Author Topic: Trial participant, vierkapak+weight based riba (Read 14562 times)

Hepsub · « **on:** February 18, 2016, 05:37:56 pm »

Hello all, just popping in to share my info both for my sanity and that of others who dont get tested as frequently.. Ill save the verbage and get to it:
31 year old male, genotype 1a
4 weeks into treatment
3 FNA procedures (more extensive biopsy) , 1 more to go tuesday.
Viral load as follows:
Pre tx=~100,000
Hour 4=10681
Hour 6=1487
Hour 8=809
Hour 12=335
Week 1=16
Week 2=>12 (cannot precisely measure below 12 hence the ambiguity)
Week 3?

Side effects: initially some dizziness headache, fatigue.. Mostly subsided sans intermittent (sp) fatigue and headache. A few nights ago, i got a little flushed, and have swollen nodes in my groin, but this could be attributed to local or acute infection.. Not too worried but would still be nice to see if anyone had this experience..
I take suboxone (2mg) and tapering dose of clonopin (.25mg).. Wondering if anyone has similar situation and would love to hear exp.

Lost 2 pounds since treatment start, tho my second FNA went awry (needle went where it wasnt supposed to go)and i was in severe pain all day that turned to moderate pain and loss of apetite for a week.

AussieRosa · « **Reply #1 on:** February 18, 2016, 07:47:13 pm »

Hi there, Hepsub! Welcome aboard the VPak/Riba train. There's quite a few of us in the early stages of treatment on this combo atm so you're in good company.

Those hourly VL results are mind blowing. I hope you continue to have minimal sx and a successful treatment. Keep posting and letting us know how you're doing.
Rosa

NYCHEPCMAN · « **Reply #2 on:** February 18, 2016, 08:15:59 pm »

Absolutely wonderful and astounding!! I had no idea they monitored it this closely....thanks for posting and continued success

Hepsub · « **Reply #3 on:** February 20, 2016, 12:26:32 pm »

The monitor the levels so closely because i am participating in a clinical trial... My insurance denied me after 3 appeals so i searched the most reputable research doctors in the area until i got an appointment.. It took me 9 months, making a striking impression on the staff and a bit of luck and I was finally introduced to the head of clinical research at (organization).. I urge anyone who is having struggles with insurance to do the same. Like many things in life, if you really want something it can be yours granted you put in the necessary effort.. If anyone has any questions regarding research application or the process in general feel free to ask!
Thanks for your support!

Philadelphia · « **Reply #4 on:** February 21, 2016, 03:32:23 pm »

Great numbers, congrats. what is the trial testing?

Hepsub · « **Reply #5 on:** February 21, 2016, 08:52:37 pm »

Its testing the effect of riba on anti vitals. they take liver tissue by 4 biopsies for all participants in study and compare results at study end...

HazelAustralia · « **Reply #6 on:** February 22, 2016, 03:36:23 am »

Interesting Hepsub,
amazing to have such fine monitoring.
Ow to the biopsy.
What amount of ribaviron are you on: once or twice day?
I have had swollen glands in my neck and I sometimes get a burning feeling under my skin. I wouldn't call it flushed exactly. I don't think it's dehydration related, I think it may be sun sensitivity from the ribaviron causing a deeper level sunburn, but I don't know.

Best wishes,

Hazel

AussieRosa · « **Reply #7 on:** February 22, 2016, 04:08:05 am »

Hazel, are you using a good moisturiser all over everyday? I find I occasionally get something like you're describing and another application of sorbolene does the trick for me. The Hep C nurse gave me a tip to keep the moisturiser in the fridge. It will help with the burn or itch.

Hepsub · « **Reply #8 on:** February 22, 2016, 04:28:18 pm »

Thanks for the feedback... Im on riba twice daily (x5).... My last biopsy is tomorrow so heres to hoping its completed without an adverse event.... so anxious to discover my week 3 titer!!

Hepsub · « **Reply #9 on:** March 03, 2016, 11:48:43 am »

Some seemingly bad news... God my week 5 results back and they were unchanged from week 2.. still <12 but not undetectable.. I have read studies that viral load decline rate is not correlated to SVR but this is worrisome... anyone have experience they can share?
Thanks

Hepsub · « **Reply #10 on:** March 03, 2016, 01:24:02 pm »

correction** week 4 results

Hepsub · « **Reply #11 on:** March 03, 2016, 01:54:34 pm »

The more I inquire the more I see most people achieving undetected status at week 4 given my initial decline! Im trying so hard not to be alarmed by this but to no avail!

Philadelphia · « **Reply #12 on:** March 04, 2016, 03:19:37 pm »

Don't panic! Many people reach UND by 4 weeks but there is a sizeable group that don't, myself included. I was still 40 at 4 weeks, but hit UND somewhere between 4 and 8. I felt exactly as you do. Try not to worry, your numbers are looking fine.

Hepsub · « **Reply #13 on:** March 04, 2016, 10:08:54 pm »

thanks for the encouragement...nice to hear a familiar situation... your viral load was relatively low at the beginning of tx as well .. there is hope!,,I suppose all i can really do is wait...

Hepsub · « **Reply #14 on:** March 06, 2016, 11:10:09 pm »

lately i have been feeling strange... out of energy, a little foggy, but most notably... my heart has been beating harder and faster than normal and has kept me awake the last couple nights... it started as mild awareness of it in my ears and has grown to sensations in my chest.. i walk every day, drink water and go to the sauna.... anyone notice cardiovascular/ other strange effects from riba?

Philadelphia · « **Reply #15 on:** March 07, 2016, 02:28:57 am »

Your haemoglobin carts oxygen round your body. Riba depletes haemaglobin. With reduced levels, your heart needs to work harder to deliver oxygen. That will explain your out of energy feeling too.

I found the riba would slam my haemoglobin levels, I'd do it tough, then adapt to it so it seemed normal, then I'd get slammed again. That might be why you're only noticing it now. Have you had haemoglobin levels checks?

Hepsub · « **Reply #16 on:** March 22, 2016, 02:16:50 pm »

Just had them checked today at my week 8 visit.. thanks again for your responses..

Hepsub · « **Reply #17 on:** April 08, 2016, 06:28:35 am »

So, its week 9 for me and the insomnia is pretty bad despite what I've done to mitigate it... Ive lost weight ( around 150 now @ 178 cm or 5'10 a and thats about as skinny as i could possibly be with my frame) although this could be attributed to my lack of appetite, occasional nausea, my heart is working overdrive and is often the agent of waking to compound whatever is driving insomnia.. My circulation has been shitty, I've been dizzy, foggy, headachy, muscle achey and generally fatigued.. Long story short, I'm experiencing the gamut of symptoms and while they are manageable.. they are pretty fn annoying. On the brighter side of things, I am undetected so it makes all this bearable but i think the number, frequency and intensity of my symptoms may lend some credence to a posters notion that weight (or lack there of) relative to riba does may have an impact on incidence. Lastly, my cognition is improving, but is clouded by the malaise created by the meds so i guess i won't taste true clarity until weeks after treatment... Thank you all (Philadelphia most notably) for your responses and interest.. It helped me during a time of need.. Hope all is well.

Hepsub · « **Reply #18 on:** April 08, 2016, 06:29:42 am »

p.s.

As you suggested, i was anemic sat week 8 blood draw.

Philadelphia · « **Reply #19 on:** April 08, 2016, 07:27:14 am »

No surprise! I had all your symptoms and the only thing that fixed it was a reduction in my riba dosage. Because my bilirubin shot up to 150-ish they dropped my dose to 400mg instead of 1000. One in the morning, one in the evening.

It's not the recommended path to a cure but I was lucky and it worked for me. I achieved svr24 last month.

My haemoglobin is still only 119 24 weeks post treatment so it's been a slow progress to get it better.

You are UND - that's the best news isn't it. Everything else might be crap but that's worth holding on to.

Hepsub · « **Reply #20 on:** April 08, 2016, 12:55:50 pm »

yea ill gladly suffer for a few more weeks to stay undetected or at least better my chances of doing so... that sux about your still under range hemoglobin levels... are you feeling better now, or still dealing with residual issues from treatment?

Philadelphia · « **Reply #21 on:** April 15, 2016, 08:22:22 pm »

Sorry totally missed this!

My HB of 119 puts me in the normal range according to my lab values. The things that are still wrong with me after treatment are not things I notice. For eg my platelet count is pretty crap, but I don't notice it. I don't bruise or bleed any more than what I assume normal is.

Really, my INR and platelets are the only two things that are still screwy.

I feel good. Honestly.

Hepsub · « **Reply #22 on:** April 16, 2016, 02:20:19 pm »

Thanks a lot! Only 6 more days on tx!

FutureThinker · « **Reply #23 on:** April 16, 2016, 04:00:48 pm »

Hepsub, just read your lst post here and those serial VL numbers are totally amazing!!!! Thanks for posting, and best of luck on the remainder of your treatment, FT

Philadelphia · « **Reply #24 on:** April 16, 2016, 05:34:31 pm »

6 more days? No sweat, it's nearly over! You can ride this thing out for 6 more days.

MsBrat58 · « **Reply #25 on:** April 18, 2016, 02:54:00 am »

Omg, i had the same exact problem. Fast heart rate that i could hear in my chest and ears. I also had severe anema from Rib. They reduced Rib and had to take me off Rib 9 weeks into treatment. I have been off treatment for 7 weeks. May 28th is my last check for svr. I am happy i read your article because no one understood or knew what my symptoms were. Yeah!
In the Turqoise study people did treatment without Rib and faired well. Thanks again fot sharing i feel relieved. Luck and hang in there.

sapphire101 · « **Reply #26 on:** April 18, 2016, 11:31:35 pm »

Hey HepSub I am late on this thread and I am in shock about your hourly numbers. What a mind blower! This stuff is so powerful that is great to know.

Also great to know that the clinical trial search tenacity can truly pay off. Congratulations and stay strong to get through those biopsies.

Hepsub · « **Reply #27 on:** April 20, 2016, 10:30:12 pm »

So, i i just finished my course of treatment, took my last dose 2 nights ago and had my 12 week doc appointment yesterday morning. During the blood draw i got very light headed and had a minor bout of anxiety as a result. The doctor urged me not to worry and assured me that another trial would begin in the fall that i would be enrolled in if it failed, with 2nd generation DAAV's. Said drugs he said, showed promising results but he seemed to be too descriptive about it for my liking considering i just completed treatment and was undetected. I called him today and he reassured me there was nothing to suggest from the labs that i would be likely to relapse, but i tend to over analyze things and am thus a bit worried. Of course, had a very stressful day today and as soon as i came home to relax, i noticed an itch on my arm that spread to my back and now legs. Im trying to live in the present and not freak out, but the riba really rocked me and am in one of the most vulnerable places I've been in my life (thats saying a lot). The fog of treatment felt like it was starting to lift even after just 1.5 days, but returned with a vengeance at night. Im aware this is normal, and it will take time to regenerate my full energy capacity, but that, combined with the stress and the itching has rendered me a bit of a wreck. Anyone have similar experiences? BTW, i didnt have itching during treatment... Ive already started to exercise, and will increase the vigor to the extent my heart (hemoglobin) allows it. THANKS
PZ

MsBrat58 · « **Reply #28 on:** April 21, 2016, 03:17:31 am »

I have the light headed issues and the itch. It does come and go but it happens less and less. This is our temporary situation. We will be cured and feel better in the long haul. Hang i there. We all worry too. Soon it will have quality of life and never worry again about hep c.

HazelAustralia · « **Reply #29 on:** April 21, 2016, 04:39:01 am »

Hi Hepsub,
I am still itchy and very sun-sensitive and have some funny skin reactions a while after finishing treatment. It took me a few days until my head felt clearer. You were undetected - that's really great news. The ribaviron was hard for me too - I really felt helpless and a bit scared sometimes, but if it helped clear the virus I am so grateful. Stay calm and try to stay positive, you've been through a lot.
best wishes
Hazel

Hepsub · « **Reply #30 on:** April 21, 2016, 09:01:51 am »

Thanks for the support guys, i cant express my gratitude adequately for your stories/ advice. I live in a conservative town in New York so i havent felt comortable sharing with many people, and most have reacted negatively, unsupporting, even bristly. People here, as in most places ive been (korea, eastern europe, israel etc) still hold ttightly to the stigma that there is no workable "curr" and that the notion of Hep c is so repulsive, they have changed their demeanor towards me completely. It has only
Amplified my anoxety and left me searching for undiscerning support, so finding it on a forum of all places, as been a welcome surprise. I realize the meds, particularly riba, especially considering my constitution (thin) exact their toll and that its only
Been a damn couple of days after months on tx so ill try to keep my hesd up and relish thr idea that i (have put all my chips (savings) in the pot and will be in the bahamas, granted for a makeshift detox program (am still on 1.4 mg of suboxone) ) have set myself up for success as much as one could considering my circumstances. So i will try to trust the science, my plan and dedication snd your highly valued advice and treck on. Thanks again
pz

Philadelphia · « **Reply #31 on:** April 21, 2016, 10:20:31 am »

It's gong to take a while for everything to leave your system, and then a while longer for your body to stabilise. It will happen. It might be slower than you like but it will happen.

You're finished! There's nothing more you can do other than take care of yourself. Don't forget that bit. It's important.

FutureThinker · « **Reply #32 on:** April 21, 2016, 01:37:36 pm »

Philly, good advice as always.

Hepsub, I'd like to address your subject of stigma. I am not happy to hear about your experiences, and can totally relate. I can count on 1 hand how many people I've shared that I have HCV, and none are family members. We are in a unique situation where we need support, but it is far and few between the people who willingly provide it. All of us here are uniquely positioned to understand that!! So I am so glad you've found this forum, as I've found it to be a life line on my journey to SVR. FT

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Author Topic: Trial participant, vierkapak+weight based riba (Read 14562 times)