Hep C Discussion Forum

doodaman · Member

RE: Taking Harvoni, on Day 27, Got Questions

Canuck · Guru

Doodaman,

Welcome from me. I am impressed how clearly and thoroughly you presented your background info and questions. Allowed the fellows to answer you well. Good you say your fibrosis level is low, and a bonus that your course is short .

Re: Your question #5 - I can only offer up my opinion or my own experiences with pruritis.

Generally, over my 40 year+ period of having undiagnosed hepc, I did, in retrospect, have periods of pruritis from time to time which I (now) do believe was because I was unknowingly packing chronic hepc. I used to chalk it up to other reasons, a "curiosity", excusing it as some weird allergy, a sensitivity to something, contact dermatisis, perhaps scalp seborrhea could have been to blame (for a short time), but there was never a really appropriate reasonable explanation for these bouts of pruritis such as an accompanying rash or hives to bear out an "allergy"theory - just itching - no connected rhyme or reason to it, and it was very on and off again, mostly off, in the mid decades. It occurred, mostly, on the scalp back then.

This last decade (still undiagnosed) I developed very specific intensely pruritic "hot spots" mostly, these were longer lasting, deeper, deep-seated, sometimes annoyingly persisting for weeks or months. These deep, intensely pruritic spots were occurring on my back, usually one at at time, and mid torso. These intense spots, would persist, could NOT be relieved, they would lessen on their own, disappear, only to reoccur. I cannot say I ever had too much trouble with any over-all "generalized" pruritis per say (except for 40 plus years ago when I had first contracted hepc, then, for a short time during the acute phase I did have generalized pruritis and a short period of a light torso rash).

These last few years (prior to my c finally being diagnosed), my scalp once again became intermittently smitten with bouts of unjustifiable pruritis, at times light, at times intense, once during an intensely itchy few days, I kept looking for head lice!! I even went and had public health check my scalp, but of course, there were no lice. I am convinced (now), in retrospect, almost all of these weird pruritic bouts over many decades were as a result of, and part and parcel of the chronic hep c. It waxed and waned. Hot spots of back pruritis would flare from time to time.

Currently - Since diagnosis of my hepc in 2015, it is the scalp pruritis that trumped as persistant, mostly one central frontal area of my scalp. I was thinking a high bilirubin may be found with pruritis, but, since 2015, my bilirubin has not shown to be very out of wack. Through my c treatment the pruritis has not yet abated, but it is very mild, and I recently found quite a bit of relief obtained with Rx topical betemethasone.

So, there ya go - probably waaaay more than you ever wanted to know about another persons's pruritis - but ... I just thought I would recount my experience for what it's worth - my experience has entrenched my thinking in my belief that my chronic hepc was and is the cause of my pruritis. I will be very happy to show pruritis the door, right along with the c! I hope your c cure will end your pruritis as well. Best regards, C.

doodaman · Member

Thanks for the quick replies from Tig56, Linuxter, wmlj1960 & JimmyK.

I am feeling the love,

Alohas,

Dan

wink

JimmyK · Guru

Yup and welcome to the Train Ride.

Treatment experience	Severe liver damage (cirrhosis)	Treatment length
Never been treated (treatment naïve)	No	8* to 12 weeks
Never been treated (treatment naïve)	Yes	12 weeks
Treatment experienced (with a peg-interferon combination)	No	12 weeks
Treatment experienced (with a peg-interferon combination)	Yes	24 weeks

*People who have never been treated before who do not have cirrhosis and who have a Hep C viral load below 6 million IU/mL may be eligible for eight weeks of treatment. Speak to your doctor about this.

The key phrase is "..may be eligible.." From what you have mentioned regarding F Levels and all, 8 weeks is appropriate.

Welcome to The Family!

One thing not spoken of enough is folks that take Omeprazol need to be very careful on how to dose. Also use of antacids. Sometimes because they are OTC folks don't think to report using them.

-- Edited by JimmyK on Saturday 23rd of April 2016 05:54:45 PM

-- Edited by JimmyK on Saturday 23rd of April 2016 05:55:13 PM

wmlj1960 · Moderator

Hi Dan and welcome.
Tig answered all your questions but I wanted to add my experience with question #4. I experienced terrible brain fog during a previous treatment with 24 weeks Sovaldi / Ribavirin (mainly due to Ribavirin) and it took over 6 months for my memory to get back near normal. But my last treatment with 24 weeks Harvoni was much easier on me concerning brain fog etc. What little I did have has made a huge improvement since I finished Harvoni, which was this past January 7. I have since tested negative and am now considered SVR, the goal for us all. And my mind continues to clear more with each day. As Tig said, each persons recovery rate is different but I would also say "count on improvement".
I'm glad you found this forum. It has been very, very helpful to me and many of our other members. You seem to be informed already but there's plenty more info available here as well and some great support too.
Some of the abbreviations we use around here, such as in our signatures, are unique to this forum, so for more information about those click on this link.

How To Create Your Signature / Forum Abbreviation Definitions

There will be other members along later to welcome you as well. So make yourself at home and enjoy the ride to a Hep C free future. smile

EDIT: Linuxter, you type too fast biggrin

-- Edited by wmlj1960 on Saturday 23rd of April 2016 05:33:57 PM

Linuxter · Guru

Hi Dan,

Welcome to the forum, you'll like it here ... lots of great folks and tons of excellent information available.

In case you need it, HERE's a link to many of the various abbreviations used on the website.

1) I could be wrong but I think the general guidelines (and least with my insurance) is that if your Viral Load is less than 6 million (8 weeks of Tx is prescribed). More than 6 million (12 weeks) but this also depends on liver condition and probably other factors. I'm sure others will chime in and give you some better information about that.

2) Checks for VL all sound pretty standard.

3) Yes, once you have HCV Antibodies you will always have them, even WHEN you cure (not if, and not to worry, these days with the new DAA's you WILL be cured).

4) Most discussions I've read regarding "Brain Fog" are regarding side effects to some of the older treatment regimens, (not HCV symptoms). I had HCV for 40+ years and never knew I had it so I really didn't have any symptoms that I knew of.

5) Doubt the skin thing is related but that could depend on condition of the liver, I suppose.

6) DO Read All Literature that comes with your medications. DO drink 3-4 liters of water per day ... water really helps the Tx process and pretty much alleviates any side effects for Harvoni and DO Stay Compliant (Take meds exactly as prescribed). DON'T Drink Any Alcohol or use Any Drugs other than what your Doctor knows about during Tx. DON'T take any Suppliments or new drugs without first consulting your Doctor.

Like I said, other will chime in here, Welcome to the Forum, We're glad you're here!

Dave

Not to worry, You've got this ... the Harvoni should be a nice smooth Tx and we'll be right here along the way. smile

-- Edited by Linuxter on Saturday 23rd of April 2016 05:19:11 PM

Tig · Admin

Hi Dan,

Welcome to the forum! You found a great place with equally good people. We even have a few jokers around here, lol, watch out! We have fun and share knowledge and all the support you can stand.

Let me answer your questions in order:

1. Yes, if your viral load is less than 6 million and you haven't treated previously, 8 weeks is it. Lower fibrosis levels are a plus considering the shortened course.

2. Viral loads are only required pre treatment and 12 weeks post treatment. Anything in between are nice for a morale boost, but not necessary. Some people don't go undetected until they are finished, but that's not common.

3. Yes, you will forever be positive for the antibodies.

4. Brain fog, memory and many of the extra hepatic manifestations tend to improve. They have for most of us. But there may be some things that linger, arthritis in my case. We are all different, so your recovery depends solely on you. I would expect many improvements though. I would count on it!

5. Itching is a common complaint With HCV. Some of these medications also cause it. Antihistamines and some lotions can reduce this with your doctor's approval.

6. Don't take any supplementation during treatment or for the 12 weeks afterwards. They can cause altered test results, and/or not mix well with the treatment drugs. Not too many do's and dont's, the best guide is the manufacturers monograph (package insert) it lists the drugs that have adverse reactions with Harvoni. Particular attention has to be paid to the use of antacids and drugs like Nexium or Prilosec.

If you have additional questions, don't hesitate to ask! I'm glad you're here. On thing I advise you to do that will reduce the fatigue and headaches is to drink 3-4 liters of water everyday! Without fail! Hydration is very important on this medication.

You mentioned your fibrosis as F 1 and F 1/2. They routinely list it in increments like, F1, F1/2, F2, F2/3, F3, F3/4 and F4. F3 is advanced and F4 is considered cirrhosis. Each is progressively higher than the previous. These numbers are based on the Metavir Fibrosis Stage table.

Good luck!

doodaman · Member

Hi All,

I really appreciate this forum exits. I started taking Harvoni 27 days ago and got a few questions. FYI, i have had very few symptoms from the medicine. Sometimes i fatique if i take it on an empty stomach or earlier in the day and this lasts for maybe 1-2 hours. Sometimes i get minor headaches but very infrequently. So symptoms has been a non-event with this medicine it .

To give you some background, i have had the Hep C virus for 30 years. I understand that the Marker for HCV was not found until 1993 but my doctor told me back in the day that i had Non A/Non B and then amended that to Hep C in 1993 once the actual test was approved. I have stayed away from conventional therapies for 30 years and have done lots of alternative therapies including Liver Cleanses, Colonics as well as taking alternative based supplements. I had a Liver Biopsy 12 years ago and the results were F1/2. I had another biopsy 7 years ago and the results improved to F1. I then had a Hepascore about 2 years ago and that came back < F1. So it appears that my liver has been improving over this period of time. My viral load has bounced up and down and the last time i checked in January it was around 2.2 million. I am Geno type 1B.

The main reason that i have chosen to take the Harvoni is that certain friends who have HEP C have died from Liver Cancer and i understand we are in a higher risk group for this disease. Because the imperical tests have been very good my doctor was not able to put me on the treatment until now. Another words, the insurance company gives only so many slots for Harvoni and folks who had Cirrosis or are on the transplant list were getting priority. I finally got a slot and i think part of the reasons for that is that I have been with my insurer for 18 years. i am glad they chose to give me the treatment even though my tests have been coming back good as i know some insurers are not covering patients for the Harvoni that are in my classification.

Here are my questions:

1. My doctor says that since my viral load is less the 10 million, i only need to take an 8 week course of Harvoni. Does anyone else have this experience?

2. They will check my viral load after 1 month, after 2 months and then 3 months after the last dose of Harvoni. Is this a typical protcol that you have all experienced?

3. I assume that if i cure from the Harvoni that i will always will still show Positive for HCV Antibodies, is that correct?

4. I hear that some folks are finding that symptoms of Brain Fog and memory loss have improved after curing from HEP C. Have many people on this forum who cured experienced improvements in this area?

5. I have had a strange symptom for the last 20 years where sometimes my skin get real itchy after i get out of the shower? This is usually after i have had a tan and it begins to fade. The itchiness is very uncomfortable and lasts for about 5-10 minutes. Is this a HEP C thing?

6. Anything i should look out for while taking Harvoni, the doctor asked that cease taking all supplements which i have done. I browsed the forum but did not see Do's/Don'ts anywhere.

Again, i really appreciate whomever started this forum and that there is place here for me to glean Experience, Strength and Hope from others,

Thanks,

Dan

-- Edited by doodaman on Saturday 23rd of April 2016 04:21:41 PM

-- Edited by doodaman on Saturday 23rd of April 2016 04:22:17 PM

-- Edited by doodaman on Saturday 23rd of April 2016 04:25:43 PM

-- Edited by doodaman on Saturday 23rd of April 2016 06:56:46 PM

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