Treatment break implications?

[Guest guest]

After I completed 14 weeks of IFN/RBV, the virus was undetectable. I am

supposed to complete the whole 48 weeks, but I have developed profound loss

of hearing in one ear. The ear specialist says the loss is unexplainable

(apparently this sometimes happens for no good reason) and is likely not

reversable. My GI doc says there are only a couple of cases of this

happening due to Interferon in the literature, and none in North America.

The consensus seems to be it might be the interferon, and it might not.

My doc says if I quit treatment now, I will almost assuredly relapse.

My question is what if I take a break for a month? In the other cases of

hearing loss, the hearing returned a few weeks after discontinuing

Interferon. Does anyone know if a break will decrease my chances of SVR?

I am, of course, devastated at the loss of hearing and absolutely TERRIFIED

that the other ear will be affected. I think I'd rather die from Hep C.

[Guest guest]

HI.Sorry to hear yr. earproblems.Difficult to say if it.s caused by the

treatment,I hve never heard of it.If you stop TX the virus will come dashing

back,it will show in yr blood within a month for sure.If I were you I would give

myself say another month to see if the hearing clears.Stopping you can always

and as you said you heard that stopping will return the hearing.Likely not

reversable,how do they no if they can.t explain the cause?.Terrible dilemma

you.re in.I hve not seen our Doc. on the list because I think the Doc. should

deal with it.Hi Doc. where are you?.Willem

Treatment break implications?

After I completed 14 weeks of IFN/RBV, the virus was undetectable. I am

supposed to complete the whole 48 weeks, but I have developed profound loss

of hearing in one ear. The ear specialist says the loss is unexplainable

(apparently this sometimes happens for no good reason) and is likely not

reversable. My GI doc says there are only a couple of cases of this

happening due to Interferon in the literature, and none in North America.

The consensus seems to be it might be the interferon, and it might not.

My doc says if I quit treatment now, I will almost assuredly relapse.

My question is what if I take a break for a month? In the other cases of

hearing loss, the hearing returned a few weeks after discontinuing

Interferon. Does anyone know if a break will decrease my chances of SVR?

I am, of course, devastated at the loss of hearing and absolutely TERRIFIED

that the other ear will be affected. I think I'd rather die from Hep C.

[Guest guest]

HI.Sorry to hear yr. earproblems.Difficult to say if it.s caused by the

treatment,I hve never heard of it.If you stop TX the virus will come dashing

back,it will show in yr blood within a month for sure.If I were you I would give

myself say another month to see if the hearing clears.Stopping you can always

and as you said you heard that stopping will return the hearing.Likely not

reversable,how do they no if they can.t explain the cause?.Terrible dilemma

you.re in.I hve not seen our Doc. on the list because I think the Doc. should

deal with it.Hi Doc. where are you?.Willem

Treatment break implications?

After I completed 14 weeks of IFN/RBV, the virus was undetectable. I am

supposed to complete the whole 48 weeks, but I have developed profound loss

of hearing in one ear. The ear specialist says the loss is unexplainable

(apparently this sometimes happens for no good reason) and is likely not

reversable. My GI doc says there are only a couple of cases of this

happening due to Interferon in the literature, and none in North America.

The consensus seems to be it might be the interferon, and it might not.

My doc says if I quit treatment now, I will almost assuredly relapse.

My question is what if I take a break for a month? In the other cases of

hearing loss, the hearing returned a few weeks after discontinuing

Interferon. Does anyone know if a break will decrease my chances of SVR?

I am, of course, devastated at the loss of hearing and absolutely TERRIFIED

that the other ear will be affected. I think I'd rather die from Hep C.

[Guest guest]

Claudine,

Although I don't write much, I read all you write. Something you said about

a hearing problem reminded me of something similar. A friend of mine had very

bad tinnitis, dizziness, hearing loss, noises in her ears..... She went to

many doctors who told her basically to " live with it. " She persued the issue

and was finally diagnosed, after many different doctor visits, with Lanier's

Disease. I really don't know too much about it, but thought you might be

interested. Your symptoms sound similar to hers. Let me know what you think!

Staying positive,

Lora

[Guest guest]

Claudine,

Although I don't write much, I read all you write. Something you said about

a hearing problem reminded me of something similar. A friend of mine had very

bad tinnitis, dizziness, hearing loss, noises in her ears..... She went to

many doctors who told her basically to " live with it. " She persued the issue

and was finally diagnosed, after many different doctor visits, with Lanier's

Disease. I really don't know too much about it, but thought you might be

interested. Your symptoms sound similar to hers. Let me know what you think!

Staying positive,

Lora

[Guest guest]

Claudine,

Thank you for your reply. I agree, I very much doubt I have cleared the

virus for good.

There is only a couple of cases of Interferon related hearing loss, and so

little data about it that no one really knows much and who knows if the

other ear would be affected. I also developed tinnitus in the affected ear

at the same time and I completely understand when you say it drives you

crazy. It is awful.

I am going to try acupunture next week; it is supposed to help tinnitus.

Even if it doesn't help restore my hearing, decreasing the tinnitus would be

a blessing. Have you tried anything alternative? There doesn't seem to be

any medical treatment, although I read about hearing aids that " mask " it.

Hi ,

Your GI doc is right! If you stop now you will relapse. You may

be undetectable in your blood, but the virus still in your liver

takes much longer to kill off. The virus replicates at up to 3

trillion virions per day! The minute you let up the pressure on any

residual virus left in your liver it will begin replicating at an

extremely fast rate.

I've never heard of interferon causing hearing loss. Did your

GI doc say if in the other cases it affected only one ear, or both?

It seems to me that even if it really is the interferon causing the

hearing loss then taking a break would be a waste of time. What

happens when you start taking it again? The same thing? It seems like

a big risk, especially when they don't seem to know if it's really

the interferon causing the problem or not. I have often wondered if

ears are low on the priority list of problems for doctors. I have

tinnitus. I've had it since Nov., 1995. I've seem NUMEROUS doctors

about it, and not one has even shown a whole lot of interest. They

don't know what is causing it, it just doesn't seem like a very big

deal to them. On the other hand, it absolutely drives me crazy, and

has caused me numerous problems. I wish every doctor who has ever

brushed off my complaints had to spend just one week listening to the

sounds I hear non-stop. Maybe someone would take it seriously then.

Good luck,

Claudine

Post message: Hepatitis C

Subscribe: Hepatitis C-subscribe

Unsubscribe: Hepatitis C-unsubscribe

List owner: Hepatitis C-owner

URL to this page: Hepatitis C

----------------------------------------------------------------------------

--

[Guest guest]

Claudine,

Thank you for your reply. I agree, I very much doubt I have cleared the

virus for good.

There is only a couple of cases of Interferon related hearing loss, and so

little data about it that no one really knows much and who knows if the

other ear would be affected. I also developed tinnitus in the affected ear

at the same time and I completely understand when you say it drives you

crazy. It is awful.

I am going to try acupunture next week; it is supposed to help tinnitus.

Even if it doesn't help restore my hearing, decreasing the tinnitus would be

a blessing. Have you tried anything alternative? There doesn't seem to be

any medical treatment, although I read about hearing aids that " mask " it.

Hi ,

Your GI doc is right! If you stop now you will relapse. You may

be undetectable in your blood, but the virus still in your liver

takes much longer to kill off. The virus replicates at up to 3

trillion virions per day! The minute you let up the pressure on any

residual virus left in your liver it will begin replicating at an

extremely fast rate.

I've never heard of interferon causing hearing loss. Did your

GI doc say if in the other cases it affected only one ear, or both?

It seems to me that even if it really is the interferon causing the

hearing loss then taking a break would be a waste of time. What

happens when you start taking it again? The same thing? It seems like

a big risk, especially when they don't seem to know if it's really

the interferon causing the problem or not. I have often wondered if

ears are low on the priority list of problems for doctors. I have

tinnitus. I've had it since Nov., 1995. I've seem NUMEROUS doctors

about it, and not one has even shown a whole lot of interest. They

don't know what is causing it, it just doesn't seem like a very big

deal to them. On the other hand, it absolutely drives me crazy, and

has caused me numerous problems. I wish every doctor who has ever

brushed off my complaints had to spend just one week listening to the

sounds I hear non-stop. Maybe someone would take it seriously then.

Good luck,

Claudine

Post message: Hepatitis C

Subscribe: Hepatitis C-subscribe

Unsubscribe: Hepatitis C-unsubscribe

List owner: Hepatitis C-owner

URL to this page: Hepatitis C

----------------------------------------------------------------------------

--