Thanks for the post and all the positive energies you have helped contribute to. You will be missed by many. Cheers and good luck ahead.

You can go to your Profile section and under "Edit Profile" there is a method to delete your account. I'm sorry to see you go, good luck. I hope you get to feeling better.

Cinnamon Girl wrote:

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Hi CW, thanks for sharing your story with us, and I`m very sorry to hear about your current health problems.  Just for your information, I would like to point out that Malcolm (mallani) is in fact a retired doctor and also a well respected member of the forum Admin Team. 

Unfortunately, it`s true that some people do find they have lingering side effects and additional health problems post treatment, although it`s not always clear whether these issues have been directly caused by the treatment drugs or whether other underlying problems have arisen or become more pronounced.

Everyone who undertakes treatment to rid themselves of the Hep C virus does so at their own risk, (which could be said of any medical treatments), and for the vast majority of people that risk is well worth taking.  Curing ourselves of this virus is no mean feat and many of our members have shown incredible courage and determination, for the sake of their future health and for the benefit of their families, in undertaking one or more very difficult courses of treatment.  Hep C treatment saves lives, and in many cases people find that their quality of life also improves quite considerably once the virus is gone. 

I wish you all the best for your future, CW, and hope you can find some joy in your life. 

 

---

 Then I find it absolutely amazing then that Dr. Malcolm would be so unprofessional and unethical as to dare to make any diagnosis or comment on my medical condition based on internet posting and not personal in depth examination of me.  I also am equally unimpressed with administration status or how well respected someone is and to be perfectly honest that includes you as well.

I made a simple comment and expressed a simple opinion, all of you folks need to get your panties untwisted and I have a simple request, LEAVE ME ALONE.  To be perfectly honest, I wish I had never posted in this forum now and if I could find a way to terminate my account, which I cannot, I would do so.

Could maybe one of you "admin" folks be so kind to assist me in this regard?  I would be ever so grateful.

Thanks

Thanks for the clarification, CW.

You have a wonderful day too.

Hi Mallani

Where to start, I was diagnosed with Hep B / Hep C in the mid 90s, I did not get any treatment of any kind until 2007 / 2008, that is when I received Pegasys/Interferon and Riba pills, my treatment was scheduled for 6 months, it lasted 5 months and I stopped.

You are entitled to your opinion about MY quality of life before treatment, I differ, I was able to sleep, I was able to walk more than around my house once.  I was able to go out with my HUSBAND, that's right, my HUSBAND, I am GAY and in a SAME SEX LEGAL MARRIAGE that is recognized by the US Federal government, my hubby is a US Federal employee and I am on his health insurance now.  I could walk around the Casinos we would frequently visit without having to sit down frequently, I would be able go into every thrift store that we stopped at during shopping days as well as walk comfortably around the malls we would visit.  I could clean my house, do laundry, do dishes, play with my pets and do so in total comfort and this was WHILE I was going downhill and unable to work a regular 8 to 10 hour work day, ABSOLUTELY.  Yes it was minimal, but I would give my right you know what to have that minimal back again.

Yes, I was told I had the easiest genotype to treat and it was not the most common and prevalent in the area I live in.  I was also told that being obese reduced my chances for a positive outcome down to around 56%.

Not only do you not live in my body, you are not a Doctor and are not qualified to assess my quality of life before or after treatment or how the treatment affected me and the severity of the effects.  You simply are annoyed that I dared to post an opinion about treatment that you don't like, so you decided to play Detective and become intrusive.

What I posted was that I did not understand how someone could endure treatment more than once, THAT I COULDN'T AND WOULDN'T.

You have a wonderful day.

Hi CW,

I'm confused. In your Bio. you state you were diagnosed with Hep B and C in 1996, and had Dual Rx with Peg. and Riba in 1997/98 and were SVR after 6 months.  I presume that is a mistake, as Peg. was not available back then.  Do you mean you had 6 months Rx in 2007/08?  You also state you are Male, but then talk about getting on your husband's Health Insurance.  Finally, you state Rx took your quality of life from a 9 to a 2.  However, you also post that you 'went downhill, bad' in 2005, and were unable to work in 2006 and 2007. You also weighed 335 lbs (152 kg) and suffered from morbid obesity, COPD, hypertension and depression. That hardly sound like a 9 'quality of life' before Rx. You had the 'easiest to treat' Genotype, which is presumably Geno 2.

I'm happy for you that you achieved SVR.  However, it seems a bit much to blame your current health problems on treatment, given the state of health you say you were in before Rx. If I weighed 152 kg, I'd have sore joints as well. There is no doubt Rx can have a permanent effect, but many of us have fronted up for treatment many times, as we know HCV can kill us. It is our choice to take that risk.

You have received sympathetic replies from this Forum since Jul 2012. It's OK to post your experience, but it's a bit much to question Members as to why they are seeking Rx.

Hi CW, thanks for sharing your story with us, and I`m very sorry to hear about your current health problems.  Just for your information, I would like to point out that Malcolm (mallani) is in fact a retired doctor and also a well respected member of the forum Admin Team. 

Unfortunately, it`s true that some people do find they have lingering side effects and additional health problems post treatment, although it`s not always clear whether these issues have been directly caused by the treatment drugs or whether other underlying problems have arisen or become more pronounced.

Everyone who undertakes treatment to rid themselves of the Hep C virus does so at their own risk, (which could be said of any medical treatments), and for the vast majority of people that risk is well worth taking.  Curing ourselves of this virus is no mean feat and many of our members have shown incredible courage and determination, for the sake of their future health and for the benefit of their families, in undertaking one or more very difficult courses of treatment.  Hep C treatment saves lives, and in many cases people find that their quality of life also improves quite considerably once the virus is gone. 

I wish you all the best for your future, CW, and hope you can find some joy in your life. 

Tig56

It didn't just make me sick, it honestly nearly killed me.  I don't know how to explain it, but on the day I stopped all treatment, I KNEW that if I took one more injection or one more pill, I could literally die.  I was one of the unfortunate ones with treatment, within 5 days of starting, I was in the bed and stayed there throughout treatment, 7 days a week.  I had horrible flu like symptoms, almost scratched my skin off, either horribly hot or cold, no such thing as real sleep, DID LOSE WEIGHT and that was about the only positive thing out of the whole deal, other than the Hep C virus going away of course.

Tig, I am not ungrateful, but the treatment left me PERMANENTLY DISABLED, I have a disabled parking placard that my Doctor signed off on for me and I HONESTLY NEED IT.  I can barely walk around once through my house without having to sit down.  If I walk to the front of my yard to the mail box, when I get back inside, I have to sit down for at least 10 minutes.  I use two inhalers for my breathing.  My knee joints, hips, lower back, shoulder and neck, wrists all hurt like I have arthritis.  I have felt lousy ever since I started that treatment and still do to today.  My quality of life went from a 9 to at best of times a 2, if I sound bitter, I am.

bundtrock wrote:

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Good Morning

I have to ask, please don't be offended, WHY are you putting yourself through this ordeal yet again?  I went through it ONCE and stopped interferon injections and pills a month early, they were literally killing me.  I have not been tested since 6 months post treatment and that was back in 2007, if I remember correctly.  I don't care if I am positive now or not, it would make no difference to my PERMANENT AND IRREVOCABLE decision to NEVER take TX again, ever.  OF COURSE, you are certainly entitled to make this decision for yourself and in your own way, I am just puzzled.

 

---

I'm glad to hear that you may have achieved SVR following treatment. I wrongly assumed that after you posted this comment that you had failed treatment after having made the choice to stop treatment ahead of schedule. Looks like luck was indeed on your side, even if it made you sick to get it. I've never seen a set of circumstances quite like you've shared with us today. I would enjoy your success and hope more of us get to enjoy it. 

Tig56

As far as I know, I am "cured."  I was tested post treatment 6 months, 12 months, 18 months, undetectable each time.  But thank you for your good wishes.  Do I think it is permanent, NOT A CLUE and certainly no faith in medicine with this, but who knows.

One day at a time Brother! It sounds like you're making headway by leaps and bounds already. It won't be long and you'll be out there catching and releasing again! Keep your spirits up, we're rooting for you!

Well day 4 off of treatment and I am slowly recovering. I haven't felt the urge to vomit and could get myself off the couch and do the kitchen dish washer thing. My balance is starting to coming back. I can eat again and enjoy it. I enjoy not being couch bound 100% of the time. Getting bad head aches and body /joint pain in the waking hours but my Hydromoriphone takes care of that for the most part, I was hoping the Arthritis would disappear but we will have to see if it gets better or worst. Still have lots of brain frogs that I'm hoping clears up. Life is good.

I wish all the best of luck and the desire outcomes, absolutely.

I just know for ME PERSONALLY, life is not that precious, I have lived my 57 years exactly the way I wanted, I didn't make compromises, I didn't marry until late in life, did not have children by choice, never stayed at a job I truly disliked, never took anything off of people because I needed to keep a roof over my own head, much less that of a family, had a blast, never worked hard one day in my life, am financially comfortable, retired at 50.  I didn't miss a thing, so I don't feel left out of anything.

I steadfastly REFUSE to endure what I did before, I would honestly rather die, I, like everyone else, is going to die at some point anyway.

Again, I wish NOTHING but the best for all.

I understood perfectly. I'm on my second course of treatment now, so I do have experience, like many others here with not only two but three and four attempts at SVR. For me Interferon and Ribavirin was unpleasant but tolerable enough to continue. Interferon alone didn't cause me too many difficulties, some fatigue and depression but those side effects were easily controlled. Now I'm on my 22nd week of triple therapy. The first four weeks of the Victrelis program starts with a lead in of Pegasys Interferon and Ribavirin. At the beginning of week 5 the drug Victrelis is added to the program. The combination of all three adds to the side effects experienced on the dual medication lead in. It's tough but I knew it would be. I currently take the Pegasys Int. once a week, the 3 Ribavirin tabs every 12 hours, and the Victrelis is 4 capsules every 8 hours around the clock. I unfortunately have developed a common type of anemia from all of it and now must take 2 Neupogen injections twice a week to build up my white blood count. So I know what kind of commitment it takes to do this and do it correctly. The side effects have been worse than the dual medication therapy but again it's tolerable and worth the possibility of ridding myself of this virus. It's a choice I made and so far it's working as planned. I've got approx. 6 more weeks of this treatment and I hope for the best. But if I should relapse, I'll do it again in a heartbeat. Whatever it takes to kill the beast... Good luck to you.

bundtrock wrote:

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I don't think you have understood my question, I am not referencing FIRST TREATMENT, I am referring to ONE OR MORE FOLLOWUP treatments, after the first failed to render the desired result.

I was on the Pegasys / Interferon shot once a week and 15 Ribivarin <sp> pills a day.

As I said, to each their own.

 

---

 That pretty much sums it up.

I don't think you have understood my question, I am not referencing FIRST TREATMENT, I am referring to ONE OR MORE FOLLOWUP treatments, after the first failed to render the desired result.

I was on the Pegasys / Interferon shot once a week and 15 Ribivarin <sp> pills a day.

As I said, to each their own.

Well put Tig-Personal choice. I feel as though I should do this while I am in fairly good health. I also feel that the hep c could aggravate any possible health issues I may have as I get older. (Again that's my opinion) . - cindy

Hey CW, welcome to the forum. Your position has been discussed many times here and elsewhere, and each answer is often times the same or drastically different. There is no right or wrong answer or position. The choice to undergo treatment is a personal one. Most of us have come to our decision following a lot of research, and discussions with our doctors, families, friends and of course our Higher Power. It sounds like your choice was made following a particularly nasty experience with a previous treatment program. For many people that fortunately hasn't been the case. While I agree that this treatment hasn't been a walk in the park, but it has been very tolerable. I'm curious, what type of treatment did you take that was so difficult? Each has it's own set of side effects and circumstances. If you spend enough time reading these posts, you'll find there are many here that haven't experienced many negative side effects at all. So I'm saying that each of us experiences something different while moving forward with our decision and form of treatment. Some people choose to start treatment to avoid potential health problems down the road. Some choose to start because their liver health is poor and the choice to treat becomes a matter of life or death. When given that option, the side effects from treatment become a secondary matter. It's a personal decision and what's most important to the person making it. I guess the answer might be as simple as that. Good luck!

nikcoh1 wrote:

---

Thanks Tig - After a few weeks post tx I started exercising again, slowly building up my endurance. I have kept at it and have been doing mostly cardio, with some strength training. I think I have improved by leaps and bounds but then I have some small setbacks like the breathing. I know it takes quite a while to clear all this nasty meds, but I keep thinking it should be out of my system by now (wrong thinking) lol. Hgb is back to normal too. I will talk with my doc and see what he thinks. Thank you for the input as the tx is rough on us all. I am hoping the next go around will be easier.

---

 Good Morning

I have to ask, please don't be offended, WHY are you putting yourself through this ordeal yet again?  I went through it ONCE and stopped interferon injections and pills a month early, they were literally killing me.  I have not been tested since 6 months post treatment and that was back in 2007, if I remember correctly.  I don't care if I am positive now or not, it would make no difference to my PERMANENT AND IRREVOCABLE decision to NEVER take TX again, ever.  OF COURSE, you are certainly entitled to make this decision for yourself and in your own way, I am just puzzled.

Thanks Tig - After a few weeks post tx I started exercising again, slowly building up my endurance. I have kept at it and have been doing mostly cardio, with some strength training. I think I have improved by leaps and bounds but then I have some small setbacks like the breathing. I know it takes quite a while to clear all this nasty meds, but I keep thinking it should be out of my system by now (wrong thinking) lol. Hgb is back to normal too. I will talk with my doc and see what he thinks. Thank you for the input as the tx is rough on us all. I am hoping the next go around will be easier.

Best of luck with your future. You're right though, what you choose to do with it and the opportunities left available to you are up to you and you alone. I've lived a nice life too and shared some of your experiences as well. But I'm not ready to settle for anything but the best and the choice to go through this time and again is one way I'm able to tip the scale in my favor. Life is a series of choices and by choosing treatment I hope I get the opportunity to make many more. I hope you do as well. I've enjoyed the chance to talk and I respect your point of view. I wish you the best!

I got to thinking and wanted to add one last thing. It's obvious that you had a terrible experience with your previous treatment and I'm sorry you had to go through it. One word of hope I'd like to add is that in the not too distant future, there will be new treatments available that should eliminate many of the ugly side effects you went through. When that happens, perhaps with some research and the support of those around you, you'll be able to consider approaching treatment again. Not the same ugly thing you went through, but a new chance for success, without problems. Take care!

Hi Cindy, even though you're 4 months post treatment you're still theoretically clearing your body of the Ribavirin. That stuff is well known for causing shortness of breath and continues to be an occasional problem for me too. What was your last hemoglobin level? If that's too low it could also be contributing to it. If you're just now getting back to normal or trying to, don't forget that over those many months, your physical condition has weakened and placing those demands on your system again will make you short of breath. Especially if your system is still recovering from treatment. I would mention it to your doctor and in the meantime would monitor my activity. Don't demand too much of yourself too soon. Rest and recover! Good luck 

Lingering side effects since 1999 experimental treatment ,when you had 3 darts a week and had to mix your own shots. I had permanent side effects that total changed my life and forced me into disability in 2002. In 2005 I did the new treatment and with every box of Pegasys/ ribavirin I received a 24"x 24" two sided paper that was printed in 6 point texted covering both sides. It clearly listed every known side effect/warnings that was reported on this product and it definitely warn that there could be permanent side effects It didn't list  what those permanent side effects were and some of the effect you had to read between the lines to fully understand their mumbo jumbo. I live in Canada and I know that the drug companies have to play by a different set of rules and disclosures I was surprised when I read this thread but then realized that what ever printed materials you got with your treatments back in 05 could be totally different as we live in different places under different laws. I didn't even bothered with reading the papers that where sent with the Pegasys/riba and the Boceprevir treatment this time, as I knew it couldn't be good.

Well just got done reading the link and it was a really good read. I sent it out to a lot of people that would make use of it. I took 4 times longer to read it compared to my wife. These observation where only based on the old 2 part treatment and I know that this time the 3 part system was much worst in many ways than the 72 weeks of h##l I went through in 05. I am the very first person to complete this triple combo in the province of Manitoba and there where twelve others that started before me. I was using Bocepavir and some where using the other one (brain frog) Well I just done dart 48 of 48 last night and just have to wait for now. Later all

-- Edited by TeddyTrout on Friday 11th of October 2013 11:13:06 PM

Hi Everyone

Been awhile, wanted to check in, still the same with me.  THANKFULLY with the DOMA decision back in June, I was able to get on my hubby's federal employee health insurance.  Have to wait until end of October to get my "new patient" appointment with a Primary Care Doctor on their approved list.  Will PROBABLY have lab work done then, hope anyway, to get an update.  

I am SO TIRED of feeling run down, half sick ALL of the time.  My mobility has gotten worse, my minor emergency clinic Doctor who has been my only medical access signed paperwork several months ago to get me a PERMANENT DISABILITY PLACARD for our vehicles.  

Had I KNOWN what that treatment would leave me with, I would have NEVER gone through it.

Thanks for finding that Jill! It may be a small group but I was amazed at the similarities of my own past experiences with combo therapy. I've also followed the stories of friends and forums as well. There is definitely truth to these lingering side effects for many people and I think it's wise to pay attention to the many complaints. How many years did it take the various governments associated with the Agent Orange investigations to admit that it was a poison responsible for many illnesses? It just goes to show people that these drugs and their effects will take decades or longer to truly understand. Shoot, they're still learning about what they will do to us, let alone the things they still don't understand. As long as they're using these medications on living things, we must demand that they are worthy stewards of our trust!

Yes please try to find the link.

Ok, here you are, I`ve found another link to the report..

https://csrh.arts.unsw.edu.au/media/NCHSRFile/8_Recovery_from_hepatitis_C_treatments.pdf

I does sound quite negative so do bear in mind that it was a very small study. 

GodsGrl wrote:

---

Links dead now guess it wasnt meant for me to read it!

---

 Ok, thanks Jeri, I`ll see if I can find an updated link. 

omg i like to be informed but this stuff is plain scary... i thought, yup, treatment over, i will start to improve. and i want it now... haha.

jeez i dont know how much more i should read. read the link greenqueen provided, and wow, scary to say the least. hmmm food for thought.

greenqueen wrote:

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Hi bundtrock,

Sorry to hear you're suffering like this post-tx

There are more people speaking out about severe post-tx side effects and I'm sure we're not all delusional! 

We need proper transparency when it comes to making treatment decisions and the admission of the possibility of permanent long term damage from the consultants who dish out the drugs.

Steff xx

 

---

 Thank you very much, I totally agree, we do need full and proper transparency and that has not been forthcoming from the drug companies or the CDC or whatever Federal agency is responsible.

I would just like some answers and people to stop patting me on the head like a child.

Hi bundtrock,

Sorry to hear you're suffering like this post-tx

There are more people speaking out about severe post-tx side effects and I'm sure we're not all delusional! 

We need proper transparency when it comes to making treatment decisions and the admission of the possibility of permanent long term damage from the consultants who dish out the drugs.

Steff xx

I am post treatment since April 2008, had to look it up as I have memory issues now as well, I have not improved other than the itching has subsided, in the years since, in fact I am worse.

I was told I had both Hep B and Hep C in 1996, I did nothing at the time, treatment wasn't an option as I could not pay for it and did not have insurance.

I rocked along, moved and lived in another country for a couple of years in 1998, returned to Texas in February 2000, worked, got married in May 2005 and then at the end of 2005, I started going downhill, bad.  I did not work at all in 2006, I couldn't, 2007, I couldn't and decided I had better find a way to deal with treatment, so I wound up going to a County Hospital and getting tested again and referred to their Hep C program.  I began treatment last quarter of 2007, Pegasys/Ribavirin combo.  Within 3 weeks I was all but bedfast, couldn't eat, sleep, depressed, nauseous, itched like mad.  I can't remember which genotype I had, but I gained up to 335 from around 240 in 2006-2007, when I started treatment.  My Dr told me that I had the easiest genotype to eradicate, but I was at the 50% mark because of my morbid obesity.  Luckily, I guess, I did clear and my 6 month SVR showed "undetectable."

Since I ended my 6 month treatment, I have become housebound 99% of the time, I have weight bearing joint pain, unable to stand, walk, for any length of time at all, can barely walk around the house without becoming totally winded (have COPD AND USING 3 INHALERS,) sit for longer than 10 to 15 minutes at a time, kneel, crouch, bend or climb stairs at all.  I take meds for high blood pressure, major memory problems, DEPRESSION and social isolation pretty much across the board, can't sleep for more than 4 hours at a time, irritible, cranky. anxious, the whole 9 yards and I AM YEARS POST TREATMENT.

I am SICK of people telling me it is all in my head, I have not had SEX in years, NO DESIRE, ZERO DRIVE and that is all in my head as well?

Hi Elizabeth

yeah it shocked the socks of me - here in our comfy 'Aussie world' we are very protected from what ppl in other countries consider 'normal' - for hvc to be an endemic disease is indeed a sad state of 'normal' ... sigh

onward and upward - I' fine and very happy  to be able to say Greg is doing REALLY well - at least this  week anyway - day by day is definitely the best way to go =)

did he mention that he went to see Dorothy the Dinosaur with our granddaughter Bella yesterday? I 'generously' let he and Bella's Mum go on their own hahaha!! - hundreds of screaming kiddies are not my thing at all - they both had a great time - they also had hot dogs for lunch and an hour playing the three pigs and big bad wolf followed by hide and seek - (did i mention Bella is 3.5 yrs?) - Greg had SUCH a good time - he managed to make it to the bed when he got home where he slept for the whole afternoon LOL

interested if somewhat horrified to read about the post treatment itching - will add it to all the info I'm putting out there to ppl who might be able to get a study going with regard to post treatment etc - am probably banging my head on a brick wall but I can at least try because it is obviously an issue

cheers - Cate =)

Hi Catie

thanks for your info ...yep horrific world wide disaster ..war and hep c..war with hep c..*she battles to make sense* or stop making sense...

anyway how are you going ???

elizabeth

Just found the most amazing and scary statement in an article about a study done in Kuwait last year ...

"Hepatitis C is endemic in the Middle East where genotype 4 accounts for most cases." (Annals of Hepatology, April-June, Vol 9, No. 2, 2010, 156-160 - am a little confused about the author/s but this is where I found it)

ENDEMIC!! ... how sad ...

still hunting down infor re post teatment 'things' - Dr Max Hopwood seems to be the only person thats been interested enough to do anything yet

The ethical issues around the drug companies not having bothered is for another discussion because they are not legally required to is for another discussion >=\

probably not a very interesting post but ..

from Roche who it has to be said were very willing to spend time talking with me - no follow up studies were done by them on test subjects for this treatment - and they don't know of any follow up done by other persons or companies - i can only conclude that would have cost money and the company didn't feel the need to spend it - surprise surprise

from our GP and nurse Roz - yes sometimes symptoms can take some months to clear - and sometimes underlying diseases do become apparent - they do not know if these diseases are provoked by the treatment

similar comments from the profoundly helpful and compassionate people who are on the multiple hep support lines that I contacted - and the offer from all of them for phone peer support contact for Greg from people who have gone through the treatment and are happy to share their experience and answer his questions if they can

hoping for more definite clinical comments and some paper work to give Greg's medico from my next two contacts - I'm also hoping that they will be the most useful ...

Thanks Catie.  I agree, it`s really useful to have someone with you when you go for an appt, for moral support and as a `back-up` if brain fog takes over.  When people are on this tx it`s difficult enough without being fobbed off when all you want is someone to take your questions seriously.  I  don`t blame you for making sure you will be there with Greg in future.  I had a good friend go with me to every appt which helped such a lot.

As far as recovery is concerned, Greg may have absolutely no problems at all, but of course we all want to know what the risk is.

All the very best of luck to you both,  try not to get too stressed, you have enough to cope with already.

Love from Jill xxx