Hep C Discussion Forum

Canuck · Guru

RE: All aboard the "Harvoni" Treatment Train

5-1-18 · Guru

Cheddy wrote:
Hey 5. My kitty's name is Cheddar (and subsequently known as Cheddy). He's the big boy in my avatar. Couldn't love him more.

biggrin biggrin biggrin

she was my only child

Cheddy · Moderator

Hey 5. My kitty's name is Cheddar (and subsequently known as Cheddy). He's the big boy in my avatar. Couldn't love him more.

Cheddy · Moderator

Karyl, What a crossroads. You are gaining and losing at the same time. Losing a pet is soooooo hard!!! They really are not here long enough. I'm so sorry for all you are going through - daughter, dog, drugs - 3D challenges. It's a tough time, indeed. I am very glad that you are on the road to recovery, though. Things will take on a different light when you are HCV free.

Rest. Bask. Pull yourself through. Write the best history book you can.

Cheddy

polosilver · Senior Member

Karyl -- you are nearly pulling into the station, and I am happy for you! Its an amazing journey and the healing process continues as time passes even after UND, Club Zero and all the treatments. You will continue in new ways after crossing the finish line.

I too am saddened by your prospects of losing a furry dear friend and family member...its a heartbreak losing them. May your fond memories comfort you...so much bitter & sweet in this life. Be well, and don't forget to drink lots of water these last couple of weeks!

ps

Tig · Admin

Two weeks will go by quickly and this will go down in the Carol history book. You’re almost there! The finish line is right in front of you.

I’m so sorry about your fur baby. I had to make the same decision a few years back with my Border Collie/Aussie Shepherd mix. He was my very best friend and I think about him daily. They bring such joy to our lives. Their time with us is way too short.... :/

5-1-18 · Guru

karyl, that is sad news about your furbaby. cry , my cat cheese will be there to greet dottie when she gets to the rainbow bridge. i'm glad you will be there with her.

congrats on the last 2 weeks

Karyl · Veteran Member

Thx everyone. Today is 1st day of last 2 weeks. Anxious to get this train ride over. Update on our dottie. She's doing worse every day and we will be making arrangements for a vet to come to our house in the next few days to send her to where good doggers go. We are sad but she's a very old lady at 11 yrs .

polosilver · Senior Member

Wow, Karyl!!! Woohoo...first step into the Club Zero...welcome...

Canuck · Guru

Copied my post to you, to be over here - wasn't sure which thread it should be on - just happy for ya! : )

Hey Karyl,

Big congrats on your first UND! Feels good eh? Good for you to have gotten yourself here. Milestones! You are leaving this HCV in the dust and on to better things. It won't be long now and you will soon be finished. Your treatment, like mine, was only 8 weeks, but we know how long things can feel, don't we (considering all things).

Tig mentions (that if your EOT is about Nov 18) then, 12 weeks from EOT would be early in Feb 2019, and that's when your EOT+12 week labs should be due (for your SVR12).

But if your doc wants to see you earlier, for anything else, at all, I would go. Many docs do choose to see pts. and may well wish do various labs at EOT, in addition to seeing you and doing labs at EOT+12 weeks - so, if she wishes to see you earlier, I would go, the more labs they have on you the better (I think). Just make sure you do (at minimum) get the EOT+12 week SVR 12 labs done in Feb.

I hope things are going a little easier for you around your house right now. Very good news, your lovely UND and nice dropped ALT/AST's! : ) C.

Cheddy · Moderator

Terrific!!!!

Tig · Admin

Fabulous!! Congrats, Carol

5-1-18 · Guru

woohoo ,

Karyl · Veteran Member

At doctor's right now. Lab work says no virus detected!!!!!! Woooohoooo!

5-1-18 · Guru

i'm so glad you got your lab requests and that you kept on it!

Karyl · Veteran Member

Just called the dr's office and the nurse told me she DID order tests but the office ppl dropped the ball and forgot to call me. oy vey. So I guess I'll dash down to the lab so she has the results on Monday

Iris Dragonfly · Guru

Hey Karyl what a bummer about your head, wonder why now? You have been under more stress lately, I'm sure that contributes. I take aspirin, it's my favorite pain reliever. It's really unfortunate when our Dr.s are not on top of things, I tend to keep a flame under them or I swear, they would forget to follow up completely. I had the gal from the Pharmy who sent the meds call for a final follow up, when she asked for a rating of the program I couldn't give her all the stars, she was supposed to have checked in on me but didn't. She did however answer a ton of questions before treatment, and I had dr's and the Pharmy on call if I had any questions, or I could have called the gal but I didn't. She did however report my weird side effects.

The water was hard for me to keep up on and maybe that is why the sides were so weird but the pharmacy said it was not imperative that I drink so much water, maybe slack off a bit (by a glass or three) and see if there is a difference? I know this is counter to what everyone has said, but if it is a problem....um...ok, please don't everyone kick me at once.

Keep on top of those guys... sometimes I think they make their money on co pays anymore.

BB, Iris

Karyl · Veteran Member

In the middle of my 5th week. I have daily headaches now and also feel like I'm floating down the river with all the water I'm drinking. On the plus side, my skin looks so much better these days. Annoyed with my dr. I called her office to ask if I'm to get bloodwork done before my appt next week and I haven't heard back in 3 days. Will call again today. I do NOT want to have to pay for 2 high co-pay specialist office visits to have her tell me to go to the lab then come back for the results.

Canuck · Guru

Really too bad karyl! For everyone - there will never be any good time for these upheavals - as you said you have done everything within your power to help her - you need to concentrate on yourself right now. Steel yourself to do whatever is necessary to take care of yourself first (you can always decide to try to help further/assist/intervene with them in future) but, for the time being, you are your patient whom you need to take care of.

You are right (you can't make her) and Shemp is right (until she is ready she is on her own journey), under these circumstances, for her AND you, this physical separation sounds best. Disappointing and sad, frustrating and crushing (I am sure) for you, to have to go through this, and for you to see them going through this, but it is what it is and you are the one who is forced to act appropriately under these conditions - protect number one, you are in a vulnerable position of transition. Now is not the time you should have to be caring for her or dealing with her stuff. You need to concentrate on your health and well being.

You will later be healthier, stronger and better equipped to try (and try again) with them in future as you decide. You need to adopt a self-preservation pose for now. C.

Hoodietree · Senior Member

Hang in there Karyl it's gets better I promise.

Have you considered Al-Anon for support in dealing with active alcoholic family members? I can't understate the emotional roller coaster treatment has been for me, so if you're anything like me you might need to take extra good care of yourself, and that may include getting outside support If you're not already getting it.

It wasn't until week 10 that I started to feel better, but you might start feeling better sooner. But even "feeling better" just means I have more energy, so that's problematic because I have to scale back on the coffee otherwise I get anxious. It's a constant balancing act dealing with the fluctuations in energy and adjusting sleep and exercise if and as appropriate. good luck keep up the great work.

5-1-18 · Guru

karyl, as hard as it was i'm glad you got this sorted out for your wellbeing. stay strong

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.

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