Probably starting Harvoni next week, what to expect?

[Looks4Path]

Just got approved for Harvoni thru my insurance company and picked it up yesterday, Valentines Day! I have known about being Hep C positive since 2009, but refused treatment back then for all the obvious reasons with interferon, but also because at that point in time, I was only an F1-2. Not so this year, definitely a Fibrosos score of F-3, bridging with many septa. Viral load is 1,950,000. So almost 2 million. I will be on Harvoni for 12 weeks. I still have to check in with my Hep C doctor as she wants to see me before I start the presciption.

I have noticed in the last few years, some signs I think Hep C has affected me, lack of energy, rashs, brown urine from time to time, and I am hoping that after treatment that most of this will clear up. I work two jobs, both part time, have almost a 20 hr. a week volunteer job that I do that I love, have a husband that is currently had 7 strokes, and has advanced prostate. I am also responsible for his mother who is in assisted living and almost 97 yrs. old so I have to be her advocate, plus my own mother is not doing well! Yes I have much on my plate.

I have researched many of the blogs concerning Harvoni, and find some people have no complaints except mild headaches, and fatigue, but others seem to have been overwhelmed by Harvoni. The specialty pharmacist when she called was very encouraging saying they do not hear of many side affects except the ones I have already mentioned. I guess my fears are that on Harvoni I am not going to be able to take care of the aboved mentioned with my family. I spoke to the specialty pharmacy and they said most people do not report any thing debilitating with treatment and I should be fine!

What do all of you think? I do not think I should put off treatment, as who knows if there will ever be a perfect time for treatment. I am hoping that some of the mind fog I have experienced these last couple of years and lack of energy will come back after treatment. Are my expectations unrealistic?

thanks,

LD

[gnatcatcher]

Welcome, Looks4Path. Yes, you do have a very full plate, so I am hoping you get the "Harvoni High" like I did -- it'll give you lots of extra energy plus mental clarity. Your bottle of pills should have come with a booklet of prescribing information; you'll see a table with the most common 5 side effects and notice that very few people get them.

Be sure to drink plenty of fluids. Insufficient fluid intake can result in headaches. Sufficient means pale yellow or clear urine, or else use this rule of thumb: 1 ounce of fluid for every 2 pounds of body weight (e.g., someone weighing 160 # would drink 80 ounces = 10 cups).

I agree with you that now is the time for treatment. The sooner your liver begins healing, the more years you'll get to spend with a healthy liver. Harvoni works so quickly that when I was tested 1/3 through treatment, my liver enzymes had already gone from very high to normal and the virus was already undetected. Such terrific early success is common with Harvoni.

Best of luck to you.

Gnatty

[Lynn K]

Hi Congrats on getting approved for treatment

While sadly an unfortunate few had complaints about what they believe were side effects the jury is still out for many of them as to whether the cause was Harvoni or possibly something else that just happen to appear at the same time but in any event the majority of people had few to mild problems.

I had a couple of mild headaches. Was it Harvoni or was I just looking for it because of the known sides. Or maybe I just had a headache. But anyway it wasn't anything to slow me down at all. Really for me Harvoni was no different than taking a vitamin.

I am sure you wil be fine

You've got this

Good luck to you

[Looks4Path]

Thank you both Gnatty and Lynn K for your replies! They certainly help alleviate my fears about starting treatment. I am excited to think that soon enough I might be able to leave this miserable virus behind! You both have been a BIG help!

LD

[chino1969]

I did 24 weeks of Harvoni with no problems except a bit of mental confusion.  I drank plenty of water and ate normally.

[Angelica]

I did 8 weeks of Harvoni. I had a good diet, plenty of water, stocked up on ginger biscuit in case of nausea. I went to the gym almost every day. I did it because I was convinced that if I kept active my immune system would do its bit, my body would deal better with the drug and I would dispose of it more efficiently. I did not suffer many side effects, but my mind was affected. I am currently studying and although I seemed to function on the surface I realised when I had to take some tests that I was not as sharp as I should have been. Towards the end I started to have some insomnia issues which continued some time after end of tx. Harvoni pills are not candies, so I was relieved when the 8 weeks were over. Do not go into it with fear, but be prepared if things get a little tough 

[Looks4Path]

Thanks for your advice Angelica. I started the Harvoni two days ago...so far so good. Did have an increase in energy, and so far no side affects! My doctor said that Harvoni is usually well tolerated, I think that relieved some of my fears. I do feel a little spacey about an hour after taking, but nothing I can't handle. I did have something happen when I ate ice cream sherbet, afterwards there was the strangest metal type of taste in my mouth, it went away fast but that was odd.

Go for blood work in 3 weeks, and looking forward to it.

thanks again,

LD

[Looks4Path]

Hi China1969,

thanks for your reply. When you say mental confusion, what do you mean by that? You mean you were not able to think clearly? Or just feeling kind of spaced?

thanks,

LD

[FutureThinker]

Hi Looks4Path and welcome..... you have now entered the Harvoni Train! I just posted under the "Post Treatment" category about reaching SVR 39 and being discharged from my hepatologist...... such a good feeling, and you will be there, too, in the near future. You're on your way!

I was one who did not have a lot of side effects, experienced the "Harvoni High" for most of my 12 weeks, and overall found the ride to be very smooth and easy.  Fluid intake is key, as this drug does have a dehydrating effect. I remember well the fear/anxiety/anticipation after taking that first pill last year (actually one year ago this week!). Most of us fared very well on this treatment; it is not yet understood why some do not.  All of us are different, with different genetics and medical issues that I believe make a difference: under weight or over weight, diet, exercise, etc., etc.

Since you have progressed into the F3 category of fibrosis, I agree w/ your decision to start treatment now. Use this forum to deal w/ questions and voice concerns -- no one understands better than us! This forum was a lifesaver for me before, during and post treatment.  Lots of very knowledgeable, supportive people on here.  Keep a positive attitude and keep your eye on the end goal -- the goal of getting to the other side, out from under the black cloud of HCV.

Keep us posted, and the future is bright! FT

[gnatcatcher]

Thanks for your advice Angelica. I started the Harvoni two days ago...so far so good. Did have an increase in energy, and so far no side affects! My doctor said that Harvoni is usually well tolerated, I think that relieved some of my fears. I do feel a little spacey about an hour after taking, but nothing I can't handle. I did have something happen when I ate ice cream sherbet, afterwards there was the strangest metal type of taste in my mouth, it went away fast but that was odd.

Go for blood work in 3 weeks, and looking forward to it.

thanks again,

LD

LD, glad Harvoni is increasing your energy. As for the metallic taste, it was mentioned by a few people posting to the very long Harvoni side effects thread. It happened to me on days 50-53 of treatment (I just checked the log I kept). No big deal: if memory serves, it was fleeting for everyone who experienced it.

Rooting for you to have normal enzymes and an undetected viral load.

Gnatty

[Looks4Path]

Thanks Future thinker and Natty! Sorry to have disappeared for a while. Your replies were greatly appreciated!

Just had 3 week blood work and I am thrilled! UNDETECTABLE!!! WHOOPEE!  Next blood work will be at the end of the 12 weeks of Harvoni. Have to say it has been a very easy ride for me on the Harvoni Train. All hepatic function looks good, but according to my doctor I have always had good values in the recent years, not so good I think about 2009. I do have one question, this is the second time my doctor has mentioned an endoscopy since the fibrosis score was F-3. I declined a second time since if everything looks so good, why is it important? Wouldn't I show signs of needing an endoscopy? I believe it is for bleeding varices or something like that.

LD

[Lynn K]

 There are no signs of enlarged varices the first symptom could be a bleeding episode vomiting what look like coffee grounds which is what partly digested blood looks like.  A bleeding episode from esophageal varices can be life-threatening.

F3 is borderline to cirrhosis. When I was diagnosed with cirrhosis F4 on liver biopsy that was one of the first things my doctor had me do was to have an upper endoscopy. On my first upper endoscopy I was found to have grade 1 varices. I had a repeat upper endoscopy two years later and had grade 2 varices at that point.  The following year I had another endoscopy and was found to have grade 3 varices that required banding. I had no indication I had anything going on with having enlarged blood vessels in my esophagus. After that I had one upper endoscopy every month for the next four months to band the enlarged varices.  I now have an upper endoscopy every year to check to make sure that my varices have not returned.

Since you were only diagnosed with F3 to me it does seem a little early to have a upper endoscopy to check for esophageal varices but I'm sure your doctor knows what he's doing. Or just trying to be cautious to make sure you are safe.

Do you have any indications of portal hypertension like a low platelet count or an enlarged spleen?

[Looks4Path]

Hi Lynn,

thanks for your reply, nothing that the doctor has mentioned to me, said everything looks good. I looked back at my platelet count it is : Platelet Count 150 x10E3/uL so not sure if that is significant or not. Looks like it is the beginning of the normal range. Seems a little early to me also for an endoscopy.

thanks,

LD

[Lynn K]

That is minimum normal. My platelet count was just prior to treatment about 80 to 90 range. Now it is 111 so still low but improved.

With the minimum normal your doctor maybe concerned you are beginning to develop some portal hypertension and may want to have a baseline upper endoscopyor just to make sure you are safe.

No harm in asking why they feel you need the test.

[gnatcatcher]

LD, glad to learn you're UD already!

I can't add anything RE: upper endoscopy -- I've never had one, and Lynn's the forum's expert on the subject.

Gnatty

[Lynn K]

Yeah I guess having 12 or 13 of them I know a little bit.

Really they are not all that much if you have ever been under anesthetic for anything.

They are very quick no prep except nothing to eat or drink after midnight. And a ride home is needed.

[Looks4Path]

Yes Gnatty I am thrilled I am undetected!

Lynn K, if you are undetected, and the liver begins to heal itself (actually my doctor said the liver recovers pretty quickly) if there was a problem with esophogeal varices, wouldn't they too heal, and my platelet count start to go up?

thanks,

LD

[Lynn K]

What causes esophageal varicies is portal hypertension high blood pressure in the portal vein that supplies the liver. An enlarged spleen is another symptom of portal hypertension. Lowered platelet counts are caused by the enlarged spleen sequestering platelets.

That being said if you do have cirrhosis there is some evidence that even a liver with cirrhosis may experience some improvement in liver function with time. There have been done results indication in early cirrhosis about half of people with cirrhosis will regain some liver function.

In my case I have had cirrhosis for 9 years now my pretreatment Fibroscan result was 27 and my one year post was 33. I am thinking because the Fibroscan is not a perfect measuring devise and subject to operator differences my result was essentially unchanged. But as the cause of my liver damage (hep c) has been eradicated I shouldn't get any worse and have stopped the progress of liver damage the primary concern now is because of having cirrhosis I am at increased risk of HCC (heptocelular carcinoma) but even that risk is greatly reduced with cure of hep c.

For those without cirrhosis especially F2 and less they will be able to return to a normal life as if they were never infected with hep c. For those with F3 fibrosis or especially those with F4 cirrhosis they will need to be followed by a liver specialist indefinitely.

[gnatcatcher]

LD, I'm one of the people whose liver function has improved post-treatment. Even if my FibroScan reading of 19.5 kPa [F4: cirrhosis] before treatment was artificially high because of operator inexperience, the FibroScan I had at the end of June was around 12 kPa, and my most recent one in early February is only 9.4 kPa [F2-F3]. My hepatologist thinks my next one may be below 9 [F2], in which case I won't need to have ultrasounds every six months.

[Lynn K]

Hey Gnatty that is great news congrats!

Yeah a lot depends on the extent of liver damage. For me with having well established cirrhosis for at least 7 years by the time I treated it is hard to say if I will ever improve. Only time will tell.

But for those with less liver damage the AASLD says post cure they can be treated as someone who never had hep c.