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Author Topic: O/S or D/S long term effects??  (Read 14947 times)

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Offline Aldora

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  • Posts: 6
O/S or D/S long term effects??
« on: September 03, 2014, 10:01:27 am »
Does anyone know about long term effects after cure. I am wondering if after O/S or D/S treatments there is increase chance of arthritis or fibromyalgia..?. Maybe too early to comment, but wondering if someone has knowledge now of these possible occurrences after 12 or 24 month treatment. Aldora

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: O/S or D/S long term effects??
« Reply #1 on: September 03, 2014, 10:10:38 am »
Since interferon isn't used, there shouldn't be long-term effects, and in some cases, there may be reversal of symptoms caused by hep C.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline hlthy8

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  • Posts: 12
  • Eat Well
Re: O/S or D/S long term effects??
« Reply #2 on: October 06, 2014, 02:00:11 pm »
I have been trying for a year to get long term effects data and there is not much out there. I decided to get on the off label Olysio/Sovaldi combo after tracking the side effects while on treatment and post treatment for up to a year. so far, I have not heard of any bad long term effects but it is really too early to tell.
Look to the HIV community for long term effects of antivirals - I have not been able to find anything yet specific to hep C.
I think the side effects - at least I hope so - are short term. I am hoping to clear cryoblobulemia from treatment also.

Offline TerryFox

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  • Posts: 3
Re: O/S or D/S long term effects??
« Reply #3 on: October 23, 2014, 12:46:01 am »
S/O saved my life. The sides were brief and then non existent after week 6. (light nausea, slight headache in the back of the head. Some brief heart flutters but I had those from liver disease anyway. Gatorade or a good hamburger made them go away for me.
Labs done week 4, week 8, and soon week 12 with quantative and qualative VL. I am UD. My liver disease symptoms have lessened greatly. Most of my lab numbers are mid range for the first time in years. But I have no other health issues besides Hepc and 4th stage liver disease. I was treatment naiive. I now have more sustained energy. I don't get tired as quickly. I sleep much better. And my appetite is better than ever. No more brain fog.

Someone said S/O can kill you. I'd say it would take more than S/O to kill someone but that's just my opinion. I'd say problems arise for pre-existing conditions that may not have to do with Hep c or S/O.

Thank You S/O for saving my life so far, especially since I came close to dying from Hep and Liver disease last year.
It's difficult for me to understand when someone references Solvadi only. Solvadi can't be used by itself and I wish people would list the complete combo they are referring to so I can understand what they mean. Stay calm and carry on.

Offline johnsshutts

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Re: O/S or D/S long term effects??
« Reply #4 on: October 23, 2014, 12:29:47 pm »
That's great TerryFox, congrats! Thanks for the great info. If my Harvoni doesn't get approved in a couple weeks; I will probably be put on S/O, which is ok with me. I am geno 1a, with a 7 million viral load. Have a great day, and thanks again, greatly appreciated.

Offline Doluska

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  • Posts: 86
Re: O/S or D/S long term effects??
« Reply #5 on: October 25, 2014, 09:07:34 am »
Hi, I am Doluska and new to this forum. Just started my s/o/RIBA 12 weeks. I have very heavy per existing condition: artificial valve, 2 heart surgerys. My hepatologyst told me that this is an easy ride, but I can see that this looks like chemotherapy. I have some questions, that I will be happy to share with u, guys1) could somebody work during the treatment?
2) does somebody know people with heart problems, doing the same treatment.?
3) why some people are on s/o/RIBA, and some only on s/o
4) I was told that my treatment will be from 12 to24,weeks, depends on test results.
I am from Canada, 55 years, RN.
Thank u all, doluska
.

Offline johnsshutts

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  • Posts: 97
Re: O/S or D/S long term effects??
« Reply #6 on: October 25, 2014, 10:01:37 am »
Doluska,

1) I was on peg and co-peg (interferson & ribavirin) for 14 months. I worked during the whole treatment. It all depends on how your feeling. I was able to work most of the time.
3) What the doctor thinks will work best for you, and what the insurance thinks too. I don't know why the doctor didn't put you on S/O. That ribavirin is pretty rough.

That's all I can answer. Good luck and take care of yourself Doluska, and drink lots of water.

Offline rainbowray

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  • Posts: 263
  • Gen 1B
Re: O/S or D/S long term effects??
« Reply #7 on: October 25, 2014, 10:27:37 am »
Doluska,
I am in my 17th week of Sovaldi/Ribavirin, I can testify that I have no idea why the Doctors say it is not that bad. Most of them would not take it now if they had hepc. They would prescribe either Olysio or Harvoni depending on your genotype.
Ribavirin is rough, after a few weeks you will be very fatigued, your hemocrit will go down so it needs to be watched. 11 an below are warning signs of anemia which Ribavirin is known for. Drink extra water thru the day.
You may get headaches, rash, anxiety, sleepless nights. A big symptom is the anger mode , warn your love ones that you may get short tempered. Read a thread by Desertguy called "Why didn't they tell us"
The reason why I am going the full 24 weeks is I got non-detected in 3-4 weeks which makes my chances of being cured better now,.
My doctor said I could stop treatment at 16 weeks, but I'm going the distance because I do not want to do any treatment again. There are always things that the Doctors say, that turn out to be surprises, so watch out for yourself. Thank God your treatment is not as bad as the old school treatments.

Offline Doluska

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  • Posts: 86
Re: O/S or D/S long term effects??
« Reply #8 on: October 25, 2014, 10:31:30 am »
Thank u! I will try to take one day at a time. And be very couscous with the heart simptoms. I cannot compromise what was done to save my life!

Offline Doluska

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  • Posts: 86
Re: O/S or D/S long term effects??
« Reply #9 on: October 25, 2014, 10:42:34 am »
I am still looking for anyone with cardiac problems, who went through this treatment: s/o/RIBA. And learn about their experience. May be moderator knows some good reeds in establish med.magazins? Thank u all! D

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: O/S or D/S long term effects??
« Reply #10 on: October 26, 2014, 10:40:59 pm »
Doluska- I assume you got my message - if not, please post again.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Doluska

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  • Posts: 86
Re: O/S or D/S long term effects??
« Reply #11 on: October 27, 2014, 08:13:40 am »
Thank u for respond . May it be that I am type 1, plays the game only with RIBA? Some topics about ?  For now I am taking only 1 pill of RIBA. Be glad reading any info. Doluska

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: O/S or D/S long term effects??
« Reply #12 on: October 27, 2014, 10:35:25 am »
Perhaps ask your doc to show you the evidence about taking ribavirin with S+O for your genotype? The problem with the data as the #'s are too small to be truly meaningful. Here are some resources: http://www.hepatitisc.uw.edu/page/treatment/clinical-trials/32
http://natap.org/2014/HCV/073014_05.htm
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Anand

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  • Posts: 34
Re: O/S or D/S long term effects??
« Reply #13 on: October 27, 2014, 11:13:34 am »
Hi Doluska,

I have cardiac problems but I did not go through with S/O and/or  Riba.  I am 77 yrs of age and had heart attack and blood transfusion laced with Hep C, 27 years age. It was death sentence until Sovaldi made the scene!

 Because of my heart attack I have some dead heart muscle and it is ischemic or low blood flow in certain part of my heart.  My Hepatologist ruled out Riba due its side effect of anemia which may jeopardize my ischemic heart.  He did not want to take a chance due to my age. It was an easy decision with Harvoni looming in the horzon! 

He also ruled out Olysio due its drug interaction with Coumadin that I take.  It may result in internal bleeding.  Now I am ready for Harvoni.  My Hepatologist wants to be sure of my heart condition and I am scheduled for a PET scan which will give complete dynamic picture of baseline blood flow  as well as under stress induced chemically. I do not know that you can relate to any of your heart status. good Luck with your treatment and I will follow your progress as well of others.  Thanks  Anand

Offline Doluska

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  • Posts: 86
Re: O/S or D/S long term effects??
« Reply #14 on: October 27, 2014, 03:50:24 pm »
Thank you Anand! I just got call from hepatologyst, telling me that my antidepressant is interacting with olysio, this is pristiq, and I must change antidepressant. I am on Coumadin as we'll, so it is going to be not easy. They added Ribaviri too, that I don't know why. Harvoni is not in Canada yet, and I must start on this triplex. Hopefully, I will survive. Thank you. D

 


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