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Hep C Discussion Forum -> New Members Area -> Rising ANA on 24 Week Harvoni Treatment of Concern - Doctor not responsive
Post Info TOPIC: Rising ANA on 24 Week Harvoni Treatment of Concern - Doctor not responsive
Jaded


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RE: Rising ANA on 24 Week Harvoni Treatment of Concern - Doctor not responsive
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Thx fourlocos and dharmabum for the pdf...it's safe to say that Harvoni runs the gambit as far as side effects go. I thought if was having fluctuations in my blood pressure...now I know why. Hopefully the side effects pass after EOT at some point.

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64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19
fourlocos


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Thanks for getting the file together!  It was 216 pages.  I skimmed through some of it.  And yes Tig I noticed many of the same issues reported.  I noticed some died but I felt those were all from other health issues they were going through during treatment.  So that didn't raise any alarms!  I am hopeful that by next year we all can report improvements.  And by then I do believe more of the sides will have to be listed on the Harvoni USA site. 

As I reported before my primary doctor sat in on a Harvoni session while at a medical conference a few weeks ago.  She told me she also noticed only good things and no discussions on how to handle patients that had post treatment pain.  She was hoping to be able to help me.  I would just have to visit each of the specialists in our group.  Not much else they can do.  I decided to move on from it.  Take Tylenol without worry when needed and deal with it day by day but live my life as it is now.  I let go of the anger I was feeling.  A step forward :)



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!
Tig


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Thanks for posting the original info 4L and Joann, thank you for the PDF link. It is lengthy, but it goes to show us there are a multitude of possible sfx and a bit of reviewing provides some obvious similarities on this protocol.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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dharmabum


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Hi Charlie and fourlocos,

I was able to download the file as a .pdf document.  It is lengthy, but not too large.  Hopefully, you can download it from this message and sort through it at your leisure.

I was also summarily dismissed whenever I called my gastro's office with questions or concerns; I think that they are practiced at keeping info from the patient lest the patient becomes psychosomatic.  They just do not have the time...

Thank you for finding this!

J

 



Attachments
a07bc284.pdf (1,069.6 kb)
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Joann

 

Geno 1a  - failed Tx Inc/Int/Rib - Tx Harvoni 1/14/15 - UND at EOT 4/7/15, 7/7/15, 9/9/15, 12/04/15, 10/26/16
fourlocos


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Jaded I used the code file dropper gave me. Not sure if that will work or not.   Please let me know!

 

Doesn't seem to work.  Sorry!



-- Edited by fourlocos on Tuesday 25th of August 2015 01:40:31 PM

__________________

GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!
Cinnamon Girl


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Hi Charlie, welcome from me too.

Sounds like your doctor is unhelpful to say the least and I agree with Tig that it would be perfectly reasonable for you to consult another doctor for a second opinion.  To tell you to `just not pay attention to lab results` is an insult to your intelligence as well as being totally unprofessional. 

It seems like we`re hearing a lot of reports about doctors not being interested in problems their patients are having with Harvoni, during and post treatment, but you have a right to know what`s going on with your own health. 

I hope you get some answers soon, either from an immunologist or another specialist, and I wish you the best of luck.

Please do keep in touch and let us know what you find out...



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Tig


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Hi Charlie,

Welcome to the forum! My first thought after reading your post is, you need to seek the opinion of another doctor. One that respects your rights as a patient, and certainly give you the respect earned as a medical professional yourself. He owes you explanation and if he's not willing to provide it, go elsewhere. You have every right to your records and an explanation of their results.

I would certainly seek the opinion of a Rheumatologist. Since you reacted to antiviral therapy years ago, doesn't mean you will this time, but hey, going from a negative ANA to 5.35 says something's going on. Have you been tested for other autoimmune diseases? Sjogren's syndrome or autoimmune hepatitis? With a level that high and your history of Lupus, I would want to have my questions answered immediately and not dismissed by some doctor that wants to control everything. I'm sure there are tests that will either provide you with the cause or put your mind at ease. 

I'm glad you're here Charlie and hope you get some answers soon. We're all here to help in any way we can. Do keep us in the loop. Good luck...



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Jaded


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fourlocos wrote:

I have a FDA report from Oct 2014 to March 2015 of reported side effects they have received.  If anyone wants to see it please just private message me and I can email it to you.  If was released to someone I met online who has had issues similar to mine post treatment. 

As far as your Hep doctor goes, other than my primary doctor I have found that the treatment doctors do not want to hear anything but sunshine and rainbows when it comes to Harvoni.  I have never been discounted as poorly as I was while on treatment.  It felt like "move along, your treatment worked, stop complaining".  

 If you upload the FDA report to this free file sharing site...

http://www.filedropper.com/

and then edit your post with the download link it will then provide you with...people will be able to download it easily.

 



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64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19
CharlieMac


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Thanks for your reply. I'd love to see the report you reference. My email addy is charlie (dot) mchenry (at) gmail.com. The latest development is that I'm considering seeing an immunologist to get a more authoritative opinion on the cause and effects of the rising ANA. I feel like a trained immunologist will recognize the real cause if anyone can. Still, the number has only spiked *since* the inception of my Harvoni treatment, so it's hard for me to believe that they are not some how connected.

Charlie



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Charles McHenry
fourlocos


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I have a FDA report from Oct 2014 to March 2015 of reported side effects they have received. 

http://www.filedropper.com/harvoni2275-detailedreport

As far as your Hep doctor goes, other than my primary doctor I have found that the treatment doctors do not want to hear anything but sunshine and rainbows when it comes to Harvoni.  I have never been discounted as poorly as I was while on treatment.  It felt like "move along, your treatment worked, stop complaining".  

 

 

 



__________________

GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!
CharlieMac


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Hi all,

I'm a newbie, genotype 1(b), with a fibrosis range of F2-F4. I was prescribed a 24 week Harvoni regimen, and I've got a question for the forum. I'm hoping someone can help me understand after being summarily dismissed by my hepatologist with the suggestion that I just not pay attention to lab results. At the beginning of my treatment, 13 weeks ago, my ANA (anti-nucleaic antigen) was negative. As I've had "drug-induced" Lupus before, 24 years ago when I was treated with non-pegolated Interferon for two years (no Ribivirin), I was concerned when just recently I started to feel "off." So I asked my primary, an old friend, to include an ANA with my routine testing. Something my hepatologist deemed unnecessary at the time. Well a month ago my ANA was seriously elevated at 5.35, then just last week it spiked to 8.05. That's an alarming trajectory/increase, and I was naturally concerned. When I pinged my Hepatologist, he implied I shouldn't be reading labs and Harvoni categorically did not cause drug-induced Lupus. I have diligently searched the literature and found no supporting evidence to that assertion, and when challenged, my doc declined to produce any. What I did find was alarming. A Wall St. Journal blog post reporting that patient advocate groups sued Gilead earlier this Summer for access to data they say is being withheld. http://blogs.wsj.com/pharmalot/2015/06/29/fda-is-sued-by-advocacy-groups-that-want-gilead-hepatitis-c-trial-data/. So does anyone have any recent, quality information on this subject? Or an experience that may help me understand what to do next?? I'm a former RN, and former board of directors member of two clinic systems; and I still can't get any answers I can live with.

Thanks in advance,

Charlie @DonCarlitos



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Charles McHenry
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