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180992 tn?1383377657

anyone else having major tinnitus,hearing loss and phantom hearing problems SX

I found out yesterday(end week 20) I am in placebo group A prove 1 trial VX-950 so I have to do regular 48 week treatment did not receive VX950.  Vertex won't tell me my PCR until week 24 so I do not know if UND or not.  My ear specialist told me to have private blood test to find out PCR to decide now if I continue or chance permanent hearing damage if I decide to continue. Had blood test yesterday.  If I come back detectable then no brainer stop treatment. I'm end stage 1 grade 1 nodel so I do have time for possible more advanced treatment.  If I'm UND I have a 70% chance at this point to clear if I continue.  Do I chance hearing damage or stop?. Dr does not know if end TX tinnitus will stop. Shot 18 I started Phantom hearing with the tinnitus. I have had regular hearing test and no further damage.  1st test showed high pitched loss. They did not do hearing test before TX so no baseline to compare. I recommend new TX starters have hearing test also! I've never heard this SX to others.  Anyone else out there?  Must decide next week if UND what to do. Do I go on if UND and chance permanent hearing damage?  Any advice will be appreciated.
40 Responses
Avatar universal
I've heard of tinnitus being associated with treatment, but never read about it resulting in permanent hearing damage.

If it were me, I'd probably consult with another ENT to confirm permanent hearing damage is a possiblity and why not discuss it with your treatment doctor as well since they may have some tx related data on this.

Assuming permanent hearing loss is a possiblity --

If you do conclude that permanent hearing damage is a possiblity, then stopping treatment sounds like the right decision unless you have very advanced liver damage and then you have to weigh the relative risks.

As to an early PCR,  -- it might make sense but frankly even if it shows you're non-detectibe, do you really want to continue and risk permanent hearing loss? That's the question. But again, first find out if your ENT isn't overreacting.

All the best,

-- Jim
151263 tn?1243377877
I've got tinnitus, also in the VX study (week 23). I think it usually clears in most who have it after treatment. Pretty sure permanent hearing loss/damage is rare, albeit possible. I've heard of quite a few others getting ringing in the ears during treatment too, so it's definitely not a rare occurrence.

And you can get your VL's before waiting until week 24. Myself, PDS, PLN and APK all got our VL's less than a week after our week 20 visit. Your doctor can call you and tell you verbally on the phone how you did. Personally I'd want to know ASAP, did you experience any INF or riba dose reductions? Especially in the first 12 weeks because no rescue drugs were allowed?

180992 tn?1383377657
I'm at a big reseach center with much experience.  Most improve into treatment and tinnitus stops after tx.  because I did not improve they sent me to ENT. They have been monitoring me right along.  Worry is the phantom hearing that started shot 18.  My brain is now getting involved and hallucining phone rings and beeping sounds.  This not normal.  It is my decision if UND and just wanted to see if anyone else has tinnitus, now off treatment and it is gone or any phantoms out there?  Thanks to here from others who have experienced Tinnitus. I will get private VL test back next week and maybe I will get the info sooner from Vertex instead of week 24, hope so.
180992 tn?1383377657
Sorry forgot dose answer. Reduced IFN week 9, 10 and 11 to 135MCG. on full dose 12-21 week and counts have been good and holding. All of you on Prove1 who got PCR earlier than week 24, where any of you Placebo group A? Or are all lucky and got the VX950?
Avatar universal
After finishing 100 total weeks of therapy & three mths. of maintainence, I have just noticed a ringing in the ears and that sounds made are terribly loud to me. I am constantly turning things down. It makes no sense to me at all, since I have been off of everything since Aug. 06?
Sandy
151263 tn?1243377877
Myself and pds are in the 48 week VX group, pln and apk are in the 24 week VX group. Labrat, travel mom and ?? have yet to unblind. We are all in the same Prove 1 stufy you are in. And yes you can get your VL's earlier than 24 weeks. But you have to call your doctor and insist that he provide them for you. Believe me they are available no more than a week after your week 20 visit (i.e. just as long as it takes for your week 20 lab results to be processed).
151263 tn?1243377877
Actually, forgot to post this report about hearing loss and treatment as well. This one states that hearing acuity does attenuate in a significant percentage of those treating, but most patients recovered within 2 weeks of stopping the drugs.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8561688&dopt=Abstract

With the increasing long-term use of interferon (IFN), several new adverse effects have been recognized. Very little attention, however, has been paid to auditory acuity. We encountered 3 cases of sudden hearing loss associated with IFN. We then conducted a prospective study to assess the auditory function of 73 patients receiving IFN. Auditory disability (tinnitus and/or hearing loss) occurred in 32 patients (43.8%) during IFN therapy, among which audiometry documented sensorineural hearing loss in 27 cases (36.9%); 17 (48.6%) of the 35 patients receiving IFN-beta had auditory disability, including hearing loss in 13 cases (37.1%), and 15 (39.5%) of 38 patients receiving IFN-alpha suffered from auditory disability. There was not much difference between the influences of IFN-alpha and -beta. Auditory disability frequently developed in the later stages of treatment, and most patients recovered 7-14 days after the discontinuation of IFN. The results demonstrate that sudden hearing loss can occur as a side effect of treatment with IFN. This may reveal the association between autoimmunity and sudden hearing loss.

And here's an old thread from medhelp, apparently with a doctor weighing in:

http://www.medhelp.org/forums/Hepatitis/messages/36008.html

There's a zillion other links online, just google it with interferon and hearing loss.
Avatar universal
Hi, I'm not sure what tinnitus is but I am in the study.  Like mremeet said, I got vl results within 1 week after reaching the 20 week point.  Not sure why they'd be telling you that you have to wait for 24 weeks...we're supposed to get them at week 20 no matter what group we're in.  I guess it doesn't matter though since you got a test privately.  I'm in Group B.

A friend of mine does have some permanent hearing loss due to treatment.  I ran into her at a party over the holidays and she told me about it.  First off, let me say that she treated twice, the last time for 15 months.  She was also in a study, coincidentally the same study center and doctor as myself, (major teaching hospital) but this was a few years back.  She incurred major hearing loss during her second treatment.  Some of her hearing has returned but definitely not all.  I wish I had an exact percentage to tell you but I don't.  I noticed while I was talking to her several times she had to bend down and put her ear close to my face even though the noise level in the room wasn't particularly loud.  Unfortunately for her, she never did clear.  

I wish I could tell you more but that's all I know.  If you are interested, I'd definitely contact her and ask specifics.

Maybe push for those viral load results from your study.  If you weren't clear by week 4 and you only have stage 1 - 2 damage, perhaps think about quitting and waiting.  I don't think it's very common to incur permanent hearing loss but I'm not sure.  My husband recently finished treatment and I swear his hearing seemms impaired now and it didn't before.  That's just anecdotal though.  What happened to my friend is a fact.  I wish you the best with your decision.

Hope that helps a little, Charlotte
Avatar universal
Hi purplecat.  

I've had a permanent hearing deficit since my late 20s to the extent that I wear a hearing device.  This is not due to either HCV or Tx.   Fortunately hearing devices have improved over the years and if one is willing to invest like I have it is pricey but worth it.  As you've mentioned you were tested at different frequencies & the devices presently do not just increase sound (like days gone by); but they're custom made and fine tuned, individually, depending upon what pitches you have problems with.  
I was concerned starting tx but even if it would  have deteriorated more (still a big fear of mine - tx or not) I knew it was more important (to me) to tx the HCV.  I treated and I am now over 2 years SVR,

During treatment some odd occurred.  I had a closing out of sound (all sounds) for 1.5 to 2 seconds.  Extremely frightening.  I mentioned it here @ medhelp. Tnhepguy was going through tx with me and described (I can't remember his exact terminology) a closing out of sound for a split second or so.  Maybe if he see this and remembers his experience, he will explain his specific situation more clearly.  If I remember correctly, it only occurred with him a couple of times, and only with me a few.  
I have had my hearing checked twice post tx and I am maintaining the same level as prior to tx.

A hearing device (or hearing aid) well... It is the same concept as one with eyesight deficit - one receives either contacts or glasses and becomes accustomed to the inconvenience of the correction device.  It is as complicated and simple as that.

I never had tinnitis or ringing in my ears.  That's fortunate for me.  I think that would be extremely difficult to deal with.  It would be unnerving for me anyway.  My hearing deficit can be an advantage to me at times.  For instance at the grocery store, etc, I turn it off & cut the sounds, and it is more relaxing.  Or in a conversation with a long winded person... depending on the substance of the conversation, I reach up turn it off (it looks as though I am scratching my ear) and then I just nod occasionally and smile politely.  Well.... it works for me.

Look, if you want to complete treatment, and you do sustain some loss.  Take it from a person that has lived with permanent hearing loss, it is doable.  I totally forget.  And there's a way to make it better.  I have a business and it is critical that I hear.  Unless it is a close personal friend that I've said something to, most people are not even aware of my loss.  Now if I run out of batteries... welll I'm in trouble.  However, I've made sure that doesn't happen.  I wish you the best.  If you do sustain loss, it is not the end of the world.

Dollface and others lost their thyroid and take meds daily.  Some people have lost teeth and have had them replaced.  There is decisions to make. We know the risks.  And it is important to know the risks.
180992 tn?1383377657
Thanks to everyone for all the data.  I will keep researching until I find out my PCR next week. Info from old link GI.PA   about Vascular or Neuro that they can monitor at the audio clinic is very interesting. My Audio and ENT has not mentioned this at all. I'm having interferon vascular ooze in my legs and have to wear compression socks prescribed by Derm Doctor. Derm said build up of INF is seeping out the small veins in my legs.  What about my ears?? TZ's post from 3/11/04 about sudden total loss in the one ear is scary. I will try to find his post after the week of predisone and find out what happened.

sjl: sounds brother me also.  I have to wear ear plugs when going out or watching TV. If you are having this problem protect your ears as much as possible. You can use ear plugs to just filter out the hurtful noises.  TV really pisses me off when commericals all of a sudden blast the sound.  I have Panasonic Plasma with sound sensitivity, NOT working for this TX tinnitus SX patient.

Thanks again
Avatar universal
I have been expierencing the beeping and ringing for about 4 months.  THe beeping the first time I heard it I thought someone was getting out of a car behind me.  Really strange.  Usually triggered when I move my eyes right or left but n ot all the time.  I have notice the ringing is more prevelent than it use to be.
Avatar universal
Not trying to be negative, but I don't think your odds are anywhere near 70% of getting svr if you clear at week 20 and are geno 1 and do only 48 weeks of SOC.  Do you have access to multiple and early pcr's; clearing at week four might get you as high as 70% for svr.  Clearing between week 12 and week 24 only gets svr on a 48 week treatment about 20% of the time or less, and obviously clearing early in the 12 to 24 week period is better than clearing later.  Of course if you are geno 2, your odds of svr would be much higher.
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