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Hep C Discussion Forum -> On Treatment -> Guess which perscription I have in my handbag? :P
Post Info TOPIC: Guess which perscription I have in my handbag? :P
Huey


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RE: Guess which perscription I have in my handbag? :P
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Hang in there Yellowrose, you are at the point of tx where the worst side effects happen,, At least this was my worst time with it,, Give it two weeks,,, just two weeks and if you don't start to feel better then consider lowering the Riba,  some of these DAA's can not be retreated with after initial tx, So IF you do have a relapse having used this tx you are on and not the S/L combo you can then treat the relapse with the S/L combo,,, So you do gain an advantage by putting up with it.



__________________

  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Isiscat2011


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Hi Yellowrose:  

Riba is almost certainly the culprit.  Sovaldi without Riba should not cause anemia to the extent that a rescue drug or transfusion would be warranted.  Of course there is always the exception but that is the rule.  

Do you have cirrhosis?  The reason I ask is that some docs are adding the Riba for people who have more severe liver disease as a sort of insurance policy.  



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Fireman Rob


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Yellowrose,,

Sorry to hear that you're not doing well on the tx. It might be worth considering dropping the Riba if it's looking like it will compromise your tx. In the cosmos study, Riba didn't make much difference in success rates anyway. 

The Sovaldi will continue to lower your red blood cell counts but that can be managed if needed via a rescue drug. Just my two cents. Keep us posted and hang in there.

-Rob



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
yellowrose


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Thank you for the response. I did my first labs this week and I'm already having issues. Red and white blood count down , and liver numbers up... They may have to reduce my ribovirin dosage which doesn't make me happy! We'll see what they look like on the 22nd when they will also do my VL.

__________________
genotype 1a, 4M + viral load, previous non-responder to pegilated, ribavirin with amantadyne quite awhile back.
Isiscat2011


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Huey wrote:

One Side effect you may not be aware of is that the virus and or drugs can cause Insulin resistance . 

Good point, Huey.  Both the virus and Interferon have been linked to insulin resistance (but not the DAAs as far as I know).  I had the misconception that I could not get type 2 diabetes because I have never been overweight but I was mistaken.  

My glucose rose during tx and it has never returned to what it was pre-tx.  I stayed in the pre-diabetic range for a few years and was recently diagnosed with type 2 diabetes.  My theory is that it was a combination of having hepc, probably being genetically predisposed for diabetes, and the Interferon just kicked the diabetes process into gear.  

I didn't get really serious about maintaining a low glycemic diet until I got my diabetes diagnosis.  Needless to say now I'm serious about it.  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Huey


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One Side effect you may not be aware of is that the virus and or drugs can cause Insulin resistance .  This is complicated and nothing has been done to study this effect as of yet.  Just don't eat any sweets , and stay away from sugary drinks, Stay away from Sugar all together if you can.  This way if you do experience a sugar spike you won't feel as bad.



__________________

  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Loopy Lisa


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I'm afraid there is never going to be a TX without some side effects, headaches are a common side effect of Solvadi. I was going through the list with my nurse so we both knew what to expect as the "normal" down-side process. One of my nurses (I love her she is great) were sat chatting about long term drug use. She also has a lot of H.I.V positive patients that are on 3 pills a day of drugs that have awful side-effects. We have to remember after 3-6 months we are done, it is temporary, some people don't have the luxury of ever stopping a treatment because they can only manage their viruses. We are very lucky we can cure.... I know its tough, and at times scary, but we can kick the butt of this damn awful virses in our blood and in a year from now it will be a distant memory. :)



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Fireman Rob


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Yellowrose,

I'm not that far ahead of you (week 5) and without the Riba. At week four, my fatigue has definitely increased and the photosensitivity is definitely an issue. My skin stings if I stay in the sun too long. I also have joint pain and muscle cramps, along with really itchy eyes. All of my sfx have been manageable so far however.

After my four week labs, my red blood cells and Hemaglobin are dropping and my bili is increasing. Hopefully I don't go too anemic. This is a great Tx and I'm very grateful to have the opportunity. Good luck to all!

-Rob



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
yellowrose


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Thoughts on New Treatment
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I started about three weeks ago on the ribavirin, Olysio and Sovaldi combo therapy. I was a non responder (after 7 months of hell) to the peg, ribavirin with amantadeen (clinical trial) I believe. During that horrible experience my VL actually increased and I was horribly sick the entire time.

I'm happy to say that after 3 weeks on the new treatment I am not doing bad. With first treatment a 10 on the scale of horrible, I would give this one a 5 or 6, and only that because I have been having painfull headaches. My treatment specialist told me that 100% of her clinics patients on this combo were 100% clear at week 5! This is amazing stuff for me, and I pray I don't break the trend. I have my first labs tomorrow, so I am praying for good results.

It was very interesting with my insurance company. My doc., and I discussed starting treatment and about 3 days later a pharmacy called and sent ALL THREE PRESCRIPTIONS for the month with a $40.00, copay! I was floored after the talk of expense.

Can anyone else tell me what side effects they are having on this treatment? I am exhausted (of course) and am having bad headaches. That with the inability to go in the sun, is NOTHING compared to the interfuron treatment.

Others thoughts?

Yellowrose



__________________
genotype 1a, 4M + viral load, previous non-responder to pegilated, ribavirin with amantadyne quite awhile back.
Loopy Lisa


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RE: Guess which perscription I have in my handbag? :P
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Isiscat2011 wrote:

This is very good that your doc wants to see you every 2 weeks and will be taking such good care of you.  

If you do need blood transfusions you shouldn't need many in a 12 weeks treatment.  They are not fun, but honestly, by the time you get to a Hgb of 6 you won't even care about what they have to do, anything to make you feel better and get you through the tx.  And I agree this is the way to go rather than reducing the riba.  

 Hi Isis, I'm 24 weeks as I am a G3, but I reacted fast on the Intereron and riba in a negative way, so this one maybe smoother for me :D

I might twerk though if I get all cleared :P

 

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
jimbob


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Isiscat2011 wrote:

Yes, Lisa, I can definitely think of worse things than having a blood transfusion.  Imagine if you had the choice of that or attending a Miley Cyrus concert.   I'd be begging for the transfusion. biggrin

 biggrinbiggrin That was good.



__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Isiscat2011


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Yes, Lisa, I can definitely think of worse things than having a blood transfusion.  Imagine if you had the choice of that or attending a Miley Cyrus concert.   I'd be begging for the transfusion. biggrin



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
jimbob


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Finally Lisa and good for you! Maybe the rib wont be as bad second time around. Hoping anyway. You are fortunate the doc wants to keep you close too. Should anything crop up, the two of you will be on top it.

Congratulations Lisa and good luck!

__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Isiscat2011


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This is very good that your doc wants to see you every 2 weeks and will be taking such good care of you.  

If you do need blood transfusions you shouldn't need many in a 12 weeks treatment.  They are not fun, but honestly, by the time you get to a Hgb of 6 you won't even care about what they have to do, anything to make you feel better and get you through the tx.  And I agree this is the way to go rather than reducing the riba.  



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Loopy Lisa


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Isiscat2011 wrote:

Good luck, Lisa.  smile

 

What is the I.V.F. you mentioned?

 It is artificial insemination (in vitro fertilization.) I cannot have my eggs stored by other eggs whilst i'm infectious. But as soon as I have 6 month clearance of the Hep virus I can go ahead. :)

Thanks Isiscat :)



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Loopy Lisa


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Thanks all, Riba rage to come lol :P

Thanks Mallani, I have to say my Doctor is very dedicated in trying to help me get rid of it! She wants to see me in person every two weeks also to make me feel more secure in my treatment as well. Also 2 week blood checks in the beginning and weekly if need be. I feel very looked after. Not keen on blood transfusions though, we did discuss pens, she is not really keen on them....We will see :D

HAPPY DAYS :D



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Isiscat2011


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Good luck, Lisa.  smile

 

What is the I.V.F. you mentioned?



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
mallani


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Hi Loopy,

Don't worry about the neutrophils- the interferon causes them to drop, and Riba has minimal effect. Riba only affects the Hb. I'm with your doc. Stay on the full dose, and get some Procrit or transfusions.

Happy days!



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Roxie


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Scruffy wrote:

I think I had a worse time from the riba than the peg. shots. Matter of fact I have riba flashbacks. Every time I log on here, when I log off a certain song by Neil Young and Crazy Horse starts playing in my head!!!

 

Agreed, I was only on Interferon the first time I tried treatment, and I thought that was bad, but Riba. whoa!

Let me guess.....Down by the River? 

Congrats, Lisa!  You are young, you'll sail right through. 



__________________

GT 1a / VL 6.5 million / age 64 / prior tx 1996 interferon

2/14/14 began Peg/Inf, Ribavin, Sovaldi for 12 weeks 

finished treatment 5/8/14  undetectable @ 4 wks, EOT & 12 wks
Scruffy


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I think I had a worse time from the riba than the peg. shots. Matter of fact I have riba flashbacks. Every time I log on here, when I log off a certain song by Neil Young and Crazy Horse starts playing in my head!!!



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Loopy Lisa


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Cinnamon Girl wrote:
Loopy Lisa wrote:

Thanks folks, 

It is still not going to be a picnic because Riba hates me, but I can cope without the needles. Also keeping my immune system intact means a lot to me, who wants to stay away from people when you need comfort the most?

I can offically say I'm worth 16 thousend + a month :P

Let's start round 2 :P

 

What excellent news, Lisa, and yes you certainly are worth it!!  Very happy for you!  biggrin

I can understand the reasons why you`re so keen to get started now, even with riba, and at least this time you`ll be prepared for how it could affect you.  Although without interferon in the mix you may well find that you won`t have the problems you had last time or at least they will be a lot less.  You should respond very well to this tx and I`m sure that viral load will soon come down! 

Congrats to you...keep us posted!  Jill x

 Thanks Jill, that is indeed a nice thought, I hope my body will register this time and not nose dive like last time. :D 

Either way, its not so scary when you know it disappears all the effects after treatment, so its not scary this time :) x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Cinnamon Girl


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Loopy Lisa wrote:

Thanks folks, 

It is still not going to be a picnic because Riba hates me, but I can cope without the needles. Also keeping my immune system intact means a lot to me, who wants to stay away from people when you need comfort the most?

I can offically say I'm worth 16 thousend + a month :P

Let's start round 2 :P

 

What excellent news, Lisa, and yes you certainly are worth it!!  Very happy for you!  biggrin

I can understand the reasons why you`re so keen to get started now, even with riba, and at least this time you`ll be prepared for how it could affect you.  Although without interferon in the mix you may well find that you won`t have the problems you had last time or at least they will be a lot less.  You should respond very well to this tx and I`m sure that viral load will soon come down! 

Congrats to you...keep us posted!  Jill x



__________________

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.

 

 
Loopy Lisa


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Groupergetter wrote:

You go girl. biggrin    Congrats on getting started.

 Thank you, I still have Riba in me, so may as well top it up :P



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Groupergetter


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You go girl. biggrin    Congrats on getting started.



__________________

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.
Loopy Lisa


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Thanks folks, 

It is still not going to be a picnic because Riba hates me, but I can cope without the needles. Also keeping my immune system intact means a lot to me, who wants to stay away from people when you need comfort the most?

I can offically say I'm worth 16 thousend + a month :P

Let's start round 2 :P

 

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Scruffy


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Loopy Lisa ! Wohoooo!!!!!!!!!!!!!!!!!!!!!!

biggrinbiggrinbiggrinbiggrinbiggrin

Glad for you. Round 2



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Tig


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Hi Lisa,

Yeah!! I'm so happy to hear you're getting this opportunity! You've got every reason to be hopeful and your positive attitude is going to see you through with flying colors!! You must be feeling very fortunate to be the first selected! I'm sure you're going to do well and will be able to relay good, useful information for the case study. You should be very helpful. Keep us informed. This is your time Lisa, good luck!!

Tig



__________________

Tig

68yo 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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Loopy Lisa


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Hey lovely heppers,

I just got back from the hospital, some good and not so great news today. The news I hate is now I have 17 million copies of virus, so I jumped a lot (1 - 17) although I know that is not too significant, but I don't like having such a high jump.

I am very sensitive to Riba, I went last time from 8,6 to 6,9 and my neutrophiles crashed low in only 2 weeks, and it got only worse. We don't blood transfuse here young people (meaning me) until it reaches 6 (as a G3 she prefers to blood transfuse than give a dose reduction.) So this time it is going to be from the start 2 week checks even without interferon, but I'm happy with that.

On a happier note, I have Sofosbuvir, in fact I am the first one from my hospital to get it so I have to report every little twinge so they get a general idea! It is also significant here in my hospital everyone is 1a or 1b, i'm the only 3 and there is no genotype 2 infected either. So if anyone turns up with type 3b in my hospital they know it came from me furiousfurious Not that I have infected anyone, but you know what I mean :S

My doctor would prefer to wait until next year for the non riba therapy, but for the I.V.F it is all systems ahead. Anyway, apart from that, in good shape, and I will start on the 20th after family has been to stay, and i'll be done before the year is out. Either way, I'm one lucky lady to have a doctor that calls me straight away to put me on a therapy that costs 16 thousend euros a month! I have to say it is a good feeling to be one of the first in Europe to be perscribed this medication with no insurance issues or complications. I just take my perscription to the pharmacist, they order and I pick it up. After, the hospital fax direct to the pharmacy. Simple really :D

So anyway, I'm back on the medications soon, complaining and probably freaking out, but this time I know what to expect lol :D

Hugs everyone, I am in a very huggy mood :D

 



-- Edited by Loopy Lisa on Tuesday 8th of July 2014 12:57:01 PM



-- Edited by Loopy Lisa on Tuesday 8th of July 2014 01:06:02 PM



-- Edited by Loopy Lisa on Tuesday 8th of July 2014 02:22:31 PM

__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
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