Feeling like a freak (side-effects)

[thingsbuilt]

Hi-

Just starting my third and last bottle of Harvoni. (I had posted my side effects for the first month in the HIV/HepC section, which generally has 0 views, so I thought I would drop in here for a moment..)

I've had a lot of side-effects, and it has changed my ability to conduct my life normally.
But when I read the many posts from others here, who have an 'occasional headache"
well, I just feel like a freak. Maybe it's because I've been on HIV meds since the early 1990's, maybe it's just my physiology. I am not ungrateful for this drug, and I will get through it. But the side-effects are often not unlike a milder version of chemotherapy (which I have had).

First, the headaches, which eventually become severe. I wake up with one every morning, and having had migraines 20 years ago, I can say that these are bad headaches. Tylenol is useless. Light-sensitivity is an issue, and some nausea
is part of mix, which leads me to believe that the old migraines are being triggered.
(fortunately, only 3 in the last 2 weeks..  meaning three days of light-sensitivity and nausea and bad headaches and bright flashes). Normally I just wake up with a bad headache which makes me want to die.  Then there is joint pain. I didn't use to have it; I was active,  and used my bicycle for transportation. I haven't used it much since
beginning Harvoni. My knees hurt too much. First one, then the other, sometimes both. My ankles, not so much. My lower back was problematic early this year, and it was getting better. It is a problem every morning now since taking Harvoni. It hurts. Neuropathy isn't something I've had much of during all of my HIV years, but I can't
put my feet on the floor in the morning,  to walk to the kitchen. They hurt. Why do the bottoms of my feet hurt?

I did ride my bicycle last week once, after the headaches and joint pain cleared up
(usually by late afternoon).. but I was so fuzzy that I got worried I would not see a car coming or a pedestrian, or a car door opening, or a pothole. Sensory overload.
They say you never forget how to ride a bicycle..  well I basically forgot. Anyway, when it's all over I am sure I will be able to go back to my bike.
I take the Harvoni at night, and it doesn't keep me awake, but it forces me up really early, so I cannot sleep any later than 7 am. (also the horrible headache means "get up, get vertical, get the blood flowing out of your head and take your headache meds imediately with coffee, or you will be sorry later"--  old advice from migraine doctor)

...anyway, I never feel like I slept well, sort of always a zombie. Lots of dreams at night, but groggy all day. I am no longer operating industrial sewing machines anymore (they are not something you want to make a mistake on!) or power saws, etc.
Mostly I feel like whatever might have bothered you before will be magnified after Harvoni (I've had a problem with my left wrist/thumb, maybe carpal tunnel, that was
just a bother... but now I cannot lift a skillet or tie my shoes.. man, does it hurt!). Basically I feel like the day after a car or bike accident.. maybe you are not injured, but your whole body feels sore because of the overall trauma. This is every day on Harvoni for me.

I wish very much I could be like the other people here, who have a few headaches and nothing much else. But I am fortunate to have medications which I use very sparingly, to help me get my day started, no thanks to my doctor. My clinic does not monitor  or collect any of these complaints, so I have learned that I am on my own.

It does seem to accumulate, like the effects of chemo (and unlike the effects of HIV meds). You get used to the side-effects of HIV meds, or they lessen over time.
The Harvoni side-effects seem (for me) to build over time.. I cannot imagine how I will be in six weeks. But I'll figure it out, I guess.

I miss work, and I miss the income I once made from it, and I look ahead with nothing but fear because the money's run out. But I work with my hands, and I can't use them anymore. My doctor simply repeats "there are no side effects reported with Harvoni"...  and also  "lower back pain is the most common complaint of men your age."... and "try yoga" (I have, but it works better when you are not in pain)

So as you might imagine, I've stopped bothering him with all this other stuff.
Besides, I'm sure it's all in my mind!

I'm 53.

well, thanks for listening.
Your results may vary!

[gnatcatcher]

No, it's not all in your mind. I believe you. There are other people on these hep forums who have had really rough side effects on Harvoni. I hope they will chime in so you won't feel so alone. If you aren't already drinking a lot of water, doing so may help the headaches somewhat. It is also possible to move your pill time gradually, if there's a time that would let you sleep better so you won't be a zombie. And painful though it is, it is best to continue to get some exercise, although it doesn't have to be bicycle riding and can perhaps be varied so the muscle groups get rest on alternate days.

I don't know why your doctor believes "there are no side effects reported with Harvoni" because the prescribing information that comes with the pill bottle lists some, and a recent real-world (post-clinical trial) study lists these:
Fatigue 22%
Headache 21%
Nausea 8%
Diarrhea 6%
Insomnia 6%
Flu-like illness 5%
Dyspnea 3% (plus 0.4% for exertional dyspnea)
Dizziness 3%
Cough 3%
Rash 2%
Itching 2%
Decreased appetite 2%
Anemia 1%
Irritability 1%
There's a separate table of Significant Adverse Events, with 91 out of 2005 people experiencing something significant.

Sorry I don't know of a way to make your side effects disappear, but I hope the fact that a considerable % of Harvoni takers have side effects is some comfort to you. Six weeks more -- the goal (a life free of Hep C) is getting closer every day.

[jakas]

I am 53 too just started yesterday on Harvoni. I hope you feel well soon. Cant comment on any sides right now as its too early but my blood pressure is up

[Philadelphia]

As Gnatty says, treatment is different for everyone. What is easy for some proves challenging for others. The great thing about here is that we have a wide range of people who have experienced a wide range of reactions.

Stick around, you'll feel better if you do!

[thingsbuilt]

..."I am 53 too just started yesterday on Harvoni. I hope you feel well soon. Cant comment on any sides right now as its too early but my blood pressure is up.."

MY blood pressure goes up when I get to the doctor's office, just waiting for his sideways look when I describe the symptoms!

Anyways, six more weeks, then a few more weeks (for lag time) and I'll be back to my grumpy self. 

[taliah]

I'm sorry you have all these side effects. I don't think any of us would say you're making it up. But the meds need more than x% of reported side effects for them to even list it.

I started out mostly ok, but now am having pretty severe (for me) insomnia. I take my meds in the morning, so I don't think moving it would help. I actually just called my doctor's office to see if they can give me something to help me sleep.

I got minor headaches. Drinking water helped, in my case, but they were minor.

I am super clumsy and just forgetful. This started before the insomnia, so I don't think it's just lack of sleep. I've bumped my shin/elbow/arm/sides way too many times. I was baking and forgot to add both chocolate chips AND dry ingredients. (I've made this recipe many times before.) Just a bunch of really stupid mistakes.

It's not terrible as far as side effects of powerful drugs are concerned. But it's also not nothing, which was how it was sold to me as.

I just finished week 5. So 7 more weeks to go. At least my 4 week test results came back as undetected.

[HealthGal3]

Hi TB

Everyone's side effects are different.  You can't go by the general public.  I was never good with any medicine, always had the worse side effects.  It depends upon your body chemistry.

I'm on week 5 of Harvoni.  The first week was brutal with nausea, flu like symptoms, aches & pains.  The second & third week was a lot better...more normal.  However, now I'm back to achey and fatigue, weird intermittent pains in the head.  Most people experience loose stools or diarrhea, I'm the opposite with constipation, irritable bowel, which I normally have, because this medicine sucks the fluids out of you.  I find that any prior health issues you have or had, will definitely be magnified.

I take Harvoni in the AM so I can take my vitamins or such later in the day. Sleep has always been a problem for me, so the drug isn't the issue.

Whatever your feeling is true and real.  Just hang in there because it can only get better!

HealthGal

[Carly]

Thank goodness to Gnatty and all you good people.

I have bad flu like side effects that seem to be getting worse not better. I will persevere.

I have extreme muscle aches, hands, wrists, legs, back, feeling feverish and always very tired. No insomnia or headaches but the other effects are hard to take for an active person. I am really glad to read I am not alone as my Dr keeps telling me that I am in the minority at day 33. I am going to try and switch the time of day I take the Harvoni and drink more water.

I feel guilty complaining when I was so lucky to be approved but I didn't expect this after my Dr told me no side effects.

Good luck to all of you !

[HealthGal3]

Hi Carly

Know the feeling of those side effects.  You & I are pretty close in treatment startup.  Came down with some sort of stomach bug, ran some temp, was careful not to indulge with food.  Now it's really bad headaches which no pain medicine seems to work.  Last 4 days were awful.  On my second Advil tonight.  Sleeping has started to be a problem.  Not sure if it's because of the pain in my head.  Looks like each week becomes a new or different symptom.  I've also had issues with memory.

Don't know if changing your times would help.  I like to keep my medicine schedule the same each day because the drug needs to be in our systems on a constant level.  We need to make sure there's no drug lapse in the bloodstream as to allow the virus to remain active.  You can ask your doctor about time changes.

New blood work up on Tuesday.  Hopefully, I won't be butchered again by the Tech.

Keep up the good work...we should celebrate together when finished!

HealthGal

[BillT]

Hi HealthGal,
                  I know you're probably already following the "Drink a lot of water" rule,but try to drink a little more and see if that help the headaches.

[HealthGal3]

Thanks, BillT.

Will drink more today.  I think my body doesn't hold the fluid.  Once the water goes in, 15 minutes later, it goes out.  However, the second Advil worked last night.  At least, I got some sleep.  Will see how today goes.

Were you on Harvoni and had any side effects?

HealthGal

[gnatcatcher]

Yep, the water goes in one end and quickly comes out the other. The only way I could make sense of Harvoni's need for all those fluids that weren't retained was that it takes a lot of liquid to flush out the dead HCVlings -- kind of like flushing the dead leaves out of the gutters and downspouts.

[Carly]

Hello to Healthgal3, BillT and Gnatty,

So last night before bed I drank a full 36 oz bottle of water and I am pleased (yet embarrassed) to say that this morning I am feeling MUCH better than the past 4 days. I do not like water but NOW I DO! ( Grrrrr- Grin) My hand are not swollen nor am I fatigued or feeling brain dead. Which is good because I am forcing myself to take a trip. Advil does not work at all for me plus I do not like to take it. Might change my pill intake time …

HealthGal3 I would be honored to celebrate at the conclusion although I don't know where you live? I am in Phila.

@Gnatty- once again - thank you kindly and congratulations on your cure !

Good luck to you all!
Carly

[HealthGal3]

Gnatcatcher & Carly

Read an article regarding too much fluid intake.  It seems that it can cause similar symptoms like headaches, dizziness, low body temperature, etc., it throws off the sodium balance in the body.  If the elimination of fluid from the body is clear, stop the water.  I guess this is trial and error for me.

Carly, I'm in Florida.  We can celebrate via posts or emails.  Yes?

Keep us up to date.

HealthGal

[jakas]

I am drinking a lot water, tea, coffee... My left ankle is swollen and foot, the right is fine. Mild headache or heavy head I have most of the time. Pissing like a freak
Liver pain today after the 17th pill. To work tomorrow 

[Alexa]

Wow. Really thought it was just me. Everyone seemed to be experiencing such minor side effects and my thoughts were, during the first several weeks, I would as well.

It's not been the case. I don't think Gilead has been as forthcoming with adverse reactions as one would have hoped with this miracle drug.

I'm genuinely scared at this point.

[Alexa]

I am drinking a lot water, tea, coffee... My left ankle is swollen and foot, the right is fine. Mild headache or heavy head I have most of the time. Pissing like a freak
Liver pain today after the 17th pill. To work tomorrow 

Yes, guess I'm a freak as well. I increased my water intake and credited it with the mild headaches and joint pains, in the first couple of weeks, with the addition of water. Everything went to hell about 6-7 weeks into treatment.

[BillT]

Wow.I thought I was going to the loo a lot because I was getting old.

[Carly]

Gnatty, HealthGirl, Alexa,Jakas and BilT Talia and (also good luck in your journey things built)

Clearly everyone is having different side effects and its so good to know we are not alone. My entire family made me feel like a pariah when I told them and they don't help at all so a blog like this is so good!

I am afraid not to drink the water now it had such a profound effect on me! Can't wait to see how I do on an 7 hour plane ride with the window seat!!! 

Day 34 and all I can say is that we are each clearly worth a $1,100 pill each day and the support each other is invaluable. Its finally a nice feeling to think about dating again after 8 years.

Good luck to all of you and yes Healthgirl, celebrations are in order, you are one day ahead of me I think!

Namaste all, I feel so much better having support here, back after Jan 9th!
Happy New Year
Carly

[HealthGal3]

Alexa

I think we all have to determine our water intake.  Too little or too much is not good.  My headaches are like pulsating pains in the sensitive areas of my neck and head.  Today is the first relief I've had in a while.  Your probably right that Gilead needs to review their information from people (like us) who are on treatment.  We are not all generically the same.

Don't worry...we all have the support and feedback from fellow HVC members.  New side effect, just list it here.  We can compare notes.

Hang in there!

HealthGal

[HealthGal3]

Carly

Have a wonderful trip and don't forget to let us know how your doing.

Au bientot!

HAPPY NEW YEAR TO ALL!

HealthGal 

[Rubi]

I had the same experience with my doctor while on Sovaldi and Ribaviran. I had very severe side effects and he says there are none with these meds. So his refusal to acknowledge them left me with no solutions for them. The good news is I made it, with the help and support from people in this and one other forum. But, I am so sorry you are going through this as I know how hard it was for me.

The hepc hotline has a list of doctors for most cities that are their 'preferred list'. I have now got 3 other GIs to go to for my follow up treatment.

I wish you well.

Rubi

[gnatcatcher]

Unfortunately, at this point Gilead is probably most concerned with pleasing its stockholders, so it is likely to make public only what it is legally obligated to. That is why real-world results (see Reply #1 above) are so important. But that study doesn't mention aches and pains except as "Flu-like illness 5%" whereas a lot of us have had aches and pains during Tx. Arthritic-type ailments can be due to the HCV itself, so it's tricky to sort out what is caused by the HCV and what is caused by the Harvoni.

As for the amount of fluids to drink, yesterday our RN moderator Lucinda Porter posted on another thread "I prefer a personalized method - if your output is pale yellow or clear, you are probably getting enough water - if it is concentrated (dark yellow), you need to drink more. The feedback method takes into consideration all sorts of variables, such as heat, sweating, water retention, etc."

Carly, best o' luck with that window seat. Here's wishing you a great vacation.

Rubi, good for you! I've "fired" quite a few doctors (without their knowing it) -- it can take some initiative to find the "keepers."

Gnatty

[jakas]

"so it's tricky to sort out what is caused by the HCV and what is caused by the Harvoni"
So true

[BillT]

One thing on the side effects to remember.I believe it was Lucinda(bless that woman)said she had a conversation with a doctor,and weight probably has a lot to do with how this affects us.A person that weighs 125,taking the same dosage as a person that weighs 180,may be affected by it more.It's hard to say without seeing some studies done,but it would make sense.   

[BillT]

Obviously there are a lot of other factors,but this has to be thrown into the mix.

[HealthGal3]

BillT, sounds like the weight theory makes sense.
Gnatcatcher, point on with drug companies.  That too makes sense.

That's why we're here comparing notes.  We're the only ones who are trusted to state the truth since we're the ones going through the treatments.  I think Harvoni et al, are too new to have definite answers to our questions.  I believe we are still guinea pigs and don't even know the long term effects of these drugs.

We just have to think positive and look to a healthier future.

HealthGal

[Alexa]

Alexa

I think we all have to determine our water intake.  Too little or too much is not good.  My headaches are like pulsating pains in the sensitive areas of my neck and head.  Today is the first relief I've had in a while.  Your probably right that Gilead needs to review their information from people (like us) who are on treatment.  We are not all generically the same.

Don't worry...we all have the support and feedback from fellow HVC members.  New side effect, just list it here.  We can compare notes.

Hang in there!

HealthGal

Hi Carly! Yes the water intake is an individual decision. I increased my consumption and potassium intake as well. Wanted to make sure I was getting enough potassium but it didn't seem to make a difference, but hopefully, in the beginning, it did alleviate the effects of headaches.

An excellent doctor recently (a few days ago in the hospital) told me that Gilead has simply not been associating serious side effects -- during their clinical trials --  that were, indeed, caused by their drugs. Shame on them. Another primary care provider told me we were simply Gilead's guinea pigs. Just wish they had been more honest about the probable side effects vs. making billions of dollars. Guess money always wins.

And god, I feel horrible being such a negative poster as I fought long and hard as all of you to have the privilege of taking Harvoni. I'm not sure it was the right decision at this point. I'm hoping the rather serious adverse effects are temporary. I'm sure I'm simply an anomaly and others will fare better.   

[Alexa]

One thing on the side effects to remember.I believe it was Lucinda(bless that woman)said she had a conversation with a doctor,and weight probably has a lot to do with how this affects us.A person that weighs 125,taking the same dosage as a person that weighs 180,may be affected by it more.It's hard to say without seeing some studies done,but it would make sense.

Yes I questioned the weight-based issue and was told Gilead had "made adjustments for such" by my cardiologist in my recent hospitalization due to the effects of Harvoni. Hmmm. I've lost about 15 pounds in the last few weeks. Started at 125 lbs (5'5") and now weigh just under 110. How did they possibly account for all weights/ medicine distribution in their "rush to get it out there"? I'm still losing weight.

Yes, it does make sense.

[Alexa]

BillT, sounds like the weight theory makes sense.
Gnatcatcher, point on with drug companies.  That too makes sense.

That's why we're here comparing notes.  We're the only ones who are trusted to state the truth since we're the ones going through the treatments.  I think Harvoni et al, are too new to have definite answers to our questions.  I believe we are still guinea pigs and don't even know the long term effects of these drugs.

We just have to think positive and look to a healthier future.



HealthGal

Healthgal: you make a lot of sense and I couldn't agree more. I'm trying so hard to be positive but after being in the hospital, it truly is frightening.

[jakas]

There is not a lot out there you could have taken Harvoni was the best offered or is.
I am on day 17 and I feel things can get worse with side effects reading all the posts. I am doing ok now but if they start more after 6-8 weeks could be a bummer
But ofcourse each of us is different but with a lot in common too. AND SO TRUELY written we dont know the long term effects as yet we DONT have a choice right now, its CURE OR DIE.
Anyway God bless. Hoping for the best and Happy 2016

[Alexa]

There is not a lot out there you could have taken Harvoni was the best offered or is.
I am on day 17 and I feel things can get worse with side effects reading all the posts. I am doing ok now but if they start more after 6-8 weeks could be a bummer
But ofcourse each of us is different but with a lot in common too. AND SO TRUELY written we dont know the long term effects as yet we DONT have a choice right now, its CURE OR DIE.
Anyway God bless. Hoping for the best and Happy 2016

You could more than likely be one who has zero side effects! I so hope so. So many folks taking Harvoni haven't experienced the nasty side effects. Bet you're one of them!

[BillT]

Hi Alexa,
            I know the sx can be awful for some but getting rid of this dragon is worth a few months of it in my opinion.Remember this isn't for forever(although the last 2 weeks damn sure feels like it  ),but HCV is if you don't treat.I don't see anything negative about your posts.I think every one of us knows we're guinea pigs.These are brand new meds so it goes to reason that not all the information is in,and I'm sure we were only told what they legally had to.I hope things get better for you.How long are you treating for,and how much longer do you have?

[Alexa]

Hi Alexa,
            I know the sx can be awful for some but getting rid of this dragon is worth a few months of it in my opinion.Remember this isn't for forever(although the last 2 weeks damn sure feels like it  ),but HCV is if you don't treat.I don't see anything negative about your posts.I think every one of us knows we're guinea pigs.These are brand new meds so it goes to reason that not all the information is in,and I'm sure we were only told what they legally had to.I hope things get better for you.How long are you treating for,and how much longer do you have?

Thank you for your kind words.

The really, really bad side effects didn't occur until about 6-7 weeks into treatment. I forced myself to take those last two weeks of pills. My usually quite normal BP was starting to skyrocket, along with the shortness of breath, tachycardia, inability to exercise or even walk without effort. For the first time, I was experiencing kidney pains. What at first was a joy (receiving and then taking the Harvoni) became a nightmare. The abdominal/pelvic CT (whilst in the hospital) showed lesions on both kidneys and the liver. Never had that before. My BP was uncontrollable. Dipping low and then skyrocketing within the hour. I wasn't allowed to leave my bed. I was seen by four specialists who had no idea what was happening to me. My arms are black and blue from all the blood draws. The chronic insomnia since treatment week 6 has been unrelenting even with meds. My last pill was Dec. 16. Twelve week treatment.

Again, thanks for your sweet words! I'm concerned others will read about my rough go of it and reconsider treatment. I honestly believe I'm the outlier of sorts here and most won't have the nasty sides I've experienced. I do!

[gnatcatcher]

Alexa, I'm sorry you had to endure such extraordinary suffering. Given what a wily thing a retrovirus like HCV is, I'm amazed any drug that can produce a high cure rate doesn't have a high rate of "outliers" as well, but it still hurts to hear what you have gone through. I sincerely hope your new conditions turn out to be fully reversible in the very near future.

Gnatty

[slats1056]

 Hey Guys, Thought I would put in My two cents worth! If You are feeling like a freak , check out My posts during treatment and post treatment, Always ask questions (the only dumb question is the one that is not asked). Talk to Your Doc, use the forums, and research things.
 Don't forget that You can report sides to FDA and the drug manufacturers as well.

 Hope everyone has a Happy and Healthy New Year.

 ONLY DEAD FISH GO WITH THE FLOW!

[Alexa]

Hi Carly! Yes the water intake is an individual decision. I increased my consumption and potassium intake as well. Wanted to make sure I was getting enough potassium but it didn't seem to make a difference, but hopefully, in the beginning, it did alleviate the effects of headaches.

An excellent doctor recently (a few days ago in the hospital) told me that Gilead has simply not been associating serious side effects -- during their clinical trials --  that were, indeed, caused by their drugs. Shame on them. Another primary care provider told me we were simply Gilead's guinea pigs. Just wish they had been more honest about the probable side effects vs. making billions of dollars. Guess money always wins.

And god, I feel horrible being such a negative poster as I fought long and hard as all of you to have the privilege of taking Harvoni. I'm not sure it was the right decision at this point. I'm hoping the rather serious adverse effects are temporary. I'm sure I'm simply an anomaly and others will fare better.

Oops, sorry. Meant HealthGal. 

[Alexa]

Alexa, I'm sorry you had to endure such extraordinary suffering. Given what a wily thing a retrovirus like HCV is, I'm amazed any drug that can produce a high cure rate doesn't have a high rate of "outliers" as well, but it still hurts to hear what you have gone through. I sincerely hope your new conditions turn out to be fully reversible in the very near future.

Gnatty

Hi Gnatty! Thank you so much for your response and kind words.

As I've written before, the first six weeks or so were such a breeze. Very mild headaches and fatigue. I credited my very healthy eating habits and my love of exercising (or maybe I was just lucky). Also, I was drinking close to a gallon of water each day. Sounds like a lot (and is) but I often exercise 2-3 hours a day.

Several doctors have differences of opinions as to why this is happening. I'm going to follow through with one's recommendations although his seemingly lack of knowledge regarding the importance of SVR12/24 is confusing as hell to me, and he's my specialist. Checked BP yesterday and it's still high. Trying my best not to obsess over this. Don't need to add excessive anxiety to the mix.

Thanks again!

Alexa

[The Terminator]

i found that i drank some water but not very much,but i didnt have any sides at all now last 14 pills excited

[thingsbuilt]

I am nearing the end of my 12 week course; I have about four pills left. (I have circled the day on my calendar.)

Strangely I have a bad problem with my left wrist (and I have read the same thing  here from other people). I am right handed, and I work with my hands.
Unfortunately I must use both of them. And it's really painful now to even open a jar
or crank down my car window. It's just not something I have ever had a problem with before. And the knees. In different places. Yesterday it was the top of my left knee which made it impossible to walk. Today, it's fine.

Also, don't underestimate the "Fog"...  I got on a downtown bus this morning to go see someone, and got lost on the way back. I know the route, but I was fuzzy about which stops the recorded announcement said were coming up next. (Actually I know what I heard. "5th street, 4th street, 3rd street..")  so I got off, only to see the bus
go towards 7th street (my street) and then turn east, which of course is the way it's supposed to go, but whatever... my sense of direction had got flipped in my mind.

so I had a long walk home. This is why I have tried not to use my car much. Or operate machinery.

Anyway,  it was a nice walk.

Someone please tell me what we can do about our knees and other joints after we have finished this medication, so as maybe to undo the damage? I feel like Grandpa Simpson these days.

cheers,
steve

[Carly]

Hello to you all.

I bought the ticket before I was approved for the Harvoni ( assumed I would not be and felt just great) and I wouldn't necessarily call it a stellar decision. The Netherlands are beautiful but I spent quite a bit of my trip in bed or resting due to excessive fatigue and aches especially in my hands and neck. Still drinking a lot of water.

The scariest thing yet was today, back to work feeling brain dead and when I came out to my car I couldn't remember the location of a local store. It scared the *&*#@ out of me!! I have been feeling dull but never like this. I sat in my car and let the panic pass and went home. Day 48 for me. Only slightly over 1/2 way and trying to be positive about the cure and the fact that I was lucky enough to be approved. Are there really people with no side effects?

Hope you are all doing ok! HealthGal?

[gnatcatcher]

Carly, did your trip cross a few time zones, in which case the brain dead feeling might have been at least somewhat caused by jet lag? If there's fairness in the universe, it'll be your turn to have an easy time post-Tx. I was one of the lucky ones who got the "Harvoni High" (extra energy and the feeling that the mind was working faster), but both of those advantages went away after the last pill. My energy level now (almost 15 weeks after Tx ended) is a little better than before Tx but much less good than during Tx. Go figure!

[Carly]

Thanks for answering Gnatty !

I feel like a huge whiner compared to the stories of some here. I slept across the ocean both directions and then all day yesterday so not jet lag…. just…….dazed and confused episodes. All I want to do is get back to feeling like I did before I started!

This is such a great forum!
Heres to you Steve! YAY!
Carly

[HealthGal3]

Hey Carly

Welcome back!  Sorry to hear that your trip was a bit exhausting for you.  Believe it or not,  that's why I decided to start treatment before taking my vacation.  Did you go to Holland?

At times, I've had the brain fog problems, but recently, I've started to feel like my old self.  I even walked my 3 miles today without getting tired.  I still have to watch what I eat, as my liver only likes certain foods.  I do take a multiple liquid B vitamin that livers love. 

After this week, I will be on my last round of Harvoni.  Hooray!  I believe I finish around the 3rd week of February.  When will you finish and do you have any problems being covered by insurance?  Check out my blood work below, the drug does work.  When do you get your workup?

Keep in touch!

HealthGal

[gnatcatcher]

HealthGal, glad to see the steady progress in your lab results.

[HealthGal3]

Thanks, Gnatcatcher.

Congrats on your treatment success.  What's the time frame that stipulates free from virus permanently?

HealthGal

[gnatcatcher]

HealthGal, on January 6 my hepatologist congratulated me on being cured and said that my reaching SVR12 represents a 99% chance that I'll never see HCV again. But he does plan to check my viral load again at 24 weeks after the end of treatment and annually for another 3 years thereafter.

He thinks there always remains a tiny chance that the virus wasn't totally eradicated. This came up because I mentioned reading studies that show that, as more time passes after the HCV becomes undetected, one's antibody titer decreases, and a few people have even gotten to the point where no HCV antibody is detected. I asked him if, should I become one of the lucky ones to reach an undetectable antibody level, I would be able to donate blood. He said I still shouldn't, because when people who've never tested positive for HCV or antibodies donate blood, there's still a 1 in a million chance they could pass HCV on, whereas with someone who did test positive for HCV but cleared it through treatment, there's a 1 in 150,000 chance.

SVR12 is considered a cure and SVR24 is even closer to a sure thing because the odds of NOT being cured if there's no detectable viral load that long after treatment are extremely small.

Gnatty

[HealthGal3]

Gnatcatcher

So it seems the lucky number is 12 weeks, followed by a 24 week re-confirmation of no detectable VL.  Give us a heads up at that marker point.

In the meantime, much congrats on your completion of treatment and success!

HealthGal

[gnatcatcher]

Thanks, HealthGal -- you are correct, and you're well on your way there yourself.

Now I get to find out whether the lupus nephritis diagnosis I got in 1996 is actually a separate diagnosis or whether the symptoms were due to extrahepatic manifestations (EHMs) of the HCV. The hepatologist says that only time will tell. I'll also get to see whether my fibrosis score goes down enough to lose the "cirrhosis" label (if the 19.5 kPa's drop to <12). I'll know that on June 29 when I have another FibroScan.

Gnatty

[HealthGal3]

Wow, Gnatty, You have have to wait until June for that test?

I think it's a great idea to take another Fibroscan to see if the liver has improved and began a healing progress.  I think that when the time comes, I'll do the same.  One liver specialist told me the liver can heal itself.  How far, who knows.

What's your lupus symptoms?  I was wondering the same question on whether other ailments can be related to the HCV.  I have chronic cervical (neck) issues that got worse as time went by.  Lots of nighttime headaches.  I'm not sure if it's getting older, or the virus attacking the joints and muscles.

HealthGal

[gnatcatcher]

Wow, Gnatty, You have to wait until June for that test?

The hepatologist wanted to give the liver more time to heal before my getting another reading.

What's your lupus symptoms?

Mostly unpredictably random joint and muscle pain. Neck and knee pain get most in the way of ordinary living, so I'm thankful they're very intermittent. But it was fatigue and fever (plus my having had a different autoimmune disease) that led them to test for lupus, with kidney damage showing up in the lab results. Yes, it's hard to tell what's disease and what's old age -- and what's the result of a back injury >25 years ago

[HealthGal3]

Gnatty

Hope this fixes most of those issues.  Feel better!

Stay in touch.

HealthGal

[Charles413]

I have 4 more days left and can't wait! I get really sick and paranoid after taking the pills, feel really tired and don't have any ambition !

So there are other side affects that they don't tell you because you would not probably take it! 

The long time affects are a concern also!  You see all the adds for lawers saying". Have you taken this drug and now are serverly sick or dead?"

Maybe it's the paranoya !  Let's hope! 

[gnatcatcher]

Charles413, I'm sorry you have had such a rough time while on treatment. Retroviruses like Hep C are extraordinarily difficult to treat because they keep changing (hence the "retro" in their name). Therefore, any treatment that manages to kill the Hep C is going to be strong medicine, and because every body is different, some people will experience strong side effects. Clinical trials never unearth all the side effects that will eventually surface -- the studies would have to enroll tens of thousands of people to unearth even 99% of the side effects that will eventually surface.

Not that any of that is consolation to you. I'm glad you're almost done with treatment. Do you have lab results yet? Is your virus load much lower than before treatment? If your liver enzymes (such as ALT and AST) were higher than normal before treatment, are they normal now? Here's hoping that all of your difficulties will turn out to have been worth it.

Gnatty

[HealthGal3]

Charles413

Gnatty is correct.  Nobody knows what the long term effects are in taking these drugs.  However, what's the alternative?  Some of us who have had the disease for over 10 years or so, cannot wait forever for future results.  Liver damage or liver cancer is probably inevitable without treatment.  Let us know your test results.  If they're in the normal range, your on the right track.

Don't worry because there are side effects.  Think that you'll be cured and that your health will improve.

Hang in there!

HealthGal

[Charles413]

Hey you  two!  Thanks for the pep talk, I think it will help go through the next 4 days.  I was concidering not talking them because it's getting unbearable .

At week 4 I was <15. 
Just did the 12 week test going to Dr on wed for results!

Thanks again for the words of wisdom !

Charlie

[Philadelphia]

With four more days to go, you are so close ... Almost at that finish line.  Good luck !

[gnatcatcher]

. . . At week 4 I was <15. 

Charlie, that's an EXCELLENT sign!

[BillT]

Hi Charles,
               You're almost there and then you can put this behind you.Congratulations

[Charles413]

Thanks Bill!   Two more days!

Charles

[Mugwump]

I am nearing the end of my 12 week course; I have about four pills left. (I have circled the day on my calendar.)

Strangely I have a bad problem with my left wrist (and I have read the same thing  here from other people). I am right handed, and I work with my hands.
Unfortunately I must use both of them. And it's really painful now to even open a jar
or crank down my car window. It's just not something I have ever had a problem with before. And the knees. In different places. Yesterday it was the top of my left knee which made it impossible to walk. Today, it's fine.

Also, don't underestimate the "Fog"...  I got on a downtown bus this morning to go see someone, and got lost on the way back. I know the route, but I was fuzzy about which stops the recorded announcement said were coming up next. (Actually I know what I heard. "5th street, 4th street, 3rd street..")  so I got off, only to see the bus
go towards 7th street (my street) and then turn east, which of course is the way it's supposed to go, but whatever... my sense of direction had got flipped in my mind.

so I had a long walk home. This is why I have tried not to use my car much. Or operate machinery.

Anyway,  it was a nice walk.

Someone please tell me what we can do about our knees and other joints after we have finished this medication, so as maybe to undo the damage? I feel like Grandpa Simpson these days.

cheers,
steve

With a liver stiffness score of 26 I can tell you that I went through quite a bit of changes during the last few weeks of my 24 on Harvoni... to say the least! After experiencing a wonderful "Harvoni High" as the virus cleared in about 14 weeks the last 10 were a bummer.


What I found was that myalgia, joint pain and stiffness increased. So I took a page out of what Chinese seniors do and started to practice careful tai chi.


I am a classical guitarist and am keenly aware of any change that occurs to my joints and muscles. I will say that the joint pain did become very pronounced at time but careful, slow movement without strain really helped.


For my hips and lower back what helped the most was an exercise that I created in imitation of pedalling a bike while seated. I do it by rotating every joint from my core to my toes in a circular motion that changes direction in cycles. You pretend you are riding a bike moving every joint slowly all the way to the tips of your toes.


The other movement that really helps is one that I do before playing an extremely difficult piece. What I do is rotate my shoulder slowly one arm at a time and then do an almost detache violin bow stroke movement that extends to the tips of my fingers. Then I move both arms in a synchronized movement then in a contrapuntal differential way to focus the minds ability to multi task. You know, the old saw of rubbing your tummy in one direction while scratching your head in the opposite rotation and versa visa LOL


I really think the Chinese are onto something important with tai chi! Even the arthritis society is starting to recognized the importance of thoughtful slow exercise to keep up the mind and body.


http://www.arthritis.org/living-with-arthritis/exercise/videos/tai-chi/


I sincerely hope that you start to get over the hard part of this treatment soon and when you do reach SVR 12 you can do some dancing the way I wanted to!! But man it sure was painful for the first 4 months post treatment.


Cheers
Eric

[Charles413]

Hey Eric,

Thanks for the good words and input , I barely have a enough strength or ambition even to go to the bathroom,

I know I have to battle throught it ,, but I'm thinking not even taking the last two!!

But I will, what's another two days?   

C

[Carly]

Hello and reading everyones comments!

Charlie by the time I read this you should be done? Congrats!

Eric- I am hoping all of my finger and wrist soreness dissipate as I am a painter. I have my heart set on being normal again on 2/17…hmmmm.. I hope you feel better soon! I have stopped going to the gym as the next day is always worse.

Gnatty, as ever thanks for your positive comments on this forum! Heres to your future!

HealthGal, I hope you are doing well. I have had the best three days in 2 months since Monday. Almost feeling normal. I keep meaning to get the liquid B12 you suggested. How are you Sister?

Carly

[sinkers22]

My side effects seem to have hit me last week.  I am on an 8 week treatment and had the headache for a day or two, then things quieted down and everything seemed to be fine.  Now, on my 6th week, I have no energy, no ambition, foggy head.  Falling asleep is not a problem since I take a Xanax before bed, but I go to bed at about 9pm and can't sleep past 3:30 am.  I'm restless, achy and feeling all around horrible.  Glad I came here again, though, because I know I am not alone.  I had my 1st labs week and a half ago, and no results yet.  I see my PCP this week and see if he has results from my hep doc. 

[gnatcatcher]

sinkers22, during treatment, I never managed to sleep more than 6 hours at night. Last week there were three nights in a row where I slept 8 or more hours straight -- in general, my sleeping patterns are now healthier than they'd been in decades. You'll notice, however, that it's taken a few months after treatment ended for my body to get to this point.

Other improvements: much less dental plaque, and what there is is much easier to remove. (The previous few years, scrupulous dental hygiene just couldn't keep up with the plaque production.) My dentist has verified these claims. And my excretory processes have normalized after I came pretty darned close to needing adult diapers.

I still have days of considerable joint pain. Carly, I feel for you. I'm a nature photographer, so the bad days can be a challenge. On the other hand, when I can lose myself in the magic of art-making, it can override the pain for a while. I say that nature photography is the best medicine: no bad side effects except for insect bites!

Here's a crazy thought for you: Given that there are some excellent artists who, due to paralysis, use their teeth to hold the paintbrush, what if you were, just for the hell of it, to try doing a painting using some really unorthodox way of holding the brush? It'd be like photographers being encouraged to leave their favorite lens at home and to shoot for a day using a wide-angle lens instead of a telephoto or vice versa. That can get some amazing creative juices flowing and possibly lead to a eureka moment.

Gnatty

[Carly]

Gnatty you are funny!

Yes I am also a photographer and should be counting my blessings! I paint in miniatures and I mean 3" by 3" realistic landscapes. I never did understand modern art. If I tried that it would be just a joke and depressing as hell for a detail person. My hands are now the only symptom that I have but its one of the worst I've had. Like arthritis I guess. Not being able to use my hands would be awful so I am heading back to the heat packs now. You are so encouraging to all and I thank you! ( again)

22 days left. :-)

Any word on Health Gal?
Carly

[Reserved Parking]

Hi... found out by accident that i had Hep C. No liver damage or anything.  Doctors said i was lucky because i must've just gotten it within the past year or so.  I didn't have to fight with my ins company or anything.  Found out i had it in late October.  I began Harvoni on Christmas Eve... I couldn't stay awake.  Day 2 I had the worse headaches ever.  Day 3 I began taking the pill in the evening, both problems eliminated.  However,  I have never been more depressed in my life.  I told a random person that I'm this close to killing myself if it weren't for my daughter.... No appetite , little to no patience, my day starts at 630a - by 7pm I'm drained and having body aches.  You're not crazy.....the medicine is like a double edge sword . JUST THINK THO....WE'LL BE OK

[gnatcatcher]

Reserved Parking, what does your doctor say about all this? If s/he thinks you should continue on the Harvoni, what kind of support system (medical and personal) do you have to help you through this? Is your treatment 8 weeks total, in which case you're more than halfway home? Do you have 4-week lab results yet, to cheer you on?

[lporterrn]

Dear Reserved Parking,
I don't know if your depression is related to the medication or not, but either way, this is a serious issue. Please seek medical attention ASAP so you and your medical provider can figure out whether this is a side effect of the Harvoni or a coincidental problem. For instance, I just heard from someone else that she was hugely depressed, and she just started a different hep C drug. However, it turns out that she had stopped all her antidepressants a week before starting the hep C treatment. In short, you may need someone to help be a detective with you to see what the cause of your depressions is. Perhaps you are on an antidepressant and there is an interaction and you aren't getting enough of your antidepressant. There are lots of possible explanations.

Please, please, please get help, and if you feel like acting on your feelings, go immediately to the ER or call 911. I have been there, and one time I almost didn't come back. In fact, it was on this very date on 1988. Now my life is incredible, and I am free of hep C.   

Sending a big hug.

[Reserved Parking]

I was to go for my lab work tomorrow but my specialist cancelled. I see my primary tomorrow and am going to ask him to send me. As for antidepressants, I've been on 20mg Lexapro for a few years now.  Last month my primary added Klonopin to help with anxiety because I couldn't sleep.  Just since June I've lost my mom,  my son has gone away to college,  my ex husband  wants custody of our daughter because I have a contagious disease, my car died,  financed a new one and was hit on the freeway a month later...it's all piling on... I wasn't going to tell my primary about my current feelings,  but thanks to you all, I will.

[Reserved Parking]

It's funny because I feel great when I'm helping others. So I ignore what I'm going thru and dive in head first...

[gnatcatcher]

Reserved Parking, it must be especially hard not to have your mother to talk with, given how much is on your plate right now. if your ex is referring to hep C as the contagious disease, he doesn't know much about it. It takes blood-to-blood contact to spread it. And Harvoni works so quickly, your viral load may already be undetectable (the additional weeks of treatment are to get rid of any HCV that is hiding in nooks and crannies), so the risk of transmission is very low.

I'm very glad you get to see your primary doctor tomorrow. We forum members can give you a place to vent and we can send you encouragement and virtual hugs, but they are no substitute for medical care and kind-hearted people you can see and hear.

You sound like a very nice person who helps others whenever you can. Please consider that "it is more blessed to give than to receive" only works if someone is willing to receive. Now that you've got some grieving and healing to do, whenever someone wants to help you out, please give that person the gift of graciously receiving the help. Then that person can feel as great as you do when you're helping others.

Please let us know how tomorrow's appointment goes.

Virtual hugs,

Gnatty

[AussieRosa]

Hi, ReservedParking. As the others here have said: please talk to your doctors about the way you're feeling as soon as possible. And as suggested, call a help line if you feel you're going to act on those feelings.

Hopefully a tweak of meds will sort this all out for you. People are here for you.

[Carly]

Hello Reserved Parking,

Yes you certainly do have an extreme amount going on in your life. The people here are extremely helpful and supportive ! All you need to do is ask! Perhaps it's time for a conversation with your Dr but also give yourself credit for being brave enough to do this for YOU in addition to everything going on you are one strong woman!! I have been reading for the last year about side effects and was also depressed prior to treatment. It especially increased the last year and now during treatment as well. I found a clinical article about depression being an identifiable symptom of Hep and it explained a lot about who I had become. I think you need to give yourself some credit for the strength you possess and to finish the fight for your child ! If you'd like to email off line I'm happy to do so as support is a great thing. (Something I need too!) You are brave and strong as hell !!
Carly

[Reserved Parking]

Saw my primary today. He was livid.... the infectious disease specialist that he referred me to had not sent him any of my charts.  He was surprised to learn that I was on my second bottle of Harvoni. He switched me from Lexapro to Pristiq (sp), waiting on a preauth.....ugh. Anyhow,  VIRTUAL HUGS REALLY WORK.  THANK YOU ALL SO MUCH!  I finally shared what I'm going thru with the discordant guy in my life and he was super compassionate and understanding He laughed saying,  "that explains so much,  I really thought  you were just a nurturing psychopath." I see the specialist Wednesday

[gnatcatcher]

R.P., this all sounds very promising! Thanks for filling us in. Glad the virtual hugs work, and I'm guessing you may have gotten some real ones today, too. Here's my "emoji" for some more virtual hugs: {} {} {}

[lporterrn]

Well, I can just imagine the spring in your step coming back! And yes, I know what you mean about helping others. It's good medicine (along with laughter)