Author Topic: Nervous about Vikeira advice plz (Read 17487 times)

bkmusic · « **on:** May 20, 2015, 09:25:07 pm »

Hi ,
GT 1b Stage 0. Infected in 1972. I haven't really had any quality of life issues living with Hep C but just got approved for 12 week Vikeria park (no riba).

I'm 55 years old healthy and don't take any meds besides the occasional antibiotic. Very distrustful of big pharma and worried about long and short term side effects of treatment.

Reaching out to the community (newbie) to get feedback from those on Vikeira with similar profiles...

Thanks

Philadelphia · « **Reply #1 on:** May 21, 2015, 07:56:04 am »

I'm 1a w cirrhosis- 24 weeks Viekira plus Riba.

Without the riba I think it would be pretty good. Great success rates for 1bs too. My blog is in my sig - I have posted a bit about what treatment has been like for me - more in the first month as that's when the sides hit.

Drink water. Lots of water. Trust me on this. It will mitigate many sides. There are a few Viekirians here - me, Sapphire, Red Hen ... who else??

bkmusic · « **Reply #2 on:** May 21, 2015, 04:14:09 pm »

Thanks for your speedy reply. I need to connect with Veikira friends as I am conflicted about even starting the treatment and naturally I understand that NO ONE can make that decision for me, but having the support of others journey is very helpful.

I appreciate any other forums or sites that have helped you along the way.

shootingforzero · « **Reply #3 on:** May 25, 2015, 07:08:20 pm »

Bkmusic, I am in the same boat as you pretty much.
35 years old, Hep C since 1980, genotype 1b, no cirrhosis, no quality of life issues.
Am getting Viekira Pak via some Abbvie program, should be starting soon.

I share your concerns, but also figure this is my best shot at kicking Hep C.

The way I see it, I don't know if the meds will cause problems down the line, but I know that the Hep C will eventually. So I chose the meds.

bkmusic · « **Reply #4 on:** May 25, 2015, 08:27:53 pm »

Thanks for the reply and honest reasoning. Definitely let me know when you start how things are going along the journey. I won't be starting till end of June so definitely keep me posted are you doing with or without RIBA??

Thanks again,

shootingforzero · « **Reply #5 on:** May 25, 2015, 08:59:29 pm »

Without Riba, as I'm genotype 1b and don't have cirrhosis.
Don't think I would have done it with Riba. Partly because of the side effects.
Partly because I'm thinking about procreating and Riba rules that out for a while.
I'll be updating in the "Viekira Train" treatment thread for sure.
Also aiming to blog about it in more detail at shootingforzero.tumblr.com if you're interested in more details.
I'm told my first shipment of meds will be delivered tomorrow...

PS I'm stage F1-2

sapphire101 · « **Reply #6 on:** May 25, 2015, 10:28:54 pm »

I will put my lecturing big sister hat on:
BKmusic you are set to receive all the benefits of the viekira pak abbvie miracle.
You will have a 95% chance of clearing this virus for good and please take a moment to celebrate the enormity of this medical break through.
You also have received insurance approval, which if you read through this forum, is considered a second miracle by most of us.

Your next fortunate factor is your Genotype of 1b which does not require ribavirin and it is ribavirin that gives you the most troubling side effects. You should sail through this 12 weeks and please stay in touch because I am really curious about the viekira pak sans riba.

Just because there have been no issues for you with HepC so far, that does not mean your good luck would hold. It is often in the 6th decade that many long time chronic stable people find that their livers are suddenly turning on them. Some of this forum family has gone from really fantastic fibrosis levels of 0 to 1 to cirrhosis in less than one year. This is while living healthy lives and taking care of themselves.

I am so very happy for you that you get this chance of a cure before you have a sick liver. Most medical experts feel that if you attain SVR and do not have cirrhosis, you get your life back as if you have never had Hep C.

A free pass for a do-over!

You too Shootingforzero- stay in touch and best wishes for a healthy future.
Thanks for listening!!

bkmusic · « **Reply #7 on:** May 26, 2015, 05:42:33 am »

Sapphire 101 Thanks for your very sound reply. I got a perspective that I was looking for.

I don't have a good perspective since I have been living with this disease for a very long time and have been reading about the horrific side of effects of all kinds of treatments since I was a teenager.

I was seriously shocked that I was approved so quickly and wasn't prepared to process the whole thing. Doctors NOT helpful and very hard to access for a conversation.

I am going to go through with it and will definitely keep you posted and Congratulate you on your recovery and great stats.

Thanks so much big sis!!

Philadelphia · « **Reply #8 on:** May 26, 2015, 06:26:29 am »

Bkmusic, I believe without riba, this treatment could well be a walk in the park for you. Even with it ... Everything Sapphire said.

Do you know how lucky you are? Here in Australia these drugs aren't available to the vast majority of hep c patients. I'm only accessing it because AbbVIe and the Australian govt is allowing me access through a special (compassionate) access scheme. I only get that because I am quite sick.

Of the 230,000 Australians living with hep c, only a few thousand attempt the interferon based treatment currently available. I am one of only 100 Australia wide who has access to this potentially life changing opportunity of Viekira Pak. That's right - out of 230,000 only 100 can currently access this amazing new opportunity.

Take it. Run with it. Appreciate it for what it is: a gift of all your tomorrows.

bkmusic · « **Reply #9 on:** May 26, 2015, 05:43:29 pm »

Thanks so much for your post Philadelphia I really needed to see the other side of my fears and that what forums are for. Support and honest feedback. L

Like this group already. Thanks all will keep you posted as things develop and share my experience.

mcmaklin · « **Reply #10 on:** July 13, 2015, 05:44:08 pm »

I was offered Clinical trials for the treatment with Viekira no Ribavirin

I am genotype 1b, F1, 1,5mln viral load, TT.

PLEASE PLEASE because I do not know if I should wait for Harvoni.

Maybe somebody here is on Abbvie train with no riba

I am music composer, I am especailly interested in:

1. Can I have a brain fog during treatment that I cannot compose music and start forgetting things?

2. Can it remain after treatment forever?

3. Can any side effects remain after treatment?

4. What about rush?

5. Is it possible that I will have a constant headache or constantly feeling unwell for 3 months?

6.Will I be able to drive a car?

Please I need to decide very quickly Thank you

bkmusic · « **Reply #11 on:** July 13, 2015, 06:17:44 pm »

Hi McMaclin,
I am on week 3 G1b Stage0 No ribavirin.
Everyone is different but here's my experience so far.

First week was unpleasant but not debilitating. It is totally different now Week 3. I go to gym, I practice, I drive and brain for was never an issue (on occasion slight headache or nausea but doesn't last long at all.) I do NOT feel limited in any way. I haven't gotten week 4 labs yet but will keep you posted.

Everyone is different but so far it has been a very positive experience.

Best wishes on your decision.

Mike · « **Reply #12 on:** July 13, 2015, 06:47:55 pm »

That's good to hear, BKmusic!

Best wishes, Mike

shootingforzero · « **Reply #13 on:** July 14, 2015, 12:55:48 am »

Mcmaklin, I'm a writer and had similar concerns. I've been on Viekira with no riba for almost 7 weeks now. Like bkmusic I felt a bit funny (not terrible, but slightly tired, strange taste in my mouth, mild nausea) for the first 7-10 days, since then I've felt pretty much normal.
Never had a problem working, also I train (Muay Thai and running) 6 days/ week and haven't had any problem keeping that up, so far. The only side effect I've noticed is some itching from time to time.

Philadelphia · « **Reply #14 on:** July 14, 2015, 04:57:17 am »

Mcmaklin - why wait for Harvoni? You're geno 1b, which has excellent results with V Pak. No riba? You'll do it as easily as you would doing Harvoni, I believe.

I'm gen 1a, cirrhosis and on V Pak for 24 weeks. Sure i get a little silly in my thinking, but I also think some of that is my allowing myself to become unfocused. I can think just fine when I need to.

I drive - in fact I did a 300 mile trip to see my parents last week.

As for side effects after treatment - I can't answer that, as I still have 8 weeks to go.

I found the first few weeks hard, but that was the riba. most blood tests weirdness has been riba-induced as well.

Drink plenty of water, don't stress yourself and most importantly - don't borrow trouble!

If I were in your shoes, with the excellent cure rates they are seeing for geno 1bs, I'd do it in a New York minute.

shootingforzero · « **Reply #15 on:** July 14, 2015, 05:03:05 am »

Oh and I agree with Philadelphia, don't assume Harvoni is somehow better than Viekira. The truth is we don't know all that much about the long term effects of any of these drugs, but for us 1b people Viekira is actually the preferred treatment these days, or so I've been told by a doctor (not my doctor) who has no stake in any of this.
One thing: the list of drug interactions is really long for Viekira, just something to be mindful of.

mcmaklin · « **Reply #16 on:** July 16, 2015, 06:47:08 am »

Oh thank you! I found your replies here!

What about nausea, how it is? How long does it usually take, how to help it? And about skin problems?

I will probably go for it, I decided in 99 procent.

Philadelphia · « **Reply #17 on:** July 16, 2015, 07:34:15 am »

I was nauseated for the first couple of weeks - I could eat, but what I could eat was limited. So I just ate what my body said it wanted. Luckily for me it didn't say it wanted choc chip icecream for breakfast! I can eat anything now - well, I can eat anything I ate BEFORE treatment. I still don't like tongue or blood pudding and I can't see that changing. I drank lemon and ginger tea and that helped.

I have sensitive skin and I haven't had any issues there. Some people found they had itchiness and took antihistamines.

Many of my side effects came from the ribavirin. You won't need it only being an F1, I assume.

mcmaklin · « **Reply #18 on:** July 16, 2015, 07:55:02 am »

Thank you. Could the Riba be responsible for problems with eating?

Philadelphia · « **Reply #19 on:** July 16, 2015, 08:02:24 am »

If you read the data, a small percentage report nausea while just on VP, but a much larger number report nausea WITH ribavirin. I think all my sx have been amplified by riba. Not that I've had many.

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Author Topic: Nervous about Vikeira advice plz (Read 17487 times)