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7469840 tn?1409845836

Week 1 done, 11 to go on triple Tx

So far so good on Sovaldi, Pegusus and Copegus. Get my first cbc in another week, and a viral load count at 1 month. Are there any obvious signs of anemia?
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Avatar universal
That is a wonderful gift and i pray you will clear the virus. In Canada, they don't give you Procrit or anything for low hgb. They told me to eat greens, red meat etc. I had 4 transfusions in 6 months and i believe i will have one more and then hopefully with the riba finished, my levels will rise on their own. They did reduce my riba dose in half and was only taking 600 ( 3 pills ) a day. I am still undetected so that didn't affect the outcome. I also take Fera Max iron daily. I questioned the doctor on this as i thought it was bad for liver, but he assured me i needed to take it. Hasnt worked. HGB was 14.5 when i started tx and i get transfusions below 8. It was down to 6.3 at one time. The transfusions only bring it up to 9 each time and then its transfusion time after about 5 weeks. But now that i am so close to finishing, i guess it will all be worth it. The cure is worse than the disease but the new drugs will hopefully be better on the body for the next group of folks trying to kill this virus.
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Avatar universal
Great news Sue.    It is so exciting when you hear those words UND.   This is amazing treatment, and get more excited everyday how people are overcoming this life altering disease.  Wish you continued success, and please know that "The journey is worth the ride".    Keep on riding the wave!
...Kim
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Avatar universal
Wooooo-HOOOOO...YAhooooo,  I am so happy for you!  You go girl!  Sue-sister!  LOL   Susan400
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Avatar universal
So sorry to hear about your Mom's passing. May you find comfort in the day and months ahead that she is at peace.

Glad to know your hubby is still undetected. That is wonderful news and a blessing at this particular time.

You are both in my thoughts and prayers.
xo
Nan
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Avatar universal
Faithdove, I'm so sorry for your loss.  I cannot imagine the pain.  Hope and good thoughts for you and yours.  

Susan400, we share the same issue with the Neutrophils!  Mine dropped to 2.6 about week 3, but at the end of week 6 were 3.0.  Hopefully yours will stabilize!  I understand the desire not to have to take other meds or cut any Ribavirin!  Been there and did that with the Victrelis combo.  

I do want to share... I saw the doc yesterday and the first words he said was "your liver function labs are better than they've been for years!  Basically no inflammation!"  And for the first time ever....  UNDETECTED in my 4 week on treatment labs.  I think it was the best moment of my life.  I have been floating since then!  Of course, I understand it ain't over till 6 months UD post treatment, but man,  I'm loving this feeling!  

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Avatar universal
So sorry about your mom.  I know that's very difficult to go through. I just lost my wonderful Dad, back in Oct. 2013.  It was cancer.  You are in my thoughts.
(((((hugs)))))
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Avatar universal
I just started my 3rd week on Wed.   My start date was on Jun 18th  So far, on my first two blood works, my platelets and hemoglobin and red blood cells are fine.  However, on my blood test on this past Wed., my neutrophils (white blood cells) had fallen into the abnormal low range.  CMA told me that for now, we are going to wait and see what my labs show on this next Wed.  Right now I'm at 2.3, but if it falls below 1, then he's going to speak to the doctor about getting me some Neupogen.  I don't want to dose reduce anything until I get my 4 wk (UNDETECTED) viral load!!    If my Neut. are stable and haven't dropped anymore, than we will do nothing for now.
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Avatar universal
Thank you for your kind words, they really help. (((((((((Hugs))))))))))
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Avatar universal
I am so very sorry Faithdove for the loss of your mom.  Words can never express the sadness when someone we love passes.  Just know that she is with you and your husband,  cheering you both on.  Am grateful that he is still  UND, and hope that as the weeks go by he remains virus free.  Please know that we all started this journey together, and will continue to be there waiting for SVR/12.   Take care, and I do hope for brighter days to come.        ...Kim
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7469840 tn?1409845836
I am so sorry to hear about your mother, am so glad you could be with her at the end. I was with my mom at the end and it was a profound experience. Hope your husband continues to recover. Have found the 6 weeks after treatment was hard emotionally. Am doing better now. Have started walking at the zoo several mornings a week again to get some exercise, fresh air, and to lift my spirits. You have had a rough year so far. You will be in my thoughts and prayers.
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Avatar universal
Hi ladies, I had a rough few weeks, my mom passed away, so I was going back and forth to spend time with her out of state. I was fortunate to be with her and spend some precious moments with her up until the end. I was with her as she passed and now I know she is finally at peace. At only 76, She had CHF and End stage renal failure, she suffered so much, it was unbearable to watch. I did whatever I could to comfort her. So I am still in that surreal place and being that my mom, was my best friend, I surely need time. As for my hubby, the good news is he is getting energy back. Since he was still recovering from his accident, this treatment really hit him hard. So his EOT was undetectable. He goes back in August for the 12 week.....so keep on moving forward. Sending hugs to you all. Please keep in touch!!!!!!
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7469840 tn?1409845836
4 week EOT report:

Hi! Still UND! Yay! My doc says SVR4!

WBC: 5.7 (1000/uL)
HGB: 12.5 (g/dL)
Platelets: 199 (111/uL)
ALT: 10 (L) (17-63) U/L
AST: 19 (<40) U/L!

I feel fine! What a relief! Thank you for your continued support! I love you all and you are in my thoughts and prayers!—Sandi

Will get an additional viral load test in at end of July for my 12 test. Will let you know the results. My doc said with the UND at 4 weeks, it is a good indicator that I am cured. The 12 and 24 week tests will just reconfirm it!
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Avatar universal
Just saw this post. Thank you for your kind wishes. How is your husband doing post treatment?

My husband is now in week 16/24. The HE is  very much improved but unfortunately not gone so it's still a struggle. I do believe it's all connected - the sovaldi - phlegm - HE.  The procrit and Xifaxin were exacerbating these symptoms. I don't know if this is unique to my husband given his particular circumstances. Now that it's improved I do think he will be able to make it to the finish line (8 more weeks).

Please let me know how your husband is doing.

All the best to you both.
Nan
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Avatar universal
Hi Nan!!! Yes, the last 2 weeks flew bye while the weeks prior seemed to drag. No, the cough is nonproductive and it does not sound like a normal cough. It happens in the morning after he eats and is about to get in shower. Very strange. I too feel it is the Sovaldi. He was taking the Sovaldi at 6 pm. I am so glad it is over. I was getting up at 4:30 am to make sure he had breakfast with his 6 am pills and would prepare lunch for him to take to work!
He had and still has a low HMG but this weeks bloodwork, showed a 1 Point jump up. He started at 17, so to go all they way down to 10, was steep. He is now at 12. One thing is that his ALT went up the last week of treatment and this week is still at 54. I know that is not high for most, but I am wondering why and when he will get to the normal range. Will keep watching that along with his HMG and platelets.

I am so glad to hear your husband is no longer experiencing the HE and that was due to your detective work!!! We can provide this information directly to the FDA, did you know that??  These, if enough are recorded, will have to be added to the Sovaldi labeling as post-marketing adverse events. Here is the URL: https://www.accessdata.fda.gov/scripts/medwatch/

Sending you and your husband well wishes...until we all meet at SVR!!!
Faith
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Avatar universal
Hi Faithdove
Congratulations to your husband on completing treatment.  How fast did that go!  Hopefully soon he will hear he has reached SVR and this will be a bad memory...

"That cough has to be associated with the Sovaldi, in my opinion, while the fatigue is a Ribavirin adverse reaction."

My husband has been coughing up phelgm since starting treatment. When he was on procrit and xifaxin the phlegm was much worse and he was getting HE continually.  Now that he is off the procrit and Xifaxin, the cough persists with much less of the phlegm.  It seems to accumulate over days.

Is your husband's cough associated with a clear phlegm that he coughs up?

Nan
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Avatar universal
Hi! Glad you finally got that rash under control and that the retinal scan was ok!!  I kept checking my husband for any signs of rash and would not let him get any sun exposure. It is now one week post EOT, he is still feeling fatigue and that pesky cough. His doc wants me to monitor so he can keep track of when the adverse reactions are gone. His doc has been great and since this is all new to him with the new treatment added for Sovaldi, he is really interested in seeing how things go, plus my husband was his first patient to get this treatment. That cough has to be associated with the Sovaldi, in my opinion, while the fatigue is a Ribavirin adverse reaction. Onward we proceed...hugs....keep in touch!!

Dear Kim,
Glad you are feeling better, it gives me hope.
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Avatar universal
Knew you would get there Sandi,  just takes some time.    Glad it's over for you, and know you couldn't celebrate EOT.    Yahoo and time to start.    Now waiting patiently for us all to join the "Winners Circle".    SVR12.    ..Kim
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7469840 tn?1409845836
Just had a post EOT Ophthamology appointment, and all seemed ok. They did a retinal scan before allowing me to do the Tx with Sovladi. He wants to see me 6 month post EOT also. I had no eye issues during Tx, though I know it is a concern. Feeling blessed.

Rash has totally gone away after only 2 days with new ointment. Skin finally seems to be healing. It was amazing how it just didn't want to heal the whole time on Tx.Feeling better with cough going away too.
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7469840 tn?1409845836
I am so happy for you and your hubby, he has had a really tough time with the Tx. You have been a great advocate for him. Yes have to keep drinking the water. You'll be happy to know the appetite returns fairly quickly. The cream I got worked wonders, rash is really subsiding quickly. PCM thought I probably have a virus, but with my compromised immune system they put me on antibiotics so I don't get a bacterial infection. Probably from the crazy weather and fires, smoke in San Diego. Carrying around printouts of EOT CBC and PCR tests to show these docs, as it is all new to them. Make sure you gwt printouts of EOT tests. Have to tell them the whole tale. Everyone is so happy for me though.
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Avatar universal
Hi Sandy. Thinking about you and knowing you will get relief soon. My husband is done with treatment, last pill was on Friday. He has a cough and still very fatigued. His Bloodwork numbers need to get better for the anemia symptoms to subside. He goes in today for EOT RNA PCR and another Chem Screen....hang in...we are in it together. Keep drinking that water to help flush the meds out!!
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7469840 tn?1409845836
Thanks Kim. It is hard when I thought that it was 12 weeks, and I really did know it was going to go beyond. I can't imagine this for 48 weeks. I just am impatient to feel better. But really did set aside this year for this whole thing. So just still engaged in the process. Thanks for your support. Sandi
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Avatar universal
Hi Sandy.    Happy that you hopefully will get some relief.   Your immune system is trying to find its way back, but the little things keep knocking it down.   You've def seen the worst of it so far, I hope.   Still feeling stronger everyday and you will too once your body is no longer having to be in the attack mode.   Your still going strong........Bravo.           Kim
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7469840 tn?1409845836
Finally broke down and went to dermatology and got a medium strength steroid cream to help with the rash on my chest, it is so red and itchy. My immune system seems to have taken a dive, have a cough too, going in to see my PCM tomorrow for that. Wish these minor issues would go away so I can feel better.
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7469840 tn?1409845836
Hi Kim!

I did see your comment—congratulations on still being UND!

I am 7 days post EOT. Just got back from my EOT meeting with my doctor today—and I am also UND!

The HCV RNA QN test using COBAS® TagMan® HCV, v.2.0 (limit of detection (LOD) and LLOQ is 15 IU/mL) HCV Not Detected.

ALT is 41, AST is 50.

HGB 10.3 / Platelets 139 / WBC 2.4

I went walking at the zoo for the first time in 12 weeks today, and wasn't exhausted at the end. My mental energy is improving all the time, physical energy is improving slowly, really just the last 2 days. Appetite is returning too.

My skin is really giving me a lot of problems this week it seems hyper sensitive. Like it really hasn't healed at all in 3 months. But that should subside as the drugs exit my body, and my blood levels even out. Will go to dermatology if it drives me crazy. Have a follow-up with opthamology later this month too. Will have a 1, 3 and 6 month follow up blood and viral load tests. My doctor will be retiring in 2 months, but will turn me over to a new doc, whom I will meet, next month for follow-up consults, and for yearly monitoring.

You and I and our fellow slayers out there need to now help out livers recover and repair themselves.

Yes hopefully our med days will be over soon, too easy to get obsessive on this website. But I do want to let people know that the treatment really wasn't that bad, (though it was interesting that my doctor was surprised when my husband and I were telling him that each and every time I got the Interferon shot, it would just knock me out for a day or two, not just the first time or two, but every shot).

He said that the Navy was now starting off-label with Sovaldi and Simeprevir for the more seriously ill patients. I thanked both him and his nurse for believing in me that I could do this.

Thank you Kim and all the other dragon slayers on this we bite for you support.
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Avatar universal
Hi there fellow trooper.     Don't  know if you read my other post but 4 weeks since treatment and still UND!      Hope your energy is getting better as we get further away.     Feels soooooo good not to be sick and tired all the time.    Still have the dreaded early cirrhosis but my liver has hope.  You are a survivor and if we're lucky,  may our med days be over.          Kim
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