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Hep C Discussion Forum -> Post Treatment -> Update on Hep C Trust Post Treatment Survey
Post Info TOPIC: Update on Hep C Trust Post Treatment Survey
mallani


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RE: Update on Hep C Trust Post Treatment Survey
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Hi all,

This is an old thread, and I'm not sure how often it is read, these days. The post treatment surveys are from 2006-7, and 2009. These were the days of Peg/Riba, usually for 48 weeks. The results are pretty depressing, but they should be viewed in context. We don't have any recent surveys, and obviously as PegInterferon drops from the scene, results are going to be more positive.

Conclusions such as '40% of patients felt worse after treatment, despite SVR' should be viewed with caution. There is no doubt that continued HepC- induced symptoms may persist. Patients should be made aware of this, as this is a neglected aspect of our disease. However, reading the surveys gives the impression that many post-treatment issues were related to Interferon.

I am 13 months post-Rx, and can finally say that I feel better than I did before my 48 weeks of poison. It took almost a year for the joint/muscle problems to resolve. I now do not take any painkillers/anti-inflammatories etc, and have played golf 4 times in the last week. I was lucky in that I did not develop any of the other Interferon-induced problems.

As SVR will become the expected outcome in most cases nowadays, these old surveys should be viewed as 'interest- only' . I look forward to a new survey in a few years. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
elizabeth


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Steff, I'm so sorry that you suffer from ME.  My concern is that taking these poisons for such a period of time, how can there not be residual sx.  I know we need to get through tx before worrying about the next phase, but I've always had a tendency to look too far down the road.  With the level of fatigue my husband had the last few months prior to tx and now during tx, I can't help but wonder if he will be able to overcome it eventually.  We're not spring chickens!

God Bless!



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greenqueen


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I'm one of the people who took part in this survey and who feel a lot worse post-tx, despite SVR. I now have ME, which a Neurologist has accepted is a direct result of treatment with Interferon. He described it as my immune system putting up such a huge fight, that it's now damaged. I have constant fatigue, cognitive issues, joint and muscle pain and catch most bugs that are going around.

What really made me angry was the attitudes of consultants who prescribe these drugs and refuse to accept that the tx had any part to play in this and kept suggesting other culprits such as thyroid problems and depression. I took a long time to decide on tx and I asked many questions about long term sx and was told that the only problems could be Diabetes and a burnt out Thyroid and I accepted this risk. I was constantly told how great I'd feel post-tx and that my QOL would improve immensely. When this didn't happen, there were numerous trips to my GP and letters to the treatment team.

The Hep C Trust conducted this survey due to the amount of people contacting them with similar problems. Many people were afraid to speak up about this, because of the total denial by some of the medical profession that the tx had anything to do witheir their ongoing health issues and were in effect being told it was "all in their heads"

Another survey was also carried out in Australia, which I posted a while back.

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

It seems that the pharma companies haven't carried out any follow-ups on patients who have received their drugs, so Meghan's post is very interesting regarding a nurse educator from Vertex. Some GP's are now recognising that there are people who are having long term health problems, post-tx. If you take a closer look at the info that accompanies the SOC drugs, they do cover themselves on this possibiltity. I do know a few people in the same position as myself.

Obviously we won't know the long term effects of the triple therapy as it's new.

Thia isn't meant to scare people, but it can happen and when agreeing to any form of medical treatment we need to have "informed consent". If we aren't informed properly, then how can we make that decision?

Steff xx

 

Edited for updated link ~ Jill



-- Edited by Cinnamon Girl on Wednesday 11th of December 2013 05:37:58 PM

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


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Hi Steff, Sorry to hear you have ME. In my post about whether Rx is worthwhile in older patients, these are the types of conditions I was worried about. I saw my doc. at 0630 this morning and asked about Sx after finishing Tx. He brushed it off with "You'll thank me in 10 years time". Will I? In the mad rush to "kill the virus and cure HCV" mentality after the antiproteases became available,  it seems that full,  informed consent has got lost.



-- Edited by mallani on Friday 13th of July 2012 04:57:21 AM

__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Cinnamon Girl


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Yes, that`s right, it took place in 2006 -07.    Another thing to bear in mind is that with a web-based survey like this it`s quite possible to imagine that it attracted more people who were suffering from post tx health problems than those who weren`t.  

Even though this is interesting to read, and it is certainly true that some people do have on-going health problems as a result of doing tx, you can`t take a survey like this as being 100% accurate information.  

Hope that helps, Elizabeth.  smile

~ 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.

 

 
mallani


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Hi Elizabeth, I would not accept this Survey as gospel. It is old, pre triple Tx, and the SVR's quoted are not found in any other literature I have seen for double TX. I would concentrate on reading the posts in the Post Treatment section. Before long we should have a more up-to-date survey of the post triple Tx patients.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
elizabeth


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Quoting from this study, I find this totally depressing:

quote:

Post-treatment experience

Of all 484 respondents to the question Did you notice feeling consistently better after treatment than you did before treatment regardless of SVR, more people felt worse after treatment than before (40% reporting feeling worse as opposed to 31% reporting feeling better).

unquote.

And I don't understand how a person can feel worse after "curing" such a terrible disease.  What am I missing?

I also found this statement confusing.  If Geno 1 and 4 responded best, why are the SVR numbers for Geno 2 and 3 higher?:

quote:

The percentage of successful outcomes (in terms of SVR) are roughly in line with current data on treatment and SVR, although the SVRs for genotypes 1 and 4 were higher than average and slightly lower for genotype 3. Genotype 1 had a response rate of 66%, Genotype 2 and 3 reported SVRs of 89% and 70% respectively, with genotype 4 reporting 64% SVR

unquote.

I am obviously reading something wrong here.  



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James10500


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Good stuff. It would be interesting to break it down by length of time on treatment. I wonder if there is a correlation between time on tx , and post tx,sx.

Thanks,

James

__________________
Diagnosed 4/13/10; Started Tx 8/13/10; SVR 7/27/11
greenqueen


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This is a summary of the results of the survey which was carried out between April 2006 and September 2007:

http://www.hepctrust.org.uk/Resources/HepC/HCV%20Reports/Post%20Tx%20Survey%20Report%202010.pdf

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