Hep C Discussion Forum

hello again, im confused as to how to reply to questions here. ( Forgive my naivete , I'm a newbie to technology. )  Thank u for your patience.

Hello, I am so unfamiliar with your website. I just want to encourage people that may be in my situation that there IS help out there!

Hi Mary,

Mike is still here! He retreated successfully with 24 weeks of Harvoni after failing treatment the first time around. He had an accident and there were some problems during that previous treatment that compromised his regimen. 

I'm responding to his post because he has been involved in some ongoing care and may not see your question in a timely manner. As soon as he checks in, he will be able to add to my comments.

I sent you the instructions on adding your signature and the abbreviations. Many of us have listed our treatment history in our signature lines.

Mary,

Mike was referring to the last 3 weeks of his treatment on Sovaldi and Ribavirin. He meant 24 weeks, not months. I remember that he had a hard time with side effects throughout treatment, but a particularly rough time during the last 3 weeks. He failed due to complications.

I'll let him describe the road he traveled during that period. He had some difficult things to overcome. He's a Warrior and a Survivor in every sense...

Also, before I got any treatment , I was told that I would have to pay thousands of dollars for the meds. Thankfully, Integrated Health Systems went to bat for me & " suddendly" my insurance company agreed to pay for it. My monthly cost was $ 15.00!!! 

wmlj1960 wrote:

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 Welcome to the forum evange. Me too, glad to "get it (Sovaldi / Ribavirin) over with". I did 24 months of it in 2014 and the last 3 were not pretty. How long were you on it, when, and did you acheive SVR?

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 24 months in 2014? Boy, that was a long year, lol! 

 I just now saw your info in the chatbox. Are you scheduled for a follow-up viral load test dated at 12 weeks after you finished treatment?

Hello, when I 1st started taking Ribovirin & Sovaldi, my head was really itchy!!!  When I went to bed,  my back was itchy.  Thankfully these symptoms subsided after a couple of weeks.  While I was under the meds I felt like I would always feel this way but then ,  the side effects went away.  I'm soo grateful that I got this over with!

I remember the fatigue well, Michele. That's probably the Ribavirin causing it. It's a great drug, but they didn't frost it with goodness either! It's very effective though and without it, Sovaldi wouldn't work. Together they will put your Dragon to sleep for good. Just stick to it and it'll be over before you know it.

Sleep when you can, I survived on naps because I couldn't sleep for extended periods. I was fortunate that I didn't have to work through treatment, so taking naps turned out to be a great way to make it through the day! Take it easy and I hope you get a good nights sleep tonight. 

(Gotta love that auto correct, lol)

Hi Michele,

Glad to hear that you are working with your GP in finding the right antidepressants, they should help you tolerate treatment well and let you concentrate on getting rid of the virus, taking good care of yourself (Drinking LOTS of Water and getting good nutrition and a little exercise as you feel up to it) and healing.

"1. Why do some gi doctors tell you that this treatment is equivalent to chemo therapy??"

I've never heard any doctor refer to Hepatitis C treatment as "chemo". Some doctors may consider old treatment regimens such as Interferon as being a form of chemo, I don't know but these newer DAA medications are quite unlike "Chemo" like the medications used to treat cancer. I wondered the same thing early on in treatment but I think the term "chemo" is a subjective one. I'll go out on a limb here, others please correct me if I'm wrong, but I don't think the term chemo applies at all to today's Hep C treatments.

2. If viral load is undetectable for some at 4 weeks why 8 more weeks of treatment??? Is it just sovaldi protocol???

Treatment protocols are based on drug manufacturer trials and data. They have found these guidelines to be the most effective at ridding the system of the virus. At 4 weeks it's likely most of the virus is actually gone. Tests can only detect down to a specified count of the virus (i.e. the tests are accurate to a specific degree, e.g. <15 IU/mL). Even a very small amount of the virus left can replicate so even after the virus is Undetected at wk 4 it may be possible that it is not complete eradicated. Therefore the continued treatment to be ensure that the virus is completely gone. This is also why you are officially cured 12 wks after treatment. After 12 wks, enough time has passed that it can be assumed that the virus will not ever replicate.

When it comes to Dragon fighting, the more that you can be absolutely sure it will not replicate, the better. Insurance companies usualy are the restriction to longer treatments (treatment is extremely expensive), so you can be sure that if it were as simple as the virus being Undetected at 4 weeks, they jump on the chance to stop treatment then ... but they do NOT because they have read and know the drug manufactures studies and recommendations.

So the answer is a combination of things, drug manufacturer's recommendations based on trials, doctors recommendations, and what the insurance companies will pay for ... not really a simple question to answer, I'm afraid.

Dave

Thanks Tig!   With today's cure rates we're going have to add some new cars to the train.  I can see it from here.

Gosh.  I guess nobody wants to dance with me.  LOL

Didn't mean to hijack your topic, Michele.  I'm so glad you are taking the steps you need and extra glad you didn't give up.  Keep up the good work!

Hey Michele! 

That's okay with me. Nobody has called me Tiger in decades, lol! Grrrrrrrrrowl   

(Okay, back to plain ol Tig now!)

Nice to hear the good news from Michele and K8! It does get better, sometimes quickly sometimes slowly. 

Thanks, Dave.  

Yes, I'm really excited already.  My hep specialist suggested I plan a celebration to look forward to, so I booked a long awaited raft trip down the Colorado River in the Grand Canyon.  I travel a few days after that EOT12 blood test whether I have the results back or not.  I've had a long desire to make the canyon trip and my husband and I earned the reward.  It has also inspired and necessitated an increase in fitness and I've been feeling good enough to enjoy doing it.  I'm back to walking, some hiking, some biking and riding my horse consistently.  

Who would have believed that the Sovaldi-Riba side effects would dissipate that quickly.  They were really taxing and I wasn't confident that I would ever be the same.  I still take it easy whenever I need to, and have that option when I travel, too.

I'm posting this, in part, to share my excitement but mostly to encourage others.  I know I'm lucky that HCV hadn't done more damage.  I'm sure that helps with recovery.  But then, maybe it's a matter of diet,water intake and all those spinach smoothies.  It sure wasn't my rotten attitude when I was taking riba.  I needed ADs to give that the boot.,

Yep, this is premature.  I may not even reach SVR12 yet, but it feels unlikely so I'm going to live it up anyway!  I guess this is better than feeling terribly anxious awaiting the Big12.

Please join me in a forum wide happy dance.  

Cheddy

Congrats KB, it takes 6 months for Riba to leave the body, so keep taking care of yourself, and have a good cry, with relief I hope. I am so happy you have finished, riba is a naughty but needed drug. I look forward to hearing about your recovery and that you're finally cured! :D 

K8.  I think you rocked it. 

So glad we can help each other.  I'm not sure what I would have done without the empathy and experience that I found here.  I'm pretty cautious about internet info, but I found many helpful prescriptions here.

I had the same treatment which was so much easier than I hear about the old stuff, but I felt pretty bad sometimes, but, no longer (I did need a low dose of antidepressants to break the cycle of depression).  For me, this has been worth it.  Wish me luck for SVR mid August.  I'm feeling confident.

Thanks to all who are kind enough to reach out.

Hi Michele,

Tonite is my last 2 pills of the Solvadi- Riba train after 3 month treatment.

I know how you are feeling, most of us do and I just wanted to cry with gratitude when I read the posts for you.  And the way the folks here support me and all of us.

The forum has saved me many times, just knowing others understand and have been on this wild journey.  

The first week was good but then the weariness kicked in and the brain fog. A dash of dizziness sometimes and a inertia combined with an unquenchable thirst and equal hunger for meat!  Mornings were definitely the best time when I woke up and felt almost normal.

I am sorry you are having a tough time right now, it does ebb and flow. I became obsessive about taking this medicine and would cry every night when I needed to take the nightly dose. 

The crying stopped after 6 weeks and the anxiety lessened a bit.  I had great anxiety about starting this journey again ( I did the interferon & Riba 7 years ago, definitely don't think I would have made that one with out an anti depressant).  
The forum helped a lot by folks reminding me of how powerful the medications are and to remember the side effects will not last forever.
I tried to eat healthy but sometimes, chips and salsa plus brisket was all I wanted. ( I live in TX)
As time went on, the doc lowered the Riba, the exhaustion lifted but the impatience and sometimes " Riba rage" was so upsetting.

Keep on, the water helps immensely, the forum suggested good green shakes (which I would drink in the morning but then food intake went downhill,  I gained a few lbs and I have sat on my couch for hours without moving. ( had no choice as I just couldn't seem to move).  I did limit my activities, surrounded myself with positive books that I couldn't  seem to read. Facebook was about the only thing I could have an interest in and I was mean to my sweet kitty and sweet dog. Which caused more crying.  hmmm, nothing about this sounds pretty, except you can do it and it will be worth it.

 My last two blood test show undetectable and as I write this note of hopefully, encouragement, I can't believe the 3 months are over. It got very dark at times, I had to remind myself that this is due to the meds and it is not going to be like this forever.

Days where I thought I couldn't take one more pill.  I would take the pills with prayers for people who will never know medicine like this, please do whatever you need to do to get through the treatment, I take something to sleep  and wish I didn't but it is what it is right now.

We are with you on this crazy journey. And with no judgement, what a gift that was to me and I hope to you.
Blessings

K

Tig56 wrote:

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 I had the displeasure of Interferon, too. That stuff was depression in injectable form.

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 So true, Tig.

Michelle - glad to hear you are a bit better.

That's fantastic Michele! What an excellent decision and I know you'll feel so much better without the added stress of work. We have had other members that did the same thing and they noticed immediate relief. 

There are so many AD options available, your doctor will be the best source of advice on what's going to provide the best help for you. When I was started on treatment, I was prescribed Wellbutrin. It's an easy one to start and stop when the time to do so comes around. The first time I treated back in 1996, I was prescribed Zoloft and it worked well too. There are so many, my advice is to trust your doctor and let them know how well they work. They can adjust or change the medication according to the relief you gain from them. The important thing is to be part of your health care, not just the recipient of it. When you help make the choices, you'll feel better about those choices. Good luck tomorrow!

Hi Michele,

I'm glad to hear things are a bit calmer today. Keep seeking those same methods of dealing with these feelings when they come along. For me, Ribavirin caused several issues, skin troubles, moodiness, anemia and a dry cough. Some people develop a nagging cough from it. If your throat is dry, some of the sugarless lozenges will help. They did for me.

I am another one in our group that required anti depressants during treatment. I had the displeasure of Interferon, too. That stuff was depression in injectable form. As everyone has recommended, talk to your docs and they may have an idea that will make a difference. Do everything you can to get through the next 11 weeks. Once done, this will be one for the history books. One day at a time, and avoid the things that can set off those unwanred emotions. 

These drugs are powerful antivirals, but they affect your immune system too. I had episodes of cold sores, which are the herpes virus. Had them as a kid but they went away as an adult, but treatment brought them back a few times. Once treatment was finished and things returned to normal, those sorts of things went away too. That's something you can ask your doc about. They make a topical cream, Zovirax and others that will help greatly for those periodic outbreaks. Ask if you can use that while on treatment, it may be the ticket.