New- Hep C treatment side effects

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Ellen4u
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/11/2011 11:32 AM (GMT -7)   
Today is my first day on this site. On July 15th, 2011 I began treated for hep c, genotype 1 b. I am having multiple side effects requiring a blood transfusion, as well as temporarily discontinuing the ribovirin. Within three weeks of restarting ribovirin the mouth ulcers are back and as of this week I am having short term memory problems, a throat so dry I can hardly swallow.
Have others been experiencing these side effects and if so, how can I handle this. Thanks in advance for any and all pointers.

Post Edited By Moderator (hep93) : 12/11/2011 11:07:59 AM (GMT-7)


MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3991
   Posted 12/11/2011 12:02 PM (GMT -7)   
Ellen, Welcome to the Healing Well forum. One of our Moderators will be along shortly to welcome you more formally.

One thing, the little pencil mark in the right of the post is for the author or a moderator to edit the post. You might want to rename your post so that you get more responses. Right now it says nothing...and so won't necessarily find the best audience. Try something like: Hep C treatment side effects...something that will grab posters' attention.

I have been coming this site for over a year. My Mike is the one with Hep C. He had a liver transplant 7 months ago, but the Hep C is back and at some point he will need treatment (again). He had Interferon and Ribavarin in 2003, but the side effects were horrible, he did not clear the virus, and eventually he stopped the treatment completely. They had him take the procrit and neupogen injectiont to support his white and red blood cells, but he just could do the treatment.

You don't tell us what kind of treatment you are on, if you are in a test group. There are several new drugs out there in addition to the standard protocol with Interferon and Ribavarin. We are especially interested to know if you every had treatment before and if there are new drugs in your protocol also.

I notice that you are a genotype 1b, which is reported to be easier to clear than 1a. the type my Mike has.

Is your viral load dropping?

I think anyone on Interferon/Ribavarin needs to think of this as a type of chemotherapy and not expect to feel totally wonderful during the treatment...it is of limited duration and has a really good carrot out there--no Hep C ruining your liver...IF YOU CLEAR. I say, think of the good side...like finding out that you are bald AND CLEAR of cancer! That would be a good thing.

Mike was sure he was dying from the treatment and won't really want to try a new round until he can find one that uses the new drugs without the OLD protocol. But so far he is still recuperating from he surgery and they are not recommending treatment yet, though his viral load is really high.

Come often, post offen, folks will answer your questions as best they can.

Mama Lama
Mike received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/11/2011 12:29 PM (GMT -7)   
Hi, Ellen, and welcome to the forum! I took the liberty of giving your thread a subject. As ML said, you will get more responses that way...plus our administrator wants threads to have subject titles.

I'm so sorry that you are experiencing bad side effects from the Ribavirin. As ML said, treatment is rough and it really IS chemotherapy. When I was first diagnosed with hep C (genotype 1a) in '93, the only treatment available was interferon injections 3 x a week. I experienced very low white counts with that, within a few weeks, and was taken off treatment. This happened twice. Now they have drugs to counteract such side effects.

Are you taking anything for the mouth sores? You might want to ask about Nystatin (commonly known as "swish and swallow.") I am taking it post transplant.

The new treatment that is available contains a protease inhibitor and is very effective against genotype 1a. Not sure of 1b. Regardless, it contains Ribavirin. I believe all the current treatments do. There may be something in trials that doesn't contain it.

I'm having side effects from my transplant meds, too. But it sure beats the alternative of being 6 feet under!

I hope that you will be able to get antidotes for your side effects and that you can continue treatment. Without treatment, you run the risk of developing cirrhosis and liver cancer (which I had and required a transplant, and still have the hep C, which will require treatment at some point.) Are you being seen by a hepatologist or a GI doc? Do you know if you are having a positive response to treatment? Has your viral load dropped?

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

Post Edited (hep93) : 12/11/2011 11:34:23 AM (GMT-7)


Ellen4u
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/11/2011 1:04 PM (GMT -7)   
Thanks for the speedy response. I am treating at Mayo. Liver is a full stage 3 with lesions, spots, and scarring. Started treatment using a new drug, telaprevir along with ribovirin/interferon. The new drug was suppose to be for 12 weeks. I made it to the 7th week. Using three different meds for the ulcers. Nystat, magic mouthwash, and an oral dental paste. Have a script for the low blood problem. Will avoid the need for another transfusion by keeping closer watch on my blood levels.

I'm fearful I won't manage the complications and have to quit treatment. I dislike my options. Of course, so does everyone else. You are right, beats six feet under. Sure wish remedies to control the side effects were known to me.

Thanks for listening.

Ellen4u
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/11/2011 2:04 PM (GMT -7)   
Thanks for the speedy response. I am treating at Mayo. Liver is a full stage 3 with lesions, spots, and scarring. Started treatment using a new drug, telaprevir along with ribovirin/interferon. The new drug was suppose to be for 12 weeks. I made it to the 7th week. Using three different meds for the ulcers. Nystat, magic mouthwash, and an oral dental paste. Have a script for the low blood problem. Will avoid the need for another transfusion by keeping closer watch on my blood levels.

I'm fearful I won't manage the complications and have to quit treatment. I dislike my options. Of course, so does everyone else. You are right, beats six feet under. Sure wish remedies to control the side effects were known to me.

Thanks for listening.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/11/2011 2:14 PM (GMT -7)   
Well, I feel better knowing that you are seen at Mayo. I've been followed by them since '06. As noted above, I got my transplant there (Mayo FL.) Have you been evaluated for transplant yet? Of course, they may want to see how you do on treatment first.

Hey, ask your doc about possible remedies for side effects. Are you a little depressed? Usually, patients are placed on an antidepressant when they start treatment. I have found that the Mayo docs actually like you to ask questions and be knowledgeable and involved in your care. This becomes especially important if you are considered for transplant.

Ellen, we are here to support you and give you whatever information we can. So please post often.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

gavemegrace
Regular Member


Date Joined Sep 2013
Total Posts : 20
   Posted 9/9/2013 9:44 AM (GMT -7)   
Just wanted to say Hi and I am very glad to be here!
Savemegrace
Blessings,
GivenmeGrace

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2013 1:18 PM (GMT -7)   
Savemegrace, welcome. But please start your own thread by clicking on New Topic instead of Reply and tell us about yourself and your liver disease. You picked up on an old thread (2 yrs. old) to which nobody has replied since then.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
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