Hep C Discussion Forum

Hi Steff

So sorry to hear about your tragic past and it must have been ever so hard for you and one can only imagine the serious depressions you must have suffered.

I have battled with depressions for many years but always refused any meds as I did not want to become addicted and little did I know I did my liver a favour too and after I am still here albeit I do take my anti depressant meds now because I dont feel strong enough to go through a bout of serious depressions without it.

Anyhow, I am banking on the fact that I am already somewhat cuckoo thus perhaps no one  will notice any difference even if I have cognitive side effects LOL

Yes I can imagine how some, if not all of you, are scratching your head thinking "somewhat cuckoo"?

OK cuckoo then no beating around the bush!!

Love you guys and I am so glad you are here for me

(((HUGS))

Gabriele
-,-{@

-- Edited by Gabriele at 12:11, 2009-01-06

Hi Gabrielle,

hallucinations / - New one on me. - Don't think I've heard of anyone who had those. I had periods of fixations on periods of the past, but they went and I became used to handling things.

Also had small aggression problems, but again, nothing I couldn't handle.

The important thing is to remind yourself that anything out of the ordinary whilst on tx, "is the treatment" - not you going mad or anything. - Things wil be fine, it is doable, not comfortable - but doable - you may be one of the lucky ones, and have no side effects.

B cool,

Lau

Hi Gabriele,

I completely understand your concerns about the side effects of tx.

You really have to make these issues known to the medical team who are going to oversee your treatment. As we're not a medical site, it would be irresponsible to give out any medical advice.

The drugs used for HCV are toxic, but it's all that's available right now, so it's a question of weighing up the possible (sometimes long term) side effects against the possibility of getting rid of the virus and maybe feeling a lot better.

Alternatively, there's the option of waiting for better treatment when it's available.

That's my take on it, anyhow

Love Mrs S Smialls (Steff) xx

I have Tinnitus in one ear - but it started too far from tx to be caused by that.  I think it is caused by a build up of wax for me.  

On googling it recently i found this in Wikipedia, which is a site i really like - but don't know how medically 'correct' it is.

http://en.wikipedia.org/wiki/Tinnitus

Anyway, it does list Interferon as a possible cause of Tinnitus. 
It can be a temporary condition tho, and can also have many causes.

Hugs
Hxxx

Gabriele -

There is at least one other member here, caseymack, who experienced a Sudden Hearing Loss while on interferon. This happens in less than 1% of all people who take interferon for Hep C, but it does happen. I'm going to try to find the Pegasys brochure, which lists it as a possible 'adverse event' and post a link to it.
Nonetheless - 99% are good odds that this won't happen to you.
All the best in 2009.
MYS

Hi Gabrielle,

the important thing is not to scre oneself into believing you will get sever side effects.

There are some people who don't get any, others who have mild effects, others who have moderate and sadly some who have very bad ones.

Mine fell between moderate and bad, but it is still DOABLE even then - not comfortable but DOABLE.

The sad thing is that there seems to be no test to predict the side-effects, so be prepared of course, but don't talk yourself into having them - fingers crossed that you're one of the lucky ones.

Good luck,

Lau

Hi

Thanks for that info and could you please tell me what a ENT is?

In terms of my tinnitus all the doctors have done so far is a few hearing tests which shown that my hearing is impaired.

I had a head scan about 4 years ago but that was because I was getting pain in my face and one of my ears was bleeding and as far as I know there was nothing in that scan result that was of any concern.

As mentioned my tinnitus is causing me a lot of problems and will talk to my GP about it when I see her in January but in any case I hope it doesnt get worse with the tx.

In terms of the other side effects my biggest concern are the implications in relation to the psychological effects  because of my history of depressions but I am doing my best to counter act them as much as possible and still taking my anti depressants.

Although it seems statics suggest that the percentage of people suffering serious side effects is low I suppose it is better to know about them even though it does sound all very scary, just in case there are some that take place then it surely is better to be prepared rather than just  be taken by surprise not knowing what is going on.

With this in mind perhaps I should try to just take each day as it comes, which is what I am doing right now and it is working quite well.

Thanks for all your support as it does make such a difference as well, to know other people do understand and can give advice.

With all my love

Gabriele
-,-{@


-- Edited by Gabriele at 12:05, 2008-12-23

I think the Pegasys brochure lists sudden hearing loss and tinnitus as possible side effects.

According to the side effects and adverse reactions of Pegasys in combo with ribavirin, ISSHL or idiopathic sudden sensory hearing loss isn't listed. Much less "tinnitus".

What is listed is this:

The most common serious adverse event (3% in CHC and 5% in CHC/HIV) was bacterial infection (e.g., sepsis, osteomyelitis, endocarditis, pyelonephritis, pneumonia). Other SAEs occurred at a frequency of < 1% and included: suicide, suicidal ideation, psychosis, aggression, anxiety, drug abuse and drug overdose, angina, hepatic dysfunction, fatty liver, cholangitis, arrhythmia, diabetes mellitus, autoimmune phenomena (e.g., hyperthyroidism, hypothyroidism, sarcoidosis, systemic lupus erythematosus, rheumatoid arthritis), peripheral neuropathy, aplastic anemia, peptic ulcer, gastrointestinal bleeding, pancreatitis, colitis, corneal ulcer, pulmonary embolism, coma, myositis, cerebral hemorrhage, thrombotic thrombocytopenic purpura, psychotic disorder, and hallucination.

Nearly all patients in clinical trials experienced one or more adverse events. For hepatitis C patients, the most commonly reported adverse reactions were psychiatric reactions, including depression, insomnia, irritability, anxiety, and flu-like symptoms such as fatigue, pyrexia, myalgia, headache, and rigors. Other common reactions were anorexia, nausea and vomiting, diarrhea, arthralgias, injection site reactions, alopecia, and pruritus.

Interesting, I can't find anything about "hearing loss" being an adverse reaction due to the use of peginterferon.


-- Edited by Moocow at 06:50, 2008-12-23

I had enhanced hearing, not loss of hearing. Plus couldn't filter out sounds from a crowd. - It all became background noise instead of being able to "tunnel" onto a conversation.

Things are still a little too loud,  - as can too many voices in a work environment.

Getting better now, re-adjusting - after 18 months post treatment.

Not sure if I'll ever play in a band again - well not a very loud one anyway ..

Lau

wow

I have to disagree with this statement - I believe that it has been proven that even in cases of inability to clear the virus, the use of the interferon does indeed "help" the liver out.

It can reverse some of the damage by using it for 48 or 72 weeks, not 3 months. Show me ONE study that shows benefit from 3 months....just one. I bet you can't. When doctors tell people that "at least they gave their liver a break", they mean that during that time their viral load may have been lower. NOT that it reverses damage in 3 months. "During tx, yes- the immune system is compromised to a great degree."

Why? Because your neutrophils decrease? Actually, people with low neutrophils, don't have any more infections then people with normal neutrophils. That's what hepatologists say......

From the "Side Effect Management Handbook", written by hepatologists, used at Projects in Knowledge, a site that teaches doctors how to treat HCV.....Page 87 Chapter on Neutropenia. http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf

"PATHOPHYSIOLOGY
Interferon elicits secondary cytokines, such as interleukin-8, which promotes migration of neutrophils to outside the peripheral vascular space and into tissue spaces. There, they become sequestered and reach their nadir.

There is a theoretic concern that neutropenia will increase the propensity to develop opportunistic infections. However, collective experience has not demonstrated a clinically significant association between neutropenia and infection in patients treated for hepatitis C."

"The disease ruins the immune system"
No, it doesn't. The virus actually uses your own immune system against us.

The Hepatitis C virus doesn't kill the liver cells. It needs those cells to stay alive. It takes over the cell to use it for replication. The RNA of Hepatitis C damages parts of the insides of your liver cells. This sets off an inflammatory response by your immune system....which results in scarring, or fibrosis. When the Hepatitis C has damaged a liver cell beyond use, the DNA in the nucleus of that cell sends out a message that it is time for the liver cell to die. .....which is apoptosis.....cellular suicide. The dead cells may then become cirrhotic. So you see...it doesn't ruin your immune system. It's such a smart virus it uses your immune system against us.

(This is how interferon works. Pay close attention to Phase 3. If what you're saying was true and the the disease "ruined" the immune system then interferon wouldn't be able to ACTIVATE the immune system. For how can you use something that has been "ruined"?)

Interferon works in phases. These phases are related to the location of the virus in your body. Most of the virus is circulating in your bloodstream. The virus in your blood is the easiest to kill, because it doesn't live as long as the virus that is in your liver cells. Also, it is not hiding in your liver cells, but is out in the open, so to speak.

The first phase of treatment lasts 1-2 days. This first phase of treatment kills most of the virus circulating in your bloodstream. The action of interferon in your bloodstream is simple. It mainly slows down the replication of the virus. In order for any life form to survive, it must live long enough to reproduce. By slowing down the rate of replication, the virus dies on its own without producing offspring. Phase 1 of interferon therapy is extremely rapid.

Phase 2 lasts from day 2 through day 14. Now, the drug is attacking the virus in your liver cells. This is the slowest phase, because the virus has trained the liver cells to "look" as though they are not infected. The more your viral load drops, the more the interferon can "see" the infected cells. The action of interferon then becomes more complicated, because the virus has turned the liver cell into a virus reproduction factory. It does this by using the natural resources of the liver cell. It teaches the liver cell how to make more copies of the virus. Interferon then calls for help from other parts of your immune system. These other parts of your immune system degrade or "beat up" the RNA of the virus. They also interfere with the virus-making process, and try to re-teach the liver cell how to behave normally.

Phase 3 lasts from day 14 through day 28, and continues on through week 24. During this time, interferon completely switches your immune system into full attack mode, and the process speeds up again. Your immune system can now see which infected liver cells cannot be saved, and starts to kill off these cells. Interferon also encourages regeneration of liver cells, so as the infected cells are killed, new cells begin to grow in their place. This is how interferon may help reverse liver damage and prevent cancer. All of this activity takes place within 30 days. This is why some doctors are now checking viral loads at 4 weeks. It means that the interferon is sucessfully working on the virus that is actually in your liver.

"doing a round or even 3 months of tx helps more than hurts." Really? I bet all those people that ended up with severe, permanent side effects disagree with you. Things like total hearing loss, severe lung problems and MYASTHENIA GRAVIS.

"you hang in, there are better drugs coming down the pipe and I'll bet you'll get them very soon. the trial for non-responders/re-lapsers with teleprevir holds quite a bit of promise- so keep your chin up and hopefully the drug will be released in a couple of years." You're on a roll, aren't you?

Perhaps you didn't hear her say, "Had my 12wk pcr on Monday, they told me today that there has not been a big enough drop in my viral load to continue with tx."

Which means that she's a NULL responder. In other words, she didn't get a 2 log drop at week 12. And PI's won't work on null responders!!!!!!!!!! Null responders are considered interferon resistant. (PI's will only work if people failed peviously because of other reasons like under dosing...or relapsers but NOT on people who are interferon resistant!!!).

Hep C is made up of wild type virus and mutant virus. The wild type is the main and much larger number of virions. PI's kill the wild type....but Protease does NOT affect the mutant type at all. Interferon kills the mutant type. So if you are a non-responder, and it is due to being interferon resistant, then you will have nothing to kill the mutant type with.

That means that if you are a non-responder, and it is due to being interferon resistant, any other drug that MUST be paired with interferon will not work.

Let me show you so you can see I don't make things up...... (Posted at MedHelp by Susie Simon, President of the Hepatitis C Association)......

"We also attended an hour long discussion with Dr. Zezeum and Dr. Mark Sulkowski and the name of that discussion was Current and New Therapies for HCV. At that discussion and again, at the evening discussion with the doctors mentioned above who did the Treatment Challenges Discussion, they discussed why the PI's will not work for null responders. If we can understand this correctly, the doctors are making these statements based on the fact that hep C is made of wild type virus and mutant virus. The wild type is the main and much larger number of virions and the mutant type is the type that if, as Dr Shiffman mentioned, your interferon switch is broken, will not be gotten rid of by PI. Protease does not affect the mutant type at all. So if you are a non-responder, and it is due to being interferon resistant, or having a "broken switch" any other drug that MUST be paired with interferon will not work." Here's a study that shows that PI's (like Telaprevir) kill the wild type......and interferon kills the mutant type. It says that on the conclusion......

Telaprevir and pegylated interferon-alpha-2a inhibit wild-type and resistant genotype 1 hepatitis C virus replication in patients.

Kieffer TL, Sarrazin C, Miller JS, Welker MW, Forestier N, Reesink HW, Kwong AD, Zeuzem S.
Vertex Pharmaceuticals Inc., Cambridge, MA 02139, USA.

Telaprevir (VX-950) is an orally active, specifically targeted antiviral therapy for hepatitis C virus (HCV) that has been shown to profoundly reduce plasma HCV RNA in genotype 1 patients. Using a highly sensitive sequencing assay that detects minor populations of viral variants (>or=5%), mutations were identified that conferred low-level (V36M/A, T54A, or R155K/T) or high-level (A156V/T and 36/155) resistance to telaprevir in vitro. We report a detailed kinetic analysis of these variants in 16 patients given telaprevir or telaprevir + pegylated interferon-alpha-2a (PEG-IFN-alpha-2a) for 14 days. In 4 patients who had a viral rebound on telaprevir alone, the R155K/T and A156V/T variants were detected during the initial steep decline in HCV RNA. During the rebound phase, the R155K/T and A156V/T variants were replaced by V36(M/A)/R155(K/T) double mutant variants. In the remaining 12 patients given telaprevir alone or with telaprevir/PEG-IFN-alpha-2a, the A156V/T variant was detected in some patients, but viral levels continued to decline in all patients.

CONCLUSION: These studies suggest that the initial antiviral response to telaprevir is due to a sharp reduction in wild-type virus, which uncovers pre-existing telaprevir-resistant variants. In patients given telaprevir alone, viral rebound can result from the selection of variants with greater fitness. However, the combination of telaprevir and PEG-IFN-alpha-2a inhibited both wild-type and resistant variants. In the present study, every patient who began PEG-IFN-alpha-2a and ribavirin after the 14-day dosing period had undetectable HCV RNA levels at 24 weeks, indicating that telaprevir-resistant variants are sensitive to PEG-IFN-alpha-2a and ribavirin. "

What you're doing is giving people false hope and that is downright CRUEL. You keep talking and I haven't seen you back up anything you'd said. Please show some proof of what you've said.

I did my research and not only did I know that my ethnic background would give me a better chance at clearing (yes, Asians do have a higher SVR rate than people of Anglo-Saxon descent), I decided that rolling the dice with a double blind placebo study would only increase my chances of SVR by another 30%. So, considering I had a 50% chance of attaining SVR due to genotype, add in my ethnic background would only serve as a positive thing.

The study I saw showed a 79% End Of Treatment.....but a 73% SVR. Perhaps you can post the one you got the 80% from. Treatment responses in Asians and Caucasians with chronic hepatitis C infection

AIM: To conduct a multicentre retrospective review of virological response rates in Asians infected with genotype 1 chronic hepatitis C (CHC) treated with combination interferon and ribavirin and then to compare their responses to that among Caucasians.

METHODS: Asian patients infected with genotype 1 CHC treated at 4 Australian centres between 2001 to 2005 were identified through hospital databases. Baseline demographic characteristics, biochemical, virological and histological data and details of treatment were collected. Sustained virological responses (SVR) in this cohort were then compared to that in Caucasian subjects, matched by genotype, age, gender and the stage of hepatic fibrosis.

RESULTS: A total of 108 Asians with genotype 1 CHC were identified. The end of treatment response (ETR) for the cohort was 79% while the SVR was 67%. Due to the relatively advanced age of the Asian cohort, only sixty-four subjects could be matched with Caucasians. The ETR among matched Asians and Caucasians was 81% and 56% respectively (P = 0.003), while the SVR rates were 73% and 36% (P

Hiya Kathy,

Don't worry about offending anyone, everyone is entitled to their opinions. 

I also feel my immune system has/had been compromised since tx, but, it was never that great pre-tx either.  I do think it has gradually gotten better as time has gone on.

I now feel as tho i have CFS/PVF/M.E. and think that the virus brought that on, but i'm not sure how much i would think tx was responsible for my immune system.  I do know that i had one infection after another, on tx.  Virtually spent the whole time on anti-b's!! 

Is an interesting topic.

All the best. 
Hugs
Hxxx