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Post Info TOPIC: Interferon dose reduction :(


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RE: Interferon dose reduction :(
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how are your leukocytes levels going?

yeah i know what u mean re meat/food. seems interferon is blocking/inhibiting taste receptors on tongue (and i swear definetly smell receptors in first few weeks)....i am really not into attempting ever again tx with interferon ever, on other hand i could take Riba with some DAAs no problem

well i was eating a lot of steamed veggies and turkey/chicken first few months, i have included red meat (mostly veal) last few weeks again. Looking fwd to some seafood cuisine when i hit the seaside.

Not long indeed my friend! tho i think post tx waiting game (for SVR12/24) will be (psychologically) tough too, at least we will enjoy in post tx stats of raising RBC/WBC levels ;-D

cheers



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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I am back on my paltry Riba dose of 200mg x2 a day. Many Blood test and sticks to follow.

I haven't ate much meat since treatment. Just doesn't taste good.  Lots of fish and shellfish  though. I'll stick with my pills and adding more orange juice to the smoothie regiment. Shrimp is supposed to be good for you too.  biggrin With the Interferon messing with your blood marrow and the Riba with the anemia it's like a one-two punch.

With Riba alone I wasn't seeing much rash. It was like it was under my skin itching like crazy. Now that I should be rid of the lingering effects of Incivek maybe it will be different.

Not long now buddy...fight the good fight.



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GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.



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@Malcom, my hepa said avoid if possible, but if i get asthmatic attack i will not hesitate to use Ventolin ;/ China and UK? biz or pleasure related? ;) have a nice a trip man! where you of to exactly in China? been there 6 years ago...totally insane rate of development (and pollution)

@Jerry, u never know with docs...my was whole time saying how reducing riba/pegintron is a bad idea, then suddenly got me on 2 weeks of reduced dose...i trust her tho. I am taking Folic,B12,VitC and VitE/omega3, don't see any improvements re WBC, tho VitC might help re HGB. I know a great way to increase RBC/HGB but not for us with liver problems (called black guber water, mild radioactive water from a spring in northern Bosnia, proven to work)...nurse from lab said to me, re improving blood to find horse meat steak? i can't find it here tho, we do not have culture of horse meat consumption. Slovenians and Italians tho do...

heheh, thanks man, but i will figure it out re Riba..."only" cca 200 left to pop ;D so you are still off riba? my hepa is using instead 10, 11 as lower limit for reducing Riba.

i am using Excipial LipoULotion for rashes (mostly legs and lately arms) from Riba...i do not complain, since i know it's 10 times tougher with people on Incivek with itching.

from all publications and general knowledge, monotherapies (either Riba or Peg) are ineffective. I guess Riba accumulates more as time goes on tx, then pegylated interferon's halflife in body...meh, can someone fast fwd me 10 year into the future with one pill full of DAAs that blast HCV in 3months with no sx

best








__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Sorry to hear your down. Can't hardly blame a Doctor for not wanting you out from under thumb during your treatment.

They still haven't put me back on my Riba. I was already taking a reduced dose 400mg due to what it was doing to my kidneys. I am not happy. He said he would not resume until got my HGB up to ten. He didn't take me off the Riba when my HGB was 9.5 before. I guess he's just looking out for me.
NP said all I could do was get my rest and for the first time said "some Vitamins might help." I have mostly stayed of of them except my normal ones I had approved unless my fatigue was too much so I promptly went out and got me some iron, some C, some more folic. I have taken folic, B6 & B12 regularly since I developed my heart problems and couldn't take the statins they wanted me too so bad. I am not a fan of them. Don't know if the vitamins help or it's the Omega 3's or more likely me changing my whole diet and exercise that helped biggrin Doc told me "I don't know what your doing to help keep your cholesterol down but keep doing it."

I am just hoping they aren't going to change my EOT either. I have asked about the course of action but no answers. Unless they can see a change in my VL I'm not going to be interested in it and if the Riba just causes that kind of anemia in me it wouldn't make much sense to make it longer.

6 shots! Your going to make it.

I'd send you some riba as I have about an extra bottle of it (two by tomorrow) but doubt it would get there in time lol.

I'll do my 8 shots I have left even with no riba if that's what he wants but I am sure he'll put me back on it in at least another week. Of course when he does I won't know whether to thank him or cuss him lol  Been nice not itching so much.

 



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.



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Hi Zlikster,

Why are you avoiding antihistamines? You don't have impaired liver function from your Fibroscan and LFT's, so you can take antihistamines if it makes life more comfortable. Obviously, check with your doc first.

I'm off to China, then England, so will miss your last few weeks. All the best mate.



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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



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thanks folks fo support ;) i was really down today. First hepa, then i got news from my ortho doc, tho i already knew since i seen my last xray in february.  I will have to operate my humerus pseudarthrosis so i am really keen to finish and recover before next ski seasson (i am addicted to snow i guess), i would have already did that, but obviously when i have been diag with hcv, i knew straight away whats my priority in life.

re interferon...6 more shots, doesn't sounds so scary...tho she was even considering 16w as eot (maybe since i was "almost" RVR), i am gonna give it a go with Neupogen at least 4 more shots i think i can do it. Thing is last time i was @ hepatology they were out of Riba (nurse borrowed me half of pack somehow), hope there will be some next time (8days left of Riba for me), since i doubt i can cover Riba and Neupogen at same time from my pocket.

Dubrovnik will be there indeed, tho other reason i wanted to go there, beside meditarenian cuisine from my grandma and swim (presunset/shade only tho!) is that i don't have allergy/hay fever there at all and this is my first season ever without antihistamines. I am mostly these days locked in house with aircon (good thing i have studio at home) 24/7 and i wear respro mask outside, which people here find odd (asian citizens would understand it tho), So i was hoping for some break from that too

@Malcolm, i have included much more beet and meat (and some vit c) in my diet and 10 days of lowerd Riba was, i guess, a nice rest for other part of blood "gang" (RBC,PLT,HGB all better). Actually i'll post updated blood chart, my "diary" that keeps me sane ;-D

@Jill, yeah i got bit more energy, but RBC/HGB was never that big issue, i didn't agree with her decision to lower me Riba in the first place (i was expecting to lower it when i go below 100 HGB).

@Karen, i will! and when i see folks like you doing clinical trials with such positive results, you give me longterm optimistic view on handling hcv even in case of relapse you must be really excited for such a great news @ 4th week ))





__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Hi Zlikster,

Well done! Dubrovnik will still be there when you have your SVR. Great Hb, you must be full of beans. You'll need regular shots of Neupogen to get you to the end. Cheers.



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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



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Oh My!  You have sure had your share...hang in!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014



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meh...just got back from hepa. Neutrophiles down to 0.4 (WBC 2.0) ;-( persuaded her to get back to Neupogen and full dosage of pegintron.

Hgb tho 130 and RBC 4.21 so she will gladly let me get back to 1000mg of Riba.

she is against any trip to Dubrovnik, so my sem-iholiday is no more. Said she can't let anyone with severe leukopenia/neutropenia on the seaside trip. Only hope is that my bone marrow will evade interferon sx and produce some god damn neutrophiles without help of Neupogen...i would really love to finish my therapy on the seaside.

keep fighting



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Hi Zlikster, good news about your RBC and Hgb levels anyway, and it`s great that your hepatologist has given you the go-ahead for more Neupogen. 

Sorry about your cancelled trip, but you haven`t got much longer to go now.  Disappointing for you I`m sure, but best to go along with her advice.  At least you`re back on higher doses again.  Hope your increased RBC levels are making you feel a bit better.

Hold on and keep going, the end is almost in sight!



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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.

 

 



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Zlikster wrote:

__________________________________________________________________________________________

Jerry, indeed we are my friend. I am about to finish mid July it will pass in a zip! Heard lots of unpleasent stories about Incivek sx ;/ tho these new DAAs seem to be much better sx wise...my RBC/HGB was damn good for 3 months, but i was living 1000m higher than now (on montain) and that might added a bit boost in producing more RBC. As soon as i have returned to city it was a downward spiral of RBC, tho WBC was going down from first shot...

best

Zilkster


 I had blood test done today and got a call back from my doc telling me my HGB had come up from 8.5 to 9.5 but he wanted me to wait till Tuesday to test again to make sure it's at 10. before restarting the Riba. Still doing my 180 of Pegasys. Since I have had heart problems before he didn't want to risk it getting that low again. I don't know what my RBC was.

I get to see my labs now online but takes about a week or more before they post.

July! Sounds great. The mountains and all that mountain air sounds great. I might go visit my brother who has a place up in some when I am through. Airs not that bad here. Not that much polluting industry here, mostly schools and computers. I used to live in the big smoke (Houston) ...so glad to get back out of there. 

I have read geno 3 do well on interferon and Riba anyway. At least your still on it.

Anyway enjoy your trip. Not that long now we are going to be roasting some Dragon butttttt ourselfs!



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.



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Malcolm, thats my mission convince her asap that i can bear with Neupogen, at least she must get me back to full Riba dosage on Tuesday (hgb is @ 119 RBC @ 3.99), and hopefully on next saturday back to "goodnes" of oversaturating my body with 120mcg of pegintron. Oooh, early 80s i nDubrovnik? Infrastructure sucked back than, but there was a lot more fish and less pollution, tho it's till pretty clean. I was spenging 20 days per year on boat with familiy area from Dubrovnik to Split (usually islands Brac, Hvar, Korcula, Peljesac, Mljet, Vis, Lopud, Lastovo) until 89...after war i was left with no more boats (destroyed), but thinking of getting a rib (maybe 2nd hand Zodiac, 6 seater), not for fishing tho...i don't enjoy it anymore tho, lots of overfishing happening on large scale in Adriatic, but some of my mates still love to fish tho diving (on breath espec)...still love Adriatic sea a lot (compared to lots of other seas, i really ain't into oceans much tho and bigwaves), but i am very worried that situation will be a lot worse in 30 years time. Really saddens me how we don't give a s*** about our enviroment. You wouldn't belive scales of ecocides happening in Bosnia's rivers n lake, espec fish population wise and in my view illegal small dams on pristine rivers. Newest small he dam will ruin one the most beautiful untouched drinking water and unspoiled river canyons here for "lousy" 35MW ;/ i really am considering to become "eco terrorist"


Jerry, indeed we are my friend. I am about to finish mid July it will pass in a zip! Heard lots of unpleasent stories about Incivek sx ;/ tho these new DAAs seem to be much better sx wise...my RBC/HGB was damn good for 3 months, but i was living 1000m higher than now (on montain) and that might added a bit boost in producing more RBC. As soon as i have returned to city it was a downward spiral of RBC, tho WBC was going down from first shot...

best









__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Thanks Jill, Lisa...in 2 weeks time i am off to my birth town, Dubrovnik (last 4 shots there) for 3 weeks of some fresh air and definetly less work (and stress). Being pretty over the top with job deadlines with min 10hrs work per day and lately insomnia too...when i get to a bit more into chilled out mode, maybe my bone marrow will be more please to produce wbc no matter how much interferon blocks it ;-D thats my short term motivation now, to get my anxiety down cause of dosage reduction.

Jerry, thanks for link now i know why my hepa was telling me about the less rbc/higher Riba toxicity, better chances/end results. She obviously knows these stats or she did her stats. I wish they had wider collection of patients data (eg my insurance only cares for 3rd month VL and blood test and gathers data), would love to get to some data mining and statistics. You are finishing soon too? we are just 1-2 weeks apart..hope you doing ok?

best






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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Zlikster wrote:

Thanks Jill, Lisa...in 2 weeks time i am off to my birth town, Dubrovnik (last 4 shots there) for 3 weeks of some fresh air and definetly less work (and stress). Being pretty over the top with job deadlines with min 10hrs work per day and lately insomnia too...when i get to a bit more into chilled out mode, maybe my bone marrow will be more please to produce wbc no matter how much interferon blocks it ;-D thats my short term motivation now, to get my anxiety down cause of dosage reduction.

Jerry, thanks for link now i know why my hepa was telling me about the less rbc/higher Riba toxicity, better chances/end results. She obviously knows these stats or she did her stats. I wish they had wider collection of patients data (eg my insurance only cares for 3rd month VL and blood test and gathers data), would love to get to some data mining and statistics. You are finishing soon too? we are just 1-2 weeks apart..hope you doing ok?

best





 Are we that close to finishing? I should finish the last day of July baring anything else. I talked to my Doctor today ... retest tomorrow and then or whenever my HGB gets back up to over a 10 I will be back on the Riba.

There was a thread that was titled Is Procript making you sick? I wanted to post "the cost of it is making me sick" My insurance pays very little for it but got to do what you got to do.  I'm sure my situation is different than yours but in similar boats.

I feel better now that off the Incivek but with the low RBC I get lightheaded and the sx are a little different or I notice the Peg-Riba ones more now. So I take it easy.

With the Incivek tipple combo I think most of the work is done by the 12 week or less.  I figure just cleaning up the bad stragglers at this point.

Not too much longer left!

Good luck



-- Edited by Dillo on Friday 24th of May 2013 04:08:31 AM



-- Edited by Dillo on Friday 24th of May 2013 04:10:41 AM

__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.



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Hi Zlikster,

I'd try to convince the Hepatologist to agree to some more Neupogen, so the Peg. can be increased. If she doesn't agree, not much more can be done. Good luck.

P.S. Say Hi to Dubrovnik. Beautiful place. I spent 4 weeks a year from 1982 to 1985, sailing along the Dalmatian coast, starting from Primosten or Hvar.



-- Edited by mallani on Friday 24th of May 2013 02:56:22 AM

__________________

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



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I had blood test at the first of the week that put my red blood counts from 2.71 the week before to 2.6.. I was promptly given my second shot of Procript in two weeks and told to stay off the Riba until further notice. They renewed my prescription for the Pegasys and Riba though so hopefully just temporary. I see my Doc today. 

On the other hand

Anemia Is a Good Thing

 

All we can do it wait and see.



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.



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That`s disappointing for you, Zlikster, but at least they have stabilised and not dropped any lower.  All you can do is carry on as you are doing and wait to see what your doctor says next week.  And in the meantime enjoy the lighter sx!  smile Keep going!



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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.

 

 



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Stay strong! x



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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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;( just got blood test results. No change from last week. Neutrophiles 0.7, WBC 2.1. Thats with halved dosage of interferon. Can't reach my doc before Tuesday. Desperate to get back on a higher dose of interferon. SX from 60mcg from of pegintron were so lite, i couldn't belive it...tho tinnitus intensity was same as on 120mcg (seems interferon dosage doesn't have much influence in tinnitus level).

my bone marrow is betraying me in this crucial time of therapy sems so ;/

i now even more admire people on 48week of interferon...

best



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Thanks Malcolm for a nice explanation

i was thinking to do this test: www.23andme.com (they got beside numerous other gene predispositions, ILB = https://www.23andme.com/health/response-to-interferon-beta-therapy/)

99$ sounds pretty cheap, but shipping is kinda overkill for Bosnia (160$!)

i do not even think to try to persuade my insurance to cover me that kind of test here...i don't wanna beg anyone.


best

 



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Thank you for the link, yes I suspected that this was the case. I have read that quiet a few genotype 3s have become undetected only to rebound. This is possibly the main reason as they are not having their IL28B CC/CT/TT genotype assessed. If I know my status I can be properly informed in which therapy would be more of benefit for me. Genotype 3 is considered a little "persicky" but it could be that these people have the unfavourable TT genotype. I will print that article off for the godess to argue the case for testing! ;) x



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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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Hi Zlikster and Loopy,

The need for the Interleukin 28B test has been discussed recently. With Interferon based treatment, knowing the ILB status was important in determining likely treatment response. In Geno 1's treated with SOC, those with the CC allele had a 60% chance of SVR, CT allele had 40% chance and TT alleles had 20% chance (roughly). With the current triple Rx, these percentages come closer together, but CC's still have increased odds. If the new DAA's ( including a NS-5A blocker) are used, all alleles have the same prognosis. This is because the NS-5A viral protein modulates the interferon response.

In Geno 2 and 3, there was still a difference in Rx response but this was less marked, so the IL28B status was not routinely done.  Recently there has been a revival of interest, as Peginterferon appears likely to stay around for a while for these Genotypes.  It has been shown that patients with the CC allele are more likely to achieve an RVR, and be eligible for shortened course of Rx., and have a slightly higher SVR rate.  Patients with the CT allele are only slightly worse off.  However the TT patients have a lower rate of RVR and a lower rate of SVR.

There are a lot of papers on this topic and I'll just post one. Cheers

 

http://jid.oxfordjournals.org/content/203/12/1748.full



__________________

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



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i asked my hepa about CC/CT test, she said there is no need for GT3. I waited for 3 months for commision to decide am i eligible for tx. Weird i passed without biopsy. My hepa said old docs are in commision and they rarely look are fibrosis results from FibroTest/FibroScan or biopsy, so i have passed without needles

keeping my fingers crossed for your F0/A0 liver! I hope you can afford to wait for new DAA therapy (or some new interferon prodrug that targets liver only!)





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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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ineed Malcolm, Lisa & Jill...i will continue to trust my hepa

@Malcolm, it's indeed my hay fever (had it since i know for myself)...and this is my first year ever i am trying to go thru it without antihistamines & corticosteroids. I wear mask and it indeed helps a lot outdoors, tho indoors sucks to be under aircon/filtered air all the time ;/ I have asked her about RA and how my joints pain is getting worse, she said it migh be that cause of my severe weight/muscle loss joints are taking toll. Can't wait to finish with tx, then i can do all post tx exams including RA marker . YAY "Life is good!" how i love these words!!!!!

@Jill i am already skin n bones, i am not sure why but i loose as steady rate of 2kg (4.5lbs) pre month while on this tx. Lately i am under lots of stress so it might be a factor too. I was able to gain 1kg back while i had more free time with munchies induced from vaporised cannabis, but i just do not have time for this

@Lisa, i have asked her about Ensure, but doc said just to eat better. I suspect that what she meant by "rest your body" seems SoC tx is taking toll generally (good thing psychologically i am still ok) As for Neupogen i jsut had headache (light) andbone pain in back and legs. Bearable! When are your results in? on 17th? Hope your are doing ok!

thanks guys n girls




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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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I discussed with my doctor the possiblity of taking the drinks given to cancer patients when they can no longer eat. Being slim myself I also worried about dramatic weight loss. Perhaps you could enquire to have this inbetween meals to boost your weight? I think too that your weight loss can't be helping!



__________________

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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I think because of your allergy she is not keen to continue with Neupogen. These are the known side effects:

  • Pain in muscles or bones (musculoskeletal pain)
  • Disturbances of the gut, such as nausea, vomiting, diarrhoea, constipation
  • Enlargement of the spleen
  • Fatigue
  • Weakness
  • Headache
  • Loss of appetite
  • Hair loss (alopecia)
  • Cough
  • Skin rash
  • Alteration in results of liver function tests
  • Nosebleeds (epistaxis)
  • Difficulty or pain on passing urine (dysuria)
  • Protein or blood in the urine
  • Decrease in the number of platelets in the blood (thrombocytopenia)
  • Decrease in the number of red blood cells in the blood (anaemia)
  • Injection site reaction
  • Worsening of arthritis
  • Fluid on the lungs (pulmonary oedema)
  • Pneumonia

I think you have to listen to your Doctor and take the reduction. Your weight is already very low and you have an allergy problem on top of treatment. At this point you cannot risk your overall health with an immune system that is already fighting an allergy. There is much evidence that a reduced dose will not effect SVR by much. This was also something that was discussed with my hep specialist as I was signing for treatment (on hold). As you have dropped a lot of weight reducing dosage is not really a big factor. It is the Doctors duty to keep you safe and well during treatment and she will put your best interests first above your treatment plan. Don't give up heart or assume you will fail treatment, as it is very likely you will obtain SVR and keep it. Stress wont do you any good right now, so try to relax and not panic. You'll have your next set of results soon, and it is most probable that you still are undetected. Hugs x

 



__________________

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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Hey, good to hear you are surviving, I would push for ensure, that stuff is great, if not buy some body building powder to put some mass on, I have never heard of any contradictions to taking this suppliment whilst on treatment.

The downside to neupogen is the cost, 3 injections a week is darn expensive, but it is widely used in chemo therapies (oncology) and helps people to stay on treatment, but the hep godess does know best what is good for you and will keep you safe!

Yes, Friday is results day, well awaited and aniticpated. I also want to ask about if i am CC/CT genoptype etc. I don't think these tests are given over here as a standard! I also want to know even with fast tracking of the European Commission (2 months faster, which means it will be a 5 month process of acceptance or denial) will insurances cover this straight away! I get the feeling that I may be on the bottom of the most needed pile if costs exceed current treatments! I may be on the Interferon if it takes another 2 years because I don't want to wait for problems (and if I have fibroses I get  the pleasure of watching my Hep specialist eat her shoes). I can't say I am looking forward to the prospect of interferon, but I don't particulary want to live with this cloud over my head either for years either.

Keep us updated on how your doing, eat like a pig (I heard washing your mouth out with some bicarbonate soda can improve taste issues) and treat yourself to what ever you fancy, the drugs are keeping your liver in check whilst on therapy, so have anything you fancy! :D

 



-- Edited by Loopy Lisa on Wednesday 15th of May 2013 05:37:57 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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Hi Zlikster,

IgE levels are unreliable and may be up to 800 in normal patients. Be aware that Neupogen can sometimes cause allergic reactions so make sure it's just hayfever.

Forum members have been on Neupogen for a long time with no ill-effects. The amount you need varies considerably from patient to patient.

Trust your doctor .

I'm almost back to normal apart from needing some more muscle bulk, but it's slowly returning.  I'm not having a blood test for 3 months, so I took a Nurofen tablet (ibuprofen NSAID) and my joint pains have gone!

Life is good.



__________________

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



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Malcolm,  I tried my best to persuade her to let me buy new Neupogen shot for today...but no go ;-( it was not negotiable. I have to halve dosage of interferon, as for dart after this one, we will see. Nurse tho thought i should continue with Nupogen (when i was taking new batch of shots). Oh well, i trust my hepa. She prolly knows whats best for me. I tried my best to persuade her to let me buy new Neupogen shot for today...

60mcg of pegintron tomorrow ;/ hopefully i will get on full dose Riba and PegIntron next week.

it was a good feeling tho taking 2nd to last batch of shots, end is near

all the best








__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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I must say I`m quite worried about your continued weight loss, Zlikster, from what you`ve told us you`ll soon be just skin and bones at this rate!   I remember what it was like to have no appetite and lose your sense of taste, and I don`t want to nag, but I really think you need to find a way to increase your daily calorie intake.  I can`t help feeling that too much stress and worrying can only be making it worse too.   I agree with Malcolm, trust your doctor. 



__________________

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.

 

 



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yeah Malcolm, i am up for it too, at least once per week Nupogen (i can afford it, 24h before Interferon shot weekly), but for the first time i've noticed my doc is worried, not sure why?. Usually she was the one pushing full dose as a absolute must, now we have switched seats. I asked doc about how much % chance of SVR am i loosing with this, she said not too much and that i have to look at broader picture, not everything is in goal of acheiving SVR. Also i have noticed she ain't that much keen on Nupogen in a constant use to fight this nasty sx of interferon (supression of bone marrow's wbc production), maybe she knows something about long term Nupogen sx? Does she knows something more about prolonged usage of interferon with Neupogen or constant low WBC? dunno ;-( as i said, i do trust her most of the time (she is specialised in viral hepatitis) and i won't go against her will, but i will try to prove i can manage it bit more with full dose

i got meeting with her (to take new batch of interferon shots) in couple of hours, i am gonna try to persuade her to go for full dose at least one more month, that is next 4 shots with Nupogen, then last 3 shots (out of 23) how it goes. And as i said i am ready to push myself to lower limits of neutrophiles (as u said 0.25)

Maybe cause my hay fever started few days ago (i got sometimes asthmatic attacks and i am usually swollen) and my IgE is again really high (over 600) or cause i've again lost additional weight? I asked her about about antihistamine intake and how i am wearing mask (pollen filter) so i can avoid using antihistamines. She said that it would be best to avoid em indeed while in this condition. Last time i talked with her, she said of course as soon as Hgb goes back over 110 i can go back to 1000mg of Riba, now she changed her mind. Really can't understand why i am "taking a rest" with lower dose this week?

I think she just might give me this week lower dosage of interferon and riba, then back to normal dose week after, but as i said i do not trust in lower dosage or break at this time of therapy. Maybe she saw something else in my blood pic that got her worried? I didn't saw anything that bad except neutrophiles (WBC 2.4, Neu 0.7, Lymp 1.3, EzGran 1,2, RBC 4.07, Hgb 125, Trom 158). Y1 macroglobulin was high (almost 20) but then again it was high at start of therapy.

btw, bilurubin is back to normal (15)

nice avatar pic! U look like u are back to old energy levels? looking good!





__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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Hi Zlikster,

You're only 36 yo! Why would your body 'need a rest'?  Neupogen only last 2-3 days, so you really need it 2 or 3 times a week. I know that's expensive for you.

This is only my opinion, but I would not accept a Peg reduction to 60. Also with your Hb, there is no reason to be on reduced Riba. This is your best chance for SVR for why compromise it with suboptimal doses. I would continue the full dose of Peg and Riba provided Neupogen is used at least twice a week. This is not medical advice, it's what I would do. I also wouldn't get a blood test for a couple of weeks.

Best of luck buddy. I know you're stressing but get your SVR this time, so you don't have to worry about future treatments.



__________________

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



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thanks guys n girls for kind words...anxiety reached a new level, when i saw my hepa for first time pushing me to lower dosage (she seemed genuinly worried about my deterioration), while most of the time i was complaining about interferon high dosage (i started with 120mcg instead 100mcg for my initial weight) and how i would love to shorten therapy to 16-20weeks cause i am afraid of long term tinnitus as sx, now we have swapped places! Now i am begging to go for more Neupogen and hit even lower neutrophiles limits just to stay on full dose of interferon. Kinda funny she won't bring me back up to 1000mg of Riba though my Hgb is back to 122. I guess week of lower riba n interferon won't hurt.

btw, when i was in this lab (private hospital) today, they asked me would i give some small amount of blood for some new ELISA (qual) quick test (they didn't had anyone with hcv handy i guess hehe) which are they now obligated to use everywhere and it's free. Finally some action is taken to tackle in diagnostic of this "silent epidemic" here.

hahah Vern ;-D how about pedophiles with low neutrophiles? ;-D

was any of you on halved dosage of interferon and if so for how long?

cheers!



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!




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The best way to look at it is your start weight was higher and Interferon is also weight calculated, so actually as you have lost a lot of weight you are already on too high doses. Maybe it is smart to take less. I hope you're OK though! x



__________________

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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Goodness Zlikster...Hope things get turned around for you...fingers crossed!



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014

KLG


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Good luck Zlikster!! I stayed undetected during a significant RIBA reduction ( to 200). Hope interfuron reduction works the same!

__________________

Geno 3a, stage 3, IL28 cc, diagnosed 94, interferon 1year, relapsed immediately, started RIBA/int on 2/1/13, 4 wk und. Female, age 55, EOT 7/18/13. 4 weeks UND, 12 weeks UND, 6 months UND!!!



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Hope this resolves itself. I not familiar with the medical issues your dealing with? I assume low white blood cells?  Hang in there - sometimes things get worse before they can get better. Hope this isn't the case. It's not like PegIntron is metabolized so quickly that a lowered dose makes a significant difference (I hope).

Not a joking matter but...... (I got to be me).

As a social worker I'm more familiar with pedophiles then neutrophiles.



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.



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Good luck, Neupogen only lasts a couple days and time for another shot.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



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just got back from my hepa. Neu again down to 0.7, i guess Neupogen doesn't lasts much. I said to her i am ready to finance 1shot per week of Neupogen and go with neutrophiles lower than 0.5, but she said i have done enough. Time for my body to rest a bit (her words), so she will lower PegIntron from 120mcg to 60mcg ;( I am not that pleased with her decision, since i've planned to go with full dosage until end with Neupogen or with even lower neutrophiles ;( Hope i will recover in 1 week and get back to full dose again. Lost some weight again (down to 65kg - 143lbs) ;(



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!


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