Harvoni side effects at 4th week

[SpiderGypsy]

I found this place and read quite a few posts that others have placed. So I joined. I should have kept a journal starting on day one of taking the Harvoni, but I didn't. My fault.
One of the biggest problems I've had with taking Harvoni is the spaciness. I'm 57 this year and I thought being spacy was just cuz I'm getting older. NOPE ! Harvoni is causing me to forget constantly. I walk into a room and cannot remember why I'm there, or be talking to someone and completely loose the thread of the conversation. That's on top of the fatigue (all I want to do is sleep), headache (hadn't had one in 6 yrs) and aching worse than I then I ever have before. Here I thought that the arthritis, fibromyalgia and various pain and problems from multiple surgery's was bad enough. One of the main problems I have had from Hep C is the fact I have to take water pills like crazy. Partly from Hep C side effects (liver not making the right stuff to get my kidneys to work well) and bad veins in my legs, my legs and waist balloon with pounds and pounds of water. And my liver Dr. told me to quit taking it for now, so I am forced to lay in bed a lot. Luckily we have a Craftmatic Adjustable Bed, so I can raise my feet above my heart and get as much water out of my lower half as I can.
In 1988 when I got Hep C (blood from a hysterectomy) I didn't know I had it (famous last words) But I didn't find out till I dislocated my hip in 1996 and the rumatologist asked me about my symptoms and tested me for Hep C. So, I ran to U of WA, (who was the leader for Hep C research then) got talked into a biopsy without pain meds (WRONG) and they came back and told me that I had the liver of an 80yr old alcoholic (I didn't and don't drink) and if I didn't get a transplant ASAP I had 6 months to live. I didn't have health ins. then, so I started researching for myself. I started on a good diet, lots of vitamins and Milk Thistle (which I know kept me alive all this time). I searched for years to get on a clinical trials, but the only thing they wanted to get me on was the Interferon (No way was I gonna do THAT after I lost 3 friends to it). So now they finally come out with this new medicine that almost guarantees (95%) that the Hep C will be gone in 12 weeks and now that I have ins. I'm able to take it.
I go to Seattle on Wed. (My 4th week) to get a blood draw to see how the Harvoni is working on the Hep C. To tell you the truth, I'm scared to death. Everything I have tried to do to take care of myself has been an up hill battle to end all battles. I'm sure we all have looked in the mirror (after starting this) and wondered if "I'll" be one of the 5% that it doesn't work for. Like my hubby says "It's like a cancer patient who suddenly gets a magic pill", it's just too hard to believe.
So, now that you know a bit about me and what I am going thru right now. PLEASE please plz does anyone have any suggestions ? or idea's for handling these side effects ? I'll appreciate any and all replies. Hope you all had a Gr8 Holiday and I that we ALL are in the 95% category.
Thank you,
SpiderGypsy

[flyinlynn]

Hi Spider

I have also gone to UW a couple of times but currently I go to Swedish Liver.

As you have had hep c and is sounds like advanced cirrhosis I am really surprised they had you stop taking diuretics. I had been taking Spironolactone for several years now for my lower leg edema (swelling) and small amount of ascities (stomach swelling) due to cirrhosis. I am still taking Spironolactone while treating with Harvoni for 24 weeks.

Have you been evaluated for Hepatic Encephalopathy? That is also a symptom of advanced liver disease which can cause feelings of confusion and disorientation as well as sleepiness.

Here is a link about hepatic encelopthy:

http://m.medlineplus.gov/ency/article/000302.htm

Do you know your MELD score? It is a composite score of your bilirubin, creatine and INR blood test results The scale is from 6 to 40 and is useful in staging severity of liver disease.

Good luck on treatment hope you make SVR

Lynn

[keepingOnkeepingOn]

If you are experiencing this as a side effect from the treatment there is probably nothing you can do short of sipping water all day, take probiotics, eat a good diet, take it easy and ride it out until EOT. Otherwise the "forgetful confusion" is a symptom of the viral damage done to the liver and spleen. Severe confusion in some circumstances means a need trip to the ER to check for ensuing bleed out.

Notice forgetfulness, like drawing a complete blank, is associated with fatigue too. The moment you feel a wave of heavy fatigue you forget what the heck you were doing or saying. You'll have to focus more and then try to determine what you think it's from.

It happens to the best of us and if I I lose my train of thought I ask the other person what I was saying or doing... It's difficult to accept but it is what it is.
One time on treatment I went to the store and had to call home to ask why I was at the store... I just laugh it off.

Things are clearer weeks after EOT and gets better as the exhaustion leaves little by little.

[keepingOnkeepingOn]

PS your 'hubby' is right about the magic pill seeming too good to be true. It too can be amazingly difficult to adjust to mentally, of being on treatment to kill the virus. To think you get a shot at life. It's a whole new train of thought and can be overwhelming. Not many talk about the emotional and psychological aspect of going through treatment for the 'cure'.
***The most important thing is to take control of your thoughts and stay positive.*** Think in terms that you will be one of the 95% to clear the virus.
We have all been through so much with this disease. It's time to kill it. 2015 is the year where many get cured. You have a 95% chance of being rid of it this year.

[Dee1956]

Hey there, since you just started noticing the "spaciness" I would say it is the medication.  Even though interferon is not involved it still has to be a heavy duty drug to kill the virus.
I would say the best thing you can do is to assume, for you, it is a side effect of the treatment.
I know in the past when people would try to find out what was happening when they were on tx others would say it had nothing to do with the medication.  Over the years it was discovered that we are all individuals and react differently to every medication.
The positive is that it is a much shorter time period than in the past so will soon be over.  In the past the SOC was only about 40% so this is really good for all.
Like Lynn said try to drink water, water is really important during all of these treatments.  Dehydration can add to mental and physical effects.
Take care, be kind to yourself, rest, hydrate
Dee

[Dee1956]

P.S. Koko is so right, try to control your thoughts.  I let mine get away from me and thank God my husband was here to tell me I was in charge, not my feelings.  It might sound silly but it helped me get to all my doctor appointments when I didn't "feel" like going
My best, Dee

[SpiderGypsy]

Thanks for all the info. I was writing all about everything (LOL) and I lost my internet connection for a minute and I think I lost it all. BUMMER !! But, just to let you know I'm back on the furosemide and spironolactone and slowly losing the 30 lbs of water weight that climbed on board (from the waist down, yuck). I copied all the info that I was reading before I lost the internet, so I will try to read it tomorrow. It's 1 am now and I'm hurting so bad I need to lay down and maybe (if I'm lucky) get some sleep.
If all else fails, I will be back on here when I get the results of the blood test they did on Wed. I've got to call Harborview on Wed.
Thanks again for your info and caring. Take care Spider  

[GP7852]

Start exercising,and if you already are increase it.Join a gym and do cardio.Dont worry about lifting any weights.The cardio will help keep your mind sharp and the rest of your body will benefit too.Exercise is very beneficial when on treatment.
                                              Good Luck

[Ekkiemom]

Hi there, happy you reached out to the community. I Struggled with the same side effect as you plus some fatigue. This is one of the more common sides but very doable.
I have just finished 24wks of Sov/RIBA and found myself searching for words but my brain couldn't seem to find them. Just remember to stay well hydrated as this is sooo important, listen to your body when it gets fatigued get some rest, it's telling you time to take a break and nap if you can even if it's just 30 mins, this is the time your body will heal itself from these powerful drugs. Remember to not over do it, hydrate, rest and stay strong, fight the fight and focus on slaying the dragon. It will be over before you know it.
Keep us up to date on your progress, this is a great group of caring and knowledgeable people to hel you walk thru the Tx!
Take care and speedy SVR
PEACE
DEB

[Livelife777]

Hi Spider
Just wondering if things have improved for you?  
.....Kim

[Tweetie54]

Hi spider,
it is a side effect of the tx...spaciness.  Haha, me 2. You're doing the right things, eating well,  etc. DON'T take any vitamins while on tx tjo, thats what my doctor says. He says it can interfere with tx. I was SRV at 25 days of tx but my doc wants me to continue for the full12 weeks and the success rate is 93 to 98% at 12 weeks. So, good luck and eat healthy. :-)

[keepingOnkeepingOn]

SVR is sustained viral response which comes weeks after ending treatment. Of course you can't stop taking the meds once you are undetected at 3-4 weeks and IF you haven't completed treatment yet. It's important to keep the info straight.

[flyinlynn]

Yes the "success rate is 93 to 98% at 12 weeks." you mentioned is 12 weeks after end of treatment (EOT).

The 93-98% SVR means you have had a sustained viral response 12 weeks after taking your last dose of medicine. At that point some say you are considered cured some feel more confident about saying cured is 24 weeks SVR.

Good luck on treatment
Lynn

[Dee1956]

You are doing great! Hang in there, it does improve!
Take care Gypsy, you are also doing well.
I think the confusion has something to do with how strong the drugs are, at least with interferon, riba, incivek I was told it really ramps up your immune system.
It makes sense if you think of what you feel like when  you have the flu.
That is the body fighting it off.

Hang in there guys.

[TPropane]

It could be a liver side effect, such as encephalopathy. what does your doctor say about your ammonia levels?  They gave my brother lactulose. I personally cut out most salt, keep my gut moving by eating mostly fruits and veggies, probiotics, drink lots of water and of course no drugs or alcohol. i don't even take advil anymore.
everything gets filtered through your liver. Your gut and your kidneys kind of take over filtering impurities. keep them moving.
my dear brother didn't treat his hep c, kept taking oxy (tho he quit drinking), kept eating a meat heavy, fatty, salty diet. he lasted 5 years with end stage liver disease. i miss him and can only use his death as "but for the grace of (god) go I."  He was 59, he died 11/14.
Week 2 on harvoni
Hep C 1A tt
F4 cirrhosis
relapser treated 2011 with boceprevir, ribaviron, interferon.
2nd time fingers crossed.
good luck gypsy.

[Hope4me47]

I was wondering if anyone out there that is currently taking Harvoni experiencing any nerve leg pain or pain in there lower back?

[coach4dreams]

Hi there
I just started my treatment 4 days ago .Yes i am having issues with cramping in calves knots in my back shoulder blades mostly.Insomnia spacey feeling fatigue right after taking it so i take mine late afternoon before my walk with Waif-err ,my dog it helps me to stay busy coach4dreams

[aprildone]

I'm sorry that the hatvoni is hard on you. sipping water thru the day is helpful. please keep in mind that once you have slayed the dragon, you can begin restoring your '80 year old liver' to one the resemble one of your age. the benefits of the drug outweighs the future vdevastation of your liver

[zzanna]

I just got Harvoni today and haven't take it yet. Is it better to take it in the morning or evening? I also take a heavy med for HIV, so should I take the two at different times. Are the first few days the worst? Should I plan to take it so the worst will occur over the weekend? I appreciate any advice. I'm excited to have the opportunity, but also a bit nervous.

[virt111]

You'll notice a great disparity of side effects from people, but my experience with Harvoni is one with no real sides other than elevated blood pressure.

I take it everyday at 11am without food and have no ill effects, whatsoever.

In terms of taking your HIV meds at different intervals, it should not be a problem either way. You may want to stagger them on the first couple of days to see whether you get any sides from Harvoni alone. There after, trying knocking them down all in one go and see if you get any sides.

Having said that, your doc or pharmacist should have made you aware  of any interactions. May want to put a quick call in.

Don't be nervous about Harvoni. It's pretty innocuous in the grand scheme.

Best of luck.

[Livelife777]

Only your Doc can give you a heads up on contraindications between the 2 meds.  You need to make sure that both of these heavy duty meds don't contradict the other.
Best to you
......Kim

[virt111]

FYI, here's a detailed PDF file for your reference:

http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf

[hepcandme]

I take my Harvoni in the evening

If I am sleeping soundly (ah, sleeping soundly) in the morning, I don't want to be woken to take my pill. I have my beloved Riba to take in the morning but it is not so strict on same time every day thing so I take them at 10 in the morning and at 10 at night (more or less)

Also, if the Harvoni makes you a little spacey, better to be spacey at home than during an important meeting

But, whatever works for you. People are all over the map here and the pharmacist says that they don't really care - as long as you take Harvoni at the same time each day

Good luck on your treatment!

[Rbeth]

Hi Zzanna & welcome to forum!
Some people have no side effects at all, some have headaches, some have fatigue, some have insomnia, some have weird spaced out feeling, some have forgetfulness, some have elevation of blood pressure, some have mouth ulcers, some have body aches(cramps) & again, some have none of the above!! I tell you that so you do not feel alone ;-) I had many above mentioned SFX and they were all pretty short in duration & abated on there own.
Of interest for me, my spaciness & strange vision seemed to be directly proportionate with fatigue, which I didn't realize, sleep window gone & developed insomnia= not enough sleep= forgetfulness & a bit out of it. I did Harvoni 12. A person on forum told me to sleep whenever I felt that way( before iPad dropped out of my hands) and so I did & everything got much better. Even if I napped at 6 PM, I could still sleep at night. So hydrate like crazy & sleep when ever you can! Sleep is important for your body to heal. Listen to your your body & try not to worry. As Dee & other's said, (not like old Tx's) but still very powerful meds, it really is a comparatively EASY Tx. You will begin to feel quite okay, for sure! Blame it on the Tx meds(Harvoni) & drink water & sleep. Sounds like Tx is working lol
All blessings to SVR
Randy

[hepcandme]

Great advice Randy!

from the woman who just laid down for a little bit at 6:30 PM and just woke up now - after midnight

In our normal world, it just feels lazy to sleep so much, I guess, and so even though I can completely understand why it would be best to do so, I have a hard time complying

I feel rested now though...