Hep C Discussion Forum

5-1-18 · Guru

RE: All aboard the "Harvoni" Treatment Train

boxers · Veteran Member

So sorry to hear about your struggle. The physical struggle is bad enough without the additional emotional struggle. Take the advice of these warriors, they have your best interest at heart.

Cheddy · Moderator

Ugh. Stress now?! Not what you need. I think Shep is right. Take care of yourself first.

Sorry about your daughter. That must hurt. I hope you can practice some detachment for now. Maybe the separation will do her good.

Treat yourself well, Karyl. Find peace where you can and be well!

Shemp · Senior Member

Karyl,

Sorry to here of your family stresses.One thing I know first hand is you can't get someone to seek help for any addiction until they are ready.They're on their own journey.You have to be most concerned about your own It may sound a little cold,but you have to take care of yourself first.

Karyl · Veteran Member

I'm having stress with my daughter this past week. She's a practicing alcoholic and lives with me with her son, my grandson. I have done everything to help her, but I can't make her go to rehab or take the meds our family dr gave her. We had a blow out and I told her I was moving and have been apartment hunting. Looks like she's moving instead but the stress is incredible.

Tig · Admin

The one thing I have realized with all of these treatments, is they will throw some curve balls at you occasionally. For the most part, they are side effect free, but we all know how they impart extreme fatigue on us, at times anyway. Those are the days you have to take it easy, drink some electrolytes and do as little as you need to. If you think back to the last couple of days, did you forget to hydrate as much as usual or not get as much rest as you may have the few days prior? Sometimes, that's all it takes to wipe out your energy reserves. Even though these are side effect free, they are still a powerful antiviral drug or combination of drugs and it's attacking, with a vengeance. Your metabolism is working overtime to keep up. That's why you end up so tired.

Karyl · Veteran Member

As a matter of fact, today I'm dragging. I might not last the day at work. First time since Day 9 I felt bad

Karyl · Veteran Member

Day 19. Mostly side effect free but woke up tired to the bone. Yes, I'm drinking water. Yes, I'm trying to get lots of sleep. Just feel so sluggish. Waiting on that speedy feeling people keep talking about.

Cheddy · Moderator

Good one Karyl. Sorry about the zombie state. Count on changes. I hope you continue to sleep. That stuff is medicine.

5-1-18 · Guru

hahaha, yes karyl, that is how it feels! thanks for the pic

Canuck · Guru

It's early for trick or treat!

But I am glad you got a treat last night - a nice well-deserved needed restful sleep. smile C.

Tig · Admin

OMG! It took me a minute to gather myself after that, Carol! I know exactly the feeling. There were mornings when I felt just like that. Scary!

Karyl · Veteran Member

btw, this is an actual photo of me on treatment. wink biggrin

Karyl · Veteran Member

My hepatologist knows the drugs I take and didn't object to any of them. I know about benedryl but I am out of it and need to pick some more up this weekend. That said, a whole benedryl and a whole xanax both put me in the zone in the morning where I just can't get moving and feel groggy until the afternoon. That's why I only take a chip of the xanax or a half benedryl. Sucks being such a lightweight. I did however, sleep last night! Hurray!

5-1-18 · Guru

karyl, did your doc prescribe that for insomnia already?

i took my nite time 1-2 mg of valium to sleep during tx but had been taking it on work nites already.

seriously, i can sleep like a log if i don't have to work the next nite, but not so much if i have to work blankstare cry

but that's ok cos the valium works for me and i only take it 3 times a week now cos i work 3 days a week.

this week i only worked 2 days and didnt need the valium the other 5 days...

so... take as prescribed if that gets you some sleep. sleep is important.

but benadryl is good too if you can take it and it helps

Tig · Admin

If you want to try something less potent, have you ever tried Benadryl for sleep? That is also an accepted (no adverse reactions) combination. I have taken all of the Benzo class drugs at one time or another and often found Benadryl to both effective and left day after effects that the Benzo’s can impart. 25 mg of Benadryl is effective for me, but recommended doses allowed for sleep are 50 mg at bedtime. Like Canuck mentioned, always check with your healthcare team before adding any medication to your treatment regimen.

Canuck · Guru

Bummer about the not sleeping well! I hope you can figure it out and get a handle on it very soon - like tonight!, to make up for your needed rest. Hope so. smile

Drugs.com has this handy checker, but a doc or pharmacist is better. Besides, it's good to bump heads with these people on your team if you are not sleeping well, as (1) they may want to know, or might just be interested to know, and (2) they could have another drug or product suggestion for you, that might aid your sleep. Ya never know.

... https://www.drugs.com/drug-interactions/harvoni-with-xanax-3567-16903-133-54.html

"Benzos" is not listed as contraindicated in the Harvoni monograph that i have ever read .

... www.gilead.ca/download_file/view/19/156

Karyl · Veteran Member

Not sleeping well past two nights, makes for plenty of afternoon fatigue. Other side effects are GONE. Thank goodness. I'm wondering if it would be ok to take about a 1/4 of a xanax at bedtime to help me sleep? George gets frustrated when I toss and turn and moves to the foot of bed.

Canuck · Guru

hahahaha Karyl, duh ... I'm a little slow, I was just enjoying the kitty pics until it finally dawned on me what the yellow scribbly thing was all about. Oh my. heehee

I so miss my kitty (and dog), think about them alot, and I also ponder about having a pet again, a lot!

Ya, sides don't really tell us much, as far a judging how a treatment is working (dropping LFT's do though!). wink smile

Same for folks who do not feel ANY sides, who felt NOTHING when on treatment, they have wondered if the drugs were even working! Kinda like "tkflex36" who suspected at first that he had been given a placebo in error, rather than the potent trial drugs he was actually on!

Can't judge treatment effectiveness by side or by no sides. Labs tell us the story.

I'm really glad you have had a few days of feeling not too bad - hopefully you have rounded a corner and will not feel as yucky going forward, and perhaps you are now used to the drugs and even if you feel something, it may be less disruptive/uncomfortable for you. I hope so anyway. Later, C.

5-1-18 · Guru

thank you karyl, i love the pictures

Karyl · Veteran Member

Well, this seems to be the 3rd day in a row without side effects!! Hurray! This train ride is going smoother than I thought it would. For your Wednesday enjoyment, here's a couple pics of my "kits" the first is their baby picture and the second is George on "Trump Your Cat Day"

Tig · Admin

We used to base treatment effectiveness on the degree of side effects. The old treatment drugs worked by causing horrid SFX and we expected them to be vicious and they were. They caused severe anemia and fatigue, so we recognized that something good was happening, even though that good, was about as bad to deal with as anything imaginable. The old standards of care, actually used chemo therapy agents to accomplish the goal. These new DAA’s work differently, thank goodness. They disrupt the virus ability to replicate at various positions of the genetic chain. They are able to do it with far fewer harsh side effects and those that do can often be avoided with simpler measures, like increased hydration.

That was a long explanation to your short question! Let me summarize by saying, yes, side effects are representative of something going on. These new treatments are so effective, I would say that any side effects are just an indication that the drugs are at work, versus them being an indication of a better response. At 95+% success rates, the response is almost a pre determined success.

Karyl · Veteran Member

I am wondering if having side effect from day 1 indicate a good response? For the first 8 days it was awful. First tummy and dizzy and unsteady. then the terrible fatigue in the afternoon. But Day 9 brought with it NO SIDE EFFECTS WHATSOEVER and again yesterday. WooooHooo! And YES, get a George/Cheddy/Isis cat. Cats are great. George sleeps right next to me with his little head on the pillow and covered with our blankets. So sweet. And btw. I got the pair of them at 4 weeks. I named them George Burns and Gracie Allen. Soon to become King George and Princess Grace and finally St. George and Amazing Grace. I miss Grace incredibly but she had a good long life with her brother who loved to chase her and bite her in the butt.

Canuck · Guru

Hey Karyl,

Bonus! (the rheumy got you an early ALT/AST!!) Good early feedback - drops already! And at only 5 days on Harvoni! ALT from 29 to 20, and AST from 29 to 22. Those drops (I feel) are NOT coincidental, NOR inconsequential, to me (for me) I consider them substantial enough and significant enough to be reliably indicating a very early strong response to your Harvoni even at only 5 days. In trials (with many of the new era DAA's) they did note these early drops (often noted by the 4 week mark) but sometimes seen earlier. During trails, for instance (when bloods were drawn very frequently), sometimes these drops were seen to be occurring starting as soon as within the first few days. It is nice to be able to have early feedback (any feedback really). biggrin

Glad you are also getting other (whole) body things seen to, seeing docs as required, and resting as best you can.

So ... now i am wanting a George cat, and a Cheddy cat, and a Isis cat of my own! ... Hey what did you think of isiscat BTW. wink

Later, C.

I liked Lamassu's news too! Nice those improvements post-treatment, and, the news about the newest DAA drugs finally being recently placed on that particular available list!

Karyl · Veteran Member

Sooooooooooo...I just got back from the rheumatologist. She confirmed that my arthritis is "viral" caused by my hep c. I asked her a lot of questions and she said yes, it can cause arthritis flares. yes, it causes skin rashes and other problems, yes, it causes bone erosion, affirmative to all my aches and pains. This is a monster we have here. But the good news is she says most of my symptoms should clear up when the virus is gone.

Cheddy · Moderator

I was having hip pain and milder joint malfunctions. Many silly doctors write if off as old age, but my GP ordered X-rays, and later told me the results were beautiful and sent me to a physical therapist. Her work was great, but the pain kept moving to new locations. Simultaneously, I was diagnosed with HepC.

It's been a couple of years and gradually I quit thinking about it. I don't have those problems anymore.

Karyl · Veteran Member

Had the same experience with my drs. They said osteoarthritis. Myalgia. allergies. NOT myhep c. Then I switched ins when I went on Medicare and went back to my caring primary care dr who wasn't on my old plan. He immediately sent me to a rheumatologist who immediately sent me to an infectious disease dr to be treated for my hep c. All current drs concur my symptoms are all probably caused by the hep c.

Iris Dragonfly · Guru

All aboard the

lamassu · Senior Member

RE: All aboard the "Harvoni" Treatment Train

Tig · Admin

It can definitely cause arthritis, Iris. It will also aggravate pre existing joint disease and inflammation. HCV is not only a silent killer, but a fire, capable of torching everything it touches. The list of extra hepatic manifestations related to Hep C is voluminous...

The destruction of the virus can and does help prevent further disease advancement, as well as allows your immune system to start functioning correctly. That alone can reduce the joint inflammation directly related to chronic HCV infection, hence your improvements. There will be several great things noticed, as you continue with recovery.

Karyl · Veteran Member

Iris, my rheumatologist told me that with my symptoms and the bones eroding it was either rheumatoid arthritis OR pseudo rheumatoid arthritis caused by hep c.

Iris Dragonfly · Guru

All aboard the

Karyl · Veteran Member

Got the results from last week's blood work. After just 5 days on Harvoni my AST dropped to 22 and ALTto 20. These tests were requested by my rheumatologist. All the other test results turned out OK so it looks like it's the hep c causing my arthritis

Cheddy · Moderator

RE: All aboard the "Harvoni" Treatment Train

Canuck · Guru

Karyl,

I'm with 5 - I am glad they pushed you off home - take your leave when you can and as needed. I am glad you are listening to your body and are paying attention to everything you need to.

Hopefully your adjustment to the treatment drugs will be short and a fairly smoothly transition, perhaps things will not interfere for you too much or for too long. My fingers are crossed that with good rest, lots of water, eating well and treating and soothing yourself as good as possible, your treatment IS going to become easier for you as you go along.

If you did not already have a "pre-set" med-taking plan for your Harvey and PPI, I would have said (otherwise), if you could have, to try taking your harvoni with a meal. Food "sometimes" helps minimize/buffer/mask some sensations/gastric issues (perhaps a bit) that you may be associating as happening after you take the harvoni, additionally, you may find the gastric things may just end up decreasing (all on their own) over a bit more time of being on these meds - some people DO seem to get "used to" the drugs, and the gastric issues become less. I hope and expect so for you anyway.

Nice that you have all these other Harvey-folks around here and in near threads (and all over this site) to compare notes with. Aside from specific Harvey symptoms and such, just things like what you and "CandaceV" (for instance) found in common - she and her husband were also pleasantly surprised at the generosity of others when they had help to cover co-pay for epclusa by "PAN".

We love people, (and critters of all sorts) around here, as you could probably guess (by the way we were fawning all over your George) - you'll have to search up "IsisCat" as well to see that cutey (For LC and Isiscat).

Modify your work as best you can to suit how you happen to be feeling ... 5 has it correct when she states ... "in no time you will be back to a regular schedule but for now the harvoni is queen for the day , the main event" ... so, I agree with 5, just go with the flow, treat yourself like a Queen also, modify things where you have to and as you need to, but I am betting (overall) that the 12 weeks will go smoother and faster than you might be thinking or expecting. Take leaves or vacation (or not) or whatever you can make work for you, just try NOT to push and stress yourself, this will only be 12 weeks (out of the rest of your life). smile C.

polosilver · Senior Member

Thanks Canuck! Good to see you e-voice and thanks for the good words. I was definitely clicking my heels when I got my results this week. It seems the 'severe calcification' was some error in interpretation of the previous single ultrasound...I've now been interpreted from head to toe on the inside and my kibbles & bits are minimal and I will continue to use caution in food choices. It was a bit of a scare and a good reminder to remain vigilant and make wise choice. Hope all is well up there in Canada land. What a beautiful country you reside in.

ps

Canuck · Guru

Hahahaha POLO! I appreciate seeing you switch to using that new avatar! I loved that carboy one when it cruised through here once before - glad you chose it to display it as your new personal best, (you do us all a great service by owning it and showing it) as it is such an important message (and reminder), and, that pic gets it across in spades! That image always makes me giggle. heehee

I am glad all your imaging is looking good and/or better - just what we want and need, and that you are feeling better (better than the old days), and, better than you expected or knew you would! Even bigger bonus. You guys call it the Harvoni bomb for good reason. So MANY good people Harvoni has helped!

Many of us feel the same eh?, we (of the new DAA era) were so very lucky to get these drugs.

Nice to see your positive posts and ALL the good Harvoni feedback here. wink C.

-- Edited by Canuck on Saturday 29th of September 2018 10:28:16 PM

polosilver · Senior Member

Karyl -- you are doing the right thing,,listening to your body and letting it heal, just follow your own yellow brick road to the land of OZ, and click those Harvoni heels..you got to play on love...another starship tune..good message in this one

https://www.youtube.com/watch?v=Qi9Pkyg501I

Karyl · Veteran Member

RE: All aboard the

Karyl · Veteran Member

Hoodie. Lol. Yep. Thank Dog.. or thank all the gods and goddesses... I looked at their Website and there was a place to make donations so I decided that after my treatment ends I'm going to add them to my list of monthly donations and pay it forward in some small way.

Hoodietree · Senior Member

RE: All aboard the "Harvoni" Treatment Train

polosilver · Senior Member

I love Harvoni, it gave me so much more life back....my overall health is improving a year later. I just got great news. I had a round of ultrasounds nearly head to toe on Monday and doc says all is looking good with minimal plaque, and even my liver is toning up and looking better. Righteous!

..and now a special song

Rest in Peace Marty Balin, loved watching them play and sing back in the day..

https://www.youtube.com/watch?v=F2zds1aRwAo

Hoodie --- love your harvoni healing lifeback plan!! Awesome...you go girl!!

-- Edited by polosilver on Friday 28th of September 2018 10:43:47 PM

Tig · Admin

I'm familiar with the Healthwell Foundation, we have their contact information here on the forum. A very good organization, that has done excellent work for many people. Nice to know they came to your aid.

5-1-18 · Guru

i too got 0 copay...it's so good to know there are good ppl out there wanting to see us get well

Karyl · Veteran Member

I'm a humanist and have no belief in any higher power other than science but I do believe we are all in this world together so it's our duty to be kind and do as much as we can for the other occupants of the planet. I am involved in a homeless outreach and I give monthly to ASPCA and St Judes Children's Research Hospital. That said, during this time I've been blessed by other's kindness. #1 My boss is quite understanding. I'm taking today off because at month end my desk isn't full of stuff and the boss said "go home" at 2pm yesterday, and then "take tomorrow off". and #2 and this is the biggie.....I'VE FOUND OUT WHO THE WIZARDS ARE WHO GOT ME MY HARVONI FOR ZERO DOLLARS!!!!!

Yesterday's mail had a letter from The HealthWell Foundation. This is where that other wizard at the pharmacy applied to for me for assistance. The letter states they have given me a 12 month grant of $30,000 from the Hep C Fund. This is what is paying for my high co-pays. Please spread the word. The Foundation is for people who HAVE insurance, including medicare etc and who's household income is less than 500% of the federal poverty level. That is most of us middle class folk. If you know someone who needs this kind of help like I do tell them to go to www.healthwellfoundation.org

Good morning everyone! George is gobbling up his breakfast and it's going to be a beautiful day!!!!!!!!!!!!!!!

5-1-18 · Guru

i'm glad they sent you home karyl. maybe they can give you a flex schedule for now or go home when you need to. see if you can work fewer days a week for now. or check into the fmla or dr's note for fewer days.

yes, water and sleep and hang in there.

work was the hardest for me, not wanting to let them down....

plus the sides did come and go , i never felt really well but didn't always feel sick either.

i had to switch my time from 3pm to 3am becos of the side effects. i did it carefully under the supervision of the pharmacy..... i went back an hour or two at a time after a 4 hour jump back. finally arriving at the time that worked best for me to sleep thru.

i go to bed at 5 am pacific time since i work a late swing; and they let me go home early every nite.

in no time you will be back to a regular schedule but for now the harvoni is queen for the day , the main event, the focus of the day.

i love the pic of the siblings and so glad george is being there for you

-- Edited by 5-1-18 on Friday 28th of September 2018 06:03:53 AM

Observer · Guru

Karyl,

i really like your avatar pic of you and your george.

it sounds like your morning routine is good, taking your pill then resting in bed until you can have your morning java and get your day going.

its pretty hard for anyone to predict how long these sides will affect you, I was on different drugs but I found my sides morphed from one thing to another.

Most of our members found their system and sides mellowed out after one-three weeks so treat yourself super nice, drink water till youre frequently floating to the loo to help flush the drugs and virus out and hang in there. smile

Hoodietree · Senior Member

Oh my gosh I could never do that! Youre a lot tough than i am. Hang in there it gets better.

Karyl · Veteran Member

I get approx 7-8 hrs a night. I have sleep issues and wake often during the night. But I go to bed early and stay in bed resting at least for around 10 hrs. I have to take my pill with my PPI on an empty stomach so I take them as soon as I wake up with a big glass of water and then lay in bed for a while before getting up to make coffee and start my day.

Hoodietree · Senior Member

Hi Karyl my advice is to sleep 10 to 12 hours a night. If you have to wake up at 7 AM for work, set your pill time to 7 PM and be in bed by 730. You might wake up naturally around 630 without an alarm if youre anything like me. I found that getting approx 10 to 11 hours during the week and at least 12 hours on weekend nights really helps with my sanity brain fog depression and fatigue. How much are you sleeping now? You might need to bump it up.

I also start drinking water early and stop early so that I have a full night in bed without having to get up to use the bathroom. Ive had varying degrees of success on that one.

Heres what a good day looks like for me:

Drink 50 ounces of water before leaving for work

Drink 80 ounces of water throughout the day at work

Drink 25 ounces of water in the car on the way home from work no more water after this

Take my pill at 7:30 PM with a sip or two to wash it down

In bed by 8 oclock, wake up naturally around 630 before my 7 AM alarm

sleep sleep sleep water water water, lather rinse repeat. I have exactly 21 days left of this routine and then Ill add back in my morning hikes and yoga at EOT.

Edited to add: This routine was carefully honed through the awesome help of Canuck, Tig, 5-1-18, Iris, See the light, Observer, Cheddy and other marvelously helpful people in this forum. Follow their advice and youll be just fine

-- Edited by Hoodietree on Thursday 27th of September 2018 10:38:33 AM

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