Extraordinary Symptoms, Genotype 2b, Sovaldi & Ribivirin

[HepCSurvivor15]

Just wanted to share the story of my hep c journey so that others may find encouragement & enough to keep trudging along through this journey:

I contracted Hep C sometime in my younger, wilder years through either a piercing or tattoo. Like most people, I did not find out I had it until March 2014. How I found is rather important, peculiar, and extraordinary all at the same time. I began experiencing incredible pain in my joints. The most sever pain I've had, next to childbirth. It was strange as well as excruciating. It would come on and get stronger and stronger over the next few hours until it debilitated the limb it began in. 1-3 days later I regained use as pain moved to another spot in my body. Then I had several days, sometimes even weeks before this cycle of horrendous pain returned, affecting and debilitating an area before moving on to another, then another, and another. It came in my shoulder, then in my wrists, elbows, fingers, toes, ankles, knees. I have been in a sling, crutches, wrist braces, ankle braces, bed ridden. I used to literally crave ice packs. I wanted to share this for 2 reasons: 1: I wanted others experiencing this type of pain to not feel crazy! I began to feel a little crazy when every blog I read and everything I had researched never suggested the type of pain I was experiencing to be a symptom of hep c. Even my hepatology specialist would not believe that this severe pain was being caused by hep c as she quickly brushed me off to seeing my primary care for it instead of prescribing something to ease the pain. 2: I believe God manifested this pain within me so that I would go to the doctor to have this diagnosis revealed so that I could seek treatment for it before it was too late. Otherwise I do not think I would have gone as I am not much of a doctor goer. Once I went and discovered the diagnosis I researched for hours and hours, days and days. Like everyone else I realized how scary and dangerous this virus is. To top it off, my very insurance company was mentioned in numerous blogs as being one of the most common insurance companies for denying hep c treatment over and over each time it was appealed by people. This made me incredibly worried. I prayed and got my church involved to pray over me and with me. I knew God had planned to save me but how?? Treatment is absolutely unaffordable without insurance!! Do we sell our house? Take out as much home equity lines of credit as we could? Sell off everything we had?? After seeing the specialist, taking all the blood & liver tests, the doc sent over the request for treatment needed for Genotype 2b. Not only was I experiencing a rare side effect of hep c but I was also one of the most rare genotypes there are in America. I worried and my faith wavered. The pharmacy called me less than 48 hours later to tell me I was approved and they were shipping the first month of treatment pills to me immediately. I couldn't believe my ears and spent 20 of the 30 minutes we were on the phone grilling the representative to ensure there was absolutely no mistake! He assured me there was not so I praised God more than I had during my entire life, I'm sure. Then I began to worry about the side effects of the drugs I had to take. There were pages and pages of typewritten side effects as I was prescribed Ribivirin and Sovaldi. God blessed me there as well. I had absolutely NO side effects AT ALL!!! I took the treatment for 12 weeks. Another 12 weeks after treatment ended I was tested again (12/01/2015) and the results were negative for hep c, I was cured!!!! I am sharing this story because I believe God healed me through his Son Jesus who died on the cross for not only our sins but also for our diseases, sicknesses, and all other inequities. I believe He wants me to share with anyone & everyone who will read. I also believe there are people suffering right now who are waiting for approval from their insurance companies, or waiting for the second, third, fourth, fifth appeals to be approved as well as some that are waiting for a liver transplant who need real life encouragement and hope for their own futures. I am here to give that to you. Never ever give up and keep on waking up each morning thinking this is the day that it's going to change for you!! Here are a few Scriptures I clung to:
“For the glory of Your Name, O Lord, preserve my life. Because of your faithfulness, bring me out of this distress.” Psalm 143:11.

“I waited patiently for the Lord; he turned to me and heard my cry for help.” Psalm 40:1

“Lord my God, I cried to You for help and You healed me.” Psalm 30:2.

“Show Your favor to Your servant; save me by Your faithful love.” Psalm 31:16

“The righteous cry out, and the Lord hears, and delivers them from all their troubles.” Psalm 34:17

“My son, pay attention to my words; listen closely to my sayings. Don’t lose sight of them; keep them within your heart. For they are life to those who find them, and health to one’s whole body.” Proverbs 4:20-22.

Finally, I was taught to realize this awesome healing wasn’t about me, but about God’s glory and Jesus Christ’s glory. “So then it does not depend on human will or effort but on God who shows mercy. For the Scripture tells Pharoah: I raised you up for this reason so that I may display My power in you and that My name may be proclaimed in all the earth.” Romans 9:16

[perineuro]

Hi! 

Thank you SOOO much for sharing this info about yourself.  I was diagnosed with HCV in 2008 and my gastro told me to come back and see him in 5 years (2013) because new treatment would be available then and not so harsh.  Four  years into it (2012) I developed the exact same issues as you.  Just excruitiating pain shooting from one area to another.  I was diagnosed with advanced peripheral neuropathy.  I did not no that it had any relationship with HCV.   Long story short in 2014 I ended up in the hospital,  In 2015 found out I also had cirrhosis of the liver.  So I started treatment in Sept 2015.

My gastro, NP, now orig started me on 12 weeks, and at 12 weeks asked me to go for another 4 weeks due to the cirrhosis.

Now that I am about to finish treatment!! yea, hope it stays with me during post-treatment.  My gastro,NP has ordered an ultrasound along with AFP Tumor Checker.  She failed to tell me about it.  I just found it on my checkout paperwork from our visit.  I called and she said it was to check for signs of liver cancer (HCC).  I asked why? did she think i had it?   Her response was "no" just a 6 month check up.

So I do have a question...  It seems like I just keep discovering the process of what others (Dr's, patients) already know....  it never really stops, just something else to continue with on our journey through life?  Am I on track here?  I really just keep expecting that I will be healed soon.

Thank you for your quotes from Psalms and Proverbs!  That is really the only way to deal with any situation that literally knocks you down to nothing (speaking of myself only) or any other life issues. 

I am also geno2b and have been taking sovaldi/ribavirin for 15 weeks now.  Hopefully on my last week now.

[HepCSurvivor15]

Perineuro,
I cannot express how grateful I am to have offered you some encouragement during this time in your life. Each hour can be a struggle when going through this, at least it was for me. There were times I couldn't even open a water bottle due to the severe pain in my hands.  

To answer your question, the painful symptoms you experienced is NOT something you have to deal with for the rest of your life. Once the virus is killed by the medicine the pain you are experiencing will die with it. The Sovaldi/Ribavirin combo has an extremely high success rate for Genotybe 2b, with or without cirrhosis.  Have you taken any HCV tests while you've been on treatment? If so what were the results?

[perineuro]

Hey HepCSurvivor15!

I have had two lab tests done for HCV my first one four weeks into it and I was still detectable but lower, and my last lab at 10 weeks in I was undetectable!!!   I was excited about that and when I met with my gastroNP she stated "Oh, I hope this works, lets continue through 16 weeks."  Then she slipped me the tumor check and ultrasound without discussing with me, sooo  I went from excited to "concerned" but deep down I'm really feel "excited"!!

I will let you know how the ultrasound and lab tests for liver panel and tumor check turn out.

Oh, yes I went through being unable to open water bottles and bedridden to bed sheets feeling like razor blades....  not so bad now...  and I can walk!!!

LOL, loved hearing from you.
Perineuro

[Philadelphia]

Perineuro, if you have cirrhosis your doctor is doing the best thing for you and absolutely following protocols by ordering an AFP Test and doing an ultrasound every six months. People with cirrhosis have an increased risk of getting HCC and without regular monitoring it can develop quickly without being picked up.

Your doctor is practising good proactive medicine.

[HepCSurvivor15]

Hey Perineuro!
First I want to say Philadelphia is right that the tests you were "slipped" should be administered. I, too, received those tests. I am not sure why the doc didn't mention them but like everything else these days, if you don't ask or take control of every situation and service you seek- medical or otherwise- you may not get all the info.

Second, I want to say don't ever let anyone steal your joy, if even for a moment!!!
When I first went in for my liver fibroscan & ultrasound-  before treatment could even be determined & ordered, let alone submitted to the ins company- The nurse concluded that my liver was in absolutely outstanding condition, especially for the diagnosis I had. Then she added that it was bittersweet since insurance companies typically denied treatment approvals for patients with livers in such good conditions. Without hesitation I told her that the Lord would see to it that I got treatment. She looked at me with both disbelief in my response and amazement all at the same time. I walked out and hoped I could believe 100% in what I had just told that nurse.  Claim your healing through Christ and cling to it!! I cannot say how many times I incorporated the following verses into my prayers throughout the day since diagnosis:
 “But my eyes look to You, Lord God. I seek refuge in You; do not let me die.” Psalm 141:8.
“Because of Your name, Yahweh, let me live. In Your righteousness deliver me from trouble.” Psalm 143:11.
“…because who hopes for what he sees? But if we hope for what we do not see, we eagerly wait for it with patience.” Romans 8:24-25.
So you enjoy the fact that your last test came up UNDETECTABLE!!!!!! I am rejoicing & excited with you!!!! It is an UNSPEAKABLY GREAT sign of your healing!!!

I will keep you in my prayers & will be thinking of you often. I pray you will be able to offer your own testimony as encouragement & support to others once your final test results come in Negative and you are deemed CURED!!!!!!!!