Hep C Discussion Forum

hepcat60 · Senior Member

RE: Tinnitus

Tig · Admin

Hi Lauralou,

I've also spoken to several patients that went through either Peg/Riba or Peg/Riba/? Tx that have experienced mild to severe tinnitus. Many of us here included. I'm still experiencing constant medium level high pitch tinnitus but in the last few days I've noticed the loud rushing water sound that I was experiencing has began to lessen and the high level (volume) has reduced to medium. So I'm going to keep my fingers crossed and hope it continues to improve. I had pre Tx problems and I suspect my trouble with it will never go away.

The reason it happens is likely due to the toxic effects (ototoxicity) Interferon has on the inner workings of your ears. The doctors are aware of it, but sadly many of them fail to inform the patient about all of the potential side effects from Tx. I fear if they did sit you down and tell you everything that has or might happen from these drugs, many people might be too afraid to continue with or seek Tx. The rates of these Sx are well known, but the chances of permanent negative effects are low enough that the benefits outweigh them. Mallani had left a link on a different thread that will give you additional info on the subject. I'll repost it here.

http://www.ncbi.nlm.nih.gov/pubmed/22697091

Best, Tig

lauralou57 · Senior Member

Hi Tig,

I have spoken to quite a few folks with hep C who were on PegIntron with Victrelis who also complained of tinnitus. I have often wondered if any of the hep C docs had any idea why.

Gulla · Member

Hello Tig.

It most certainly does :)

Thank you, Gulla

Tig · Admin

Hi Gulla,

I want to direct you to a helpful list of abbreviations used here and elsewhere. They really simplify the use of these lengthy medical terms that we use so frequently. If I may answer for Sandy, the term she used "1 mo. EOT" means "One month after the End of Treatment". Hope this helps smile

Tig

http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/

Gulla · Member

Hello Sandy.

Thank you so much for your reply.

I am happy to hear you liked Iceland and that you tell your students about it. I am also I teacher. I teach Icelandic to immigrants here in Iceland.

No there aren´t many heptologists here in Reykjavik, as I don´t think there are more than 20-30 patients being treated for Hep C at each given time. We are only 300.000 inhabitants altogether in Iceland. But we have a very fine health/medical/hospital system here, and I am sure that many people in other countries will be surprised to hear that I don´t pay a single penny for my treatment, doctor´s visits, blood tests or anything in relation with the treatment. It is all free, i.e. paid through our taxes.

I am afraid my knowledge of the terminology is limited. What does " 1mo. eot." mean?

I will ask my doctor to give me the precise lab results next time. It is partly my fault, as I don´t ask enough.

Best of luck with your health and life in general :)

Gulla

-- Edited by Gulla on Monday 20th of January 2014 04:49:02 PM

ucbgal · Senior Member

gulla,

i couldn't resist welcoming you for i simply fell in love w/ your clean, friendly, spectacular island on a visit. you will be pleased to learn there are nonfiction articles about iceland in the harcourt reading program here in the u.s.!!!! i would always share my pictures & knowledge w/ my students.

congrats on being undetected week 8!!!!!

i had /still have a mild case of tinnitus & am 1 mo. eot. i've been anemic my whole life & agree w/ you that the 2 are correlatted.

are there many quality heptologists for hcv patients to choose from in rejykavik? also i agree w/ mallani about keeping records of your lab tests. here in the states some labs & drs. have patient portals that post results. you may want to explore this option.

stay warm and be well.

sandy,ucbgal

Gulla · Member

Hi Mallani.

I am so happy for you for being undetected still. Hope you become absolutely healthy.

The doctor has never given me any figures about the blood, only said that I needn´t worry. I´ll ask him about the blood next time I see him.

Thank you for your advice concerning the signature. I´ll do it towmorrow. Now I´m off to bed, because it´s late evening here.

Good night.

mallani · Guru

Hi Gulla,

I did 48 weeks of Victrelis triple as I'm cirrhotic. I was lucky that I was Undetected since week 8, and have remained that way, and have achieved SVR. All my info is in the Signature line beneath my posts. You can do the same by clicking on My Profile, and clicking Signature. You should really keep records of all your blood work, particularly the Hb, ALT and other important parameters. Cheers.

Gulla · Member

Thank you so much, Mallani, for your answer. My doctor says the 12 week results will decide whether 28 weeks will be enough. I am hoping for the best, of course, but will try not to be devastated if I have to do 48 weeks :)

Have you finished your treatment or are you still doing it? How are you doing?

I don´t know the Hb levels. I only know that my blood is not bad. I do have a low blood pressure, though.

Best regards, Gulla

mallani · Guru

Hi Gulla,

Welcome from me as well. From your posts, you're not cirrhotic and started with a low Viral Load. With the Victrelis protocol, if you're Undetected at week 8, you have RVR and qualify for the short therapy of 28 weeks.

Anaemia amd fatigue are common with this treatment, so let us know your Hb level if you can. Sorry about the tinnitus- I missed this side effect. Hopefully it will improve after treatment. Good luck, and ask any questions you like. Cheers.

Gulla · Member

Hi Tig and thanks for your new reply and your kind words. My best of luck to you with your future results.

Best regards, Gulla

Tig · Admin

Gulla,

Yes, I finished my triple therapy on Dec. 4th. My end of treatment (EOT) tests showed the virus as undetectable. I won't have another until Week 12 and if it's still undetectable, then they test again at the 6 month mark. If it's still undetectable they classify it as SVR or Sustained Viral Response. That's a big name for cured! That's what we are all fighting for and something worth doing. Sometimes we relapse and sometimes we win, but one thing is certain, we're all in it to win it! One way or another. If we fall down, we get back up and keep fighting. The side effects (Sx) can be rough but they're tolerable and doable. If you're having any problems, let us know and we can provide you with some ideas and ways to minimize them. Unless there is a reason you haven't mentioned, I see no reason why you should have to do 48 weeks of Tx. Just my opinion of course!

My tinnitus did last my entire Tx period. It has persisted since ending Tx, but is less than it was. Sometimes it can last long term, but each of us is different and only time will tell.

I'm not familiar with those test values you gave. However if your fibrosis score was a 2 out of 6, then cirrhosis is unlikely And if the other is your inflammation, then that is mild too. Your viral count of 200,000 is low as well. All of those figures adds up to an excellent chance of achieving SVR. It all sounds very promising to me. Take care!

Tig

Gulla · Member

Hello Zlikster and thank you so much for your kind reply. I hadn´t seen it before.

I am sorry to hear that your tinnitus hasn´t gone away. It is awfully tiring to listen to day after day. Thanks very much for your good advice. I am also very sorry to hear that you relapsed.

I don´t relly know the English terms for my liver condition, but on a scale from 0 to 6 my fibrosis(??) was 2. The other count was 3 on a scale of 0 to 18. I don´t know if this tells you anything, as I don´t have the English words. My viral count was around 200.000 beore I started the treatment

-- Edited by Gulla on Saturday 18th of January 2014 07:02:55 PM

Gulla · Member

Hello again Tig and thank you so much for your kind and encouraging words. My doctor has told be that there is still a 50/50 change as to whether I shall have to do 28 or 48 weeks.

I understand that you have finished your 28 week treatment. Have you had any results as yet? By the way: Did the tinnitus go away or did you have to live with it for all 28 weeks?

Tig · Admin

Hello Gulla,

Welcome again!!! I'm so glad you replied back. Trust me, you're among concerned, knowledgeable friends here and we've all been or are at where you are now. We can relate and are always here for you. This forum has been a life saver and of great support to people with HCV or their caretakers for years. I don't think there's a better forum or group out there that provides the same level of help we do! (Blowing our own horn now!) So please stick around and get to know everyone, I'm glad you're here!

The fact that you have tested undetectable at week 8 classifies you as RVR. That stands for a rapid responder to treatment. That's excellent and is a very promising sign that your treatment will be successful! It also means, according to the Victrelis algorithm, that you only have to treat out to week 28, provided you're not cirrhotic. So you should be thrilled with those results! What has your doctor told you? Let us know, we'd love to know and share your progress.

You can expect to be tired. I was a couch potato for the entire time. I was terribly fatigued, but Victrelis and Ribavirin are well known causes of anemia. It's to be expected. If you're tired, don't push too hard. Keep yourself moving by short walks and light exercise but nothing extreme while you're on Tx.

Use our search function above and check out the various info here. Theres a lot to know! If you can't find what you're looking for, just ask and we'll do our best to answer your questions. You're among friends!!

Best, Tig

Zlikster · Guru

Hi Gulla, and welcome to this really great community of hep c folks willing to help with anything!

i don't wanna scare you, but i am now almost 7 months post tx and tinnitus, which was introduced from the first interferon shot, is still not gone (bit lower, but i still can't sleep properly)...I had a really mild high freq (12KHz) tinnitus on both ears, but from interferon it got worse and new one was introduced (cca 1.3KHz tonal sine wave like on left ear). Tinnitus is the only reason i do not want to repeat therapy (i am relapser), otherwise every other crappy side fx is manageable (in my view).

Please let your hepa/doc know about tinnitus, since lots of people do not tell their docs about it, hence "official" interferon statistics about tinnitus being in only 1-2% cases. It's more like 20-30% i think. People have to be warned about possible perm damage to their audiotory system by interferon oversaturation.

If you can measure your tinnitus with eg. a synthesizer with sine wave sound (if it's pure tonal tinnitus), u can find what note/freq is, then you can make yourself a randomly gated sine wave tone just few Hz below or above your tinnitus and play it with your music/white noise. It helps a bit. If you have iphone or andorid cell phone you can download applications with white noise/tinnitus tone mix. Also there is app (for windows and iOS) called Tinnitus Tamer.

please let us know more about you. Liver condition, Viral Load pre tx, etc...

all the best

Gulla · Member

Hello Tig and thank you so much for your comment.

I was very glad to hear from you and Gracie. I was diagnosed with Hep c 1 eight years ago, but probably caught it 25 years ago. This is my first treatment (week 13 now). I live in Iceland, so there aren´t any patient groups for me to meet with, so I´m happy to have found this chat.

The blood test after the first 8 weeks showed zero, so I´am very optimistic.

Other than the tinnitus I am handling the treatment quite well. I am tired all the time, I used to run every day, but now I take the elevator up one floor at work. I am a 59 year old woman, language teacher in Iceland.

Tig · Admin

Hi Gulla,

First, I'd like to welcome you to the forum! I'm glad you found us. There are lots of caring, helpful people here!

I just completed 28 weeks of triple therapy with Victrelis. i can say without hesitation, one of the worst side effects is the tinnitus. I had it mildly pre treatment, but it began to increase soon after I started the Peg and Riba. When I added the Victrelis, it exploded in volume! It sounded like I was standing next to a roaring, rushing river! The sound of running water more than once got me out of bed to see if I left the hose running! I actually did a couple of times! There are many comments here on the forum from others experiencing the same thing. It's a side effect of treatment and may get worse before it gets better. But you may get lucky and it will subside. After treatment end it should return to normal, hopefully. I still have a problem however. You might ask your doctor if you can take Melatonin. It has helped me some. You can also try a noise generator to mask the sound at night. That has helped a lot. Use our search function at the top and you'll find several threads on the topic.

When you have time, I invite you to introduce yourself in this section. If you can let us know a little about yourself, testing results, treatment, etc., we can give you better informed opinions and help. Best of luck!

Tig

Gulla · Member

Thank you, Gracie. I don´t think I am anemic, but I was wondering if I could have a low blood pressure. Strangely enough the doctor hasn´t measured my blood pressure yet. I must ask him to do so. Good luck with your treatment :)

-- Edited by Gulla on Saturday 18th of January 2014 03:14:04 PM

Gracie · Guru

I have tinnitus too. I am also anemic (slightly) so was wondering of there was any correlation. I'm on 4th week incevik/Pegasus/copegus.

Gulla · Member

Hello. I am in week 13 of PegIntron, Copegus and Victrelis and my main problem is tinnitus. I get loud tinnitus for 2-3 days and then some days without. I am of course also very tired, but the ringing in my head makes me even more tired. Has anyone experienced tinnitus and does anyone know what to do about it? My doctor hasn´t come across a patient with tinnitus as a side effect before.

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