Hep C Discussion Forum

Hello All!

I'm new to the site and this is my first post.  I contracted Hep C from a girlfriend back in 2003.  Over this time I developed hyperthyroidism (been on Levythoroxine) and Sarcoidosis (which was once treated with Steroids). The steroids caused my weight to go from 200 to 270 after a year. Between taking opioids for a back injury and the drastically increased appetite from the steroids, I ballooned up in weight. That was 2007 and after 9 months the doctor took me off steroids and put me on metformin for pre-diabetes. Come 2008, the weight dropped off and stopped the Metformin...  This whole time, my VA doctor suggested I address my Hep C. My levels were not dangerously high, but he still wanted me to see a specialist.  I believe this was around 2010 and I met with a group of 4 others that might start the year long Interferon treatment. A psychologist/program director said the odds were that only 1/4 of us (the elderly woman being the only one) would likely finish the intense treatment.  Those were just the simple statistics... I met with the gastro specialist and he said that my levels did not demand that I start treatment immediately, but could wait for new drugs being developed that could cut the treatment time in half... A few more years passed and the doctor said that a new drug was in the pipeline for 3 months of treatment and no interferon, so let's wait...  Now comes 2014 and a number of possibilities, as we all know.  

I actually held off a year, since I now had Type 2 diabetes (along with the other health issues), weighed 270 lbs again and was on Metformin and Glipizide... I thought I'd try to lose some weight and get as healthy as possible, before starting the treatment... It's now September 2015 and the weight hadn't changed. My Hep C levels were a little higher than usual (I apologize for not having exact numbers. Just never inquired), but the treatment was so expensive and you never know if the govt. will say you're not in urgent need, etc.. 

Long story short, I began taking my ONCE a day Harvoni pill and looked out for my lethargy or mood to worsen. A month passed and peculiarly, I just felt like I got back an extra step in my day to day life. Know what I mean?  When I got blood work after a month, I told the doctor I not only had no symptoms, but felt better physically and psychologically... She said that after only a month my levels dropped significantly and that I would only need to take another month (60 days total) of medication... O.K., great. Then what?  Then I return in 3 months (February) to test my blood again and make sure the virus is completely gone.

It's December now (30 days off Harvoni) and I've had no negative side effects. In fact, i had a couple of scares with my sugar levels dropping low. I thought, oh great, now I have to worry about my Type 2 Diabetes sugar levels raising too high from cheating with sweets and now have to make sure I have the right amount of sugar/insulin ratio.  Well, I stopped taking my Glipizide for one day, then two days, etc... and also could eat a 1/2 box of Oreos and my sugar didn't skyrocket... I  thought my diabetes was cured. The nurse said it would make sense that the Hep C effected my liver's ability to process insulin... My primary doctor always said I could determine when to start and stop the insulin medication, i.e., lose the weight, eat healthy and avoid Type 1 diabetes... I no longer am taking Glipizide, but am still on Metformin until I get a full blood work done for Hep C and everything else.

So it's a month off Harvoni and I feel great.  Just to know psychologically that this horrible disease is very possibly eradicated from my system is a relief, but physically I feel better than usual.  I enjoy a dessert on occasion, but still want to get rid of this weight. I'm tall and I may not look obese, but I technically am. And now there is no reason to feel that the monkey is still on my back. I still have some health issues that limit my activity, but I am far from being crippled. I celebrate how fortunate my life is and the second chance been given to live a healthier life.  No way am I going to blow it.

I hope my long winded narration will give a little hope or inspiration to those having a rough time with the treatment or those trying to enter into treatment. It's expensive and I pray that a generic comes out soon or the price just comes down, so that anyone who wants to be treated will be treated.  Keep your heads up, stay strong and God bless!

Matt

-- Edited by MattTheBrat on Sunday 6th of December 2015 12:54:27 AM

-- Edited by MattTheBrat on Sunday 6th of December 2015 01:17:12 AM

-- Edited by MattTheBrat on Sunday 6th of December 2015 01:20:51 AM

Well done, Bob, congrats on a great result!

You`re cracking through your 12 weeks and will soon be on the home stretch, every day brings you closer to SVR! 

Keep us posted...

This is my first round on the vpak and riba, and hope it is the last

Hi Bob,

I did the VP with 1200 mg riba.  It's definitely the riba that makes you feel bad.  It causes your hemoglobin and red count drop.  When it drops enough, you start to feel really bad; bone tired, zero energy, short of breath, huffing and puffing at any little bit of activity.  'Like death warmed over' describes it perfectly.  When mine dropped, my doctor reduced my riba dose, and a week later I felt fairy normal again.  Drinking lots of water really helped with my side effects, and once I wasn't overwhelmed by fatigue, I was better able to deal with the other side effects.  Make sure you let your doc know how you feel. 

I'm really sorry you feel so bad, but remember it's only six more weeks, and that's hardly a blink of an eye compared to the goal you're working toward.  You can do this!  Good luck!

Penny

From one Bob to the other Bob-- I know what your feeling on that Riba.  I"m almost 6 weeks into 1200 mg a day of that stuff and its the pits. The last two days have been tough! My wife did the V-Pac  W/O riba and really dident have any S/X, so most likley your S/X are all Riba. Your on a good protocol so  hang in there and finish the job.  Also wanted you to know that the itch hasent been to bad,and last time on riba as I remember the itch wasent an issue. Some people just react to riba with bad itching, sorry your one of them.My forarms seem to get red and itch some days with a slight rash on arms but thats it.   RC

HI Bob, yes, those all sound like classic ribavirin side effects.

I can give you a few tips which might help.  For the nausea, you could try eating small and often rather than attempting big meals, and make sure you always have your riba pills with food. 

Insomnia can be a real nuisance but some people find that moving the time of the 2nd dose of riba to an earlier time helps.  For the itching, try bathing or showering in cooler water and wearing loose clothing, especially at night

We have a `Search` button at the top of the page, right in the middle, and if you type in a key word for example `itching` or `nausea`, a list of previous discussion will come up.  You`ll find lots of information about side effect management in past threads.

Best of luck with your tests!  Let us know when you have those results. 

Hi Bob,

Regarding the 8.2 fibrosis score, did you have a "Fibroscan" (specialized ultrasound) that measures density/elasticity or was it a blood test called "Fibrosure"? A Fibroscan score of 8.2 doesn't indicate cirrhosis, but a Fibrosure result of .82 does. See if you can find out which test was performed. I included links to both tests that may ring a bell.

Since you're on Ribavirin, as Jill mentioned, that is likely the cause of your current symptoms. It can cause the nausea, itchiness (rash) and fatigue you're experiencing. Ribavirin side effects tend to hang around in one form or another throughout treatment. It causes anemia, which is responsible for the fatigue. Proper diet, rest and hydration will help to limit those SFX. Your doctor will keep a close eye on that during treatment. One other thing to remember is Ribavirin causes a sensitivity to the sun. Limit your time in the sun, wear good sunglasses when you do and use a sunscreen if you'll be exposed for any length of time. My scalp burned to a crisp because I failed to wear a hat! Just be cautious and keep these thoughts in mind and you'll be fine. 

http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

http://www.hemophilia.co.il/documents/Fibrotest.pdf

Hi Bob, it`s early days for you yet, hang on in there and it`s likely the initial side effects will ease off in a week or so.

Can you describe your side effects and we might be able to give your some tips to deal with them.  Also, are you taking ribavirin with your Vik Pak?  If so, I expect that is mostly the cause.

It would be very useful if you could write a few details in your Signature line, that would help a lot when we`re replying to you.  For example, your genotype, your latest liver status (level of fibrosis or cirrhosis), and your treatment details.  Thanks! 

Make sure you`re drinking enough water to keep yourself well hydrated, and take extra rest if you need to. 

Keep going, it will be worth it!

Yes they said would be a 12 week, after the first 5 days already feels like 12 weeks.

What was the post you had on here about a relaspe, Thanks Rob

Hi Bob,

I just finished 12 weeks of VP/Riba today.  The first couple weeks were an adjustment, but after that it really wasn't too bad.  And the stats of the results are so promising.  I'm glad you found this forum; we all know what it's like and are here to help you through it.  You'll do fine.  Welcome to the VP train. 

Penny 

Welcome Bob!  A "Vikerian Warrior"    Join in!   Yes we are alive and well.  Pick any seat on the train.  You will do fine.  Ask away!

Welcome Rob, rock on :)  Party time.   Glad to hear you're getting started.  Are you a 12 weeker?    Good luck.