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Hep C Discussion Forum -> General Discussion -> Do you really want to do that?
Post Info TOPIC: Do you really want to do that?
Cinnamon Girl


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RE: Do you really want to do that?
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Hi Iris,

please don`t ever feel you don`t belong here - you`re one of us and a valued member just like everyone else.  What Isis said is absolutely right, you`re a great support to people here, and we all care about you.

I`m not familiar with your insurance and health systems over in the US so I can`t comment on that, but I wish you the very best of luck with your on-going struggle to get the medical attention you should be entitled to.  So sorry you`re having to go through all this, and I hope your situation improves soon. 

Take care of yourself, hugs, Jill xxx  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Iris Dragonfly


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:) isis, thanks, ...have been thinking bout going back to the specialist I saw 12 years ago (cept now he has a bunch of youngins filling in for him) and just paying out of pocket to get the script ..then see if a drug co. will cover me. That out of pocket may mean allot of beans and rice for awhile:( (yuck) but where will I get my blood draws? I wonder if the clinic could help there?

 I'm just so tapped, am sitting at a friends right now, had to flee my house, such a long story.  :.(  wonder if life will ever be normal. 



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Iris Dragonfly


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am so tired, don't feel well, want to hurl. I fainted yesterday and that has never happened to me before, felt like someone poured cold water on my chest as I felt all the blood in my body, like, rush downwards, and then I fell over backwards. I was in the middle of a ptsd meltdown. spent the night at a friends, and she has a heater that sounds like a freight train, so sleep was little, and I woke up crying, just so distressed over all this garbage. my nerves are so done, so raw, so incapable of coping, 30 years is a long time to be dealing with this, crazymaking business.



-- Edited by Iris Dragonfly on Friday 2nd of March 2012 03:47:10 PM

__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Isiscat2011


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Hi Iris:  First, you should know that your encouragement and input are very valuable and appreciated here.  So, there is no reason whatsoever to stress about that .

Second, the lack of insurance explains quite a bit.  This is so wrong and I don't know what can be done about it (except to begin by kicking idiots out of government).  Many people here have mentioned the financial aid that is available for the meds (you may be able to get them without cost) so if you decided you wanted tx it might be within your reach.   Whatever you decide you will find support here.



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Iris Dragonfly


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Hi Lady...thanks for responding, my other issues are tachycardia, fibromyalgia, chronic fatigue (HBV), and depression. I HAVE been trying to get my general practitioner to refer me to a GI, so far I have been denied, I am currently awaiting appeal to this decision. My situation is kinda on the border of sucking greatly, I have no money, no insurance, and no energy to work any more days than I already do. My husband is of little help financially, or emotionally ( he has issues of his own). I am seen at the local free clinic, where they have monitored my blood work for about the last 10 years. My liver enzymes in that time have gone as high as 700, but in the last 9 years they have only been slightly elevated (probably because I have indulged in the brown ale). Since November I decide to chill on the ale (bummer, tis one of my favorite things to relax with in the eve.) No more. oh well,...however I haven't noticed, feeling any better since stopping that. 

The one very well known liver specialist in my area, I had the good fortune of seeing about 12 years ago, even suggested I wait because of the harshness of the treatment...*sigh* This is when I had medi-cal, but my daughter was a minor at the time and that is why I was eligible for the medi-cal. As soon as she turned 18...bye, bye insurance.  

You all are so great to let me hang around here, and whine, because I have felt sooooo alone in this nightmare since I was 18, like I was this walking disease, that no one else had or knew about. The nights I have sat up crying, wondering what will become of me, has been a constant source of despair, everyone here gives me hope... and I hope you will all let me stay even if I never get approved for treatment.

Blessings, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
LadyAlaise


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I also don't know what other medical issues you are facing on top of the virus; some of your docs may have suggested no go with treatments because of risks but like others have said; you need to decide what is best for you.

__________________

Genotype 1A, Genotype (from parents) CC, Viral Load=7,514,000 (as of 12/6/11) Started Triple Therapy TX: 12/17/2011.UND @ 4-48 Wks Taken Off Incivek @ 6 wks due to Rash Response. Finished TX 11/17/12. SVR year 1
LadyAlaise


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Iris I don't know where geographicly you are but you should be able to contact a local liver specialist and schedule an apt; you should be seeing one anyway for your Hep irregardless of whether or not you are on treatment or are going to do treatment. A referall from your primary care doc would most likely be best but I would think you should be able to get to a liver specialist anyway. If I misunderstood and you are currently seeing a liver specialist than you should be able to request treatment ultimately it is YOUR choice not the Docs they CAN refuse to treat you but you can also ask to be referred to a liver specialist who WILL treat you or who MAY say Yes for your treatment if you really want.
Mine told me that if I attain SVR then yes I will still have the anti bodies for Hep but the virus will be GONE.

__________________

Genotype 1A, Genotype (from parents) CC, Viral Load=7,514,000 (as of 12/6/11) Started Triple Therapy TX: 12/17/2011.UND @ 4-48 Wks Taken Off Incivek @ 6 wks due to Rash Response. Finished TX 11/17/12. SVR year 1
Isiscat2011


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Hi Iris:  I'm confused.  Every doc you have seen has told you that tx is too harsh or not a good idea, and that it does not really work, and, the doc you just saw refuses to refer you to a specialist?  Is that right?

I would like to try to give you a meaningful response, but I don't understand what is going on here. 



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Iris Dragonfly


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Hi guys, ...welp, I just saw the new dr. And can I just..... SCREAMMMM!! He seems to think all my aches and pains will go away with some ibuprofen, and some ranitidine, and no he won't refer me to the hosp, and he says they only take people who liver enzymes are elevated above 150 or 200, and the treatment is much too harsh. I told him about the cirrhosis and I am afraid if it gets too progressed than I won't be a candidate at all. I'm so friggen frustrated, I don't know if I ever get to see the specialist. How will I know if I'm a candidate or not? On the down side I have no support in my house, and I couldn't possible think of being more ill around someone who couldn't give a mother friggin **** how I feel. I'm really sad and I'm really pissed, and I feel really alone.evileyefuriousnocryhmmyawn

 I contacted a local support group, they meet one Saturday a month, and apparently most are transplant patients, but the gentleman said he had some resources...we'll see



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Isiscat2011


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I think of SVR as a permanent remission and it is permanent for all but a very few.  Tx can indeed result in SVR and any qualified doctor knows that.  It seems to me that the question from a physician's point of view is not whether the disease can be placed into permanent remission, but rather, the questions are what are the odds of SVR and whether the possible benefits of tx are worth the possible risks.  They are cautious because they understand the risks.  They are willing to put patients on the tx because they understand the possible benefits.

I absolutely don't agree with the idea of tx at any cost and neither would any rational person. (Of course having a disease of this nature oftentimes makes us less than rational.) To exchange long term health problems or death for the virus is absurd.  Having said that, for some people the odds are on their side, and the possible benefits outweigh the possible risks. It always comes down to that.  It is a gamble because the uncertainties are great.

If you don't have stability around you now is there any way you could get it, Iris?  Keep in mind that there is no such thing as perfection and people have achieved SVR under some pretty crappy conditions.  OTOH, waiting for better tx may be the better option.  It just depends on the individual. 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
hrsetrdr


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I'll be starting treatment in about one month, and I don't care about anything else in life as much as I do in achieving SVR....and staying that way!

 

wink



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
JoAnneh


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Iris, I have friends that took the Interferon/RIBA years ago And they still don't have the virus anymore! What I have always heard.... If you cleared the virus and it is still cleared/gone 1year after treatment is over then you are cured. My friends have been cleared one for 11 years the other 16 years. So virus do leave! Just like colds leave

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Susan


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When I first discovered I had hep c in 2005(or was it 2006?) I read a lot of info about treatment and I decided it was not what I wanted to do considering I had genotype 1 and the outcome was just not all that promising. I also did not want to tie up 48 months of my life for a dodgy outcome. So I waited, hoping that better treatment options would come available at some point. Well, here we are in 2012.... My viral load increased although liver function was still looking ok. My biopsy showed minimal scarring and my MRI was also good basically showing inflammation which is to be expected. But I did NOT want to worry about a decline into liver disease so I did more research, talked to a couple of doctors, and decided to go ahead with treatment. Maybe you don't have the right doctor. Perhaps you should seek a second opinion. Check out some of the new trials. Weigh all of the information carefully and then decide what is best for YOU. I was so happy to be UND at week four and in spite of the side effects, I know that when I finish treatment, I will be glad that I did it.

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Diagnosed: 2006 - genotype 1a/b Begin TX 1/13/2012. Triple therapy/Incivek UND at Week Four :-)
Caryn


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Hi Iris,

 

I was seeing an infectious disease doctor and he held off on treatment ( or referring me out to get treatment) and monitored my liver and blood for years.  I would go see him every 6 months and he would tell me that everything was the same...nothing was getting worse.  I skipped a year and went to a GI after some kidney stone issues and found that my viral load had spiked in to the millions and that there was some scarring on my liver.  I have not had a biopsy done, this was  a blood test that can tell if there is liver scarring.  I was referred out to a specialist and she said it looks like (from the blood work) that I am stage 2-3 with liver scarring and my liver is inflamed.  I am scheduled to start treatment this year. I don't feel like I have a support system either. For the last 10 years I have lived my life knowing I have this and it has made me crazy knowing that one day I was going to have to do something about it.  I have decided that I will do treatment because I feel if I beat this and achieve SVR that the quality of my life will be so much better. I know the treatments are harsh, but I intend to find as many support groups in my area so that I do not feel alone. 

 

As far as I know, the virus remains in your system. I am not sure if it is just the antibodies or the actual virus.  I read somewhere it is  like the chicken pox. Once you get it, it is always in your system. Once you achieve SVR it is unlikely that the virus will come back.  There are a ton of people on here that have much more knowledge than me, but this is just what I have read and hope this helps!

 

Good Luck!



__________________

1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Iris Dragonfly


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I don't know about you all, But for all the years this miserable virus has been with me, I have yet to find a Dr. that thought treatment was a good idea. For SOOOOOOOOOOOOOOOOO long the standard answer was ...well there's nothing we can do. Then I heard about the interferon, and the Dr.s I was seeing at the time said it was a terribly harsh treatment, AND, in the end...the virus would still be there, AND the side effect are horrible, AND they may stay with you for life. That was awfully discouraging. Even the specialist I saw about 10 years ago said all the same stuff. Then when the drug most helpful to 1a's came out, I pressed the dr.s once again, and he told me It may help some, But, they all stressed, once a virus (any virus) is in your body, it is there for LIFE. Period.

Well, now what...take the chance that treatment will compound all the other difficulties I already have? and like Moody was saying, stability around you is important, I'm not sure if I'll ever have that, hummmm.....confounded...Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
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