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Avatar universal

side effects of new tx

Hello, can any one else expound on your experiences with the side effects of the most recent tx.?
Thinking about doing it, I am very nervous. I can't tolerate much for meds., even coffee makes me ill.

thank you God bless
Best Answer
Avatar universal
Honestly Pitter I haven't done Harvoni but if I were in your shoes I would run not walk to the nearest Hepa I could find and get started.  I'm with you on meds not being my best friend including coffee!
Not to scare you but, think about the meds you possibly would have to take if your liver acts up.  Now, that would not be pleasant
There has never been a better time to treat....EVER!   And just think, you get to talk to all of us daily for the next few months as we guide you thru. What could be better then that, I ask?
......Kim.
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6708370 tn?1471490210
1 word: Applesauce

I used to have a huge aversion to swallowing pills but during my first treatment with Sovaldi, I just put the pill in a tablespoon of applesauce and swallowed. Never felt the pill

Now, I have no problem taking pills but my regular vitamins and diuretic are much smaller than the horse pills like Sovaldi so I just take them all at once!

Good luck to you!
Helpful - 0
Avatar universal
My doc at the University of Penn told me that since I have been on every new med that has come along since the mid 80s that I have built up a resistance to any meds that I take.I could have been in a trial that would have been a much better fit than what Im on now but my platelets are too low and my bilirubin is too high to qualify for a trial which is a shame.
                                     Good luck
Helpful - 0
1 Comments
GP7852, I am sorry to hear this for you, I will pray for you.
Avatar universal
Harvoni was a piece of cake for me.It had no ill effect at all in my case even though I relapsed on it.I am 3 days into zepatier and ribavirin and this so far is not a piece of cake.It is really wearing me out and the head is in a steady ache,not brutal but a constant bother.Maybe it will get better with time.Go with Harvoni.
                                         Good Luck
Helpful - 0
3 Comments
thank you GP7852...I am sorry to hear  that happened. Do you know why you relapsed?
and good wishes for this tx...hope you feel better soon!
and good wishes for this tx...hope you feel better soon!
Avatar universal
Hi I had a hard time with the meds also I treaded in Jan. 2012 and did 24 weeks.  About the 8th week it got real hard no sleep, food tasted horrible and so very tired but I just prayed a lot and tried to be thankful  it was UND and I stayed UND from first  blood draw and at the end of week 4..  Just keep going and You will see the rain bow at the end of your treatment ..
bbj
Helpful - 0
1 Comments
thank you bbj2856
Avatar universal
Thank you all for your responses ...a year ago. Went to Dr. today, and my alt and ast #s shot up a bit, and my viral load is at 9 million plus.  So I am getting set up to see a new doc recommended by my GI.  If my ins. will pay . hpefully.    any new feedback on Harvoni?  I cant swallow 4 big pills aday.
I have a choking problem, Harvoni is only 1 a day. But my ins. , last year would only cover Vikuera. 4 big pills a day.
Thank you in advance my friends.
Helpful - 0
Avatar universal
I took 24 weeks of Harvoni and 12 of Ribavirin during this last course of treatment.  I just got my 12 weeks EOT results and have reached SVR.  It feels wonderful.  The side effects, even with the Ribavirin, were tolerable.  Some rash (probably Ribavirin), fatigue, huge appetite for sugar and carbohydrates, but still lost weight.  Fatigue and some neuropathy remained post-treatment, but are fading now at 14 weeks EOT.  It was so worth doing and I would have no hesitation in encouraging anyone to go ahead and do all they can to acquire the Harvoni and Ribavirin too if your doctor thinks it will help.  Worth fighting for.
Helpful - 0
1 Comments
thank you Bilrac!!!
Avatar universal
I haven't posted in a long time.
Last post I was concerned about taking 5 or more pills a day ,
I should have clarified, I have a really bad phobia of swallowing large pills.
I know it seems sill to some, but I choked pretty badly on a large pill once, and now I am terrified of swallowing pills. I chew them all no matter how gross they taste. I know that you cant chew these meds.
I contacted Harvoni to see if they could get my insurance co. to cover Harvoni, haven't heard back yet.
thank you.
Helpful - 0
Avatar universal
That should have read ' the END is worth the game'.

That was the typist, not spellcheck (I turned that off ). : -)

Also, AWM is right - a positive attitude can help so much!

Pat
Helpful - 0
Avatar universal
Phyllis:  PLEASE, of you can, hang in there - keep on keeping on!  I, too, am Gt3 and, yes, the fatigue was very bad, but,the end result is worth it!  I was UND at EOT 12 (12 weeks after finishing the last pills) and feel so well, I am sure I still am.  Dr is going to do an EOT24 Lab to be sure.

As the the depression, mood swings and anxiety, talk to your Dr s/he can give you something to help with that.  

Also, often just being aware of it can help.  You say, 'here I go again' and try to do, read, listen to, or watch something funny, happy, etc, to cheer yourself up.  If you have an understanding best bud, family member, spouse, etc, get them to help you, by finding things to make you more cheerful, to make you laugh.  Come on the Forum and talk to us.  WE ARE ALL IN THIS TOGETHER! All of this helps.

Oh, and quit watching the news, sad or 'deep' movies, etc.  They depress anyone, but those of us on meds, way more.

Try to walk around outside as much as you can without wearing yourself down.  The fresh air and sunshine do help.  I see you are also in Florida.  This time of year, it may need to be early morning or late afternoon/early evening.  Our FL summers are nothing to sneeze at.

Things should have leveled out by now in your treatment - maybe improved a little.  Truly the send is worth the game!

Start counting down instead of up!  Won't be long now!

Blessings and on to SVR!!!

Pat



Helpful - 0
Avatar universal
I think there is a lot more to the side effect issue than just what pills you are taking. I've heard that those who took interferon previously have an easier time  and often report no side effects. Wonder if it is the memory of how bad interferon was? also,sicker patients (cirrhotics) may have a bit more sides. And I think motivation plays a part as well. If you are the type who wants to get rid of the virus whatever it takes, maybe that would cause someone to be more tolerant of side effects. Anyway, just my random thoughts on side effects.
Helpful - 0
Avatar universal
Been on Sovaldi/Ribavirin for about 17 weeks.  7 Weeks to go.  It has been very rough for me.  Depression, mood swings, anxiety and of course just fatigue.
I would like to stop it right now.  The virus, genotype 3, has been clear since month January 6.  Anyway, I am going to try to go the full 24 months.
Good luck to all,
Phyllis
Helpful - 0
1 Comments
How are you doing Phyllis?
Avatar universal
regarding number of pills:  I, and others on the Sovaldi/Ribavirin took either 6 or 7 pills a day.  No bil deal.  I took the Sol & 3 Riba in the a.m. and 3 Riba in the p.m. (12 hrs apart).  Had no problem with it - and did it for 24 weeks.   Please fon't put off tx because of Number of pills!  

Good luck, which ever way you choose, and Blessings,

Pat
Helpful - 0
1 Comments
hi Patra, it isn't the # of pills, it is the size of them.  I choke on even small pills.
Avatar universal
I cleared withViekira Pak. I was scared because I had a lot of trouble with anemia from ribavirin over the years. I didn't have a problem on Viekira Pak. Interferon makes ribavirin worse so no interferon was helpful. And the whole treatment is over in 12 weeks. You are right about the pill burden. So it comes down to how fast you want to get rid of the virus. Lots of luck to you.
Helpful - 0
1 Comments
thank you AWorried mom.
Avatar universal
Thank you again for your replies...I appreciate it a lot. I went to the Hepc doc today, my insurance will only cover Vikurepak...probably spelled it wrong.  But my biopsy didn't change much from 7 yrs. ago...so I may wait til next year, and see if the ins. co. might accept Harvoni...that ones sounds better and easier to take??? Onky 1 pill  a day, as opposed to 5 a day. and Vk is taken with Ribavarin.
Any thoughts on this?
Thanks, a lot again,
Pitter
Helpful - 0
1689583 tn?1387752394
I am on day 3 and feel great , no sides whatsoever . I work , go to the gym do all my normal daily functions with no problems at all. These drugs are amazing . So grateful to be on them .
Helpful - 0
1 Comments
Than you printze!
Avatar universal
I just finished Harvoni and I'm one of the many warriors on this site who have been through several treatments.  Harvoni is not only head and shoulders above the rest in terms of cure percent, but also in terms of minimal side effects for most people.  At one point around the holidays I was experiencing headaches, but I cut back on all the sugary and salty holiday  food and drank more water and from that point on my headaches were cut way down.  I think you'll be alright with the Harvoni, I did 12 weeks and it went pretty fast, now I have to wait another 12 weeks to see if I've made SVR.  Good luck to you!!
Helpful - 0
1 Comments
48 weeks, did you reach SVR?
317787 tn?1473358451
Hi there, everyone has given you excellent advice.
I think everyone is afraid of the unknown.  I remember taking my first injection of interferon.  I was very afraid.
It turned out it was not as bad as I thought.

With Harvoni, from all the people on here and other sites I visit there are very few side effects.  Headaches are one, fatigue.
I have read that people take it a few hours before bed.
Just an idea, of course follow doctors directions.
There is a site a nurse runs, Lucinda Porter, there is lots of information there as well.  I hope that is ok to say :)
This site provides the most support I have ever seen.  Everyone is kind and caring and will help you every step of the way.  There is always someone up 24/7 LOL
Take care
Dee
Helpful - 0
1 Comments
Thank you Dee!!!
Avatar universal
Awwww Pitter, what a sweet thing to say. But as moms,,we never stop worrying.

Please don't fail to try one of the new treatments because you are afraid of side effects. What's the worse thing that can happen?? If you can't stand it, you have the right to stop the treatment. But, I bet you would be just fine on  Harvoni. This disease has taken so much from so many, don't let fear take the chance of cure away from you.
Helpful - 0
663420 tn?1248677385
I am on my second day of taking Havoni and was concerned about side effects as anyone should be. I wouldn't go so far as to say there are no side effects but whatever they are they're far more manageable then anything I have taken in the past. I have received maybe just a slight headache after about an hour of taking it and I have some slight metallic tastes in my mouth and some kind of weird feeling that's hard to described but overall I think it's very tolerable and after a few hours you may not hardly notice anything. I may be feeling some fatigue with it but I suffer from fatigue anyway so it might be a little worse than normal for me but if this is not a problem for you prior to treatment then you may not notice anything. I have to say I wouldn't worry about it, just do it and get it over with. You will be happier in the long run.
Helpful - 0
1 Comments
thank you Keith!
I am still working on trying to get Harvoni...
Avatar universal
thank you Patra.
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Avatar universal
YES!  You CAN do it if Ins does not pay.  Once you receive a denial letter, file an appeal.  If you receive a second one, then you can go to the Company and apply for their assistance program.  

And, BYW, don't give up on your Ins Co yet.  Many reveived approval right away.  Many more had to appeal, but got approval.

One step at a time here!

Blessings.

Pat
Helpful - 0
Avatar universal
thank you worried mom.  I hope you can become a not worried mom :)
Glad that you did well with that tx...are you SVR?
Helpful - 0
Avatar universal
thank you Carl, so glad for you that you are doing well with it! Good to hear!
Best wishes to you!
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