What's with the Ribaviron!

[NewEnglandLady]

Yawsa.

I took my first shot on Thursday night, and had very mild sx.  Mostly just tired.

It is the Riba that is crazy!  I am to take 2 in the am and 3 in the pm.  I take the first dose at 8:30 am and the second at 6:30 pm.

What I noticed first was that my ears were ringing.  This is the 3rd day and after the 6:30 pm dose they are really ringing and I feel weepy and tired.  I'm in the bedroom and my husband is in the den.  I burst our crying because I was singing to my Ipod and he made fun of my singing.  Now I don't want to talk to him.

Maybe I'm just tired, I did take a brisk walk this morning and worked in the yard this afternoon.  I felt fine until the last 3 pills.  I have been drinking a lot of water.

Is this going to get worse?  How many days does it take to build up in your system.  If I have to do 24 weeks of the Riba, I won't have any one left in town that is still talking to me. never mind the clients I make a living from.  It really surprised me that I could not hold back the tears.  It was a burst for sure.  Why are my ears ringing like this?

I want to call the Doctor on Monday and tell them I think I am taking too much.  Maybe 2 in the am and 2 in the pm would be better.  Is it too early to cut back?  The Doctors office said to start with 1000 mg and we could cut back to 800 if need be.

Help!

Thanks, Jane
P.S.  I'm also just starting menopause.  What timing!

[ladybug52]

I don't think it's the riba, but I'm not a dr. The peg-intron has a side of tinnitis which means "ringing invthe ears". Myown had some ear problems which I think might be resolved, or she is keeping qiuet about it. She described a static sound in her ears. I hope I'm not misquoting her.
I had a friend who is a nurse who did only interferon daily for tx of hep b in the 90's. She believes her hearing loss is due to all the interferon. Not trying to scare you, she was on massive doses, not like today's tx.
Talk with your dr.
Bug

[FlGuy]

A few tips:
Do not cut back on the riba, under any circumstances. There's a reason you take 1000 mg a day.  Reducing your meds can compromise you chances to get rid of hcv.  Do not miss any doses.  If the riba affects your blood work (you should have egular CBC's complete blood count to track your blood chemistry) then the doc can prescribe other drug to combat that.
Take 3 in the am and 2 in the pm.  Will probably help your sleeping routine.
It takes a couple of weeks for the concentration of riba to get up to speed.
If you hear ringing, don't assume it's the riba. See if some is dialing your phone.
To make this treatment work sometimes you just gotta suck it up and do it!

[NewEnglandLady]

Thanks for your input.

I know I have to suck it up like everyone else.  I guess I'll just have to find a way to work with the meds.  

I just drank more fluids and took an ibruprophen and feel a little better.  
You are all very brave.

Jane.

[ladybug52]

I think it's good to talk about how the meds are affecting you. I felt really wierd when I started tx but I couldn't put my finger on what it was. I look back now and think it was the anxiety, and who knows if that was really even related to the tx or my state of mind. It's scary having symptoms that are not like your normal self, it's an adjustment to be on the meds, hopefully it will get better.
It is a little early to reduce meds, but talk to your dr if it gets worse. Sorry for my spelling errors I try to proof-read and am not always successful.

[orphanedhawk]

The first week the riba gave me sharp headaches but with more water and added fat to my diet, that eased. I've been having emotional outbursts on and off, sometimes as surprising me, like, where did that come from? You do get used to it, sorta. Its like white water rafting. There are smooth parts, and sudden twists and turns. Grab a paddle and keep your craft upright.  Don't fight too much, go with it and keep your sense of humor !
   BTW: I have a pill splitter and being neurotic I take two and a half pills, twice daily.

[rosebud57]

i had all kinds of symptoms that would make anyone feel crazy. my hearing was ultra sensitive, infact all my senses were enhanced on these meds (don't know which is the culprit.)  i listen to headsets a lot, the last few weeks of tx sometimes i would hear this weird noise in my ears - through or beneath the headsets, but it wasn't static, it was almost like the fluttering of a bees wings then i though maybe i was hearing the electricstatic properties of my own brain magnified through the headsets (i know that must sound REALLY weird).  i am off tx and i don't have any problems like this anymore. as bad as it will get for you. the good news is it is most likely temporary...i know you tx longer than i but you can make it through.

[ladybug52]

I know the smell thing was such a detriment to appetite. I'm so glad I don't smell urine everywhere anymore!
Glad you got into the equine programas a volunteer. I had a job offer once to provide hippo therapy (horse not hippopatumus) but didn't feel knowledgeable enough.
Hugs,
Bug

[purplecat]

one of my worst sx on tx has been severe tinnitus.  I like you had slight ringing the 1st shot and a little sound sensitivity.  My third shot is was extreme. on a scale of 1 to 10 (10 being the sound inside my head) I reached about an 8.  My Hep Dr sent me to Ear specialist(ENT)  Ringing in the ears is a sx of the interferon. Following weeks I'm usually at a 5 a few hours after the shot and it does settle down by the end of the week. My ENT ordered monthly hearing test and has been montoring me this whole time.  I'm week 34/48.  I have to wear ear plugs when out in public to protect my hearing.  Sounds in public are very distrubing so I need to protect my ears at all times.  I cannot enjoy TV without muting the purposely louder commercials.

I'm told that most recover after treatment ends but there have been a few rare cases of total hearing loss from interferon.  I hoping you just might be having the common sound sensitivity. If it does escalate get referred to and good ENT and protect your hearing.  I was getting phantom sounds and now that I've been wearing the ear plugs that has stopped.  

I don't post often but read all the time.  If I can be of further assistance just post me a note.

good luck and all the best

      

[missy60051]

I'm glad to hear you're hanging in there.  I was wondering how you were doing.
I too have a sensitivity to my ears and smell.  Loud music or noise drives me nuts,but weirdly I feel like I'm going deaf.
I have also heard of rare cases of hearing loss.  I think purple cat gave very good advice though.  This might be just because of this new poision entering your body and will soon subside.  I do have a deaf child and have known many who in later years had gone deaf.  Not that this will happen, but do pay attention
if it gets to be a problem.  Ear plugs will protect your ears if need be.
Do see a specialist if it becomes a problem.  They have special equipment that can measure your temponic rythums( can't spell).

Sign language  (since birth)
Cochlear Implant  (at age 17) the whole nine yards that came with it.
so watch those ears.

Hang in there for your first week.  The emotional part, you may consider AD's,but wait and see how your body will react to all of this.  It's just something we have to work out to fight this demon.
Try your best to go with it.
Missy

[mauilady]

Boy am I glad I'm not the only one with crickets in my head; at the moment, I can't tell the difference betwen the real ones outside or the ones in my head.  I saw a hearing specialist, and she said my hearing is good, except for a little bit of loss in my right ear, which is a result of operating a weed-whacker for 25 years.  (With hearing protection, of course.)

But this tinnitus definitely worsens after my shots... then gradually isn't as loud, but never really goes away.  Interferon, huh?  Why couldn't my doctor tell me that?!  

[goldyn]

For a while in the begining of tx i could hear my own heartbeat really loud, alot, it drove me crazy, when i layed down i could hear the woshing sound worse, after a few weeks it stopped, I would take the 3 in the morning and  at night i would take  the 2, i took my last dose at 5:00 pm cause it just helped me relax better at night, but i had to take 6 a day...just hang in there its really new to your body,so just give it some time to adjust, I woulndt lower dosage yet try to stick to it at least till 12 weeks the first 12 are the most important....

[ladybug52]

Thanks for providing an objective answer. I have heard of the hearing problems associated with the interferon, but monitoring by an ENT is excellent advice. So glad you posted. I was worried about the symptoms, but don't like to scare people, and some go symptoms go away on their own. You gave her a heads up on what to do if it continues.
Bug

[purplecat]

I have had a little hearing loss while  being monitored.  My ENT said it has been only slight and protecting the ears helps.  If an audio test would show continued loss then they treat with one week of steriods, and this ususally restores the hearing.  That's why monitoring is important.  They want to catch any problems and treat. Thankfully I have been stable and haven't had to do any steriods. Just google interferon and hearing loss.  Lots if info.

Mauilady-Crickets..LOL, mine is like being under high pitched electrical wires.

Protect your ears everyone.  Purple is my favorite color and I found these great purple ear plugs connected together by a purple plastic wire. They always stay together. Looks like I'm listening to an IPOD while walking down the streets of San Francisco.

Take care everyone  

[madbrad]

I have no clue about the ringing....Your in your loading phase,Its just getting started,I won't lie to you...It gets worse.....But I can only speak from my experience..But I'm kinda high strung anyhow...It got worse and worse till I went anemic around weeks 10-11...

[madbrad]

I certainly didin't mean to come off harsh...But theres no sugar coating it...Some have a easier time of it.But most of us it just beats the crud out of you......

[mauilady]

Crickets are the wrong insects; the noise sounds like katydids.  (Crickets sounds better for some reason.)  But now that you mention it, it does sound like the electrical wires.  But I honestly can't tell if it's the noise in my head or katydids outside.  Guess I could ask my husband, but I don't really want to hear/see his reaction... LOL!

And my heartbeat is really noticeable; guess that means I'm alive!!  Sometimes it almost sounds like a drum in my head.  Between the katydids and that... I dunno... kinda reminds me of that New-Age music!!!  

[nygirl7]

SAID one of my worst sx on tx has been severe tinnitus. I like you had slight ringing the 1st shot and a little sound sensitivity. My third shot is was extreme. on a scale of 1 to 10 (10 being the sound inside my head) I reached about an 8. My


NEL - I developed severe and drastic hemolytic anemia right about this point and the "ringing in my head" almost made me insane - really it was SO loud and constant.

Have you had a CBC from the doctor recently?  If not, please go and get one today.  It takes only one day to come back and if it is the anemia you can get started on procrit or epogen right away.  If it's not you've just given a small blood sample anyway!

I had REAL bad problems with the anemia and by about week 4 I was literally fainting dead away.  I didn't nkow that it actually hurts your head when you faint like a brick is inside your head (please....my family makes enough jokes about things like that LOL).

And...always take the bigger riba dose in the morning.........it might help a bit at first until you build up the serum level.

PS Do you have a rapid heart beat? Have trouble just getting up and walking around, like walking up stairs?

[madbrad]

You know what?
Come to think of it now that you mentioned it..I do remember having a ringing in my ear when I went Anemic......I actually heard my Heart rate thru my ear(carotid runs thru there)...It sounded like a baby in wombs heartbeat on the ultrasound.....

    Ya you better get a cbc done.....I f you have shortness of breath and having ringings its probable that your anemic to the point that you don't have enough red blood cells to carry oxygen to your heart..Which in turns tell your heart to beat faster so it can get Oxygen.....

[NewEnglandLady]

Actually I have only started treatment.  Last Thursday was my first shot and I have taken 2 ribas in the am and 3 around 6:30 pm.  I don't know if just one shot could cause anemia.

The ear ringing started almost right away.  I just took my evening ribas an hour ago, and my ears are ringing louder.  It seems like the riba and not the interferon.

I see the Doctor on May 8th and will be having the blood tests between this Thursday's shot (#2) and the appointment.  I want him to see the results when we meet.  

I feel pretty good most of the time.  I was down and out yesterday though after a brisk walk and working in the yard on Saturday.  I didn't get up until 5:00 pm and then had to almost force myself up.   I haven't had any trouble sleeping as yet.

Thanks for the good advice and for answering the call.  We really need you all!

[madbrad]

Everybody reacts differently to tx....But for the most part we all suffer the same sx..But I can say one thing if you have any sides ,Ribavirin is the culprit..You can bank on that...Interferon occurs naturally in the body...Ribavirin = Rat Poison.