i finished 48weeks of pegasus ribaviron antiviral injections and tabs nearly a year ago and still have loud ringing in mostly one ear that never stops driving me mad. feels like its attached to a headache and blocked ears and less than perfect hearing. kinda distracts me as its closer at me than anything else. i realise i try to walk away from it or shake my head or realise i'm always cracking my jaw pulling a face to unblock my ears. also it feels part of a stiff neck where my head joins,its all tight. i see what ive written and im sooking. but it is true and true im sooking..it's just i thought most symptoms would disappear, hoped all would. still i can't find a book that feels good enough to read, i lose concentration trying to read. trying to get the volume right so music isnt flat?, missing feeling.i cried when it hit me i would always be like this, hear this and feel it. i,ve had to leave the beautiful wild lonely windy tallows beach coz i knew how i couldnt feel the real experience of it then or again. wind n sounds. quiet sounds are gone, last thing at night and first thing in the morning. like a big inhale exhale is incomplete. i understand no-one else would understand. i dont expect anyone else to read this unless you too hear it.well you know how they say " you are not alone" hu .mine started soft, sometimes less than 2weeks in coz at my first nurse appointment i asked about it. i wonder should i have stopped treatment then. naturally. by the time i found out someone else's didn't end when treatment did it was much worse. i was at the point of deciding whether to go on to 48weeks even though by 28weeks the virus had cleared. it hadn't cleared early. so i went on as i'd "gone this far". my LFT results weren't good but i still felt fine, no abdominal pain when i decided to start treatment. so it feels silly sometimes, though i'm sure i won't when i recover more. i'm 46. i think perhaps a little old to do it to myself. so... enjoy, as seriously, i suddenly remind myself how lucky i am to have been born in Australia, to have time to type this and when others don't, and that's the tip of the ice berg.
Not to worry, you have come to the right place for the most information by people who already went through it (some more than once) and the best support. If you can see a liver specialist you will get the best care (instead of just a gastroenterologist). Then you need find out what genotype you are. Then you need a liver biopsy. THEN can you make a decision whether to treat or not and when. Please don't panic. It's not good for you. Fear of an impending disaster is often worse than the actual event. Hepatitis C is a very slow progressing disease.
I have just been diagnosed with hep c that I contracted through a blood transfusion in 1985 when I had an ectopic pregnancy burst. I am scared stiff, have not yet started treatment, 54 years old and cannot believe I have this. The side effects of Interferron are devastating to read and the treatment is less than desirable. How does one ever make a decision on what to do? I am in shock!
Frankiebean
I've also had hearing loss and Meniere's episodes. I'm so depressed that music doesn't sound the same. Interferon na hearing loss are definately interlinked!
I just completed a 48-week course of treatment for HepC about 2 weeks ago. I received once-a-week injections of Pegasus (interferon) and daily oral medication (Copegus). At about 7-8 months into the treatment I suddenly lost hearing in my right ear in the middle of the night while lying awake in my bed. At first there seemed to be complete deafness in my right ear, but as time went on a very small of hearing has returned. Unfortunately, I am still essentially deaf in my right ear at this time. I cannot hear high frequencies but can hear some lower frequencies... unfortunately, the low frequency hearing does not allow any real discernment of what is being said, I am not able to make out enough distinction in sound to understand words, for example). I am now taking a 7-day course of prednisone to see if it will help. I previously took a 7-day course of prednisone (while I was still on the interferon treatment) but it didn't seem to give any appreciable improvement at that time. I will try to post further concerning my progress and would appreciate any advice others may have.
I also sometimes experience "stuffed" ears, or feeling like my head is under water (plugged hearing?) first thing in the morning, when I get out of bed. It has always gone away within the first hour of getting up and moving around. This has only happened to me about 10 times. I am 33/48. I am self monitorating this so far. Reading the posts in November helped me to realize that this can be a sx. This is so confusing to try to "break down" what is an actual sx and what is actually an infection, "bug", etc. I have had the "upper resp." yuck for the whole tx so far. I just try to remain calm and know that these meds are really strong. (sometimes it is down right scarey!)
I experienced hearing loss in my right ear. I finished 48 weeks of PEGASUS/ribivarin in November. Toiwards the end I developed a severe rash -- and my right ear was stopped up. In December, I ended up seeing a dermatologist who prescribed Steroid/cortisone for 10 days. She said the hearing was part of the drug reaction. The drugs cleared the hearing, and lessened the rash. The dr said it can take up to 6 months for these drugs to clear the system, but that my reaction shouldn't be that severe any more. I still have some itching and I've noticed that my right ear seems a bit blocked the last day or two. I'm not sure I understand the previous discussion. If this doesn't go away, how do they treat the hearing loss?
I suffered hearing loss in my left earduring treatment. very slight, and the hospital gave me an MRI scan to rule out a tumour as the cause. The hearing loss is permanent, apparently, but very slight and only high frequencies. I was on trial for Pegasys so all this has been documented; it is a well known possible side effect.
Ah how timely... I had this issue come up in practice not too long ago and spent some time figuring this out.
There has been some case reports of hearing loss during treatment. There is usually two types: vascular (which is a blood vessel swelling), this is usually reverisible after treatment and neurological, this is usually not reversible. In the case reports, it is also very hard to distinguish what was from the meds and what was simply coincidence (as most on treatment are in their 40-50's when natural hearing loss occurs).
With such coming and going symptoms without any new interferon introduced into your system since monotherapy, it would be unlikely (though not impossible) that it is related.
What I did with my patients was send her to an audiologist available at her ENT. They track her hearing loss during treatment and are able to differentiate between vascular versus neuro loss. She has had a slight loss on treatment (all vascular) and we are still trucking. It is still unclear if this would have occured without treatment as well (as she had some pre-treatment hearing loss issues).
There is no data on this side..simply case reports.
GI.PA