Hep C Discussion Forum

katymcbride280 · Member

RE: New member/starting treatment

Iris Dragonfly · Guru

hey Anne, How are you doing?

bb, Iris

5-1-18 · Guru

HI Annie, i had many improvements and still having them.

I was getting liver ultrasounds every 6 months after treatment and had them yearly before tx from my family doc to keep an eye on things ; now yearly due to covid.

Somewhere along the line I developed gallstones....after a few attacks I decided I rather have it out than risk a blow up. It wasn't a pleasant recovery but no more attacks!!

I still have a sensitive stomach that developed in my early 60's, now at 69 I just have to pay attention to what my stomach doesn't like but I still get to eat plenty of tasty foods.

I'm so glad you are on the last bottle of your tx and will continue enjoying the benefits of killing off the virus :)

5

Tig · Admin

Hi Annie,

There have been a lot of improvements following successful treatment for me. Less joint pain, much better health in general, and I think I'm getting younger by the day, lol! I wish, ha! One thing that has really stood out, is my mental health. Back in the day, we had little to no options to treat this dreaded disease. To say it was depressing, wouldn't begin to explain it. Many of us tried unsuccessfully during the 90s and early to mid 20s, using some of the harshest chemicals known. Our rates of success were in the 20 percentile. We suffered for a year, in some cases, on drugs that made you feel worse than words can describe, only to be told that we relapsed. The stories, that can be found here, are mind-numbing. So, with that being said, it has been a gift from the Higher Power of your choice to now have these incredible DAA's. I have no doubt, whatsoever, that you will continue to witness improvements across the board.

Observer · Guru

Hiya,

I noticed my complexion improve and my hair was healthier looking when I was partway through treatment...

When I was finished...my debilitating fatigue was greatly reduced (I was on ribivaron which caused my platelets to drop so I was extra fatigued while on the meds) , a lot of other issues faded slowly...it wasnt like flicking a switch but it sure is wonderful to have a bit of ..almost ... normal

congrats on being on your last bottle

Annican360 · Member

Ahh so you both had your gall bladder removed. The nurse told me that was a possibility. I haven't noticed any issues with it and the doc hasn't brought it up again. I have an appointment on Monday. So I hope I'll have the courage to ask all the questions I need to. This is sort of a separate question for anyone who has undergone treatment- what changes did you notice after starting the treatment, and then when you were considered undetected? I ask this because I think I've noticed some positive changes since starting Epclusa. I'm a few days away from starting my last bottle. The changes I've noticed were fairly subtle and unsure if any of it was Hep C/liver related to begin with. It seems my complexion on my face has improved, have had fewer GI problems, and I feel like I may even have more energy, and sleeping pretty good. Not sure if that's a placebo effect since starting tx or what. Anyway, just thought I'd ask you guys. Thanks for your support.

Tig · Admin

Hi Annie,

I hadn't heard about the gall bladder/duct issues before either. What I find oddly interesting, is I had my gall bladder removed in 2001, after approximately 20 years of chronic HCV. The reason for the removal, my GB wouldn't squeeze, releasing bile. On ultrasound, they found a large internal polyp inside. No doctor ever mentioned HCV as a contributing factor, so there is that!

You're right to be cautious searching Doctor Google. We used to always tell our members to forgo it and if you had a question, to ask us first. There is so much garbage information out there, and it doesn't help when you're dealing with conflicting research. Always talk to your health provider about such things.

Congrats on your continuing success in destroying the Dragon!

Iris Dragonfly · Guru

Excellent! You are doing great. I had gall polyp that was removed (whole gall bladder unfortunately, at the time they weren't sure what is was) but I don't think there was an enlarged duct relating to the problem.

Good to hear you are tolerating the meds well.

I'll check in on ya later, blessings, Iris

Annican360 · Member

Thanks, guys. Been feeling pretty good lately. I have my next blood work at the end of July. Also, I am over halfway through the Epclusa. The pharmacy called yesterday about sending my last refill! So hopefully things continue to go well. I meant to ask, have any of you heard of issues like a dilated common bile duct, or gall polyp with HCV? My doc didn't say much, I didn't ask much either. I'm always so nervous and am afraid I'll end up completely stressed over. All the doc said was the size of the bike duct was larger than it normally is for someone my age. I'm no longer a drinker but in the past I was, so I wasn't sure if that could have something to do with it. The polyp I haven't had any further tests on, so maybe they'll revisit that after tx. I was supposed to have an MRI to look at these things, but once I was approved for tx they didn't mention it again. Anyway, I've been thinking about this lately. I'm also too nervous to Google these problems. I KNOW I'll probably come across a lot of scary things, so I wanted to see if anyone here has experienced any of these issues. Thank you!

Tig · Admin

Hi Annie,

Thanks for sharing your history. I understand the reason for some anxiety, treatment was and is stressful. I went through two courses of treatment, and the first attempt failed. That was during the Interferon days. It was difficult at best. You’re very fortunate to have received Epclusa.

Congratulations on the new baby! Maternal transfer is relatively low. The fact he has tested negative twice is great news.

Stay committed to your routine, and you’ll be pulling into the end of treatment station very soon! Please keep us informed.

Annican360 · Member

Hi Tig and Iris, Thanks for the encouraging words. I think I started stressing because I was hopeful I'd get the UNdetected. I've actually been feeling so good since starting tx. Maybe it's a placebo effect of knowing the virus is hopefully (finally) leaving! I also made many great changes to my diet and physical activity, so I'm sure that has helped. I've been drinking tons of water. Throughout the day I refill a 32oz bottle and sometimes squeeze a little lemon juice in. I was actually diagnosis with HCV when getting routine lab work after a positive at home pregnancy test. I was a VA patient at the time. I was called by the nurse confirming I was pregnant and slightly anemic. They hadn't mentioned HCV. It wasn't until a few weeks later the receptionist accidentally told me when checking into an appointment. So of course as far as treatment I had to wait until after I delivered. My son fortunately tested negative at birth and again at his 18 month checkup. Of course this was a major worry of mine! I won't get my homes up for my lab work at the end of July. Hopefully it's still lowering. Of course, I'd LOVE to hear an early "undetected." I'm certainly happy with the rest of my labs being normal. For as long as I can remember I've always had Extreme anxiety over lab work and other tests. Especially once diagnosed and other issues came up. Sorry to ramble again. I'm able to speak to my mom and partner about this but not many others. My fiance's side of the family (whom we're very close to) has no idea, and for some reason I haven't wanted to tell them. I appreciate the encouragement. Reading through posts on this forum really helped give me the courage to finally continue to see my GI in hopes of treatment, and of course helped ease my worries over starting the Epclusa. Annie (Sorry if this is repetitive, can't remember everything I wrote in my other posts ).

Iris Dragonfly · Guru

Hi Annie,

You are off to a great start! Lookin good, breath easy this should be behind you soon.

Hope you don't mind me asking... was your baby born with the virus?

See you soon best wishes,

Iris

Tig · Admin

Hi Annie,

That’s fantastic news! You have every reason to be pleased with those early results. You’re right, some people are undetected at the 4 week mark, but certainly not everyone. I’d say about 30-40% clear the virus early. I have several friends that were still detected at the end of treatment, which brought great concern to them as you would expect. When they tested at 12 weeks post treatment, they were all undetected and continue to be. It‘s uncommon, but it occurs. Stay the course!

The fact that your enzymes have returned to normal, is the best news possible! That means you are responding correctly to treatment. These DAAs are incredibly effective and Epclusa is one of the best in my opinion. Your pre-treatment viral load is insignificant. It can rise and fall at will. I have seen VLs drop below a million one week and the next it’ll be 10 million or higher. That just means the virus is spiking in activity. Your own immune system is responsible for that. Once you start treatment it’s going to steadily decrease. I have no doubt that you will succeed.

I‘m pleased that any side effects have been minimal. Are you drinking lots of water each day? That habit is so important in keeping them at bay. Keep up the good work and this will be gone before you know it. The time on treatment can really drag on, but in reality goes by quickly. None of our members have relapsed on these DAAs. Stay positive and keep your eyes on the prize coming your way. SVR12 will be in your future! smile

Annican360 · Member

Hi guys! Thanks for responding. I was planning to update once I found the courage to start the Epclusa. I felt guilty waiting, knowing how fortunate I was to be approved for this treatment! Anyway, I've taken Epclusa for about 5 weeks now. I've had very minimal side effects, in fact I'm not sure I've truly had any noticeable ones. I had my one month labs last week. Yesterday they called with the results and I was only able to speak to the receptionist so I had a few questions about the results that couldn't be answered. First, she told me my liver enzymes and the rest of my CBC were within normal range. That was such a relief, as I've had elevated enzymes and other issues for at least close to two years. She said the HCV significantly decreased and is responding to treatment and to continue to take as prescribed. However, she said the HCV is still showing as "detected." I hear a ton of people on forums say their 1 month lab work had shown the virus as undetected by this time in treatment. Anyway I guess I was wondering have any of you taken DAAs successfully (or unsuccessfully) and were still showing as detected at your 1 month labs? I guess I was hoping for an early "undetected," like seems to happen with many others. I have genotype 1a, I don't know my viral load pre-treatment, just that my GI doc said it was pretty high about a year ago. I get intimidated to look at lab results, since they can be hard to read and I'll end up Googling things and worrying myself more. Thanks for all your input, guys!

Tig · Admin

There was a glitch in the notices for this thread, which is why the notices in the Chatbox are missing. This message should return it to normal.

Tig · Admin

Hi Annie,

I'd like to welcome you to the forum, too! You are definitely among friends and we will do our best to reduce your concerns.

First, congratulations on getting the ball rolling. For so many of us, that was a big obstacle to achieving the cure, or SVR (Sustained Viral Response) of Hep C. The insurance companies were difficult, if not impossible to work with. When I took my last round of treatment in 2013, the drugs were pretty rough on those that tried them. The rates of success compared to the new drugs, like Epclusa, were much lower and far longer courses of treatment. I'm so glad you've secured your first prescription. You're on the road to success!

We have a lot of data on the website regarding the drugs themselves, as well as anecdotal information from fellow members that all beat the Dragon back into its cave. The new DAA medications are so effective, they're almost foolproof. The most important piece of advice is to read some of our stories, and you'll gain vast amounts of insight into treatment. As our friend and long time member, 5, mentioned below, the way to reduce or eliminate side effects is to drink a gallon of water every day. I can't stress how important that is! Get a refillable container and carry it with you throughout the day, refilling often. You may learn to hate plain water for a while, but you'll see from other's experiences here and the medical reports, it's a sure way to ride through treatment feeling few, if any, side effects. Always take your medication at the same time each day and once you start, stick to that schedule. Many report sleeping like a baby on these medications, so you can choose to take it in the evening if that fits your schedule best. Very often any fatigue associated with it is experienced at night. I have two small grandchildren, so I know what chasing after them is like! They can keep you moving!

The Search function is top center of the page. Use a keyword or two, you'll find several discussions on the topic. You can always ask for help in finding the information you seek. That's what we're here for, and I encourage you to ask any and all questions you may have. Keep your chin up and don't let the side effects worry you. They are totally manageable with that gallon of water, good diet and rest. I know you can do it!

5-1-18 · Guru

Welcome Annie, this forum is great for support.
We were all nervous to start and somehow we did it and I am so happy to be cured.
I worked part time during my treatment and really only had a few really bad days.
Just in case, is there anyone at all that you could set up before hand in case you need a babysitter for a few hours?
Adjusting when you take your doses is also important because some ppl get wired and others get tired.
Drinking a gallon of water a day is a must, along with healthy foods.....but my hubby ate alot of pastry during his treatment. I stuck with a fairly healthy diet.
How many weeks is your treatment?
I'm excited for you

5

Annican360 · Member

Sorry, I started the thread and posted while I was in middle of writing. I was diagnosed with Hep C in 2016. Unfortunately, I was pregnant and would need to wait for treatment. I moved states and had my son. It took me a little while to get established with a local GI doc. When I first started going to the GI my labs were fairly normal. I had a hard time getting insurance approval. During this waiting period my enzymes became elevated, along with a slightly enlarged liver and a few issues with my gallbladder and bile duct. After my second ultrasound they ordered an MRI, which I still need to have done. Well, I got a call a bit over a week ago telling me I was approved for treatment with Epclusa. I received the first month's supply and have yet to start taking it. I've become super nervous, simply over the potential side effects. I've sort felt fatigued lately without taking medicine, which has made me hesitant to start. I see that treatment for many has gone real smoothly. I think I'm just nervous because I'm home alone during the day with a VERY active 3 year old. Anyway, I don't mean to ramble. Just wanted to introduce myself and hear about other people's experiences.

Annican360 · Member

Hello everyone, thanks for having me here.

-- Edited by Tig on Thursday 13th of May 2021 09:19:43 PM

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