Having issues with side effects

[Puresteel55]

I am beginning the 4th week of treatment tomorrow. I am taking the medication at night. Each morning I wake up with what seems to be a hangover from hell. Sometimes it lasts only a few hours, sometimes all day. Having trouble working and considering taking leave. I can't believe so many on here have little or no side effects!
Any ideas? I guess I can't change to mornings.

[strangerbynight]

I am beginning the 4th week of treatment tomorrow. I am taking the medication at night. Each morning I wake up with what seems to be a hangover from hell. Sometimes it lasts only a few hours, sometimes all day. Having trouble working and considering taking leave. I can't believe so many on here have little or no side effects!
Any ideas? I guess I can't change to mornings.

I am on generics harvoni and just finish my first bottle and i have no side effect, you just have to drink lots of water, i take my meds every morning at 8 a.m, you should have take ur meds in the morning, that way you can drink more water in the day, is ur pee pee light yellow or pale? If not then you must be dehydrate, these meds needs lots of water, if you weigh 160 pounds then you should drink 80 ounces a day for example. Join in facebook group, theres alot of active member that are taking these meds and they can share lots with you there, although this forum is awsome too..

[gnatcatcher]

Puresteel55, it IS possible to change the time you take the medicine gradually. Your doctor can advise you on what pace of change would be best for whichever medicine you are taking. Your doctor may also be able to prescribe something for side effect relief.

If you're on Harvoni, yes, it does require staying well hydrated, which helps lessen headaches. (Harvoni is what I have experience with; I don't know about the other HCV medicines.) But your side effect seems so severe that increasing fluid intake alone may not be enough to solve the problem. Every body is different. I hope you have a compassionate medical professional supervising your treatment who will work with you to achieve relief.

Gnatty

[Puresteel55]

Thanks for the responses.
Urine is pale to clear, so I don't think hydration is an issue but I will up the water anyway. Unfortunately, my doctor is pretty much hands off with the treatment. I have to ask questions and I may or may not get a response. However, I have a great therapist with my insurance carrier that can intercede with the doctor. I do want to adjust to morning if possible.
I am on brand name Harvoni.
This is really frustrating to hear that almost everyone has had no side effects. Have no idea what the difference could be.
Thanks again.

[gnatcatcher]

Glad you have someone who can go to bat for you with the doctor. Other resources are the pharmacist (if you got your Harvoni from a specialty pharmacy, they usually have helpful staff pharmacists and nurses on call) and the manufacturer (Gilead has staff you can phone). During the clinical trials, headache was the second most common side effect (see Table 2 in the prescribing info that came with your bottle).

If it makes you feel better, nearly everyone takes Zantac without side effects, but when I was on Zantac, I had such excruciating headaches, it hurt too much to lay my head on a pillow (it felt like my entire skull was a vise being tightened around all of my brain). Needless to say, I can sympathize with what you're going through.

Are you on the 8-week, 12-week, or 24-week treatment? If 8, you're almost halfway there; if 12, you're nearly a third through. This, too, shall pass.

[Puresteel55]

Thanks for the reply. I am on the 12 week treatment. Viral load is 1.75 mil. but blood test show F4 fibrosis activity. Had a scan of some kind and nurse said all it showed was a slight amount of fatty liver. Asked for a copy of the report but still haven't received.

[gnatcatcher]

Glad you know to ask for a copy of each report. Yes, 12 weeks for F4 (viral loads jump around a lot, anyway). Curing the HCV often allows the liver to get better enough that the fibrosis level decreases, as in my case, where it had already dropped to borderline F2-F3 in February and my hepatologist thinks it might be down to pure F2 by next February, when I'll have one final FibroScan.

I hope your body is adjusting to the medicine. Some of us here have conjectured that the immune system, which had unsuccessfully fought off the virus for so long, is greatly confused by this new, hardworking ally (the Harvoni), so that may account for some of the tumult you experienced.

Best wishes,

Gnatty

[KY]

Puresteel, I have one week to go on a two month TX of Harvoni. For me the side effects vary. No headaches but I have had slight depression at times, though nothing severe (and I never get depressed so I know it is the TX) and extreme tiredness in the afternoon. I have good days and bad days. Today is a good day, feel good, went to the gym, etc. Hope the best for you. Keep us posted. Don't be discouraged.

[Puresteel55]

I'm not sure I have even had a fibroscan. The f4 was noted on a blood test. I had a CT scan at it came back very good according to my hepatologist. Just a mild amount of fatty liver which the Dr. says he is not concerned about.
I have started taking the meds in the morning and the side effects are better. I am a very high energy person so the difference is dramatic.
Thanks for all the replies. You guys are awesome.

[gnatcatcher]

A blood test such as FibroSure is used either in addition to or instead of a FibroScan. These noninvasive methods have pretty much replaced the biopsy.

KY, congrats on finishing treatment! Puresteel, glad yours is going better.

Gnatty

[sandles]

Hi Everyone  I am so glad to have somewhere to go to get some real true input on what it is like to live with HepC and what is going on with the new treatments. I am experiencing the worst thing I have ever had to go through on the Drug Epclusa and the side effects were really down played to me or I maybe could have prepared myself.  I am 55 years old and was in great health with no symptoms from the Hep C but now everthing has drastically changed. I had to quit my job because there was no way on earth that I could obligate to do anything with these side effects. most of the time I am so weak that it is hard for me to lift the kettle to make tea. I used to be strong but now I dont have the strength to open the window. The worst part is the memory loss and confusion. I don't believe my doctor cares one bit as she had them mailed to me as soon as she knew I was approved and has no intentions of seeing me until the Epclusa is finished!!!!! I am very grateful to have this chance to get rid of this killer virus but just wish I would have had some honest advice about the complete truth of the severeness of these side effects so I could have made better arrangements with my employer and family. When I try to look up Epclusa there is not much on line about it because its still so new.   

[KY]

Sandles, thanks for sharing. I am sure you already did this, but if you search Epclusa on the forum and other sites, you should be able to find others who have gone through the treatment. Last Monday I finished a two month course of Harvoni. I retired last year, so I was able to nap when I got too tired, which happened nearly every afternoon. Not sure how I would have done if I had to go to work every day. I am getting my strenth back a little every day (I became anemic while on HEP C so am taking iron pills.)

One thing I know is people respond differently to the same drugs. Once I took Zyrtec for allergies and felt suicidal, something I have never felt my whole life. But that is how the drug affected me.

 HEP C medicine is so costly I don't think there is the option to ask for a different drug. So I would encourage you to bear with it, eat healthy, sleep well, keep telling yourself this will pass and before too long you will be undetected and HEPC C free. So it is worth the short term side effects. If you believe in God, this helps a lot because you can cast your cares upon Him and know He knows and loves and cares for you.

Keep us posted. Stay positive and look forward to being free from the virus (probably by week 4 you will be free.)

[Puresteel55]

Updated results in:

Pre TX
ALT - 212
AST - 188
Viral Load - 1.75 mil

4 week check up
ALT - 22
AST - 21
Viral Load - UNDETECTED

[Puresteel55]

Updated results in:

Pre TX
ALT - 212
AST - 188
Viral Load - 1.75 mil

4 week check up
ALT - 22
AST - 21
Viral Load - UNDETECTED

[gnatcatcher]

Congratulations, Puresteel!  By now, you're in your seventh week -- have the side effects lessened?