Hep C Discussion Forum

CandaceV · Senior Member

RE: My husband starts Epclusa today

Sydhanrahan · Guru

Candace, this is where persistence gets you.

Great news on partner's results.

Syd

biggrin

CandaceV · Senior Member

That's what I thought, only for his own surgeries.

I will let you know when the other test results show up.

Thanks again.

Shadowfax · Guru

Excellent numbers! So glad to see them.

It is a shame about the blood. I know as I needed to be drained a few times due to high iron and my blood needed to be destroyed. It would have been so much more palatable if it could have saved someones life.

Let us know when the RNA comes back.

SF

Tig · Admin

Hi Candace,

No, he can never donate blood again. The blood banks test for the HCV antibody and turn down anyone that is positive. He can however donate his own blood ahead of any surgery he might need. They call it autologous donation.

CandaceV · Senior Member

Thanks for all the encouragement, truly appreciated.

If you only knew the entire story, that started when I met him in 1982. It took that long to get him to agree to treatment, August 5, 2016. Stubborn doesn't even begin to describe his reaction to the possibility he was infected. He wanted to live in blissful ignorance.

I do have a question...will he be able to donate blood in the future if this beast is finally slayed? Anyone know if they test for antibodies or whatever?

He told me that when he tried to donate blood at work in 1980 or so, he was told he couldn't and had hepatitis. He said they didn't specifically say hepatitis c, and that's why I didn't let it go. I'm like a pit bull when I get a hold of something, I have OCD and wouldn't let it go.

He always said he didn't have any symptoms of hepatitis and generally just didn't believe them.

CandaceV · Senior Member

Yes, the hep c virus count test (whatever it's officially called) was also drawn this morning, but that test won't be back until next week. Appt. with Gastro next Friday to discuss.

robertsamx · Guru

You got to love those numbers!! He's doing great, keep up the good work both of you! RC

JimmyK · Guru

He has a huge team here rooting for him and those numbers are INCREDIBLE!

Going to knock this one right out of the Park!

JimmyK

Tig · Admin

WOW! That's nothing but great! Super numbers, Candace. Pat him on the back for me, he has really responded well. Congratulations are in order! I think you should be very happy with the upcoming viral load results. Keep up the good work!

Pablito · Senior Member

Great results and par for the course.

And very interesting to hear what Candace has to say about sides coming from HCV dying.

Canuck · Guru

BEAUTIES!!!! Look at that ALT!

His epclusa start was Aug 5, so these labs are his first 4 week labs and PCR, with the 4 week PCR result to soon follow, right? biggrin C.

CandaceV · Senior Member

Bloodwork from this morning for liver enzymes (RNA for hep c won't be back until next week)

ALP 58 (normal range 39-130)

AST 24 (0-41)

ALT 14 (0-40) down from high of 58, was 28 last month

Bilirubin 0.7 (0.3-1.2)

Albumin 3.9 (3.2-5.3)

Protein 7 (6-8)

This is outstanding!

Phoenix17 · Senior Member

I will take your advice! Thanks. Glad he is feeling good!

CandaceV · Senior Member

Congrats to you too!

3 words - water, water & water. A gallon a day.

The first 2-1/2 weeks were the worst. He just got his second month supply today and he feels won-der-ful. Consider taking it near bedtime, sleep through the side effects.

Phoenix17 · Senior Member

As a newbie and waiting for approval for Eplusa, Congrats on your husband being approved! Its great to hear about side effects, and other information. I am learning so much here. Thank you!

CandaceV · Senior Member

Yeah, lawyers cost big money, guess we're paying for that too. I'm just happy they developed a cure that doesn't darn near kill you or make you feel like you wish it would.

The doctor told my husband that toxins are released by the virus after death and the liver has to remove them, causing mild side effects. The side effects you feel from Epclusa are actually from your liver removing the toxins, not the drugs. The toxins cause the headaches as well.

The link I posted earlier has been a wealth of information on hep c, follow them on twitter if you have it. Lots and lots of studies about hep c, liver cancer, etc. I believe they also have an rss feed if you don't have twitter.

https://hepatitiscnewdrugs.blogspot.com/

Canuck · Guru

Candace,

It IS a very interesting sof story and state of affairs, isn't it! Some of us have been following the troubled convoluted prior history of sof development (sales/profits and rights therof), in bits and pieces, in fits and starts, claim by claim, suit by suit, since it left the creator(s), vet hospital and was "launched". No wonder big money is required to cover "costs"! It's getting to be a longer and longer story. C.

Pablo, I did share my minor "roiling" with Candace, in turn, she conveyed something important that her doc highlighted to her, it was good for me to hear this from her (and her doc), as it served to re-remind me, that other sides on treatment are directly connected to the more immediate effects of having to deal with the death of the virus load within your body, and the toxic cleanup thus required. (something to that effect) maybe Candace can better re-interpret. smile C.

Tig · Admin

Whatever happens, leave the drug pipeline unharmed. Production of Sovaldi and Harvoni shouldn't be hindered. I doubt it would be allowed, but you never know. What a disaster that could be.

I find it unsettling to see all of the legal complications. What a blow for Merck to have their court decision turned over by another judge. From winning to losing with the stroke of a pen. I encourage them to find some middle ground and keep the cures coming. How many billions do they need? I think there should be enough for all of them to get rich on Hepatitis C.

I have a novel idea, how about making it personally affordable for people? How about a cap on profits until a generic offering is allowed and unregulated by the brand manufacturer? There are things that can be done to improve access, but profits and regulation keep getting in the way...

Good article, Candace, thanks.... smile

Shadowfax · Guru

Interesting article. It's fair to say that proper credit and money should be paid to the plaintiff if the information is factual but we certainly don't want Gilead disappearing any time soon, not that I think it will.

SF

CandaceV · Senior Member

Just checking in to post a very interesting link

https://hepatitiscnewdrugs.blogspot.com/2016/08/university-of-minnesota-sues-gilead.html

-- Edited by CandaceV on Tuesday 30th of August 2016 05:06:18 PM

Pablito · Senior Member

I too took the meds close to bed time so I slept though any sides, but in reality there were so few after the first week it probably wouldn't matter when I took them.

Most people go UND at week 4. Some don't though (like me), but go UND by end of treatment.

"Dragged down" is a very good description of the effects of HCV and it's amazing how quickly that feeling goes after starting DAAs. "Icky" was the word I used to describe it. Canuck used the word "roiling"...or was that what she called her side effects?

Pablo

Tig · Admin

Hi Candace,

We all hope the viral load is undetected after 4 weeks, but it's not uncommon to go weeks longer and still be detected. Then again, I've seen some undetected by week 2! It's the way these drugs work, but they DO work. You can expect to get a CBC and a Liver profile too. They will provide some indicators as well.

The effectiveness of these new protocols is without question. Do they have work to make them better? Of course. Fact remains these newest DAA's are better than anything we've seen before. They have come a long way since I was on treatment 3 years ago! Thank your higher power for that! I sure have...

Canuck · Guru

Hey, hey, hey, just look at you tig! and aren't ya just looking mighty fine and grand there I must say! smile C.

CandaceV · Senior Member

Thanks for the encouragement, Canuck and Tig!

The gastro said to expect Zero virus at 30 days. Got our fingers and toes crossed.

Tig · Admin

HOORAY!! I'm thrilled that it worked for him. Sometimes the simple things prove to be the most helpful. So good to hear he's feeling better. That makes treatment go so much easier.

We'll be waiting for the blood work results. I think you'll be pleasantly surprised! Good luck!

Canuck · Guru

Ho-ly!

Yay, yay, yay all round.

Small and big blessings! Nice. smile C.

CandaceV · Senior Member

Moving the dose time worked! He's taking it closer to bedtime and sleeps through the fatigue and headache, he wakes up feeling great.

He told me yesterday that he feels really, really good and regrets waiting for treatment. He says the "dragged-down" feeling he's had for most of his adult life is gone.

His first blood work is scheduled for Sept. 2nd.

Tig · Admin

I'm glad you finally got the permission to move the admin time. I thought that would be the advice given, but we have to defer to your own physician when making those recommendations. He should be on his new schedule soon and I hope that helps with his side effects. Keep up the hydration and rest, it helps more than anything. Sorry about the number of bathrooms though! It's only temporary smile

CandaceV · Senior Member

Doctor called and said to move up the time an hour/day until he gets to the time he wants to take it. Maybe he'll sleep through the headache and fatigue. He's drinking a little over a gallon on water/day now. How I wish we had 2 bathrooms.

CandaceV · Senior Member

My husband has had night sweats for our entire 34-year relationship. He has something called hyper-hydrosis, which means wet hands, wet feet and night sweats. Don't shake hands with him or be within 20 feet when he takes his shoes off :) His feet are so wet all the time that he wears socks with sandals. He slides right out of flip-flops. His armpits stay dry, though.

Tig is right, even here in Ohio it's too humid to be outside and I'm tired of it. I feel like a prisoner 9 months out of the year, either too cold or too hot and humid.

The doctor is gone today, no answer about moving the timing until Monday.

Tig · Admin

Loopy Lisa wrote:
Hi, congrats on your husbands new treatment. I had side effects for just under two weeks like a mild flu. I am on a different combo, but the body has to adjust. I am now over two months in and I have no side effects at all. We also have to remember your husband is still recovering from a kidney operation so his body is healing on many levels. I thought of the sides as the virus giving a feeble fight back so i wouldn't over analyse the symptoms. It all gets better with time. As for night sweats, my husband is a gentle giant compared to my little self and sweats a lot in the summer. He is as healthy as an ox and only ever had one antibiotic in his life after 45 years of age - great genetics. I think its just a case of being a man - sweaty beasties! :)

LOL! "Sweaty Beasties". You crack me up, Lisa! You come down to Florida right now and in this heat and humidity, you too can be a sweaty beast, ha, ha! All it takes here is a walk to the mailbox...

Candace, I hope your hubby is feeling better.

CandaceV · Senior Member

Thanks, Canuck.

CandaceV · Senior Member

Thank you, Lisa. It's not only his kidney cancer, he has a heartbeat abnormality, an aorta abnormality, and lung nodules that are being watched. These things appear to be genetic and run in his family, 7 brothers and 2 sisters. He's doing incredibly well for all of his health problems. But the cancer is gone, his PET scan was negative. We believe that was caused by taking max Ibuprofen doses for 12 years while he waiting to be old enough for a knee replacement. No one should take that drug every day, the link to cancer is a big one.

I have a call into the doctor to see if we can move the dose to 8pm or so. He's increasing his water today to a full gallon.

Loopy Lisa · Guru

Hi, congrats on your husbands new treatment. I had side effects for just under two weeks like a mild flu. I am on a different combo, but the body has to adjust. I am now over two months in and I have no side effects at all. We also have to remember your husband is still recovering from a kidney operation so his body is healing on many levels. I thought of the sides as the virus giving a feeble fight back so i wouldn't over analyse the symptoms. It all gets better with time. As for night sweats, my husband is a gentle giant compared to my little self and sweats a lot in the summer. He is as healthy as an ox and only ever had one antibiotic in his life after 45 years of age - great genetics. I think its just a case of being a man - sweaty beasties! :)

Canuck · Guru

Hi Candace,

Sorry for the headaches. Sounds good (the advice, thinking and your plans). I PM'd you. smile C.

CandaceV · Senior Member

Thank you, I'll call his doctor tomorrow. He is drinking lots of water...today, he's had 9 - 12 oz. glasses of ice water, that would be 108 oz., a little short of 128 oz. gallon. Looks like he needs about 3 more glasses. I think bedtime might be better for him, hopefully he can move it.

Tig · Admin

Hi Candace,

Taking it closer to bedtime with his doctors permission will probably help. While the side effects should be less than most protocols, there can still be the nagging issues of headache and fatigue. Even though their claim of fewer sides is good news, they are still powerful medications that can have noticeable effects at times.

Since he has been on treatment approximately two weeks, he should be getting fairly adjusted to them. One common complaint with Sovaldi backbone treatments is headache. If he isn't drinking a full gallon of water every day, he isn't drinking enough. The first sign of inadequate hydration is a headache, sometimes severe. As long as he consumes the required amount over the course of the day, he shouldn't experience an increase in the headaches as a result. Even if he has to get up and use the restroom because he's drinking so much, it's totally worth it. Have a glass of water next to the bed and if he wakes up, take a drink.

Check with the doc and see if moving the admin time to bedtime is alright. It should be as long as you do it gradually. The doctor and pharmacist can advise you correctly on how to accomplish it. Ask about using some Tylenol or similar, for the headaches and any pain relief necessary.

CandaceV · Senior Member

Just an update...he takes the pill at 3pm, by 7pm he has a headache and feels "like somebody beat him up". He lays down for a couple hours, feels a little better except for the headache, which only goes away after sleeping all night. He's drinking a lot of water and eating well.

Would it be a good idea to take it nearer bedtime? Or would the headaches get worse because he's sleeping and not drinking water?

CandaceV · Senior Member

Thank you, Cheddy. I don't deal with death well anyway...but I always find my way through it. Sorry about your doggy, hang in there, it does soften with time. Lots of time.

Cheddy wrote:
Candace,
We lost our dog 2 1/2 years ago and miss her every single day.
I don't know if I can re-dog or not, too hard to lose. My heart goes out to you big time.
Another hurdle and I hope you have a ton of good memories and gratitude.

Cheddy

CandaceV · Senior Member

Our other 2 dogs are moping and watching for him out the front door, it's heartbreaking for us. We'll get through it, just like all the other times. The pharmacist did call back in about 10 minutes...aspirin is safe, but once in a while, not every day. Back on the water for sure.

Tig56 wrote:
Finding the comfort you seek takes time and if you're like most loving pet owners, the memory will turn to a smile one day in the future. I couldn't bring myself to go out and bring another dog home. I understand the bond and haven't been ready to go there again. I foster and dog sit all the time. I get a lot of enjoyment from that. We also have one more cat that thinks something is wrong. We went from a house full to a single cat in a short period of time. Knowing they all lived the lives of four legged royalty has helped us know they lived happy lives.
I'm glad you called the pharmacy, lets hope they get back to you soon.

CandaceV · Senior Member

Thank you, Canuck. I don't think he had enough water today either, he just wasn't thinking enough about it today.

Canuck wrote:
So sorry about the dog today. I too know the pain. We also have had some heart-wrenching losses, recent and prior, human AND furry - so finite. Hard stuff.
We "might" choose to never have any fur in the house again. We'll see.
Re: the headache, I can add nothing to what tig said, except to be SURE he is drinking lots of water! C.

Cheddy · Moderator

Candace,

We lost our dog 2 1/2 years ago and miss her every single day.

I don't know if I can re-dog or not, too hard to lose. My heart goes out to you big time.

Another hurdle and I hope you have a ton of good memories and gratitude.

Cheddy

Tig · Admin

Finding the comfort you seek takes time and if you're like most loving pet owners, the memory will turn to a smile one day in the future. I couldn't bring myself to go out and bring another dog home. I understand the bond and haven't been ready to go there again. I foster and dog sit all the time. I get a lot of enjoyment from that. We also have one more cat that thinks something is wrong. We went from a house full to a single cat in a short period of time. Knowing they all lived the lives of four legged royalty has helped us know they lived happy lives.

I'm glad you called the pharmacy, lets hope they get back to you soon.

Canuck · Guru

So sorry about the dog today. I too know the pain. We also have had some heart-wrenching losses, recent and prior, human AND furry - so finite. Hard stuff.

We "might" choose to never have any fur in the house again. We'll see.

Re: the headache, I can add nothing to what tig said, except to be SURE he is drinking lots of water! C.

CandaceV · Senior Member

Thanks for the kind words, and sorry to hear about your cats. We also had the brother of the dog we put down today, he's gone too, so they'll be together again too. I have a number to the 24-hour pharmacist from the specialty pharmacy, so I've left a message and waiting for a return call. I believe we have Tylenol. Thanks so much for your help. (Do you know how hard it is not to run out and get another dog?) Send me some of your strength. We're too old for anymore dogs (unless we adopt a senior). HELP ME :)

Tig56 wrote:
I'm sorry to hear about your dog. That's so difficult a time for the family. I can understand the stress and resulting headache. It wasn't that long ago I had to go through the same sad experience. It still breaks my heart, but it will get easier to live with. We just lost two cats over the past 6 months. They all grew old together and are together still.
We can't advise you on what you can or can't take while on treatment. Aspirin itself has properties that affect several things and I wouldn't recommend that anyway. My doctors told me to stick to Tylenol (Acetaminophen) if the need for something arose. I can find no adverse effects listed between Epclusa and Acetaminophen. You might call a 24 hour pharmacy for confirmation though.
A heating pad on low to the back of the neck may provide some relief. The stress probably has the muscles in his neck wound tight. I hope he can get some sleep tonight. Please pass on my sorrow to him...

Tig · Admin

I'm sorry to hear about your dog. That's so difficult a time for the family. I can understand the stress and resulting headache. It wasn't that long ago I had to go through the same sad experience. It still breaks my heart, but it will get easier to live with. We just lost two cats over the past 6 months. They all grew old together and are together still.

We can't advise you on what you can or can't take while on treatment. Aspirin itself has properties that affect several things and I wouldn't recommend that anyway. My doctors told me to stick to Tylenol (Acetaminophen) if the need for something arose. I can find no adverse effects listed between Epclusa and Acetaminophen. You might call a 24 hour pharmacy for confirmation though.

A heating pad on low to the back of the neck may provide some relief. The stress probably has the muscles in his neck wound tight. I hope he can get some sleep tonight. Please pass on my sorrow to him...

CandaceV · Senior Member

My husband has an awful headache...stress & grief...we had to put our dog down today. Does anyone know if he can take an aspirin? It's late and the doctors are closed. Thanks

CandaceV · Senior Member

Hi Tig, we buy that stuff in the large bottle. He's terribly allergic to poison ivy and seems to get it every summer because he's such an avid gardener and we can't seem to eradicate it from our property. He spends entire summers with pink dots on his arms and legs. One summer many years ago, we went to an outdoor concert and we sat in it watching a nighttime concert across the river. We just didn't see it and sat down in it. He had huge blisters from that stupid move. There are scars. We take a blanket to sit on outdoors ever since. I don't appear to be allergic, never had it, and never want it. Itching is bad enough from mosquito bites, I can't imagine the suffering with poison ivy.

Tig56 wrote:
Candace,
If you need another recommendation for lotions that soothe and relieve the itchy skin and rash, you might give a product called "Caladryl" a try. It's a combination of Calamine and Benadryl. It's great stuff and helped my Ribavirin rash immensely. Good for all kinds of skin discomfort.

CandaceV · Senior Member

Hi Linux, he is drinking at least that much. The itching stopped, he's back to using deodorant again. I will report it to his gastro today. He appreciates everyone's help here, said to tell all of you. Of course I do as well :)

Linuxter wrote:
Hi Candace,
Just a reminder for your husband to be sure to drink 3-4 liters of water per day.
Keeping up with that level of hydration through treatment should keep any side effects at bay.
Do keep the doctor informed, hopefully this is just temporary, glad to hear that the Benedryl is working.

Linux

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