My Hep C Journey

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tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 2/2/2016 11:50 AM (GMT -7)   
I'll admit it was tough. I only saw my Dr. once and all I said to her was that she could see I was still alive and the side effects were living up to their promise.
 
HOWEVER...  I framed my lab report that said Not Detected and everytime I notice it I feel like I'm looking at my birth certificate.  I would do it again but I never want to.  I told my brother that dating is much different now because my date may be thinking "I know what this guy wants"  ...but I'm actually thinking I want a drop of her blood to make sure she won't reinfect me.
 
I bought about a dozen Hep C at home test and checked my X and a couple other friends I had lived with in years past to make sure they were ok.  Everyone was fine. My attitude about health is much different now. 
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 12-22-15
Thank You Gilead

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/2/2016 12:54 PM (GMT -7)   
Hi tblount,

Thank you again for the information. No information such as this has been shared with me by my doctor. It seems she's mostly just a pill pusher. It seems reasonable that doctors would give you a better framework of what to look for and what these things do to your body.

I have been so careful to make sure I had food along with the ribavirin, so I've not had the experience of the reved nervous system to that extent. I haven't had hypertension so it hasn't put me in dangerous position, yet, or hopefully ever. I think my body is getting pretty saturated due to these bumps I'm getting on my legs, arms and now chest. It is getting harder to drag myself around all day. I'm taking a rest day today.

OMG the heart valve failing to relax sounds really frightening. I hope the doctors are aware of this issue with blood pressure. So far my blood pressure has been close to normal when they take it. I believe it was 120/70 when I went in last. Of course I won't see the doctor until about 10 days after my treatment ends now. They take blood pressure at the lab. I hope they send that information on to the doctor too, not just the blood results. I go for my next blood tests in about a week.

After reading one of your comments to someone else here I requested my doctor to have my ammonia level checked. It came back in the normal range. I am still feeling kind of foggy though so it must be something in addition to the ammonia.

I have not taken any other pain medications after the dose of Tylenol didn't work. I am, for the most part, one of those who holds on rather than taking medication. I do not have naproxen on hand. My doctor did not volunteer any pain prescriptions. I am thinking the pain I am having is mostly inflammatory. My ankles have swelled in the past and with all this stuff pumping through me its likely to have affected me that way. I just hadn't had a lot of swelling anymore or pain in my ankles since I changed my diet and exercise habits a couple of years ago. I have been having a cup of coffee some days. I saw the information about 3 cups of caffeinated coffee helping protect the liver. I used to drink a couple cups of coffee a day, but even when I was drinking it regularly I rarely had as many as 3 cups. Though I wonder if it would reverse the effect of the "jacked up" nervous system the way ritalin overstimulates hyperactive children, thus slowing them down.
I have had some tumeric and cinnamon with honey in warm coconut milk the past couple of days. It's tasty and supposed to have anti-inflammatory properties. I'd rather change things with my diet than take pills or injections any time. My doctor warned me off of ibuprofen, vitamin supplements, and St. John's wort, but nothing else. Anyway, the pain is very slight the past few days.

I need to find some of the HepC at home testing kits. Do you just pick them up at a pharmacy? I didn't know they were available. I wanted to make sure my immediate family was clear. Although they are all adults and responsible for themselves they have not gotten checked yet. None feels as though they are at particular risk so are in no rush. I would feel relieved to know none of them are infected. I think my husband should get checked, though we are not divorced yet, we have not lived together for about 4 years. He's bound to get involved with someone before too long. He should know for sure before he does. He might be more likely to check himself than go to the doctor.

Thank you so much for your response to my questions. I'm so glad to have found this site and the support I didn't have elsewhere.

Allison

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/2/2016 2:12 PM (GMT -7)   
Allison,

I checked back and see your liver is not cirrhotic. You are F2. You shouldn't expect, nor have any of the issues of high ammonia, hepatic encephalopathy, portal hypertension, ascites, or the other side effects of decompensated cirrhosis.

Luckily, you were diagnosed early enough to treat before this worst stage of liver disease.

I think when we "compare notes" on treatment experience and advice, we need to be mindful that each person is unique. Some have sicker livers than others. Each has their own health issues, genetic issues, and ability to tolerate certain medications.

Treatment symptoms "are NOT" the same as symptoms as those with decompensated cirrhosis. Those are:

-Portal hypertension which is secondary to liver fibrosis; this impedes venous circulation and causes the pressure in the portal vein to rise. It can promote hemorrhaging by bursting esophageal varicose veins.

-Ascites which is the formation of a liquid effusion in the abdominal cavity, which can become infected.

-Icterus (jaundice).

-Hepatic encephalopathy which corresponds to neurological disorders by the accumulation of toxins that are not broken down by the liver.

-Primitive cancer of the liver, which is a final complication, and can also be called hepatocellular carcinoma.

Fibrosis is reversible if the cause of the disease is treated. You are really lucky to have found out you have Hep C early in the disease process!

I personally think anyone who feels they may have Hep C should be tested. I also feel at home testing is not advised when we are dealing with such a serious disease. Not a good do it yourself project. Testing should be done by a reputable lab, in my opinion.

To my knowledge there are no special diets for your treatment. We always suggest a heart healthy diet with low sodium for those with liver disease.

Tell your doctor if you use any medications with this treatment, especially:

•amiodarone;


•St. John's wort;


•tipranavir;


•seizure medication - carbamazepine, oxcarbazepine, phenobarbital, phenytoin; or


•tuberculosis medication - rifabutin, rifampin, rifapentine.

You are doing fine and this treatment should be over before you know it! Always run anything by your doctor if you are concerned. I hope this info helps some. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Post Edited (themiz) : 2/2/2016 2:15:38 PM (GMT-7)


woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 2/2/2016 4:21 PM (GMT -7)   
themiz...very well stated.
Thanks for an excellent post.

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/3/2016 12:49 AM (GMT -7)   
Thank you themiz. This is very helpful information.

HepCFree
Regular Member


Date Joined Jan 2016
Total Posts : 28
   Posted 2/3/2016 10:16 AM (GMT -7)   
That was really helpful to me as well ! Thank you!

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/5/2016 5:53 AM (GMT -7)   
Tomorrow starts week 9.
Blood tests next week. Still a bit tired, forgetful and a little down, though not terrible. Some skin bumps on my ankles and forearms passing my elbow that I scratched so now they're little scabs. Only itchy once in the past week. The leg and ankle pain has not kept me awake since last weekend. Didn't do my regular walking this week. Only did one yoga class and a few minutes each morning to get moving. This is my yoga class weekend, so I'll be busy all weekend. So far pretty good.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/5/2016 8:32 AM (GMT -7)   
Glad to hear you are doing so well. Sides of ribavirin are most tolerable if you drink 1/2 your body weight in ounces of water, per day. I am pretty certain you are doing that already.

And there is an RX med for rash you may want to ask your doctor to prescribe. (Trimethicone Acetonide Cream) My husband's rash did not resolve until about 2 months after treatment ended. He treated twice and had a torso, lower leg, upper arm and face rash. His treatment was 6 months, and most of the worst sides came the last couple of months. It takes up to 6 months for the riba to wash out of your system completely....so don't panic if the sides linger a bit.

Have a good week, stay positive, and let us know how your bloods turn out. We care. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/6/2016 10:53 PM (GMT -7)   
Thanks themiz!

I do drink at least that much water and increased by a couple of cups beyond it to help with the rash. Don't know if it helped any more since my doctor lowered my Riba dose. That is probably what helped the rash. I'll have to look into that cream though since it isn't gone, just less itchy. I have been using oatmeal bath powder a couple of times a week and Aveeno therapeutic lotion. I use the dry powder to rub into a bit of a a paste on my wet legs in the tub. I wait for the paste to dry before rinsing it off and getting out.

Has anyone used any kind of protocol for cleansing the Riba out of the system quicker? We have a friend who is an acupuncturist who has a kind of protocol for clearing medications from the body. I haven't checked into specifically what it is, but would like to be back to my old self quickly after all this. I believe building new red blood cells is the priority, right? I think part of it is using a sauna for increased sweating and I don't know what else.


Thanks again,
Allison

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4804
   Posted 2/7/2016 5:45 PM (GMT -7)   
Hi Allison,

There are many approaches to healing...and the docs are pretty up on most of them. We run supplements and cleanses, etc by our Hep doc before using anything. Mike takes several supplements AT the direction of his cardiologist, hepatologist and nephrologist...Vit D with or without calcium, etc...so they are not opposed, but they do warn us if something would hurt the liver.

I recommend you do the same. After the treatment, your liver will need time to heal...the less damage that was done before your cure, the better your liver will be able to recover.

We are praying Mike's is!

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/7/2016 10:34 PM (GMT -7)   
Thanks MamaLama,

I am seeing a nurse practitioner. I believe she will be done with me after my 12 week recheck after my end of treatment check. She has warned against any supplements, including the protein powder I was having in my smoothie for breakfast. I am pretty sure she'll not recommend anything, but of course I'll ask.

I am praying along with you for Mike.

Allison

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/9/2016 8:57 PM (GMT -7)   
Just a little question...I was wondering if anyone has had weight gain on ribavirin. I've gained about 5 pounds in 8 weeks. I see mention of weight loss on ribavirin, but not weight gain. I am wondering whether it is water weight. I don't fee any heavier. The pain and itchiness in my legs could have leg swelling in common. Just not sure...

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/10/2016 7:39 AM (GMT -7)   
I think I would run the weight gain and the itches past your MD, to be cautious. Rash is not uncommon with riba, but you want to be sure nothing else is going on. Better to be on the safe side, Allison. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1114
   Posted 2/10/2016 12:12 PM (GMT -7)   
Hi Allison,
You are in the home stretch now, a few weeks until eot.
Ending treatment will likely, end most side effects. The riba blood level concentration will be drastically reduced, very fast.
Barry

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/15/2016 4:01 PM (GMT -7)   
Hi! Thanks for checking in on me.
It's week 10! Not much longer! I should have finished my meds on March 4th.
Same side effects. Bumps and itching. I can refrain from scratching most of the time. Now getting some along the sides of my neck and near my ears.
Still getting aching legs, though not as bad as those few days when I couldn't sleep. I started with the turmeric Golden paste drink with cinnamon for inflammation when the Tylenol didn't help.
Had another set of blood tests last week, but haven't received results. I'll call tomorrow when they're back from the President's Day holiday.

My energy has been good this past week. Better than the last two previous week's when I felt I was going downhill. May be due to the turmeric and cinnamon drink in the mornings or the yoga meditations and practice I'm doing for my class.

So looking forward to EOT!!!

RoseAnn
Regular Member


Date Joined Dec 2015
Total Posts : 38
   Posted 2/17/2016 7:09 AM (GMT -7)   
I am hoping you are feeling better.
I am doing the happy dance.
only got about 10 days of meds and then I can go back to "normal"
The doc says I should start feeling totally better in about 2-4 months after completion of meds.

I will keep you posted on that "recovery"

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 2/18/2016 5:45 PM (GMT -7)   
I've been out of touch for a couple weeks but it's good to catch up on everyone's progress.

Someone asked about where to get the at home test. You can google and find them I think a company named Dgate makes them. I have nothing to do with any company. They cost around $7 to $9 each depending on the currency exchange rate. It's interesting that I have seen the same test available for 35 cents and less if you buy quantities like 2000. They work very well. They spotted me definitively when I first started medication. Even after being cures (yeah I know ) the test still shows a slight positive and it takes about 20 minutes to detect my antibodies. They use these test in countries like India and Egypt where the hep c rates are very high. I just think that although there is the element of embarrassment when talking to people I've crossed paths with, it's the right thing to do to take responsibility that they are checked. I've learned that by begging friends to take a Shingles shot and only one has and that was after I asked them every Christmas to get the shot for my present.

I'm working hard and feeling great 2 months after EOT. I did visit a friend with a sauna and got 10 days of some relaxing sweating. I've cut and hauled about 40,000 pounds of paper wood to the wood yard so far this week and I have another day. I work by myself. My back is getting sore but I'm collecting "mad money" for a cruise as soon as it turns hot.

I wanted to comment on the rash problem. I only had some rash on the back of my arms and I used Oregano Leaf Extract mixed with 2 parts olive oil with great success. I've read several post about people having the riba rash. Anyway, the riba problems should be a thing of the past when the FDA approves the new drug that treats all genotypes. The genotype test won't even be necessary. Although it was tough I'm so happy it worked for me.

I also read that the country of Australia has decided to totally eliminate Hepatitis C from their country. If they follow through ...I say : Way to go!

To Allison... Weight gain??? I mostly remember having to force myself to eat during treatment. I worked hard to maintain my weight and only lost 5 lbs. You are amazing if you want to eat after taking Ribavirin for over two months.

One mo thing... I would strongly urge anyone with hypertension to get a bp monitor. They are only $18 on ebay... including shipping. Do me a favor and spent 10 minutes reading on the elevated risk of stroke and heart attack caused by high blood pressure... then decide if you think you should be able to check your bp daily and anytime you don't feel right.


M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 12-22-15
Thank You Gilead

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/21/2016 11:08 PM (GMT -7)   
Yay !!! RoseAnn!!!! Almost there!!!!

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/21/2016 11:35 PM (GMT -7)   
Good to hear from you tblount!
You sound like you're doing great. The days of sauna and an upcoming cruise sound really good. Nice that you can handle the hard work now you're off the meds.

Thanks for the info on the tests and blood pressure monitors. Good ideas.

That is so cool about Australia! I hope they do conquer Hep C.

Yeah, I don't know about the weight gain. I was always really careful to eat something oily with the ribavirin and really have not had nausea much at all. I drink about 12-15 cups of water every day. Up from the 11 I started with, I added the extra when I was having trouble with all the itching. I still have some rash, but it isn't as itchy as it was most of the time. I have to say I am glad this treatment was available to me. I think I've done quite well. I've been very careful with the timing of my meds. I'm still not detected and my red blood cell count is holding, so I am happy. I am so pleased my liver will probably heal up too. What great fortune!

Well, continue to take care of yourself and have fun!!!

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/21/2016 11:56 PM (GMT -7)   
Okay, I am now in week 11.
12 days of Sovaldi and Ribavirin(still at 1000mg since the 5th week of treatment) left to go. I have been feeling pretty good for the past couple weeks.
It seems the more yoga I do, the better I feel.
Did about a mile and a half of run/walk Saturday. I didn't get dizzy doing so. Maybe I can amp up my morning walks again and doc some interval training. I've babied myself while taking these meds. Since I'm working all the way through, I really needed to be able to hold up till the end.
Last year I ran my first 5K in March. This year I finish treatment 2 days before the same 5K. I'm thinking of doing it, even if I have to walk the whole way. I think it would feel like a celebration! I've got to do something to celebrate. Drinking is out.

Hope you are all happy and healthy!!!
Allison

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 2/22/2016 12:24 PM (GMT -7)   
You must be a spring chicken... I couldn't run a 5k if my hair was on fire. But I don't have enough hair to worry about that. In my prime I thought nothing of running a 10k and then driving to another town and running another one. My last three years of college I was #1 in the Thanksgiving 2 mile race. Everyone wanted to know when I was going to graduate. I'm glad I can still work like I do and only have sore muscles and a backache.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 12-22-15
Thank You Gilead

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/23/2016 6:10 AM (GMT -7)   
Allison K said...
Okay, I am now in week 11.
12 days of Sovaldi and Ribavirin(still at 1000mg since the 5th week of treatment) left to go. I have been feeling pretty good for the past couple weeks.
...
I think it would feel like a celebration! I've got to do something to celebrate. Drinking is out.

Hope you are all happy and healthy!!!
Allison


Hey Allison...the finish line is right in front of you...Congrats!!!
Yeah, about the celebratory drink...we can toast each other with a nice cup of chamomile tea!...lol

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/23/2016 8:16 AM (GMT -7)   
Hi tblount,

I have been working hard to bring my health and fitness level up for the past couple years. I'd been lazy and living an unhealthy lifestyle. I made all these changes and somehow my liver was not right. It took my doctor two years of telling me I was obese and condescending to me as though I was an alcoholic before he bothered with a hepatitis test. So glad I'm finally almost in the clear!
As far as the running goes, I have yet to actually run a whole 5K. I'm improving though. I have run about half way without stopping once now.
For a while I was too heavy to run comfortably at all. Running feels like freedom to me now. I have to do it once in a while to remind myself. I just want to enjoy my life as long as possible. That is taking some work. It's a labor of love though.

Take care,
Allison
F, 57, diagnosed 9/15, undetermined source,
12 Week Treatment with Sovaldi and Ribavirin start date 12/12/15.
Week 4 blood tests :
-HCV Not Detected
-Liver function in Normal range
***EOT on March 4, 2016***

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/23/2016 8:22 AM (GMT -7)   
Love it Woofer5!!!

Chamomile tea it is.
Or if you want to get exotic perhaps a Tumeric and Cinnamon Chai...


Cheers!

Allison
F, 57, diagnosed 9/15, undetermined source,
12 Week Treatment with Sovaldi and Ribavirin start date 12/12/15.
Week 4 blood tests :
-HCV Not Detected
-Liver function in Normal range
***EOT on March 4, 2016***

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/23/2016 4:07 PM (GMT -7)   
Allison K said...
Love it Woofer5!!!

Chamomile tea it is.
Or if you want to get exotic perhaps a Tumeric and Cinnamon Chai...


Cheers!

Allison


Haha...now That's what I'm talking about!
You should know you've created a monster...I've been researching turmeric/cinnamon/chai latte recipes, dug out my espresso machine and ordered another couple cases of organic coconut milk since I'm getting low. Gotta love Amazon prime...hahaha

Anyway, you'd make my daughter proud. She's been after me for...forever...to add turmeric and cinnamon to my diet and she finally succeeded last year. The latte sounds like a Mah-velous addition... tongue
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