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TOPIC: Would Appreciate Advice or Guidance

Would Appreciate Advice or Guidance 2 years 4 months ago #25110

  • GoodluckGirl
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Hello,

I was diagnosed with Hep C nearly 25 years ago. At the time of infection, I was being treated for Myasthenia Gravis with IVIG, which had contaminated blood byproducts in it. Because of the MG, I was unable to take interferon, which I hear was a nightmare even without a pre-existing condition.

I have now ordered generic Harvoni from India, through Soul of Healing/Care Exim. I didn't know about this option until after I purchased through them. With that said, I did find a lot of positive feedback about their organization, too.

I'm quite anxious about starting therapy because of the comments I have read from those who have taken Harvoni and the side effects that they experienced WITHOUT having MG. I'm so concerned that the medication is going to greatly weaken me to the point of no return. With that said, I'm encouraged that I have been prescribed to take an eight week course instead of 12 weeks or longer.

I exercise six days/ week and just started a lacto-ovo vegetarian diet, as I read a few other patients who experienced NO side effects and they all had been practicing this same lifestyle prior to treatment.

Just wondering if anyone else out there has taken Harvoni while also receiving treatment for MG. I would like to hear about your experience and any changes you made to your MG meds or lifestyle pre and post Harvoni.

Thank you kindly.
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Would Appreciate Advice or Guidance 2 years 4 months ago #25113

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Welcome Goodluck Girl!
I do not recall anyone else on this FixHepC forum having Myasthenia Gravis but many of us HCVers happen to have various other autoimmune, or other disorders.

The good news is that some people report the problems they thought due to the other chronic disorder, turned out after SVR, to have been caused by HCV.

If you take any medicines, supplements or herbal preparations for your MG, then you or your doctor will want to run those through the checker (there is a link on this site). That is to ensure all the medicines work harmoniously with the generic Harvoni.

Most likely, you'll need more than 8 weeks generic Harvoni to be more assured of SVR :idea: Please think seriously about this aspect.

It's a nice idea of yours to mitigate potential side effects through a lacto-ovo vegetarian diet. Other vegetarians on this site might may disagree. I did not get sides, and I do eat some meat but maybe that's just me. Eat whatever is good for you is the way to go :)

Pre-treatment there is inevitably, for all of us, natural fear of what might happen. We start our treatment, and wait to see what happens, it seems to turn out well. So I feel hopeful for you #love

With best wishes for your treatment, Mnem *)*
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
Last Edit: 2 years 4 months ago by Mnem. Reason: spello!
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Would Appreciate Advice or Guidance 2 years 4 months ago #25116

  • Bogdan16
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Hi,

I am about to start my treatment with Twinvir and I was wondering when is the best time to take the meds, in the morning, afternoon. or evening ?

Before eating or after ? And what vitamins should I take during the treatment ?


Thank you !
Last Edit: 2 years 4 months ago by Bogdan16.
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Would Appreciate Advice or Guidance 2 years 4 months ago #25117

  • Gaj
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Hi Bogdan16,

Timing of these medications and whether to take with food is mostly a personal thing. I would recommend that you choose a time that you think best suits you and try that. In my case I took mine as soon as I got up in the morning (easy to remember) without food, went for my morning walk to pick up the paper and milk then had breakfast about an hour after the pills. Others take with food, at midday, before bed, etc. The most important thing is to take them at the same time each day but if for some reason the chosen time causes issues then you can change it by stepping forward or back a few hours each day until you reach the new time. (the exception to above is those also taking ribavirin which is recommended to be taken with food). Here is a link to some 'Helpful Hints':

fixhepc.com/forum/helpful-hints-during-treatment.html

Regarding vitamins, the usual recommendation is to avoid most supplements during treatment. The possible exceptions are vitamins D and B12 if your levels of these are low - good levels correlated with better response under the old interferon treatments so may also be beneficial with DAAs. In my case, I tested for both and was a little low so took my doc's advice on suitable dosage.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 2 years 4 months ago by Gaj.
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Would Appreciate Advice or Guidance 2 years 4 months ago #25118

  • Greedfighter
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I took mine (Generic Harvoni - Twinvir) with beer every night after work at 6:00 pm :cheer:

I'm cured despite the beer. The most important thing is to take the medication around the same time everyday, and don't forget to take it ever! Not one fucking day! Twinvir is an exact copy of Harvoni. Don't fuck it up. Take it at the same time every day. And be cured. If you slip up...well you might be fucked. :ohmy: :silly: :evil: :( Just do the right thing for you!! That is to take it every day at the same time. That is what everyone who is cured has done. Same time every day. That is the secret to these meds. How long have you been infected? I could never forget the right time. 30 years.....I took it every day, within 10 minutes of the previous day. And it worked and cured me!
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
Last Edit: 2 years 4 months ago by Greedfighter.
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Would Appreciate Advice or Guidance 2 years 4 months ago #25119

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Hi Bogdan 16,
Avoid vitamin supplements unless you need them, instead spend that money and effort on good food. The vitamin industry is intimately tied with big pharma who are not our friends. They're always finding ways to say we need to buy their goods which at worst can harm due to excess, or more commonly make for expensive urine when excess is peed out.

Best wishes with your treatment, Mnem
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
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Would Appreciate Advice or Guidance 2 years 4 months ago #25120

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Hi GoodluckGirl and welcome, :)

Regarding MG and Harvoni, these HCV medications are generally safe for most patients but I am not a doctor so would recommend that you seek expert medical advice before commencing treatment to ensure there are no risks associated with it. Any medications you take for the MG or other reasons can be checked for interactions with Harvoni via the Liverpool University Interactions checker that Mnem suggested. Here is a direct link to it:

www.hep-druginteractions.org/checker

While I understand your concerns after reading about people's experience with side effects of Harvoni, please keep in mind that the vast majority who treat do so without any problems, reach SVR and move on with their lives often with few if any posts. Those few who do experience issues or relapse will be more likely to post about their experiences and so can seem over represented on forums, etc. Both reactions are human nature and as it should be.

I won't go into diet too much other than to recommend a healthy 'heart smart' type diet containing a variety of fresh fruit and vegetables, carbs and a suitable source of protein of choice but noting that strict vegan diets can be deficient in vitamin B12 although in your case the Ovo part will assist with this.

8 weeks Harvoni is only recommended for patients who meet certain criteria for treatment naive, fibrosis level and viral load. While it reduces the length and particularly the cost of treatment in that group it does still have a several percent lower SVR rate than for similar patients that treat for the full twelve weeks. For those who can afford it my recommendation would be to very seriously consider the extra four weeks to increase the odds of success.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 2 years 4 months ago by Gaj.
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Would Appreciate Advice or Guidance 2 years 4 months ago #25125

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Hi Goodluck
I don't know anything about MG but I can tell you that after a possible 50 year infection with 1a, I took Harvoni for 8 weeks with absolutely no side effects whatsoever and I went undetected after 4 weeks of treatment.
however 4 weeks after my end of treatment I was detected again and had relapsed. The consensus of opinion now is that had I taken 12 weeks it would have worked
I believe that any side-effects you might get now, if you get any at all, will not be as bad as the stress and crap you have to go through to treat a 2nd time round and don't forget you will still have the side-effects and probably for longer so do everything you can to get it right 1st time round
I strongly recommend you talk to Dr James he will put you on the right track

Keith
age 72 location UK
14-2-2015 GT1a 6.8 kpa F1-F2 VL6.46
16-3-16 started 8wks Harvoin
2 wks VL unquantifiable
4 wks VL undetected
8 wks EOT Vl undetected
4 wks post. detected VL 4.07 relapsed
22-5-17 started re treatment via Redemption 2 ,meds via Monkmed 12 weeks Sof Dac+Rbv
Riba via NHS
Starting VL 4.25 log 6.63 ALT 88 Fibroscan F2- F3 8.9 kPa
2 wks VL 2.86
4 wks VL below detectable level
changed Tx to Viekira+Sof+Rbv
6 wks VL undetected
13-9-17 EOT , ALT32, AST28
SVR 4 +12
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Would Appreciate Advice or Guidance 2 years 4 months ago #25134

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Thank you all for your input. It is greatly appreciated. I'm quite nervous about taking it since weakness is a side effect of the drug and Myasthenia Gravis is Latin for "Grave Weakness." My neurologist highly encourages me to take the medicine, but I haven't talked to him personally yet to hear what he thinks I might expect as side effects.

Oh, for the record, I was diagnosed with MG ten years prior to receiving the infected IVIG treatment. It seemed like there might have been some confusion about that. Hep C did not cause any other illness for me, so I don't expect any illnesses to be alleviated with the Hep C cure.

My gastroenterologist prescribed eight weeks for me. I think it's because my viral load is relatively low compared to other Hep C patients. With that said, I will double check to see if she thinks that this will be sufficient or if I will need another four weeks of treatment.

HCV RNA, QN, PCR 69900 IU/ML
Alpha Fetoprotein 1.6 NG/ML
Alanine Aminotrans(ALT) 49 U/L
Hepatitis C Quantitation 195,000 U/L
HCV log10 5.290 NORMAL
ALT (SGPT) P5P 71 HIGH
Fibrosis Score 0.03 NORMAL
Necroinflammat Activity Score 0.33 HIGH

The diet change is simply because I believe in a holistic approach when facing intense medical treatment. Lacto-ovo vegetarians still can eat plenty of protein -it simply isn't sourced from meat. I'm also working out six days/ week, which I have been doing for years. I have also started to do yoga again. During treatment, I hope to continue to exercise. Sleep is incredibly important and powerful to my well-being, so I am working on making sure that I get enough of it every night. I will also plan a couple of massages during the eight weeks. My biggest vice is diet soda. I have reduced my intake to about 1/10 of what I was consuming, but I would like to quit it altogether.

Gaj, thank you for pointing out that oftentimes we only hear about the bad reactions/ outcomes as opposed to all of the success stories. This is daunting for me because I don't want the MG to be exacerbated by (generic) Harvoni. Still, I want the cure badly enough that I'm willing to try.

When I was infected, I was a 21 year old college student. At that time, I was told to never get pregnant because I would infect my baby. I have faced numerous rejections from men when they heard that I had Hep C. My husband and I didn't even fill out the adoption/foster parent forms when we were told that the agency would do a deep investigation into our health. Most people don't realize how much Hep C altered my lifecourse. And just because my viral load is relatively low and I don't have any fibrosis doesn't mean that the Hep C didn't leave any scars.
Last Edit: 2 years 4 months ago by GoodluckGirl.
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Would Appreciate Advice or Guidance 2 years 4 months ago #25135

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Hello again Goodluck Girl,
Reflecting upon your doctors advice to opt for the 8 week treatment length, you would have time to order an extra DAAs to lengthen treatment so long as you get good turnaround time on 4-week viral load blood test results. Others on this forum have done that successfully.

Acting on 4-week bloods does not of course cover those who relapse after end of treatment, but it is certainly a good way to see how you are doing, early on.

I am looking forward to hearing when you start, the DAAs, you are setting up your scene so well with putting the new life habits in place. Well done!
With all my best wishes, Mnem *)*
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
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Would Appreciate Advice or Guidance 2 years 4 months ago #25136

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If you feel you want to take 12 weeks of medication (which is recommended, especially if you have very few side effects) you can always contact Dr. Freeman or Dr. Devsam at www.GP2U.com and obtain a prescription for the additional 4 weeks, if you want too. The cost is very reasonable.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
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