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Post Info TOPIC: Post Treatment
Cinnamon Girl


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RE: Post Treatment
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Hi Alma, lovely to hear from you. Congrats on being UND at end of tx and also on your new relationship!  smile  Good to hear you`re slowly getting better, and it sounds like your appetite has come back too.

Just over 2 months post tx is still early days.   You took a real battering while on tx, so it`s bound to take time, and 20 lb is a lot of weight to lose.   We`re all different, and some people make a quicker recovery than others.   I must say it took me quite a few weeks before I started feeling better from the physical and the mental sx, maybe because of my age or maybe because of existing health issues.

Take care, and give yourself plenty of space and time to heal and get stronger.  Best of luck with your lab results. Keep us posted!   thumbsup.gif

~ Jill xx

 



__________________

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.

 

 
Anna Christie


Senior Member

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Posts: 137
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Hi guys.finished tz end of March 2012.Felt pretty sick on it.Mentally and physically. Slowly getting better in both areas. Have fatigue, depression, memory lapses,cold sweats, and anxiety. Have not been working. Doctor dismissed me from care except for labs on 2 weeks and in sept. It is what it is.Rough Tx and slow recovery. Doing stuff.got in a relationship with a really nice man. He did tz 12 years ago 48 weeks and cleared the virus and is in great shape now. So I will hang on and just got to adjust to my current new reality. Gained maybe 15 pounds so far.Had lost 20. Hi to all. Hang in there. I was udt end of Tx and feel will be udt with June 14 labs. Was it worth it? Yes. Don't have hep c hanging over my head anymore. Just got to keep putting one foot in front of another and keep moving.by the way I am 58 and know two other women who did tz who are over 60 and both are having fatigue. So maybe age is related to my issues. Will let u guys know lab results when my 3 month udt comes back. Alma

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Isiscat2011


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Good information, drivington.   smile

I don't know whether the tx is just a successful public relations job designed to generate billions of dollars in profits to the pharmaceutical companies (and in some cases medical corporations) or whether it is a positive thing for people with hep c. 

I do know that large corporations that promote it are in the business of making money and helping people takes a second seat to that.  

The results of all this will probably fall somewhere in the middle, which means that existing tx will  cause about as much harm as it does good.  The question is, is that acceptable?

Certainly it is acceptable to those who profit from it because they can continue to profit from the sx created by the tx. (Mind boggeling but true.) But, is it acceptable to the general public that a tx will do as much harm as good? 



__________________

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


Newbie

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Tell me about it, Steff.

 

For those contemplating treatment, check out the .pdf here:

 

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cts=1330824675737&ved=0CC0QFjAA&url=http%3A%2F%2Fnchsr.arts.unsw.edu.au%2Fmedia%2FFile%2FRecovery_from_hepatitis_C_treatments.pdf&ei=gcVST4CAKorXtgf_2Ki3DQ&usg=AFQjCNEm-gelLGwEDejRTZhajcjpw1f0WQ&sig2=aAT97w5LmrdAwvmqpvztVw

 

Or if the link is messed up google "recovery hepatitis c treatment max hopwood national center in HIV social research".  This is really important.

 

Read the CDC info sheet for physicians here and ask yourself, "So how many really die from it?": 

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm#section1

 

 

Consider what Dr. Koretz says:

''I think the companies have done a superb job of marketing this disease,'' said Dr. Ronald L. Koretz, emeritus professor of clinical medicine at the University of California, Los Angeles. Dr. Koretz said there was no good evidence that treatment made a difference since many patients cured by the drugs might never have developed serious problems anyway.

 http://query.nytimes.com/gst/fullpage.html?res=9F07E7DE1E31F931A15754C0A9669D8B63&pagewanted=2

 

 

Since one is rarely "dying" when one contemplates interferon, perhaps one should watch "Fat Sick and Nearly Dead" and think about other forms of treatment before using interefron. 

 

Interferon might cure you.  It also might really mess you up.  The "cure vs. really mess you up" ratio is totally unknown.     Many of these boards are dominated by folks who "ra-ra" interefron  treatment because "Hep C will kill you."  I think they underestimate the potential that interferon has for really, really diminishing your life.

 

Your gastroenterologist is likely unaware of the scope and extent of side effects, for any number of reasons (doesn't want to know, buys into BigPharma propaganda, feels great when he "cures" soembody but really doesn't think about whetehr his patients like to ski or hike (arthritis) or wear swimwear in public (psoriasis) or need to make money (lasting brain fog)).

 

Rheumatologists, dermatologists, psychiatrists, neurologists and SSDI lawyers work with folks who suffer form the lasting side effects.

 

 



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wander


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Thank you... I believe you are correct. Never thought about it from that standpoint. I know my Dr. whom I have known for 10 years pre tx was taken aback when I went in for 2 month post tx chk up. I have been following up with mental health Dr.s I honestly feel they are not seeing the whole picture. I appreciate your time and I will look for the reports on post tx.

Have a great day and take good care,

Kind Regards,

Wanda



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Wander
greenqueen


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Hi Wander,

First of all all lot of people are being told by their medical teams that they will feel wonderful within a month or so of stopping tx, when in fact it can take much longer and in some cases people do suffer long term side effects. Unfortunately, there is very little in the way of post tx support and some doctors often refuse to acknowledge that any health problems after tx have any connection with the powerful drugs we've been taking.

I will be totally honest here about my own experience and this is not meant to put people off doing treatment (which has saved many lives), but to drive home the need for more info, so a patient can make an informed choice.

After being told I would feel wonderful and have more energy after tx, this didn't happen. I gave it a while but I was feeling a lot worse than before, despite achieving SVR. Underwent many blood tests to rule out other problems and made many doctor's visits to try and get to the bottom of the problems. I have been diagnosed with ME, a damaged immune system and constant joint and muscle pain as well as cognitive impairment.A Neurologist did agree that this was a result of the treatment. In the past, many people found it difficult to speak out about this, especially when their concerns were dismissed by some of the medical profession.

This is just what happened to me and we do have members here who report feeling a lot better afterwards.

My point is that for patients to make an informed choice about tx, medical teams should  point out the possibility of long term side effects and be upfront and honest with their patients.

Some of the drugs stay in your system for at least 6 months and then you have to readjust mentally and emotionally to life after treatment. You need to give yourself more time to recover and be very gentle with yourself.

Hope you start feeling better soon smile

Love Steff xx

 

 



__________________
Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
Isiscat2011


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Hi Wander,  My tx was ended about 2.5 weeks ago in the 10th week.  Mentally I felt better within 24 hours; my head just began to clear.  Physically, however, I am still having many of the side effects I had on tx and I had just about every side effect listed on all 3 drugs. 

I was hospitalized and received 2 pints of blood just before doc pulled the plug on tx.  The improved blood values post transfusions seem to be fading as my hgb is now dropping again.  I am now undergoing various cardiac tests to determine whether any damage has been done there.  I had pre tx cardiac tests which showed my heart was functioning perfectly prior to tx.  It is too soon to call for me but clearly many people are experiencing long term problems post tx.  

If you have not yet, read the post-tx study done by the Hep C Trust, which is posted in this section of the forum, by greenqueen I believe.  In a nutshell, more people feel worse post tx than pre tx -- that is 12 mos post tx-- and whether they achieved SVR or not does not make a great deal of difference in how they feel post tx .  I think every doc should read this before promoting hep c tx as if it was the best thing since penicillin.  Point is you are not alone. 

On the positive side, I am hoping there are things that we can do to help ourselves post tx.  Very healthy eating, exercising, and lifestyle choices can only help.  Try to keep in mind that you are still experiencing sx of the drugs; it is not you.  And, in time this too shall pass.  If you really feel like you are losing it mentally (as opposed to the *normal* amount of insanity this tx brings-lol) then please talk to someone who can help you in real life too.  You will be okay--I believe we will all get through this.

 



__________________

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


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Greetings,

Is anyone aside from myself, suffering post treatment? Mentally? * Phsically?

I ended tx 11-14-11  I feel like I am going crazy and not able to regain stamina.

Any feedback / experiences would be much appreciated.

Thank You

Wanda



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Wander
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