Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Red Hen on January 17, 2015, 07:02:41 pm
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It is now 3 days since my last hep c pills. As far as I can tell, no one else here has done Viekira, though many are familiar with ribavirin. This is kind of dumb, but I really thought that right after taking this treatment I would lose the symptoms I had during it. No. I was told by my hep c nurse that recovery from the drugs can take a month or two. I'm still itching and getting weird skin rashes that come and go. Have to take an OTC benadryl to stop the itching enough to sleep at night. Also experienced twinges of pain on my right side, which I never had before. I guess it really does take a while to get this stuff out of your system. I mean the treatment, not the disease. Although, that, too. I was told not to try to do a "liver cleanse" or to drink more water than my usual 1/2 gallon a day but to let the medications dissipate slowly. Sigh.
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Yep, it has been two months now for me and I still have skin issues. Itching now is intermittent and not that bad, but, the on a off little bumps and rash type irritations are annoying. It is like I have become more sensitive to everything.
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Thanks, Tess. I guess the sovaldi and ribavirin is similar to the viekira and ribavirin. These are some strong drugs. Just hope they finish off the hep c!
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Hi everyone
Thank you for sharing your journeys with treatment. Hope you all reach SVR for good! I heard that about dissipating in your system. I've had lingering side effects, but not the itching. Sorry you all have had to deal with that. I go Tues for 4 week post treatment test. Nerve wracking....best wishes Sunrise
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Good luck on your test Sunrise
Like my doc says "think negative"
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:) I love that Lynn K!
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Good Luck, Sunrise! I'm thinking negative. ;)
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Thanks all! I will keep that in mind. I'm positive I'm negative! You folks are awsome! Much love...Sunrise
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Hi Redhen,
A good rule of thumb when you complete treatment with RIBV: For every month on treatment, it will take 1-2 months for the side effects to completely resolve. If you did 3 months of treatment, the side effects can linger for 3-6 months.
Best wishes, Mike
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Hi, Mike. Three to six months! That's interesting. Nobody else told me that. I'll have to be patient. All anybody ever told me was how great I would feel once the hep c was gone. I did not have any symptoms from hep c that I could tell but the ribavirin hit me like a ton of bricks. Actually, today has been a very good day for me. Energy is up and not much itching. It is usually worse at night. All through this I've had good days and bad days. My guess is that eventually the good days will outnumber the bad...
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Hi Red Hen,
You should start feeling better, day by day, week by week; and in no time - back to better than normal!
Best wishes, Mike
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Same for thebSovaldi and Olysio Mike?
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Thanks, Mike. I think someone may have mentioned "baby steps". :)
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That's a great question, Sunrise,
I'm not sure with S/O - my experience and knowledge-base relates directly to RIBV and INTF (I completed a 48 week course of RIBV+INTF in 2001 and 12 week course of SOL+RIBV+INTF in 2014).
I'd imagine, however, the withdrawal from S/O is little shorter given the 1/2 life of AADs and the milder side effects.
Best wishes, Mike
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Thank you Mike
I am slowly getting back. I still have severe joint pain in ankles. Something that developed during tx. The anxiety is slowly lightening up. Really curious about 4 wk post vl. If its UD I will do the happy dance. Than 8 more weeks! Things are moving along faster than I expected! Again to all the warriors, THANK YOU...Sunrise
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Did anyone here find that the ribavirin messed with their stomach……….my stomach has not been the same since. It hit my stomach the last few weeks on the meds. After that it subsided, then returned and it is up and down now. I am having issues with it now again especially in the evening. Ugh, each time it subsides it is for longer, but, same when it comes back.
I also on another forum was told 6 months for the body to completely purge the ribavirin. And some of the people on that forum said it took them even longer…….up to a year to feel as good as they do now. Oh well, at least I am UD, right? Thats is how I look at it…………we are more than half way there now.
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Tess
Are you taking with food per the instructions?
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One of the side effects of Ribavirin cause is a metallic, peppery taste in the mouth. I noticed this when I was taking it.
Best wishes, Mike
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So Tess
You've been off treatment since November right. You say your stomach started kickin after or during treatment? Have you tried eating different thing like alkaline foods? Cantelope avocado chia seeds coconut milk. Really helps. Also probiotics, natural in yogurt or kefir and fermented food like kim chee or pickles, pickled anything. Just watch the sodium. Sorry you are having those issues. My problem is I cant stop eating! Side effect of S/O tx. Hope you feel better....Sunrise
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Issues began last 2 weeks on treatment and then on and off after. I eat extremely healthy. Pickled stuff makes it worse, I eat avocados all the time and cook veggies all the time. I do not eat beef or pork at all…………mostly fish, beans and some chicken (has to be free range and humanely raised) I am one of those folk - lol, same for the eggs. When I got the bad heartburns the last week of treatment I think it hurt my throat and it seems to keep coming back. Now I have stepped up the yogurt and eating what is considered reflux friendly foods……..whah! no spices, off coffee for a while and chocolate -whah again ! It seems to be helping this time around. Might be the weather here in Tennessee causing sinus issues also. Like I said, I seem to be more sensitive to things now as I was not before treatment. Dr said treatment would make me feel sicker for a time, but worth it in long run…...
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So you are taking just after you eat so there is food in your stomach at the same time?
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Lynn, I finished sov/riba November 15th………..always took meds with food. Had no issues with stomach until last two weeks of treatment and it was always in the evening.
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Ok I will be starting riba on Tuesday kinda nervous about it will be taking Riba with Harvoni fir 15 weeks which will be 24 weeks of Harvoni accompanied by Riba for the last 15 weeks of treatment.
Hope you feel better. How did your hemoglobin levels hold up last time I took riba it was with interferon and my levels dropped very low
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Hi, all. Hope those stomach problems clear up! When I first started taking Viekira and ribavirin, I had some nausea in the morning after breakfast and pills. Always took pills with food and water. Coffee actually made me feel better. Tess, I'm like you so far as what I eat, except I do occasionally eat grass-fed, free-range, local beef. La-di-da. Prices being what they are, you can bet I don't eat it often! So far, not experiencing digestive issues since stopping pills. Oh. One thing I noticed was not feeling hungry. That was not unpleasant, though.
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Hi Lynn
I know your nervous about getting riba, but try not to worry. Lets hope you don't have many sides. Just know you are killing the virus. Stay warm.... blessings Sunrise
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Lynn, My hemo only went down .5 to 1 point below normal and went back up after treatment - was checked 5 weeks after treatment……same for platelets etc. Liver function never went out of normal range.
After first month of treatments when it did go down I started drinking the Atkins protein shakes which have low vitamin A (which can be toxic to liver if too much) and only 1 gram sugar. The mocha/coffee one is only one that tastes good to me - lol I only drank them on days I did not eat as well or much protein. This stomach thing is better today and I will just have to baby myself and let the body heal I guess.
My age may be a factor in recouping from the meds, I am sure younger people will do it faster.
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Upon reading the recent posts here, I realize how fortunate I am. You are all so brave with all of your suffering and sacrifice and I am honored to be part of this forum and get to know you. You all inspire me and I thank you for that.
I'll be thinking of you. Keep up the fight with your positive attitudes and you will be OK. This monster will not win!
Katie
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Hi Tess
When I treated with Interferon Riba I believe my hemoglobin went down to 8 or 10 before they started me on epotin shots. I guess now they will just dose reduce.
What are your platelets like? Mine are between 80 and 90 due to portal hypertension and cirrhosis.
I will be 57 in March I am guessing you are about 44 based on your name. So I guess I will see how long it take me to come back once done with the Ribavirin.
First Riba tomorrow.
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lol, no Lynn, 1971 is not my birthdate, but, when I got hepatitis. I am older than you at 63. During treatment my HGB went down to 11.5. Last blood work showed it at 14.1. Is the MCV the platelets, if so, it was 90.5 last checked. Lab shows normal as between 80.0-100.0.
All my blood work is in normal range last checked. My ALT and Alk Phos were slightly lower than normal though.
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Actually MCV is mean corpuscular volume, or mean cell volume (MCV), is a measure of the average volume of a red blood corpuscle (or red blood cell)
here is my most recent lab work (13 January) for CBC or complete blood count:
component range my result
WBC 3.4 - 10.8 th/mm 4.7
RBC 3.77 - 5.28 mil/mm3 4.35
HGB 11.1 - 15.9 g/dL 13.7
HCT 34.0 - 46.6 % 40.5
MCV 79 - 97 fL 93
MCH 26.6 - 33.0 pg 31.5
MCHC 31.5 - 35.7 g/dL 33.8
RDW 12.3 - 15.4 % 13.7
PLATELET CT 150 - 379 x10E3/uL 90
Currently my liver functions are all normal only my platelet count is below normal
different labs may have different reference ranges.
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Hi, Tess and Lynn K. I'm amazed at how well you keep track of all the lab reports! I'm 61, btw. Lynn K, I'm confused about whether 1a people have to take ribavirin with Harvoni. It is now one week since my last pills (Viekira and ribavirin). Worst symptom is still itching and rashes. I do feel more energetic but we also had a brief warm spell which might have helped.
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I get my lab reports online on an app called my chart.
Harvoni is for 8, 12 or 24 weeks with an option of Harvoni with Ribavirin for 12 weeks instead of 24 just Harvoni for patients with cirrhosis. But in general Harvoni is only taken by itself without Ribavirin. As far as I know Harvoni is only approved for GT 1 right now but they are looking at adding other genotypes I forget which at the moment.
I started Harvoni for 24 weeks but based on my condition and treatment history I discussed with my doctor about adding the Riba based on some things had read and a video round table discussion by some of the experts recorded shortly after the AASLD conference on several subjects including patients like me. So anyway my doctor agreed that it is a good idea to add riba to my treatment to give my my best chance if a cure this time around.
As a patient with cirrhosis for 7 years, multiple time null responder and a Sov Oly relapse I need all the help I can get.
My treatment is kind of a hybrid at this point. Nine weeks of Harvoni and 15 weeks Harvoni Ribavirin if this doesn't cure me well I guess I don't want to think about the alternative right now.
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Thanks, Lynn. I am hoping this time will be the charm. Stay brave! You are amazing.
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Hi Lynn
Hope this note finds you doing well with your new add of riba. How are you feeling? I know its just the 2nd day, but I was concerned. Hope you're doing ok.Blessings Sunrise
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Hi Sunrise
Thanks for asking.
So far nothing to report.I will be checking CBC next Tuesday so we will see if there any any significant changes going on
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Okay lynn, I see PLT at bottom of list and I am assuming that it the Platlet, it shows 275;
WBC 5.4
RBC 4.74
HGB 14.1
HCT 42.9
MCV 90.5
MCH 29.8
MCHC 32.9
RDW 12.6
RDW-SD 39.4
PLT 275
MPV 9.7
Listed as CBC with PLT
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I also noted that the ranges of your lab are all a little lower than from mine. Not a big difference in any of them though……
Is it the cirrhosis that makes platelets lower? I have never had a biopsy, only extensive blood work (fibrospects etc..) and ultrasound of liver. Also it was looked at when I had my gall bladder removed a few years ago. Even though my blood work looks good I still feel crummy on and off, but, the duration is shorter and shorter now and happening less and less. I am optimistic and considering going back to work part time this spring. I retired a few years sooner than originally planned due to all this.
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Hi Tess
Yes low platelet count is very common in cirrhosis especially if you have had it long enough to develop portal hypertension (high blood pressure in the livers portal vein). This results in several things, it causes the veins in the esophagus to become enlarged due to the increased pressure. I developed esophageal varicies of grade 3 (the highest) so I had them banded. It also causes the spleen to enlarge resulting in the spleen sequestering (holding onto) too many platelets lowering platelet levels. 150 is the normal low with below 50 being concerning to doctors and below 10 they will probable give the patient a transfusion to reduce the possibility of a bleed but this is only a temporary fix.
Basically having a low platelet count is a very good indication of cirrhosis.
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Just wanted to mention that I'm having some days where my energy levels are pretty good. Shoveling snow last 2 days and keeping up with what needs to be done in general. Still having itchy rashes and taking benadryl at night to sleep. Trying to drink plenty of water. One thing I've noticed is that I'm in a good mood more often. My husband has also noticed it. I feel more open to spontaneous socializing with friends and feel less anxious. Baby steps.
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Here I am, replying to my own post. Almost 4 weeks since last Viekira pak and ribavirin. My big 4 week blood draw is next Thursday. I'm nervous about all the follow up. Wondering what will happen. Meanwhile, I am slowly feeling better. The itching has calmed down a lot. There were 3 nights in a row when I did not need a benedryl. My energy level is feeling more consistent. Whatever the outcome may be it is sure nice not to be taking all those pills! :D
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I hear ya Red Hen !! It is a slow but sure recovery that our bodies go through. I still now and then take a small step back with very small minor skin issues now. Energy and concentration definitely improving all the time - amazes me sometimes.
I wish these meds were around sooner as I could have continued to work longer if they had.
You will be fine………..you have made it through the worst and now the rewards are on the horizon.
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Thanks, Tess. I know you are also recovering from your treatment and it helps that I'm not alone. Glad to hear your energy and concentration are improving. It is kind of amazing! Maybe you will go back to work part-time this spring. Here's to all of us, that we continue to feel better.
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Hi everyone,
New to this site, I've been DX with Hep C Genotype 4 (rare case in North America) a few years ago with composted cirrhosis with wacky platelet findings (110). Just did blood test and Fibroscan and Ultrasound next week. Anyhow, my doc has enrolled me into this trial NCT02265237. The tentative date for start of this Abbvie trial is early March (if all goes well I'm assuming). Ombitasvir/ABT-450/Ritonavir (Vieira Pak) co-administered With Ribavirin for 12 weeks will be the regiment to follow.
From what I'm reading Rib can take a real toll on many people. I'm indecisive. Can anyone who has tried Rib with their treatment summarize what to expect from start to finish (I know everyone is different). My current symptoms is mainly Fatigue and issue with falling asleep sometime getting up in the morning is very hard.
Anyhow, I'm really enjoying the support all of you are providing to each other and am looking forward to contribute. Once I get my new results I will post them for your feedback.
Regards, Michael
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Hello, Michael. Many here have taken ribavirin. It isn't an easy drug to adjust to. For me, 12 weeks Viekira pak and ribavirin , seemed to take forever! My worst problem from about the 3rd day on was intense itching, hives and rashes. I'm still experiencing this, to a lesser degree, 3 weeks after my last pills. Luckily, I could take a benadryl at night which was a godsend. I felt very tired much of the time and irritable. Worthwhile? Sure, if we can beat this disease! I was actually in better shape than I had imagined I would be. The stress from being afraid of treatment was worse than the treatment. Just hope it works!
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Hi Michael welcome
One of the symptoms of cirrhosis can be the development of portal hypertension which will cause the spleen to enlarge. When this happens the spleen begins sequestering (holding onto) too many platelets lowering platelet levels. Many with cirrhosis have low platelet counts. Mine are generally in the 80 to 90 range. I was diagnosed with cirrhosis in Jan 2008 on liver biopsy. I am still considered to be compensated cirrhosis.
When I was diagnosed with cirrhosis the first things I did was get vaccinated against Hep A and Hep B. I was also given the pneumonia vaccine normally given after age 65. They also did an upper endoscopy to check for esophageal varicies (kinda like varicose veins in your throat). These can be another consequence of portal hypertension.
I get and abdominal ultrasound every 6 months and an AFP test to check for the possibility of liver cancer as we as at a greater rich of developing HCC.
I hope you have received similar care and are under the regular care of a hepatologist associated with a liver transplant center. Not just while participating in this trial. They are best equipped to care for patients like us with advanced liver disease.
I am treating with Harvoni and Ribavirin. I initially started on just Harvoni but my doctor decided to add ribavirin due to my treatment history. So my first 9 weeks were just Harvoni and the following 15 weeks will be Harvoni and Ribavirin.
I am just tired on treatment with my first week on Riba CBC indicating my HGB, RBC and HCT went down but still in normal range still waiting on my week 2 results to see if I am still OK as far as anemia goes. I have no other side effects from the Riba. Previously when I treated with Interferon and Ribavirin I did become anemic and was treated with epotin to raise my counts. I guess this time they will dose reduce if needed.
With cirrhosis you have significant liver disease. For me personally I would recommend you treat before you suffer further liver damage and risk decompensation resulting in the need for a liver transplant. If you do eradicate the virus you liver will then have an opportunity to heal and reduce the risk of decompensation and HCC.
Best of luck to you
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Hello Lynn,
Thanks much for the feedback, yes I have a very good hepatologist and I'm up for a second Ultraosund and Fibroscan next week. My platelet count from my last blood work was 110. I'm 54 but look and feel like late 30s beside the tiredness :). One aspect of this whole experience that helps me is that I'm very positive and do not think the worst of anything. My doc wants me to get the endoscopy procedure to check for varicies and I'm rebooting it since I missed my appointment last month. Does it hurt is it painful? Anyhow, I'll get some results by next week and will to share them with all of you.
I think I can take the Rib since I feel strong enough for it. The prospect of it just creates some level of anxiety at times. Hopefully I haven't reached decompensated state yet since my last Ultrasound last year.
Regards, Michael
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Hi Michael
From what I understand decompensation is defined by having what is called a decompensting event such as developing ascities, Hepatic encephalopathy or bleeding varicies. I had grade 3 varicies in 2012 that I had 4 sessions of banding to resolve so basically I has 5 upper endoscopies in 5 months that year. The a 6 month check followed by annual since then. Having another one this Friday.
For me they haven't been a big deal they give you an IV, meds on board, and I don't remember a thing. As long as you have a driver itis a fairly simple procedure.
Even though I have lower leg swelling (pitting edema) and a small amount of ascities that I treat with a diuretic Spironolactone and had the grade 3 varicies my doctor considers me to be on the border between compensated and decompensated right now.
Always good to have a positive attitude to get us through rough times, but we also have to be realistic that we have some things going on that require our attention don't have to get depressed about it just gotta do what needs to be done and "get er dun"
Having a good attitude makes everything easier to get through!
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Hi Lynn,
I was just reading abut the procedure and it seems to be quite safe and painless. I do not have any swelling or ascites as of now. Just really tired most of the time but find that when I work out or go pick myself up it somewhat or totally goes away. The worst part for me is waking up and getting myself out of bed. Once I do I'm ok. I do have a few minimal red spots on my shoulders and neck but they are very small and not too many (Spider nevi) and somewhat pinkish red palms which dissipates at times. Otherwise I'm ok. I fond that Vitamin D and B12 along with ALA really helps. My doc told me to start eating more red meat and that it would perhaps help with the platelets. I hardly eat red meat so its a change.
My guess is that I got hep c back in early 80s from a blood transfusion and they are actually in the process of doing a 'trace back'. Its been over a year and they are still to done. I found out in 2011 from a routine blood check I contracted Hep C. I've been waiting for these new super drugs treatments since then.
It will help me to be part of this forum community.
Regards, Michael
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I have spider nevi and thousands of petechie (little red dots) everywhere.
I learned I have hep c in 1990 but probably became infected in 1978 or 1979. I treated way back when the only treatment was 3 shots a week on interferon (mono therapy) then a couple of more tries with interferon and riba and interferon riba and a trial drug Null responder to treatment. So I have been waiting since 2003 for a new treatment.
I did Sovaldi Olysio last spring and relapsed so now on 24 weeks of harvoni treatment #5 Sure hoping this one is the cure.
Best to you
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How long after the sovaldi and olysio treatment did you relapse Lynn ? I try to be a positive thinker all the time, but, the relapse thing still lurks in the back of my mind at this point.
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They tested me at 12 weeks post. I got my liver profile back first and it showed one of my results ALT had returned to above normal so I kind of had a pre warning things might not be going well.
I had no other test after treatment just the 12 week.
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My gastro was not to test until 12 weeks either, but, I got my primary to do so after first month - ha…………I test again Feb 27, which will be considered the 12 week even though it will actually be 13 weeks. Seems Ghilead gave that date when treatment started that it is full 3 calendar months since treatment start date. Oh well, it is just a waiting game for me at this point. Then there will be the 6 month one again even if this one comes back good - not sure if he meant 6 months after this one.
LFTs have been in the normal range for me for decades so I cannot rely on those when done as to treatment, but, they have gone to the lowest number in the normal range after treatment, even below immediately following.
I will say that I DO feel different, physically and mentally, and surely this is a big change for my body since I have had hcv since early 70s.
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Tess, Lynn, Michael and all who have been supportive and helpful to me on this Forum, I want to say "good-by and good luck". I feel that my personal experience is irrelevant here and I have nothing to contribute to discussions other than my sincere best wishes. Apparently, Viekira pak and options for treatment other than Harvoni are not worth mentioning here. I am sorry if I have offended or mislead anyone by my posts which are only based on my personal experience.
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Hi Ren,
Your words of support are and would be indispensable as always. I'll keep you and this site posted as my treatment and overall results.
Regards, Michael
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Sorry you are leaving Red Hen. I find ALL updates and experiences on whatever the treatment to be useful. None of us know if we will need to try other meds so yes, they are relevant.
Wishing you the best of the best and hope to hear from you in the future.
Katie
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Hi Red Hen
We all here share the same jouyney I feel any insight you have is invaluable for the others who are not permitted Harvoni by their insurance which are many and I am sure we will see more of them as time goes on and we Harvoni people don't have your knowledge. Also most on Harvoni are not taking Riba and that in itself is important information for those that do have take Riba.
In other words I hate to see you leave us but if you must I wish you a fond farewell fellow traveler and dragon warrior may we all be cured someday
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Red Hen, sorry to hear you are leaving. I have enjoyed reading the information and advice you have shared here and please be sure to know, your advice matters. I for one would like to see you stay and help us all to know more about HCV and your treatment experiences.
Best wishes,
AL
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@redhen, what they said +1, we are all in this together one way or another.
kate
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I totally agree with all here……..we are in this together even if we have taken a different protocol of meds. The battle is not completely over post treatment for many of us. This is just the last phase of a long battle for me and I look forward to any and all input.
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Got the result from Ultrasound and my Hep doc tells me there's a very small spot they'd like to check with an CT Scan and blood test. Anxiety is creeping in. So, we have to wait for the treatment to start until we get those results.
Regards, Michael
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I stopped Viekira and Ribavrin on 6/24. Still getting headaches and stomach upsets.
Has anyone remained HCV V/L free since finishing this treatment.
Thanks
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I have 4 days left and I'm done. I've been UNDETECTED since week 3 of treatment. the chances of it coming back are next to none (1-2%) unless one gets exposed to it again through high risk behaviours.
Did you complete treatment?
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Baby we have a growing group of us Viekirans who have gone undetectable through treatment and to end of treatment.
Red Hen started earlier on a clinical trial with both viekira pak and ribavirin and is SVR cleared and is my inspiration and as far as I know, the first to speak on this medication regimen on this forum.
I too would love to hear from any more out there who have achieved 12 week or longer SVR. That is the holy grail!
By the way no more side effects for me- I feel really good now that I am more than eight weeks post treatment end. Were you able to complete your full treatment?