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Hep C Discussion Forum -> New Members Area -> Newbie Gt 3a Sovaldi/ Ribavarin 24 weeks - Porphyria
Post Info TOPIC: Newbie Gt 3a Sovaldi/ Ribavarin 24 weeks - Porphyria
beingsassy


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RE: Newbie Gt 3a Sovaldi/ Ribavarin 24 weeks - Porphyria
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Aloha

i did 12 weeks of sovaldi and riba. If you want to avoid rashes use baby body wash and cold showers. Worked for me but it may not be practical for everyone in winter. I live in the tropics so was no big deal to take cold showers. The worst side effect for me was rage. I knew it could be a problem but didn't realize how much rage I'd have. 

Take care of yourself during treatment and get plenty of rest, eat well and stay hydrated. You will get through it. 24 weeks is not that long in the scheme of things. 

Gigi



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genotype 2 completed sovaldi and ribavirin on 6/4/14. SVR on 12/3/14
Soookiesue2


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Yep Robert, my husband has been pre warned about the RIBA rage, he has pretty thick skin  the thick skin The bleeding and thin skin almost sounds like Porphytia Cutaneous Tarda, often caused by Hep C. I have that as well, but have had it under control for years with phlebotomies. It's mainly on the hands and forearms, is that where this is occurring on you?



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
Soookiesue2


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Thank you Jill! One supplement I definitely have to ask about is magnesium. I used to get REALLY bad calf and feet cramps at night and took magnesium. Those recently stopped when they took the diuretics out of my blood pressure Meds, don't want those to start again! Do you know if it's ok to take magnesium?



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
robertsamx


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A couple things here to comment on. I did NOT experance headaches, I did get tired mid days but sitting and taking it easy helped. I found the riba caused raceing mind and racing thoughts that led to rage, but after a few of these experiences you see them coming and take action to avoid them.  (leave the situation)    The riba rage can be difficult on those around you,but if they know about it before hand , it helps everyone deal with it. The second thing I want to comment on is I see a lot of  running to the vitamin cabniet  when starting treatment?? Keep it simple, less is more! Nothing wrong with a good multi vitamin 1X day. It is just my opinion.  As for bruising, and thin skined bleeding,I am aprox 15 months post treatment and over the last 6 months I bruise easy, and just a brush by anything and I will tear and bleed. And I will bleed to long .I dont know if this is a result of treatment drugs,may never know? I will check the bleeding thing at next Dr Visit.  RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Cinnamon Girl


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Hi Teri, the most common side effects you`re likely to get from Sovaldi+Riba are headaches and tiredness.  Drinking plenty of water will help and also taking extra rest if you need to, and eating a good healthy diet. 

Ribavirin is well known for causing irritability and anxiety too, and you may possibly find you get itchy skin, but it varies from person to person.  Try to take it as it comes and don`t get too worried in advance about side effects or taking any extra vitamins. 

It`s a good idea to make a list before seeing your doctor and do ask us any questions you may have, there are others here who have been through the same or similar treatments, and we`re all here to give you support.  

Best of luck!  smile

ps - I like your nice smile!  

 

 

 



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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.

 

 
Soookiesue2


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Thanks for the heads up Nirmalee! I'm glad I'm doing this in the fall and winter to cover any brushing or rashes? So this K injection is a vitamin? I'm making a list of things like this to talk to my doctor about. I'll see him a couple of days before I start treatment :) I've read on this forum that vitamin B12 is good too, not sure why yet.

 

Teri



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
dragonfly


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Hi further to my previous post - look out for unexplained bruising as you may need a vitamin K injection.  There have been unexpected blips in this treatment with one in 100 showing strange sx but don't worry.  I was one of them and the situation resolved itself.  I can't believe the difference that these drugs have made to my life.  Keep strong and positive.

Nirmalee

 



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Soookiesue2


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I'm really greatful for this site and all of you going through this journey with me :) 



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Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
robertsamx


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SK2         I did 16 weeks sof-riba. I dont think the sof had any S/X . It takes 7-10 days for the S/X of riba to show up if they show up at all.  Hang in there and you can get it done. RC



__________________

 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Soookiesue2


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i only got 28 days supply. My doctor replied this morning that it will be a fight with the insurance and they will want me to try the Ribavarin first :( I guess I'm lucky my insurance is covering any of this with my low viral and liver counts so I'm stuck. I'll just make the best of it keep positive thoughts :) kinda bummed though, I was getting excited about a 12 week course without RIBA.

thank you!!!



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
robertsamx


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sk2, I hope you can get it changed.  Did you just get a 4 week supply of riba - sof ?  If they sent you all 24 weeks  of treatment meds you may have trouble returning the riba. usually they only send out 28 days of meds at a time.But just 4 week of riba you might  have a chance.  Keep us up to date on how this works out for you.   RC



__________________

 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Soookiesue2


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Hi Robert, 

im looking at trying to get my tx changed from Sovaldi/Ribavarin 24 week to

Sovaldi/daklinza for 12 weeks, I've heard the success rate is very high and not as hard on you as the Ribavarin....

I sent a message to my doctor this morning and waiting to hear back

 

thank you !

 

 



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
robertsamx


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the svr on 12 weeks sof-riba are poor less-than 60%. I dont think the 12 week sof-riba is even offered ?  however  12 weeks sof-riba-peg has svr of 86%   F1-F2  should clear the virus with 24 weeks sof-riba.  you would want to add the peg if you were f3-f4    Below is what the insurance companys have ratteling around in there heads.  RC

daclatasvir+sofosbuvir X 12 weeks    estimated cost 147k

daclatasvir+sofosbuvir+ribavirin X 24 weeks  estimated cost  295k

Sof+Riba X 24 weeks   169k

Sof + Riba + peg X 12 weeks  97k



__________________

 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Soookiesue2


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Hi Greg and Nirmalee!

thank you! I'm sending a message to my doctor this morning to ask about the 12 week tx with Dallinza, wish me luck!! Have a great day all

Teri



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
dragonfly


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Hi Teri,

I did the 12 week Solvadi/Dacltisvir (sorry spelling is atrocious), cleared within 2 weeks after contracting this in 1976.  Go for it!  If you want my advice have plenty of leafy green veggies as they will help you with any anaemia.  Water, water always and ginger and garlic in food to ward off infections.

Nirmalee xxx



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Groupergetter


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Welcome Teri.  this is a great forum.  Very caring, knowledgeable, and supportive people.  You should do well on whatever tx is prescribed.  Glad to hear you're getting started soon.   Be well.



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Soookiesue2


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Hi Tig!

thank you for the big welcome and info, I would much rather do 12 weeks with the newer drugs, problem might be that the insurance company has already sent me a 28 day supply of Sovaldi and Ribavarin, which I haven't started using, maybe its not too late to get the RIBA changed since its not as expensive. I have an appt with my doctor the beginning of September, a couple of days before I'm supposed to start. I'd much rather take the Daklinza :)

I'll keep you guys updated for sure:)

 

Teri



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
Tig


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Hi Teri,

Welcome to the group! The treatments for GT 3 are much better than they were just a short time ago and you should do very well. There are some different options out there and Sovaldi/Ribavirin for 24 weeks is one of them. The other two I would consider are Daklinza/Sovaldi (12 weeks) and the Harvoni/Ribavirin (12 weeks). Be sure and ask your doctor to consider the cost and time involved in the 24 week protocol, the 12 week treatments may be options worth considering. Your insurance carrier may have some input on this as well. So weigh all your options. They are all very effective. There is also a new one coming soon from Gilead, Sovaldi and their latest, currently called GS 5816. It is going to be the next big blockbuster. Since your viral load and fibrosis stage are both low, you may be able to wait, if your doctor thinks that's a good alternative.

The good thing is knowing you have so many good options now and all of them effective, with a much lower side effect profile than before. If you have any questions, let us know. Here's a link to some information on treatment options and GT 3:

http://www.hepatitisc.uw.edu/pdf/treatment-infection/treatment-genotype-3/core-concept/all



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Soookiesue2


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No he didn't mention that drug, I'm going to meet with him just a few days before I actually start, the RIBA is the one I'm most afraid of, I'll let you know what he says. :)



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
justvlm


Veteran Member

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Hello welcome

I don't post often, currently waiting on a GI appt next week to discuss treatment.  As a gt2, I am hoping to discuss the newest med paired with solvadi , daklinza   it has been FDA approved for gt 3.  Did your doctor consider this tx?  I hear Riba is "doable", but with my job requirement I need a little more assurance.



-- Edited by justvlm on Tuesday 18th of August 2015 11:42:21 PM

__________________

GT 2, DX 10/2007, BX stage 0/1; grade 0/1... treatment-naive

11/2014 fibroscan F1-F2 (8.2)

Pretreatment VL 1.9 million

Start Sovaldi + Riba 11/23/15

Undetected  at 4 weeks tx

12 week post treatment results. CURED !
Soookiesue2


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Thank you Jill! Yep, I'm giving up my beloved locally grown California  wine :) I know it's for the best! :) I'm looking forward to getting good results!! 



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
Cinnamon Girl


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Hi there Teri, good to meet you, welcome! 

You should do very well with Sovaldi and riba, it`s a very effective treatment, so try not to be scared!   We all know what that apprehension is like while you`re waiting to get started, but you`re not likely to have much trouble with side effects, they should be quite manageable especially if you make sure to keep yourself well hydrated and eat a good healthy diet.

Just one thing though... please give up all alcohol straight away, it`s not at all good for your liver!  Most of us miss the occasional glass of wine, but really the health of your liver is more important.

I`m glad you found us,  you`ll be in good company here, and we`ll look forward to following your progress!   Very best of luck!  smile

 



__________________

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.

 

 
Soookiesue2


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Hi there! 

 

Well this is going to be fun and I'm really happy about finding this group :) I have genotype 3a and have probably had it since early 70's drug use :( I was diagnosed with Porphyria Cutaneous Tarda (stores iron in your liver and causes skin lessions) in 2003 and the doctor decided to rest for Hep C because they are often related. Turns out I do have a low vl of 22,900 of Genotpe 3 and liver status is F1 F2. I wAs also recently diagnosed with Lechen Planus, also related to Hep C. 

Im started sovaldi/Ribavarin on 9/7/15 after our last camping trip of the year. I'm super scared and not looking forward to giving up my weekend wine :(  after reading a lot of posts on here, I'll make sure to keep hydrated and keep up my daily walks and weekly yoga, as well as lots of healthy foods. I'm  62 yo female, retired and try to stay busy.

 

Looking forward to joining you warriors in slaying this dragon! biggrin

 

Teri

 



__________________

Teri

GT 3a vl 22,900

probably infected 1970s drug use

diagnosed 2003 with Porphyria Cutaneous tarda

Started Sovaldi/Rib 9/10/15 24 weeks

F1 F2
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