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Post Info TOPIC: Clinical trial Vancouver


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RE: Clinical trial Vancouver
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Hi Robert

I'm doing alright. Just trying not to overdo it day by day as have found if I feel great and cram too much into a day, it's followed by 1-2 days of headaches and fatigue! They're strange headaches too. The only one comparable was when I had an allergic reaction to an antibiotic and felt like I'd been poisoned!! These aren't usually as bad but have had a couple that get that painful so I take a T3 and lie down with a heating pad on my upper back and neck. This is where the pain seems to originate then creeps up my head to the front. Feels like a vise on my whole head. 

Ive had sleep issues for years so not sure if insomnia related to drugs. Take 1/2 a sleeping pill the odd time if I'm too wound up.

Enough of the whining, I'm trying to do a bit of activity each day whether a walk, bike ride,  gym or swim. I've stopped running as get overly fatigued after short time. Do the odd run/walk just to see if I cansmile. Was my 60th birthday on the 24th! How the hell did that happenconfuse!! The alternative's not so good tho.....

I'm getting through the treatment by looking at it as a training program for an event! I've done 10K, half marathon,marathon, half iron distance triathlon and did Ironman Canada in 2010 when I turned 55!! I have been very fortunate not to have had any fibrosis or major health problems with the HCV. I can't tolerate cow dairy,  have chronic depression/anxiety, have lichen planus, weird rashes and have lost my eyebrows and arm and leg hair. Head hair getting thinner but I've had autoimune issues in past so not sure if that's related. Have arthritis in various joints (not bad in knees and hips) and have had CMC reconstructive surgery on one hand. Have had some days in past where my whole body hurts like the flu. 

I'm kind of stubborn and manage to push myself to do things even when I hurt. Looking forward to finishing treatment and hope the virus is gone for good!! I always wonder if things would have been easier without having HCV for who knows how long. Found out I had it in the 90's. Not sure if I got it from blood products during post delivery surgery or emergency surgery. Or before that?? My kids are 32 & 31 and are fine. So is my husband. And genotype 3 is less common. It's a mystery for sure as I guess it could have been any medical or dental procedure ever!!

Thanks for listening

Cheers

Kathy

 



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Treatment naive -Genotype 3a -no fibrosis. Found out in 90's that I had HCV. Started clinical trial June 9/15 Harvoni/ribavirin



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Hi Kathy, I hope your doing well.  I was wondering how things are going with you and treatment? Riba is hard to take for most folks.  How is your energy and are you able to sleep well?  RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Thank you for your support.

Kathy



__________________

Treatment naive -Genotype 3a -no fibrosis. Found out in 90's that I had HCV. Started clinical trial June 9/15 Harvoni/ribavirin



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Hi Kathy, great news on your 4 wk undetected result, that's a sure sign of how well you're responding to the treatment! 

Recovery time does vary quite a lot from person to person, you're right in saying that.  As Robert mentioned, the riba takes about 6 months to completely clear from your system although you'll probably start to notice the difference within the first few weeks post tx. 

It's good to keep up some light exercise but do take extra rest when you need to.  Basically, listen to what your body's telling you.  Make sure you keep well hydrated in the heat.

Thanks for your update, keep going! smile



__________________

Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

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

 

 



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Kathy, It"s good to see your body clear the virus early in treatment. That is a very good sign of things to come.The riba drops your red blood cell count and that is why you get fatigued easy. Try to keep up with your routine. As far as feeling good again after the end of treatment all I can say is the riba takes a while to wash out, months. Lots of folks on Harvoni mention headaches, that seems like a common s/x.  Please keep us informed as you go along  RC

 



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Hi All

Well it's halfway through the 12 week treatment todaysmile! I got info that at 4 weeks there was no detectable virus!! Have had a headache for 3 days so will just keep managing them. Might be the hot weather we're having making them worse too as i don't do heat well anyway. No anemia and i've had no nausea so consider myself lucky. 

How long after treatment does it take for somewhat normal energy to return or is it variable depending on the individual? i was used to being quite active running and doing triathlons then my dad was not well and required care a couple years ago then died last October so lots of stress and less exercise. Managing to walk and get in the pool a few times a week but treatment seems to sap the energy. Will be nice to eventually have that energy back!!

Cheers

Kathy



__________________

Treatment naive -Genotype 3a -no fibrosis. Found out in 90's that I had HCV. Started clinical trial June 9/15 Harvoni/ribavirin



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Hi Kath!

Thanks for your update, it`s wonderful when we see this sort of news and I can imagine just how delighted you are!

Harvoni works very quickly for some people and you have the added boost of ribavirin helping too. 

Make sure you are drinking plenty of liquids, water especially, as that will help alleviate any side effects including headaches. 

Insomnia can also be a side effect of ribavirin and if you find it gets any worse than normal you could think about taking your second dose earlier, some people do find that helpful.  

We`re always very pleased to follow our members on clinical trials, you are the ones who pave the way for future treatments and we`re very grateful to you!

Do keep us updated, best of luck! smile

 

 

 



__________________

Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

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

 

 



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Posts: 19
Date:
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Hi

Thank you for your reply in new members section! I will repeat my amazing news here. At the start of the trial my viral load was over 800,000 and at my visit this week they informed me that after one week of treatment it had dropped to 31. It was a very emotional minute hearing that!! absolutely amazing!

Had headaches off and on for the first 2 weeks but have felt good the last 2 dayssmile Insomnia a problem but I've always had that



__________________

Treatment naive -Genotype 3a -no fibrosis. Found out in 90's that I had HCV. Started clinical trial June 9/15 Harvoni/ribavirin



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Posts: 5599
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Hi there Kath, welcome!  I`m glad you`ve found our dedicated section for clinical trial participants.

Thanks for filling out your details in your signature line, that`s very helpful for us when responding to you.  From your details it looks like this is the trial you`re on...

https://clinicaltrials.gov/ct2/show/NCT02413593?term=gilead+harvoni+and+ribavirin&rank=2

Please do keep us updated, we`ll be looking forward to following  your progress.  This is a very friendly group so feel free to have a good look around and join in the discussions, and if you have any questions we`ll do our best to help. 

Happy to have you here with us and wishing you all the best of luck!  smile

 

 

 



__________________

Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

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

 

 



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Posts: 19
Date:
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I started on June 9/15 Harvoni and ribavirin for 12 weeks. Grateful for this opportunity to hopefully remove this from my body and also as cost in cdn$120,000! 



__________________

Treatment naive -Genotype 3a -no fibrosis. Found out in 90's that I had HCV. Started clinical trial June 9/15 Harvoni/ribavirin

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