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Author Topic: My Story: Chronic HBV from Birth - Currently on Treatment (Continuous Updates)  (Read 51435 times)

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Offline ArtVandelay

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  • Posts: 51
Hi, I am a new member of this forum. I joined because I 1) want to be part of a community because I am going through a tough time right now. 2) I want to share my experience(s) with others to potentially help others make choices or decisions with regards to their care.

A little about me:

I am currently 23 years old and living on the east coast of the US. I am a college graduate and currently work in the computer/IT field. I am self-employed and have had chronic HBV since birth. It is believed that this was vertical transmission but was never 100% confirmed. I have been without symptoms for most of my life and for decent portion of my childhood I was not on any treatment at all.

Prior Treatment Course:

I was seen during my early childhood simply by a pediatrician who monitored the status of my virus. During this time there was no action taken other than monitoring.

When I was in middle school I continued to see a PCP but my parents had me begin to see a specialist at Children's Hospital. At this point it was decided that my viral load was high enough and my liver tests were flaring enough that I should go on treatment.

I began treatment using adefovir once daily. I continued this for a period of years. My HBeAg cleared and my viral load came down from hundreds of millions to under 100 copies. HBsAg never cleared but no quantitative tests were ever done (just pos/neg).

Around 2009 I was taken off adefovir due to the seroconversion from e-antigen to e-antibody. Monitoring continued and the viral load stayed quite low.

By 2011, however things began to come back (as is expected with HBV). Soon I had viral loads into the hundreds of millions again and high liver tests. Still, though, I was largely asymptomatic from an active health standpoint. I was able to continue a normal life. Even so, it was decided to transfer me into a study at NIH at this point.

I underwent a liver biopsy (I had one in middle school at Children's) in late 2011 to get a read on current liver status and to determine whether or not I would qualify for an NIH trial that was enrolling. This biopsy showed some inflammation and some fibrosis in my liver (to be expected, though).

I DID in fact qualify for a study and post-biopsy was placed on 300mg Tenofovir once daily. I was expected to keep a daily medicine log to ensure compliance and to log any potential side effects. The only thing experienced was a bit of cloudy urine and stomach upset for the first few days. After that, there were no side effects.

I RAPIDLY cleared e-antigen and my viral load dropped very quickly down to the low hundreds. Over the course of the next year or so (into 2012) my e-antigen remained negative on all tests and e-antibody oscillated back and forth between being present and not present. Viral loads by late 2012 and early 2013 were under 100 copies. For a period of time in 2013 my viral loads were undetectable period.

Pushing forward to the present period - My 4 year trial on tenofovir came to an end recently. However, I was offered a chance to enroll in new study to study the effects of combining my already in place tenofovir regimen with weekly doses of peg interferon alfa 2a. I decided to enroll and underwent an entry liver biopsy in June. This liver biopsy was a bit small to get accurate reads but everything looked excellent except for some minor inflammation and such.

I then had a second biopsy the same day I started the interferon. This biopsy was larger and essentially echoed the first one.

CURRENT STATUS:

So here I am still taking tenofovir once a day. I am now on my 4th week of interferon combo therapy. Other than some flu-like symptoms, tiredness and muscle aches I have been doing pretty well. I've had enough energy over the last few weeks to do normal activities and take on clients for my business. However, this all changed on this past Sunday. I began to rapidly feel unwell and then had a sudden onset of depression that was confirmed by NIH mental health consult. I was quickly prescribed 10mg of Celexa to manage this depression and hopefully get me through the 24 week course of the interferon.

I have never experienced any mental health problems other than minor panic attacks a few years ago - thus, this depression has really knocked me down big time. I am finding it a task just to get out of bed, nothing sounds appealing to me and I feel ridiculously sad in general. I do NOT feel suicidal but I do feel hopeless and not well. I have contacted crisis centers over the past few days and this has only led to temporary and very minor improvement.

Even with all of that I do wish to continue on treatment at least for the time being. Studies suggest that with my current surface antigen being quite high and being e-antigen negative at this point that my chance of clearing HBsAg is probably under 15%. Even so, I still think it's worth a shot given that it's one of if not the best potential options I have right now.

I will say that my doctors DID mention that people with B tend to cope with INF treatment better than C - and up until Sunday I was certainly in that category.

GENERAL QUESTIONS FOR OTHERS:

Anybody else here take interferon 2a for HBV (NOT C).

If so, how was your reaction to it and did you have a positive result from it?

Any people on tenofovir that followed the same general course as me?

Is anybody else on clinical studies for B?

I look forward to taking you all along with me on the remainder of this 24 week journey on INF. Hopefully I can tough it out until December - but if things stay as bleak as they seem right now I may be forced to discontinue treatment. Trying to stay strong but even as I write this I am curled up in bed.

I hope this will be a good community to post in. And just as I have asked questions I also hope that I can answer the questions of others that have been diagnosed with this virus. I have studied so much about it since I've had it from birth and I hope that I can contribute to this forum.

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Hi Art. Welcome to the forums! And thank you for sharing your story in such detail. I found it really interesting, since I do not know much about Hep B or the treatments available for it or new drugs in the trial pipeline for it.

Very sorry to hear that the side effect of depression is making life so difficult for you during your INF combo therapy. Perhaps it will lift with the Celexa.

Looking forward to your updates. Hang in there!

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ArtVandelay

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  • Posts: 51
Hi Art. Welcome to the forums! And thank you for sharing your story in such detail. I found it really interesting, since I do not know much about Hep B or the treatments available for it or new drugs in the trial pipeline for it.

Very sorry to hear that the side effect of depression is making life so difficult for you during your INF combo therapy. Perhaps it will lift with the Celexa.

Looking forward to your updates. Hang in there!

best,
kim

Kim,

Thanks so much for reading and your reply. For most of my childhood I mostly just left my treatment up to my parents. But after high school I started learning a lot more for myself. The depression is very rough but even just writing out my experience perhaps helped a little already.

They did tell me it would take a few weeks to feel the effects of the SSRI but I guess that just means I have a rough few weeks ahead potentially. I think I can do it even though it seems very unattainable right now. I'm trying to be a fighter.

I think the good news for HBV is that the labs that were all working on HCV are now switching over to HBV since HCV with treatment now has such a good cure rate. I am encouraged by the work of some of the up and coming labs like Arrowhead Research and others with regards to HBV.

I would love to kick this virus out of my system once and for all.

Thanks again  8)

Offline ArtVandelay

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  • Posts: 51
August 12, 2015 Update

I had a routine checkup appointment today. I am feeling a lot less depressed after starting my Celexa. Doctors said to be advised that I could have flare ups of the depression and to not be discouraged too much by them. My white blood cells are also becoming a further concern as they have fallen once again.

I normally have a WBC around 3.9 but I was up around 4.8 for a while. Just after starting IFN alfa 2a I fell to around 3's and then a few weeks later fell to into the 2 range. I am now at 1.94 as of today. Hopefully that doesn't keep falling!

Offline ArtVandelay

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  • Posts: 51
August 19, 2015 Update

No medication changes - still on Celexa 10mg, Tenofovir 300mg, and the peg-interferon alfa 2a.

Injection schedule for the peg is every Monday. Still having pretty bad side effects and white cells still very low. Have body aches most of the week but lately weekends have been "okay."

I have a strange headache that seems like a migraine - a little sensitivity to light, some dizziness at times and pain is worse when I move my eyes. I checked in with the nurse who oversees my treatment to see if it's normal or worth following up with.

The depression has largely been put at bay by the Celexa but just feeling so crappy does get me down at times.

HBV DNA copies came up slightly after I began treatment but doctor suggests that it's possibly dead virus being broken free from the liver cells. Prior to this point I was undetectable for many consecutive blood tests. HBsAg is still positive and the last biopsy results showed high levels of the surface antigen - not sure my hopes are that high of clearing sAg - but I can hope.

Right now my eyes are peeled on the ARC-520 drug candidate out of Arrowhead Research. They are deep into a phase 2a/2b trial and things look promising. There is an analyst day in September where we will find out more data about this drug. (Disclosure: I do have a stock position in that company).

Offline KimInTheForest

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  • Believe in yourself
Hi Art. Thanks for the updates. I am really glad to hear you are getting some relief from the depression with the Celexa. Depression can make all the rest of it so much harder. You seem to be very well researched on all of this, so you are probably aware of the website https://clinicaltrials.gov . But if not, you can go there and enter "Hepatitis B" or even a specific new drug you are following into the search box to see if any relevant trials in your region are coming up.

I look forward to your future updates. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ArtVandelay

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  • Posts: 51
Hi Art. Thanks for the updates. I am really glad to hear you are getting some relief from the depression with the Celexa. Depression can make all the rest of it so much harder. You seem to be very well researched on all of this, so you are probably aware of the website https://clinicaltrials.gov . But if not, you can go there and enter "Hepatitis B" or even a specific new drug you are following into the search box to see if any relevant trials in your region are coming up.

I look forward to your future updates. :)

kim

Thank you for you response Kim :)

Every week I tell myself that I'll largely avoid the peg-inf side effects and every week I seem to be wrong. It's been tough in that regard but the good thing is that at least my weekends have been decent as that is when the effects seem to be wearing off. If I'm lucky I am getting Fri-Mon morning to be "good" days.

I was surprised at how quickly the Celexa even at the lowest 10mg dose was able to pull me out of the really low point. Fingers crossed to less side effects with future doses!

Offline Scoutdoy

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  • Posts: 452
Hey Art...I just read your posts about your journey and I must say I feel for you for having to deal with this through your childhood.  It sucks that you are having to go through this at such a young age.  No one can possibly understand what you are going through but many of us can somewhat understand the frustration because we are all here because of some form of hepatitis. I truly believe the mind is very powerful in the healing process of our bodies and depression has to be especially difficult when all you are trying to do is get better. Celexa  is a good drug for depression that doesn't seem to Zombify most people. Try to keep your spirits up so that you can kick this disease in the ass and hopefully get cured.  I hope you keep posting your updates and that if you are having problems, another forum participant can give you some suggestions from their own experiences. Good luck to you sir
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline ArtVandelay

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  • Posts: 51
Hey Art...I just read your posts about your journey and I must say I feel for you for having to deal with this through your childhood.  It sucks that you are having to go through this at such a young age.  No one can possibly understand what you are going through but many of us can somewhat understand the frustration because we are all here because of some form of hepatitis. I truly believe the mind is very powerful in the healing process of our bodies and depression has to be especially difficult when all you are trying to do is get better. Celexa  is a good drug for depression that doesn't seem to Zombify most people. Try to keep your spirits up so that you can kick this disease in the ass and hopefully get cured.  I hope you keep posting your updates and that if you are having problems, another forum participant can give you some suggestions from their own experiences. Good luck to you sir

Scout,

Thank you so much for your kind words. The interesting thing is I actually think right now is tougher than childhood. Most of my childhood I "sort of" knew what I had but didn't really research it much. It was more just yearly blood tests since I was largely not symptomatic. Things are tough now because of the peg-inf treatment but let's hope it does something. I'm not overly optimistic since the chance of me kicking the surface antigen are probably under 20% and maybe less given that my surface antigen levels are very high in the liver.

I will certainly continue to post updates and I think that being able to post here has actually contributed to helping my mood a bit. Overall I've lived a pretty normalized life - just with semi regular blood tests...but I thank my lucky stars that I am receiving top notch treatment before I develop any complications or symptoms and I'm glad I've been able to live a normal life thus far!

Hope you will keep up with my journey :)

Offline Scoutdoy

  • Member
  • Posts: 452
Art,
     A 20 percent chance is better than a definite zero, although a little on the weak side. You know you say you have lived a pretty normal life so far however your life has never been normal you just don't know it.  I hope you can slay the beast and truly get to normal and stay positive.  I hope some day to get to normal I have been dealing with this crap for 30 years, I am old and tired but optimistic...LOL
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Shawn Decker

  • Newbie
  • Posts: 1
Hey Art,

Thanks for sharing your story. I was diagnosed with hep B as a kid, age 6 I believe, infected in the early 1980s through tainted blood products. (I was born with hemophilia, diagnosed with HIV a few years after hep B.)
I think we shared a similar experience as kids- with our parents and doctors keeping an eye on the hep B but not having any real ways of treating it. I was fortunate that I didn't have any persistent problems. My mom would notice that my lizer enzymes would go crazy during periods when I was receiving a lot of treatments for hemophilia (concentrated blood plasma), but then they'd return to normal levels when I stopped using the clotting factor....

Fast forward to a couple of years ago- I'd had no problems with hep B, but then my viral load skyrocketed. This coincided with a brief period where I was receiving a lot of clotting factor for a side bleed. The viral load went back down on its own, so yes I was lucky but it was still surprising that it would creep up after so many years of not a peep.

I'm not as knowledgeable as you are on the hep B stuff, but just wanted to touch base and say that I'm glad you're sharing your experiences here. And glad that things are looking up since your original post!


Offline ArtVandelay

  • Member
  • Posts: 51
Hey Art,

Thanks for sharing your story. I was diagnosed with hep B as a kid, age 6 I believe, infected in the early 1980s through tainted blood products. (I was born with hemophilia, diagnosed with HIV a few years after hep B.)
I think we shared a similar experience as kids- with our parents and doctors keeping an eye on the hep B but not having any real ways of treating it. I was fortunate that I didn't have any persistent problems. My mom would notice that my lizer enzymes would go crazy during periods when I was receiving a lot of treatments for hemophilia (concentrated blood plasma), but then they'd return to normal levels when I stopped using the clotting factor....

Fast forward to a couple of years ago- I'd had no problems with hep B, but then my viral load skyrocketed. This coincided with a brief period where I was receiving a lot of clotting factor for a side bleed. The viral load went back down on its own, so yes I was lucky but it was still surprising that it would creep up after so many years of not a peep.

I'm not as knowledgeable as you are on the hep B stuff, but just wanted to touch base and say that I'm glad you're sharing your experiences here. And glad that things are looking up since your original post!

Hi Shawn,

Thank you for the kind words and for sharing your experience as well! It sure sounds like you've had a rough go of it by having a three-pronged health situation. I certainly hope you are doing well and have nothing but bright days ahead.

I hope you'll continue to follow my updates. :)

Offline ArtVandelay

  • Member
  • Posts: 51
August 23, 2015 Update

Feeling a bit "off" today in ways I can't fully explain. Not sure if it's the interferon since weekends are usually okay for me. Just feel sort of jittery and maybe a bit short of breath perhaps. It's a tough one to explain.

I give myself my weekly injection tomorrow morning. Sort of have decided that there's a difference between being pessimistic and realistic. For the past few weeks I've been telling myself "maybe this will be the week of no side effects!" and then been getting knocked on my butt by the interferon. I think this week I'll approach the dose realistically and assume I'll feel under the weather. I think having realistic expectations is important but still being positive about the treatment as a whole.

To be quite honest, I knew INF would be rough but didn't think it would hit me THIS hard. Taking JUST tenofovir each night is like a cake walk compared to this. Doctor mentioned that my effects should lessen with further doses but it seems to flare and then have an okay week. We'll see how things progress.

Keeping up with my regimen on Celexa, INF, Tenofovir for now. Looking at some herbal remedies to keep my energy level up and my mood boosted - but should talk to my doctor before hand.

Offline Sirius

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  • Posts: 3
Have you tested your vitd25oh and intact pth? 

I found the following post here: http://www.medhelp.org/posts/Hepatitis-B/VitD-level-and-miR-378-negative-assoc-With-Viral-Load-in-Patients/show/2716602




http://hepatmon.com/?page=article&article_id=28315
full study in the link
Abstract

Background: Chronic Hepatitis B (CHB) is accompanied by inflammation of liver because of infection with Hepatitis B Virus (HBV). Previous studies revealed an inverse association between vitamin D and HBV DNA levels.

Objectives: The current study aimed to investigate the levels of 25 (OH) D3 (the steady form of vitamin D), miR-378 and HBV DNA in the patients with CHB.

Patients and Methods: One hundred and seventy three patients with HBeAg negative CHB were recruited for the study. Plasma levels of HBVDNA and 25 (OH) D3 were quantified. The expression level of miR-378 in plasma was measured by a relative quantitative Real Time Polymerase Chain Reaction (qRT-PCR) assay.

Results: In the pathway regression analysis, the plasma level of 25 (OH) D3 showed a significant inverse correlation with plasma levels of HBV DNA (-0.198, P = 0.008) and direct correlation with miR-378 (0.188, P = 0.013). Similarly plasma level of miR-378 had inverse association with HBV DNA level (-0.177, P = 0.020).

Conclusions: These results suggest that vitamin D could involve in a miRNA- mediated regulatory pathway in control of HBV replication. Further studies are recommended to understand the effects of miR-378 and anti-infective action of vitamin D on Hepatitis B Virus.
« Last Edit: August 23, 2015, 10:24:26 pm by Sirius »

Offline Sirius

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Also just curious, what is your diet like these days?

Offline ArtVandelay

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Also just curious, what is your diet like these days?

Diet is decent but probably could be a touch better. Cholesterol levels have always been a bit high but no doctor has ever suggested going on meds for it. I don't have a sweet tooth either so I tend to stay away from soda and cookies and such. I get lots of fruits and veggies but as with many people days can vary.

Traditionally I've had issues with low vitD but have been on supplements for that for around a year or two and the numbers are within the normal range.

my latest intact PTH was 22.5
« Last Edit: August 24, 2015, 11:55:16 am by ArtVandelay »

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Hi Art,
Welcome to the Forums. Thank you for sharing your story. I would love to see this on Hep Stories. It is easy to share as you could copy and paste what you wrote here in to the Hep Story format - then just answer a few questions, and before you know it, you have helped others. We edit it a bit, so it is really easy. Hope you consider it - just go to: http://www.hepmag.com/hep_stories.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

  • Member
  • Posts: 51
Hi Art,
Welcome to the Forums. Thank you for sharing your story. I would love to see this on Hep Stories. It is easy to share as you could copy and paste what you wrote here in to the Hep Story format - then just answer a few questions, and before you know it, you have helped others. We edit it a bit, so it is really easy. Hope you consider it - just go to: http://www.hepmag.com/hep_stories.shtml

Thank you for the information! I think I'd prefer to stay anonymous for now, though. I will continue to share my experiences here, though :)

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Understandable Art, and thank you for being here.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

  • Member
  • Posts: 51
Understandable Art, and thank you for being here.

Of course! I do wish this HBV forum was a bit more active but I do enjoy posting here regardless.

Offline KimInTheForest

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  • Believe in yourself
Of course! I do wish this HBV forum was a bit more active but I do enjoy posting here regardless.

And I enjoy reading your updates Art, even though I don't always comment. I have been surprised that there isn't more activity on the Hep B forum. There are certainly a lot of people living with Hep B. I guess all the action is on the Hep C forums because the cure has been found so such a great number of people (like myself) are now getting treated, and we have tons of questions about the treatment experience, etc. Just last month Gilead announced it will now be turning its attention to finding a cure for HBV and HIV, and that it will be using its massive profits ($8 billion) from its HCV cures to fund the research. So I do think there is hope for an HBV cure in the future.

best,
kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ArtVandelay

  • Member
  • Posts: 51
And I enjoy reading your updates Art, even though I don't always comment. I have been surprised that there isn't more activity on the Hep B forum. There are certainly a lot of people living with Hep B. I guess all the action is on the Hep C forums because the cure has been found so such a great number of people (like myself) are now getting treated, and we have tons of questions about the treatment experience, etc. Just last month Gilead announced it will now be turning its attention to finding a cure for HBV and HIV, and that it will be using its massive profits ($8 billion) from its HCV cures to fund the research. So I do think there is hope for an HBV cure in the future.

best,
kim :)

Kim, yes things look to be switching over to HBV and that's great news for me! Too bad clinical trials and drug development is such a slow process.

Meanwhile in terms of a general update - I had some resurgence of the depression symptoms today and have lost the desire to eat food. Might need to discuss a dose increase of my Celexa. Today is definitely one of those days when I don't even particularly want to be on the peg INF any longer. Trying to push through!

Offline KimInTheForest

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  • Believe in yourself
Meanwhile in terms of a general update - I had some resurgence of the depression symptoms today and have lost the desire to eat food. Might need to discuss a dose increase of my Celexa. Today is definitely one of those days when I don't even particularly want to be on the peg INF any longer. Trying to push through!

Hang in there, Art! Sorry to hear depression symptoms are back. Hope that is short-lived. Appetite suppression was one of my biggest problems during my 12 weeks of treatment, even though my treatment was totally different than yours. In retrospect, I wish I had tried even harder to get more food down me (although I did try every day), or that I had tried medical marijuana or something else to help me regain some appetite. I got very depleted during my 12 weeks of treatment due to insufficient calories and nutrition. I lost 10 lbs and was quite skinny to begin with. I just could not eat. As soon as I came off treatment, I got quite sick with a mystery ailment, which is just now starting to lift 4.5 weeks later. I think I got sick post-tx because I was so depleted nutritionally, and sleep-wise and in terms of hemoglobin - all treatment side effects. So do whatever you can to keep yourself in good physical health! And good mental health too of course.

best,
kim :)
« Last Edit: August 28, 2015, 07:20:27 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ArtVandelay

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  • Posts: 51
Hang in there, Art! Sorry to hear depression symptoms are back. Hope that is short-lived. Appetite suppression was one of my biggest problems during my 12 weeks of treatment, even though my treatment was totally different than yours. In retrospect, I wish I had tried even harder to get more food down me (although I did try every day), or that I had tried medical marijuana or something else to help me regain some appetite. I got very depleted during my 12 weeks of treatment due to insufficient calories and nutrition. I lost 10 lbs and was quite skinny to begin with. I just could not eat. As soon as I came off treatment, I got quite sick with a mystery ailment, which is just now starting to lift 4.5 weeks later. I think I got sick post-tx because I was so depleted nutritionally, and sleep-wise and in terms of hemoglobin - all treatment side effects. So do whatever you can to keep yourself in good physical health! And good mental health too of course.

best,
kim :)

Doing my best to force some food down me - but when the depression symptoms set in it's really tough because nothing seems appealing. During my last bout of depression I went from around 147lbs down to somewhere between 138 and 140. And as of today I'm starting to slide a bit again even though I tried to eat two meals today.

I'm actually starting to think this bout of depression might be worse than the initial. Hopefully it is fleeting but if not I supposed I'll have to go back to the doc in the new week for guidance and possible dosing adjustments.

Staying hydrated is one of the BIG things I'm doing even if I can't get food down. I'll be glad when this is over in December - though I've heard there's a lag in the side effects diminishing (argh).

Literally NO food that is offered to me is appealing to me - even from some of my favorite restaurants around my area. Feeling SUPER delicate and fragile this evening and it seems to be worsening. Let's hope that it's better tomorrow or at the very least next week. I have a birthday coming up which sucks because now I'm becoming convinced it'll be a tough birthday to enjoy.

Offline lporterrn

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It is hard to know what to say Art. I struggled with this many years ago, and I don't want to toss out some meaningless words such as "hang in there." For me, sometimes it helped knowing I had a lifeline to others. I hope you have lots of lifelines and that the darkness passes quickly. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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It is hard to know what to say Art. I struggled with this many years ago, and I don't want to toss out some meaningless words such as "hang in there." For me, sometimes it helped knowing I had a lifeline to others. I hope you have lots of lifelines and that the darkness passes quickly.

Thank you so much for your words!

Family has definitely been very important to me during this time. I think perhaps I may have had my expectations set too highly when my doctors told me that people with HBV tend to tolerate the IFN better than HCV patients. Perhaps I talked myself into thinking I'd largely avoid long term side effects.

I suppose the good news is that I've gotten either 6 or 7 injections done so far and this study goes up to 24. I'll be done mid to late December - seems so far off right now but I think I can make it. The good news is if I do feel the need I can withdraw from the trial at anytime. There are days when I certainly feel like it's pointless because the chance of clearing the virus once and for all is so low (perhaps 15% or lower). Even if I were to go off the IFN I would remain on the Tenofovir - which has been excellent at keeping my viral loads undetectable. Really the ONLY thing left is that darn surface antigen.

Offline lporterrn

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Sometimes the antidepressants have to be tweaked - it is hard since there isn't immediate feedback - some people take more than one antidepressant. You mention herbal remedies - is one St John's wort? I don't know much about potential drug interaction, but St Johns wort may help with depression, but is a no-no for some of the hep C drugs. Don't know if it can be taken with celexa or tenofovir.
Also, be sure your doc is monitoring your thyroid. And lots of water.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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Sometimes the antidepressants have to be tweaked - it is hard since there isn't immediate feedback - some people take more than one antidepressant. You mention herbal remedies - is one St John's wort? I don't know much about potential drug interaction, but St Johns wort may help with depression, but is a no-no for some of the hep C drugs. Don't know if it can be taken with celexa or tenofovir.
Also, be sure your doc is monitoring your thyroid. And lots of water.

I had not heard of St Johns Wort - I will look into that. I had read some things about Ginseng (which is also in certain energy drinks but w/o the caffeine and sugar involved). I will be checking with my doctors on these.

I have done some reading about thyroid issues. I had a TSH result a few months ago of 3.93 which showed as in the reference range but a few resources online indicated that COULD be interpreted as high. In my general reading I know a few symptoms I should be looking for with the thyroid - but is there anything you can add that I should be watching myself for? Do you think the absolute feeling of not wanting to do anything could be thyroid related with a TSH result of 3.93?

To be honest I think there's so many factors that could be contributing here that it's probably tough to nail down one as the sole cause (if not impossible). Between my very low white blood cell counts, potentially elevated TSH, the interferon in general etc it muddies the waters for sure.

Not to mention that in terms of optional meds like painkillers I try to be very conservative with them as I never like putting unnecessary amounts of meds into my body. However, the wheels have largely come off of that philosophy since starting the INF. I regularly am maxing my dose of advil or tylenol (advil sometimes gives me an upset stomach when taken too often - but tylenol I've read is a bit more harmful to the liver).

This whole thing has been an ordeal and I am certainly glad to have a resource of people who have had similar experiences. Even though HCV is vastly different than HBV - given that INF is used for both I think there are a lot of folks with similar experiences.

This week looks like my first week of treatment where I had no improvement all week. I am due to dose myself with the INF again tomorrow morning and my usual "good" days of Fri-Sun have not held this week.

Offline lporterrn

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Thyroid issues can't be judged merely on the basis of a borderline TSH test - it takes more info - as for how you are feeling, if you were diagnosed with hypothyroidism, your feeling of not wanting to do anything is consistent with that or a zillion other conditions, including depression. Add in the IFN, and it is no surprise you feel that way.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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September 5th Update:

I have boosted my D3 supplements to around 2700IU per day. I realized the other day that I am 1/3 through this trial. However, I did also receive some new information from some other HBV patients and experts.

Unfortunately, this trial is unlikely to do much for me given that my viral loads are already low and I am e-antigen negative. The masses are indicating that 24 weeks combo therapy is NOT enough to clear my surface antigen and hence have a functional cure. Most people I have spoken to in the last few days indicate the need for at least 48 weeks of treatment. So this was a bit of a let down to hear.

I am looking for a lab that will test my surface antigen QUANTITATIVELY as it is not offered in the United States anywhere (not an approved test by the FDA). Right now I have some emails into some labs in Mexico, some labs in India, and the Hepatitis B Foundation to see if there's any way I can get this test. Having a HBsAg QUANT Assay test will allow me to decide if I want to continue the interferon after this trial OR tell me if my sAg numbers are too high to continue to deal with the side effects.

I have not been sleeping very well and have moved my regular bed times from before treatment (around 12 midnight or later) to like 9:30pm. I am not getting quality sleep and the body aches from the INF have worsened. I have gone off Advil for a few days as it was worsening my stomach symptoms.

I was able to stabilize my weight/even gain a pound or two during the past two days. My family brought some of my favorite foods to me. However, I'm not sure it'll hold. A check of this scale this morning and I'm already dropping back a bit. I'm not at an unhealthy weight - but the weight loss/pace sometimes is a bit worrisome.

At this point I'm focusing all of my energy on trying to find a lab that will do that test for me and just trying to stay afloat mentally and physically. Unfortunately the few times in the last few weeks that I have tried to run on the treadmill or do outdoor activities I have felt AWFUL afterwards. I AM however doing crunches and things that I can do within the house.

In the meantime - just doing my best and hoping it doesn't worsen further.

Offline Scoutdoy

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Have you tried taking a light dose of Xanax to sleep. My doctor gave me a script and I have used it a few time, and slept like a rock. I hope you find a lab to do the testing you want, playing politics with the insurance companies is a bummer. I would try Germany or Sweden, they seem to be ahead of the U.S. when it comes to performing and applying new procedures.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline ArtVandelay

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Have you tried taking a light dose of Xanax to sleep. My doctor gave me a script and I have used it a few time, and slept like a rock. I hope you find a lab to do the testing you want, playing politics with the insurance companies is a bummer. I would try Germany or Sweden, they seem to be ahead of the U.S. when it comes to performing and applying new procedures.


Scout

Scout, thanks for your post!

Would that Xanax have any impact/interaction with my Celexa. There's a chance my Celexa dose will be increased to 20mg this week pending doctors decision and how I am feeling.

It sounds like HiTechLabs in India would be receptive to receiving blood samples via FedEx for testing. HOWEVER, that's a lot of risk (could get stuck in customs and such). Mexico hasn't responded to my query yet. I also have read that SynLabs in Europe might be able to test but people say they aren't very responsive to this type of request.

I asked a few people if they've had luck in Canada but it sounds like they do not offer this test I am looking for in USA, Canada, or Australia.

Hopefully this week I'll hear back from at least one of the lab sources to figure out if somebody can get this test ordered. A lot of the countries that offer it do it for VERY LITTLE MONEY.

On another forum that I have been posting on people are suggesting black cumin seed as a potential aid to help clear the virus. But I am always hesitant to go after a remedy like that.

The Vitamin D3 seems to be a BIG boost to potentially clearing the virus. And a little extra VitD certainly can't hurt me since my levels are a bit on the low side.

I'm so ready to be rid of this virus and I think the thing that is getting my antsy is that I likely won't clear on this trial because it is only 24 weeks and the chances are low regardless. Sucks to have to go through such bad side effects to a nil result.

Offline Scoutdoy

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Ask your doctor before you take anything but my best friend takes Celexa and a low dose Xanax 3x a day.  I would be very leary of taking anything herbal while on treatment or taking an antidepressant. There are so many herbals out there,,,there is no way anyone could know what kind of interaction they could have...good or bad. Too many things combined could have deadly consequences or prevent the medicine you are taking for the Hep to work properly. Be careful, but ask your doc about the Xanax and Celexa....getting good sleep could greatly help your daily stress level.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline ArtVandelay

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Back from my appointment this morning

The only labs I have back are as follows -

WBC is now down to 1.76 K/UL so a bit lower than before but not as big of a drop as before. Practicing good handwashing.

ALP = 132
ALT = 87
AST = 57
Bilirubin = 0.8 (total)
Platelets = 139 (a touch low)

So my LFTs are once again higher. I am crossing my fingers that maybe that rise (especially ALT) might signify that my liver cells are being cleared of the virus.

Will post an update in a few days when I get back my pertinent HBV tests.

Meanwhile, it looks like I'll be sending my blood to Augsburg, Germany for testing for the surface antigen. Indian lab still has not gotten back to me.

Offline lporterrn

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Hi Art,
Oddly, although your WBCs are down, your immune system is not suppressed - it is actually revved up. You may feel crappy during treatment, but you may not get the colds and viruses others get, or at least not as bad. Some docs use interferon on themselves if they feel they are coming down with something. Good handwashing is always a great idea - I wouldn't go looking for trouble.

In the meantime, expect WBCs to continue to drop, ditto with platelets
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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More of my CBC came back this morning and showing "rare teardrop RBCs" - I"ve also had a few consecutive CBCs come back with giant platelets indicated. My neutrophil absolute is 0.7 at this time.

Are the teardrop cells and giant platelets something to be concerned about or are these things that typically happen with interferon treatment? I went back to all my results from 2011 and none had tear drop cells showing. The giant platelets also were not present until a month or two ago.

Furthermore -

HBV DNA counts are also back and they have risen to 815 copies/ML and 140 IU/ML. So that continues to rise. My doctor said it could be from dead virus being counted as it breaks off from the liver. He's not sure of the exact cause at this time.

EDIT: Forgot to add that my surface antigen results are still positive. But e-antigen remains negative and e-antibody remains reactive.
« Last Edit: September 10, 2015, 03:18:00 pm by ArtVandelay »

Offline lporterrn

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Interferon suppresses the bone marrow, which means that all your blood cells will drop and get bent out of shape. This is common. If you were on ribavirin, it would be much worse, esp the RBCs.

I beleive you said you were on Pegasys - since peg-ifn alfa 2a is a large molecule, the side effects and lab abnormalities kick in big time between 4 and 12 weeks - then they start to settle to a steady abnormal, uncomfortable level. They do not keep tanking.

I wouldn't be concerned. On the other hand, if I was on peginterferon, I'd be freaking out because that is what PEG does, so telling you that I wouldn't be concerned seems like a crazy thing to say.  ;D
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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Interferon suppresses the bone marrow, which means that all your blood cells will drop and get bent out of shape. This is common. If you were on ribavirin, it would be much worse, esp the RBCs.

I beleive you said you were on Pegasys - since peg-ifn alfa 2a is a large molecule, the side effects and lab abnormalities kick in big time between 4 and 12 weeks - then they start to settle to a steady abnormal, uncomfortable level. They do not keep tanking.

I wouldn't be concerned. On the other hand, if I was on peginterferon, I'd be freaking out because that is what PEG does, so telling you that I wouldn't be concerned seems like a crazy thing to say.  ;D

That is GOOD to know. Google was definitely not my friend this morning when I started researching tear drop RBCs. Especially because the first result that shows up is bone marrow cancers...

I am around week 9 of the Pegasys right now so hopefully the side effects do not worsen. Continuing to have hot flashes and very ill feelings.

The next thing that will be interesting to see is the reasoning for the rise in my HBV DNA. Again, my doctor said this could be the PCR detecting dead virus since it picks up both live and dead. He thinks that what may be happening is that as infected cells are cleaned in the liver they are breaking off and going into the blood stream where they are adding to the HBV DNA count which was previously undetectable. Seems logical to a lay person like me.

Although nobody can seem to confirm that theory.

Offline lporterrn

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There are lots of theories for the rise, but you really won't know for awhile what these results mean. One thing to consider is to just let it be and try to let the journey be the journey. I wouldn't go so far as to say to enjoy the journey, but I think that all the investigation can be exhausting or overwhelming. I found it helpful to create space around me where I wasn't thinking about treatment. I took a page from Norman Cousins book and watched a lot of comedy.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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There are lots of theories for the rise, but you really won't know for awhile what these results mean. One thing to consider is to just let it be and try to let the journey be the journey. I wouldn't go so far as to say to enjoy the journey, but I think that all the investigation can be exhausting or overwhelming. I found it helpful to create space around me where I wasn't thinking about treatment. I took a page from Norman Cousins book and watched a lot of comedy.

I have been watching a lot of Netflix, playing a lot of video games and playing with my dogs (or trying to). I've lost a lot of my attention span and sometimes even relaxing and watching videos irritates me. I've also been getting really really forgetful. The other day my mom got me out of the house and to Petsmart where we were looking for something for our dogs - I'm normally sharp as a tack but I turned down an aisle and literally forgot on the spot what we were there for. Had to turn to my mom to get her to remind me. It just wouldn't come back to me. That's a relatively new side effect.

Have been trying to stay active when I can, and keep hope up that my surface antigen will clear. Other than that - have posted here and on another forum. I started keeping a personal journal as well each day which helps a lot with the mental aspect.

Offline lporterrn

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What you are describing is typical, and I wish I could say that it doesn't get worse, but it can. It isn't that it gets worse as much as the relentlessness of it wore me down. Attention span is lost, and irritation is common. Not being able to read was hard. The only thing that helped me was to refrain from making things worse. It really came down to enduring treatment and finding was to pass the time. I highly recommend Ted Talks and radio podcasts.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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What you are describing is typical, and I wish I could say that it doesn't get worse, but it can. It isn't that it gets worse as much as the relentlessness of it wore me down. Attention span is lost, and irritation is common. Not being able to read was hard. The only thing that helped me was to refrain from making things worse. It really came down to enduring treatment and finding was to pass the time. I highly recommend Ted Talks and radio podcasts.

I LOVE Ted Talks! Also a big fan of things like RadioLab, Snap Judgement etc. It's definitely a lot worse than i anticipated but I think so far I'm doing okay (at least that's what my parents have been telling me). A few weeks ago if somebody had asked me I think I would have said I was going to quit the trial but I'm more determined to finish now. Especially with an ALT flare that could bode well for seroconversion.

Offline lporterrn

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Since you mentioned some of my favs, here are some more (starting with my favorite)
Wait, Wait Don't Tell Me
The Moth
Serial
This American Life

I put them all on my ipod and listen to them, esp when I have insomnia.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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Since you mentioned some of my favs, here are some more (starting with my favorite)
Wait, Wait Don't Tell Me
The Moth
Serial
This American Life

I put them all on my ipod and listen to them, esp when I have insomnia.

WWDTM, Serial and TAL are all among my favorites. Haven't listened to The Moth ever. Problem with podcasts like these are that I get so invested I could not possibly fall asleep while listening :)

Offline lporterrn

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true...
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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September 26 Update

Last week was a lot better but I think it was artificially enhanced by my birthday and seeing friends that I haven't seen in a while.

The main symptom these past few days are the muscle pains and joint pains. I have severe enough pain in one of my ankles that it almost feels like I sprained it. But I haven't done anything that would cause that type of injury so I'm left with it being the interferon. Lots of pain in the hip joints and shoulder blades as well. I had the worst headache yesterday but luckily it subsided a bit. Tylenol seems to be working best for the muscle and joint pains whie advil is best for the headaches.

Though I must say the last few days none of advil or tylenol appear to be working as well as before.

I don't have any lab work updates (next time for that will be around the first week of October). Until then it's just continuing as usual.

On a plus note - I looked at my dosing logs and realized that when I inject on Monday that will be my 12th dose out of 24! Halfway is close!

Also really encouraged by the presentation by Arrowhead Research in terms of a possible functional cure getting closer. So there are things to be positive about. Still not sure 24 weeks will be enough to eliminate my surface antigen - but 24 weeks is the study so not much to be done about that.

I'm managed to go on a bit of an eating kick in the last week too and gained back some of my lost weight. This morning the appetite is a bit weaker though.

One new symptom/side effect is I'm bruising a lot easier than I normally do.

The forgetfulness is still very much in place as well - but the people around me seem to be adjusting to it so it makes it easier a bit.

In the meantime, still staying hydrated and just trying to get through to December. These muscle aches are terrible!

Offline lporterrn

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Congratulations on getting this far! Yes,your symptoms are right on target - bruising, prolonged clotting times, and nose bleeds are quite typical. SO is everything else. Caution with the advil as that can create more bleeding issues, and GI problems, including GI bleed. I assume you know what is the max dose of Tylenol for you, but including info anyway: http://www.hepmag.com/articles/2957_10530.shtml Some people find the time-release tylenol to be a good choice.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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Congratulations on getting this far! Yes,your symptoms are right on target - bruising, prolonged clotting times, and nose bleeds are quite typical. SO is everything else. Caution with the advil as that can create more bleeding issues, and GI problems, including GI bleed. I assume you know what is the max dose of Tylenol for you, but including info anyway: http://www.hepmag.com/articles/2957_10530.shtml Some people find the time-release tylenol to be a good choice.

Ever since I started this treatment back in July I've actually been favoring Tylenol over Advil. I still on occasion will take an Advil in place of a dose of tylenol if I have a bad headache but it's infrequent. When not on treatment I prefer Advil in small doses.

Time release Tylenol is a good idea that I might try! Thank you - I had not thought of that.

Offline ArtVandelay

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Directing this question towards Lucinda but if anybody would like to answer I'd be appreciative.

At what point should I talk to my doctor about the level of muscular and joint pain? I do not think I have been sleeping in a weird position and yet I have a distinct worsening of the pain mainly in my right hip/buttock area and radiating a burning sensation of sorts down the right leg. This area is substantially worse in terms of pain than the rest of my body soreness that is just generalized. It also occasionally feels like I've had a right ankle sprain but that comes and goes every few hours.

The Tylenol I am taking (2 325mg pills each dose) is no longer appearing to aid the focused pain.

I guess my paranoid self is a bit more weirded out by this since it is a bit more targeted than the generalized soreness and malaise. Given the fact that I was flagged as having some giant platelets and such you guys don't think this could be a clotting issue in my leg? I don't have shortness of breath - it's just that the worsening pain is a big alarming to me. I had to get myself out of bed this morning because it was giving me shooting pain no matter how I laid.

I did try some stretches to no avail. It just makes me wonder if at my next appointment (or sooner?) if I should ask for an MRI or something to rule out anything serious.

Offline lporterrn

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The way interferon works is it boosts the immune system, and tries to fight HBV (as well as everything else). In the process, it does many, many things, including releases cytokines. These accumulate in the joints and muscles, and thus the aches and pains. Simultaneously, we tend to rest more, move less, and this makes matters worse. And if that isn't enough, the brain is getting involved in multiple ways, and interferes with our inner coach that normally helps us get past these obstacles. And then, there is the side effect of neuropathy, which this might be, but your doc will need to diagnose.

You asked,
Quote
It just makes me wonder if at my next appointment (or sooner?) if I should ask for an MRI or something to rule out anything serious.
Although this is highly typical, you don't have to suffer. Your doc might prescribe physical therapy, medication, stretches, activity, and other things to alleviate your pain. However, as awful as it is, it is unlikely it will go away until interferon is stopped - and even in that, it may take time.

In my case, I had horrendous back and sciatic pain - mostly because I spent too much time on the couch. It took a long time to correct.

The one thing that pretty much all patients found helpful was to drink lots of water. It took the side effects down a notch.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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The way interferon works is it boosts the immune system, and tries to fight HBV (as well as everything else). In the process, it does many, many things, including releases cytokines. These accumulate in the joints and muscles, and thus the aches and pains. Simultaneously, we tend to rest more, move less, and this makes matters worse. And if that isn't enough, the brain is getting involved in multiple ways, and interferes with our inner coach that normally helps us get past these obstacles. And then, there is the side effect of neuropathy, which this might be, but your doc will need to diagnose.

You asked,  Although this is highly typical, you don't have to suffer. Your doc might prescribe physical therapy, medication, stretches, activity, and other things to alleviate your pain. However, as awful as it is, it is unlikely it will go away until interferon is stopped - and even in that, it may take time.

In my case, I had horrendous back and sciatic pain - mostly because I spent too much time on the couch. It took a long time to correct.

The one thing that pretty much all patients found helpful was to drink lots of water. It took the side effects down a notch.

This makes me feel a lot better. I realize I've been a bit worrisome about all of this pain. I guess it's still hard to wrap my head around the severity of it sometimes even 12 weeks into the treatment. No fun! I try to make sure I at least do a bunch of walking laps around my house and around my street a few times a day. Even that is quite challenging as of late.

Offline lporterrn

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Interferon's affects on the brain would cause the Dalai Lama to have panic attacks. This is normal. At 12 weeks, you are coming in to the worst of it. From here on out, it should remain steady, but ups and downs do occur. The laps are a great idea. Humor and distraction also help. Honestly, the real challenge is just to get through it without making too big of a mess.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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Interferon's affects on the brain would cause the Dalai Lama to have panic attacks. This is normal. At 12 weeks, you are coming in to the worst of it. From here on out, it should remain steady, but ups and downs do occur. The laps are a great idea. Humor and distraction also help. Honestly, the real challenge is just to get through it without making too big of a mess.

After that bout with the depression before and just after being put on Celexa I have been in a lot better state mentally. Even with the severe pain and some of the forgetfulness I try to be upbeat every morning when I wake up. My sense of humor has returned despite the bad pain. I'll chalk that up as a win in my book!

It is a shame that I've had to bow out of a lot of events and such that I normally would enjoy doing simply because I'm not able to move as well as I normally do or just because I don't have it in me.

I feel like with the Tylenol and Advil it's a battle of side effects. With Advil you have the risk of bleeding especially with my low platelets (plus it gives me a bit of an upset stomach if I take a lot over the course of a week or so even with food). Then with Tylenol you have the studies saying that it's not great for the liver (but I think my dose is well within the safe limits).

I"m just glad to have found this forum as a resource.

Offline lporterrn

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    • LucindaPorterRN
I can't recall if I sent this link: http://www.hepmag.com/articles/2957_10530.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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I can't recall if I sent this link: http://www.hepmag.com/articles/2957_10530.shtml

Yes! Saw it above. I always tend to come in under my max dosage per day.

Offline ArtVandelay

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I woke up from a nap a few hours ago and my legs and arms did not seem to be working as they should. I ate a sandwich and some chips and as I was eating I felt like my arms were not mine as my hands fed myself chips.

I have a scheduled appointment tomorrow so will be discussing this with my doctor. Feel a bit on the floaty side as well but not really what I would describe as dizziness.

Very disconcerting all of a sudden having to actually contemplate each step. If it's still around in an hour or two I might have my doctor paged.

This was accompanied by a moderate but sharp headache in one area of my head.

Offline Scoutdoy

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Art, why don't you page the doc,,,just to be on the safe side. The disorientation is concerning. I think I would pick up the phone and give them a buzz



Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline ArtVandelay

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Art, why don't you page the doc,,,just to be on the safe side. The disorientation is concerning. I think I would pick up the phone and give them a buzz



Scout

Likely will go ahead and do this. I've had some forgetfulness for past few weeks but this seemed quite different. Was almost like the muscles in my legs didn't want to work as the normally do. Aside from the achiness and soreness I've been having this was definitely a weird thing. Sitting down now but still feeling a bit "out of it"

Crossing my fingers it's just a freak thing. I did read that sometimes migraines can cause this type of thing. And I am somebody who does get a few migraines per year. This has never happened before, though

Offline ArtVandelay

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10/7/2015 Labs

AlkPhos = 131
ALT = 92
AST = 55

CBC showed low white blood cells as usual. Still showing low platelets as well and giant thrombocytes present. Rare teardrop cells still present as well.

Will not have HBV related blood tests back until Friday or Monday.

Doctor said to monitor regarding my incident last night with the legs and arms. HE said if it happens again contact them ASAP but we won't worry about it for now. They think it could be a rare side effect from the Celexa. They do not think it was the pegINF. Will not be going back for another appointment until later in December now.

11 doses of the INF left!

Offline ArtVandelay

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Brief Update:

Actually ended up being referred to the local ER last night. Was there for a little over 6 hours of misery. I got a flu shot earlier yesterday at my routine checkup. Had been feeling "off" more than the normal pegINF "off" feeling all evening. Around 8:30 I went upstairs to go to bed and could NOT warm up - felt extremely cold. Then I started suddenly burning up and determined I had a fever of over 102 and climbing.

On-call doctor at the clinic I'm seen at told me to go get evaluated at the emergency room. By the time we were seen by a nurse my temp had reduced to 99.8. Both my doctor and the ER docs think that it was a brief "febrile" reaction to the flu shot. I've never reacted like that to the flu shot before - but I suppose that makes sense. It's the only "unusual" thing that happened yesterday.

ER took blood cultures that won't be back for a few days. Have had issues regulating my temp a bit.

Meanwhile my normal appointment blood work continues to flow in - a bit of an increase in myelocytes in my CBC/Differential - as well as slightly elevated vs last time bilirubin. No HBV tests have come back yet, though.

Offline KimInTheForest

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Glad to hear your trip to ER last night was brief'ish and resolved, Art. I can believe it about the flu shot being the cause of your fever. I think interferon and/or the other drug you are on probably increases your body's own immune response‚Ķ? In which case your body will be more reactive than normal to something like a flu shot, which will be perceived as a foreign invader requiring containment, etc. 

(I had a similar reaction to a B12 shot shortly after finishing treatment, and I had already formed the theory that my immune system was left temporarily hyperstimulated post-treatment.)

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline ArtVandelay

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Glad to hear your trip to ER last night was brief'ish and resolved, Art. I can believe it about the flu shot being the cause of your fever. I think interferon and/or the other drug you are on probably increases your body's own immune response‚Ķ? In which case your body will be more reactive than normal to something like a flu shot, which will be perceived as a foreign invader requiring containment, etc. 

(I had a similar reaction to a B12 shot shortly after finishing treatment, and I had already formed the theory that my immune system was left temporarily hyperstimulated post-treatment.)

best,
kim

It was scary to say the least! Especially when combined with the odd leg symptoms I had the night before. Still a bit on the dizzy side and I'm having trouble regulating my temperature but let's hope that the flu shot reaction is over after last night.

Offline ArtVandelay

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October 16, 2015 Update

- Story is unchanged at this time. Lots of the same sort of symptoms with a BIG intensification in burning leg pain from last night into today. Lucinda seems to have been correct in her guidance of a week 12 peak that sticks around more or less. This is likely the worst leg pain I've had since the beginning of treatment. Sticking with the Advil and stretches but not a lot of assistance from either at this time.

Sticking with the treatment for now though! Onward!

Offline lporterrn

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Hi Art,
I've been on vacation, and just checking in. Your experiences are fairly typical for interferon. It's rough - many of us ended up with emergencies, mainly because we have non way of knowing what is normal. The entire experience is like an out-of-body one, although never having had an out-of-body experience, I guess it is more like imagining one. Anyway, it's tough, and it sucks. But you are tough too, and I can see you holding on. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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Hi Art,
I've been on vacation, and just checking in. Your experiences are fairly typical for interferon. It's rough - many of us ended up with emergencies, mainly because we have non way of knowing what is normal. The entire experience is like an out-of-body one, although never having had an out-of-body experience, I guess it is more like imagining one. Anyway, it's tough, and it sucks. But you are tough too, and I can see you holding on.

Lucinda,

The "out of body" description sounds pretty spot on.

Meanwhile - here's my periodic update (October 25, 2015)

- The good news is the soreness and pain levels haven't really gotten at all worse. Perhaps even coming down a little bit at least from the extreme hip/leg pain I was experiencing before. Bad tiredness remains - last night I slept for 13 hours and was still tired!

My cognitive brain fog remains in place and have been seeing a touch of double vision but not really. Just often I'll be looking at a TV or trees in the distance and it's like I'm a little cross eyed. My reflexes have also gotten a little bit mucked up and I've lost the ability to effectively play the online games I normally like to. My hands feel pretty weak when typing on the computer and my typing speeds have come down a bit.

Dreams have gotten really vivid for the past week or so but that's not particularly concerning for me at all. If anything they add some entertainment even if they aren't all pleasant.

One thing that's been showing up a lot that I haven't mentioned here before is weird blood shot eyes. The bottom or top halves of both my eyes have been getting bloodshot randomly - makes me look pretty zombie like at times (haha).

Other than that still pressing forward here. No new blood tests to report back as I haven't been back to the doc (won't return until December unless something else pops up).

To be honest I'm not sure how other folks dealt with this for 48+ weeks in some cases. 24 weeks already seems like a heck of a long time and I still have 8 doses to go!

Definitely a lot like I've stepped out of my life and I'm sort of in limbo. December cannot come soon enough.

WITH THAT SAID - for those people who are considering a round of interferon to combat HBV I'd say definitely give it a go if you can swing it with your current life situation. Personally, I couldn't imagine functioning if I had a full time job during this. At least with my personal business I can decline clients as needed if I am not feeling great. But do not be turned off from my postings and moaning/groaning. I think I'll still be glad I gave this a try even if it doesn't wipe out the surface antigen once and for all.

Offline ArtVandelay

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Update October 30, 2015

Had a fainting spell where I could not breathe the other night and have been having a fluttery feeling in my chest. My NIH doctor is having me see the cardiology department to potentially have a Holter Monitor put on for a day or two to check for any problems. Also will be getting an EKG on Monday. Hopefully it is nothing.

General soreness and sciatic-like pain continues but I attribute that to the peginterferon.

Eyesight is starting to have some problems as well. Seems localized to the left eye with some sensation of being cross eyed even when I am not.

Offline ArtVandelay

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11/4/2015

Labs form my appointment

CBC+Differential -

RBC = 4.4 M/uL
HCT = 39.5%

My absolute neutrophils are now 0.50 K/uL with a percentage value of 25.4%
Lymphocyte Absolute = 1.3 K/uL
Monocyte Absolute = 0.04 K/uL

Giant thrombocytes are present in the sample
Thrombocyte aggregates are present as well
6-14% range of Anisocytosis


One interesting note is that the cardiology division ran a lipid panel and after having super high cholesterol my whole life my value is now 143! So I guess there's some good news. My HDL needs a little bit of work though.

I wore the heart monitor for 24 hours and just returned it. No results back, though as of yet.

My eye sight has continued to worsen a tad. I am fine with nearby things but am really starting to have problems seeing things that are a bit of a distance away. I've always had 20/20 vision. The study doctors may have me see the eye doctor if this continues.

Other than that no new updates - soreness continues. I have 7 doses of the peginterferon remaining at this time. My weight loss has slowed or stopped though which is another good thing. I am sitting around 125lbs after being at around 147lbs at the start of the trial. I would like to settle around 130 ideally.

The hepatic panel is comparable to last time with elevated numbers but nothing jaw dropping.

I have been staying very hydrated and my mom grabbed me a really near 4D jigsaw puzzle to work on. I've also been doing some light yard work and playing plenty of video games.

Will update when I hear back about my cardio visit.

Also - I must say that the neutrophils are awfully low. I wonder if my doctor will put me on neupogen.

Offline lporterrn

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Actually, I was surprised at how good your counts were. These are really typical. Keep in mind that although the neutrophils are low, they are low in the blood stream - not your body. Interferon is boosting your immune system, not lowering it. It's not like chemo patients whose neutrophils are destroyed. As bad as one feels, it is amazing that the immune system is boosted rather than surpressed. It never fails to amaze me how rare it is for hep patients to get a cold during treatment, and then the weeks following treatment they seem to catch everything.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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Thanks, Lucinda for your positive posts as always :)

November 25, 2015 Update

Chugging along here in the final stretch. I have 4 doses remaining. Side effects had a bit of a lull surprisingly over the last week or so. Back to being pretty bad this morning but I am thankful to have had a bit of a break. Have started to try Activia for my stomach upset symptoms. I also continue to have eye problems, brain fog and also increasing itchiness mainly on my torso - no rash, though.

I had a bit of a binge eating session this past weekend and managed to smooth out some of my weight loss but it's still a lot lower than when I started. I'm getting a lot of comments from friends like "omg you look thin" and one of my best friends actually tried to pick me up and said it was like lifting a feather :P

I also have a BIT of hair loss - I'm not sure I'd even call it that. It's not super noticeable but when I run my fingers through my hair I'm having a lot of shedding and a lot more in the shower drain after I shower.

Other than that - no new labs to report!

Offline ArtVandelay

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I'm done with my course of peg-interferon!

Unfortunately at the end of the trial (post Christmas) the surface antigen remained positive. However, I'm starting to feel better except for a lot of itching still. My energy level and appetite is improving and overall I'm feeling good!

My weight is starting to creep back up as well.

My viral loads are still almost undetectable and the e-antigen is negative. So really, I am just going to go back on the tenofovir only and await a new trial or medicine. It's disappointing that this was the result but I somewhat expected it given that the chances of seroconversion for the surface antigen was like 10-15% at best.

The experience was difficult but I think it gave me a great insight into how bad my body can really feel. If I get the flu in the future I'll think of it as a piece of cake hopefully! Eye opening experience and I'm glad to be done!

Thanks to all who responded to me (especially Lucinda!!!)

I will continue to post periodic updates here should anything new come to the surface.

For now - I am most intrigued by ARC-520 still which is an experimental medicine from Arrowhead. They have shown some excellent progress with a potential functional cure. Still a few years away at best, though.

Offline KimInTheForest

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Congrats on finishing your treatment, Art! Sorry the results weren't better. But how nice that your VL is nearly undetectable and the e-antigen is negative. I am sure it feels great to be done.

Hoping that a new trial or medicine comes your way soon! :)

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Scoutdoy

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Hope you get feeling better art...although you kind of expected the outcome it's still disappointing....I am sure that although your optimistic for the future...it still hurts....I have dealt with this disease for 30 years...and it just sucks! Hope you can kick this soon! Stay positive...it will happen one day


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline lporterrn

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    • LucindaPorterRN
Thank you for checking in - sorry about the results, but your bravery and commitment are unquestionable. Personally, I've never regretted my treatment failures, but I would have regretted not trying.

So, KUDOS to you for trying, and may 2016 be a fabulous year.
Peace,
Lucinda
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline vanalla

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Hi ArtVandelay,

Thank you for sharing your story and I want to say how amazing and well informed you are about HBV.

I want to share my story also though I did not go through as much as you did. I am 23 years old living in California my whole life. I have chronic HBV ever since I was born and got it from my mom that has it also. I never really went through much treatment my whole life until when I was about 10 or 11, my viral load became pretty high so I started taking some kind of medicine that I was too young to remember. I only took it for a few months since my viral count went down eventually and everything seemed normal again and my liver functions were normal too. When I was about 18 years old, my viral load got really high again so my doctor started to make me take Entecavir (Baraclude) and I was on it for 4 years. Luckily my liver functions were still fine and normal and I have blood tests and checkups with my doctor every 6-7 months. Last year though, I changed doctors because of my new insurance, he recommended me to take Tenofovir and I have been on it since then. My viral count has went down tremendously since 2 years ago and my liver functions still seem normal.

Everything seems to be fine for me so far, but ever since I graduated from college in May 2015, I suddenly felt more down and unmotivated. I'm still currently unemployed because I could not see myself working yet and I can't even explain the reason for why I'm feeling like this. I thought that maybe it's the whole after graduation/working stage so I'm feeling stressed from it so I decided to take this whole year off. These past few months has been more stressful for me than being at school and I'm not even doing anything. I've been trying to relax, but I am constantly worrying over nothing. I'm starting to think that I'm getting depressed and I can feel my body getting more tired and restless. I hope that this feeling has nothing to do with my liver problems and will pass soon, but after reading your story, it's very likely related now. I got a blood test today and will soon see my doctor in a few weeks hopefully.

I also want to say congratulations on finishing your treatment! :) You've really been through a lot and you're still keeping it strong. This really helped me also and informed me about HBV more.

« Last Edit: January 24, 2016, 10:16:57 pm by vanalla »

Offline ArtVandelay

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Thank you to everyone for all of the kind words! Lucinda, you have been wonderful through this whole process and everyone else who has followed my story as well. It means a lot - you guys helped me get through it all!

Vanalla,

I am SO glad that I was able to help somebody with my story. You sounds VERY similar to me and it is almost uncanny. I am feeling a lot more positive lately after getting off of the peginterferon. I am still on the Tenofovir but that has never given me bad side effects. Certainly, the post college job search can get you down. It does sound like your liver state is in a good place, though with TDF (tenofovir).

I would be glad to keep in touch with you if you'd like somebody to talk to. If you private message me I would also be happy to exchange emails or something so we can chat off-forum.

If I have the power to give knowledge and help to other HepB patients I will always jump at the opportunity. I think with a lot of Hep patients the issue is the stigma that comes with it (as with any disease that can be transmitted in so mayn ways including sexually).

You should do things that are enjoyable to you, and never lose sight of the fact that others are around that have either gone through or are going through what you are going through right now!

Let me know if you'd like to touch base and discuss anything!

Offline ArtVandelay

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March 23, 2016 Update:

So after being off the peg-interferon for around 3 months now I had my first follow up appointment. I am still on TDF once daily (300mg). I am feeling incredible and back to my old pre-peg self.

I do not have DNA counts or surface antigen results yet but my white blood cells are completely back to normal and everything looks good.

My ALT is the lowest it has been ever! (Value is 27 today). My AST is 26 which is close to a record low for me as well (but not quite). My Alk-phos which has had a tendency to run a bit high is also down to 96 which is the lowest value since 6/3/15. Prior to that low on 6/3/15 it was high for many visits before that as well.

The ALT is very encouraging.

What I DO know is that one patient who is on the same trial has officially cleared the surface antigen. This patient was the one who started right after me. The patient before me (the first one on the trial) and myself have not cleared. I'm crossing my fingers one last time with this last blood test!

A few interesting notes - NIH is looking into starting a new study where they want to intravenously infuse some surface antibody serum and then treat with peg to see if that reactivates the immune response that people theorize is suppressed by the surface antigen. I won't qualify for that in the near future but perhaps in a few years it may be something I can try.

Gilead is also coming out with a new version of Tenofovir which will be called TAF (instead of TDF). Lots of good work being done in the HBV field now that HCV is treated/cured.

I will post updates but much more infrequently. I will also post when I get back the rest of my blood work from today.

Offline KimInTheForest

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This is all such good news, Art! So glad your liver enzymes and other results are looking so good and you are feeling so well. Thanks for updating us! :)

kim
« Last Edit: March 23, 2016, 09:00:45 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline lporterrn

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This is quite hopeful Art. Thank you for the update.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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This is quite hopeful Art. Thank you for the update.

Thank you Lucinda! Also thank you to Kim for the kind words!!!

Lucinda, I had a quick question. My differential/CBC came back today and is showing a few irregular things. 1) Polychromasia 2) Anisocytosis 3) Ovalocytes 4) Macrocytes

Granted, all three of those are showing "mild 6-14%" so I'm not too concerned. But given that I've been off the peg for a while now I would think that those types of indications of marrow stress would be subsiding now. I did not have all 4 of those indications showing up at any point at the same time during peg.

Is this something to monitor? From what I've read this can indicate "stress" of the bone marrow or that the marrow is releasing immature RBCs too early. I also emailed my dr to inquire but wanted to see if you had any thoughts on this.

Thank you!

Offline lporterrn

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    • LucindaPorterRN
That one is for your doctor
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline ArtVandelay

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General Updates:

Hello all! I realized I vanished - and that's because there wasn't much to say. I continue on Tenofovir once daily but with no other treatment. I have no current side effects. I am currently HbeAg NEGATIVE and eAb reactive. My surface antigen remains positive but that at this point is expected. The current path is to just keep me on the daily pill to suppress any viral activity and wait for a new trial down the road.

Life has been good in the period since I stopped posting. I've now been working at a new job for around the past year and it's going wonderfully! Things are definitely more stable than they were when I was on the peginterferon.

I'm happy to be a resource for anybody with HepB questions or questions about possible treatments and experiences and such. However, everyone should remember that I'm simply a patient and NOT a doctor or any sort of medical professional. So please take the things I say with a grain of salt and consult a medical professional for more information/questions.

Just happy to say life is good for now - hopefully a new trial comes along at some point to wipe this thing out once and for all!

Cheers! And thanks to everyone who had words of encouragement during my tough time.

Offline KimInTheForest

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Hi Art! Good to hear from you - and great that life is going so well for you health-wise and with new job! I had been wondering about you since you had disappeared from the forums here. Happy New Year to you!

kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

 


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