progression and stop the ascites. Anyone else have any experience with the weakness and cirrosis improving??  Thank you all and good luck to each of you on your journey. Best. Bonnie.
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6708370 tn?1471493810
I just want to point out that this thread started with a post nearly a year ago. Since so much has happened this last year for Hep C treatment and to the original poster in this case, I usually screen the posts that are older

I have been told that when people are just surfing for answers to their questions, they may be led to a post that is quite dated

and that starts a cycle of new answers that can really confuse if you are not  noting the time and date of the post

wish there was a way of archiving them but I don't think so
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I have been on 1000mg ribovirin and Salvaldi Q day. I lready have severe anemia. Idw to quite my med. I want to be cured of Hep C... I am now trying to research if extra iron will help this type of anemia or not
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Ribavirin on its own causes hemolytic anemia. I was on the same therapy, without interferon, and my hemoglobin dropped from 15.5 to 12.0.

I doubt that addition of iron will be helpful in this case, because the underlying cause is not due to insufficient red blood cell production (which could be the case with low iron level),  but due to ribavirin destroying the red blood cells. This releases plenty of heme (=form of iron) into the bloodstream, which then kidneys have to filter out, causing urine turn dark. This is what happened to me during the second week of treatment.

from Medscape: http://www.medscape.com/viewarticle/491738_4

"The mechanism of ribavirin-induced hemolytic anemia has not been clearly established. Lau et al. explain that ribavirin, following uptake into cells, is phosphorylated and converts to ribavirin triphosphates, which then must be dephosphorylated for elimination from cells.[14] However, because red blood cells lack dephosphorylation enzymes, ribavirin accumulates in cells and destroys the cells, causing hemolytic anemia."
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13008797 tn?1428166427
I have 1 week and 2 days left out of a 12 week treatment.  I have tested twice un detected   I'm very pleased   After my 3 Rd week treatment my numbers dropped very low and caused severe anemia.  We cut back 1 ribavirin pill at night time and my labs went up a little.  I am still anemic but treatment was success.  When my regimens is complete dr says labs will go back to normal.    Best of luck with your treatment.  Stick it out and don't miss any doses.   Thoughts n prayers for all sick n suffering.  
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I completed 24 weeks of sovaldi and ribivarin in Nov.2015 and have been un-detected since. the ribivarin caused severe anemia but to be fair I was taking 1200mg a day..my Dr. cut dosage by a third for the last month or so but , the main thing is getting rid of the hep-c. I hope and Pray that one day soon we will see an end to this disease..so please everyone hang in there , keep your spirits up ( i know its hard ) dont miss any doses...and if you are like me PRAY there is power in Prayer...God Bless you all !!
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