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Author Topic: lingering side effect  (Read 18197 times)

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Offline arjuna108

  • Member
  • Posts: 8
lingering side effect
« on: April 16, 2015, 01:52:28 pm »
Hello, I am in my seventh week of Harvoni care. My last blood test indicated normal liver enzymes and undetectable Hep C Virus.  That is good news. 
 
The bad news is that I have had a nagging respiratory condition that include wheezing, cough, and clear flem being brought up.

I am wondering if anyone has had this side effect.  I see an acupuncturist weekly and take some Eastern herbs which did alleviate some of the more severe ache in my chest at the onset.

Anyway this is my first post, I am new to the Forum and do so appreciate the posts that are here.  They provide a ground and a calming tonic for me.

Thank you
Arjuna

Offline dragonslayer

  • Member
  • Posts: 873
Re: lingering side effect
« Reply #1 on: April 16, 2015, 02:23:21 pm »
Welcome to the forum!    Just curious.. How long have you had this respiratory condition?
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline arjuna108

  • Member
  • Posts: 8
Re: lingering side effect
« Reply #2 on: April 16, 2015, 02:32:32 pm »
I have had this pretty much from the onset of taking Harvoni, over six weeks ago

Offline dragonslayer

  • Member
  • Posts: 873
Re: lingering side effect
« Reply #3 on: April 16, 2015, 02:35:24 pm »
Havent quite heard of this one yet. .Maybe some others will chime in.  I managed two colds with symptoms like yours while on treatment, but Im having the same thing now 12 wks post treatment.. Obviously, mine is a cold..  Maybe some others can shed light.. Best of luck to you toward svr.. Keep us updated.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline arjuna108

  • Member
  • Posts: 8
Re: lingering side effect
« Reply #4 on: April 16, 2015, 02:43:51 pm »
Yes, I will. I contacted my physician and made inquiry about this.  We will see what comes of it.

many thanks for your time and concern.

Arjuna

Offline arjuna108

  • Member
  • Posts: 8
Re: lingering side effect
« Reply #5 on: April 20, 2015, 01:16:06 pm »
well it turns out I have had pneumonia on my right side all this time.  my bad for assuming it was flu-like side effects of Harvoni.
being treated now.     

Offline atomic dog

  • Member
  • Posts: 160
Re: lingering side effect
« Reply #6 on: April 20, 2015, 07:27:14 pm »
Glad you got a diagnosis. Hope you can clear that up along with the Hep C. Hang in there.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline dbdlb

  • Newbie
  • Posts: 1
Re: lingering side effect
« Reply #7 on: April 22, 2015, 10:46:52 am »
Hello...new also to this forum.   I also have the exact same side effects you are describing after approx. 4 weeks into treatment.  Have also read on other sites, other people have said this as well..upper respiratory infection.  However, was told also it is not from Harvoni.  Interesting though, when I contacted support for Harvoni and pharmacy in referenced to the medication my physician is prescribing, was told it is alright to take; however, the nurse advised me that during clinical trials they really did not test for antibiotics.

So the bottom line was, when I called and asked if it was alright to take this antibiotic I was advised it was alright to take, only because it is not on the list, which in theory it was not actually tested in clinical trials.

I do believe, for myself anyway, that there is some kind of link between upper respiratory infection and Harvoni.

Offline arjuna108

  • Member
  • Posts: 8
Re: lingering side effect
« Reply #8 on: April 22, 2015, 12:15:55 pm »
Yes I agree that there is some connection as well. I too, called my doctor to ask about antibiotics since it was prescribed to me out of state in emergency room setting.
Response I got that it was OK to do antibiotics while on Harvoni.

Thank you for your letter and I do hope you are doing better with respiratory.

I am on the fifth day of antibiotics and am feeling much better but also feeling poisoned by the antbiotics.    Taking probiotics as well.

stay healthy


Offline EleanorB

  • Member
  • Posts: 14
Re: lingering side effect
« Reply #9 on: April 22, 2015, 01:59:36 pm »
Actually, if you read through the other posts, upper respiratory side effects, including phlem and a dry cough are pretty common. I'm in my 5th week and I've had them since beginning treatment. This is NOT allergies or a cold - it does not respond to medication for either.

Hope this helps. I'm hoping it will go away when I finish treatment.
Hep C infection probably via transfusion 1976
Known positive since 2007
VL 500,000
Harvoni start date 3/13/15
UND as of 4/9/15 (4 weeks)

Offline arjuna108

  • Member
  • Posts: 8
Re: lingering side effect
« Reply #10 on: April 22, 2015, 03:50:50 pm »
Yes I agree they are common and my visit to the emergency room indicated that x-rays showed slight pneumonia on right lung...go figure

here's to quick and easy recovery for all of us

Offline BubbaT

  • Member
  • Posts: 267
Re: lingering side effect
« Reply #11 on: April 22, 2015, 07:15:51 pm »
Yes I agree with Eleanor,

I have had this same coughing, dry cough, and the phlegm for 3 weeks, but, I'm not taking antibiotics or anything until 4 more weeks after I finish tx.

Start week 9 next Tuesday, I can get through without antibiotics, I'm using lots of lemon water and eating lean..
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline atomic dog

  • Member
  • Posts: 160
Re: lingering side effect
« Reply #12 on: April 22, 2015, 10:41:56 pm »
Always best to get a nagging cough and/or chest pain and/or fever checked out. Several people on this forum have written off their symptoms because they thought it was a side effect only to learn they had pneumonia. Play it safe.
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline arjuna108

  • Member
  • Posts: 8
Re: lingering side effect
« Reply #13 on: April 22, 2015, 11:42:14 pm »
I'm with you atomic dog.  That's exactly what happened in my situation. Feeling tons better having checked it out, found out what it was and taking meds for it.

Here's to all of us getting the clear and correct information and acting accordingly for better health

Offline atomic dog

  • Member
  • Posts: 160
Re: lingering side effect
« Reply #14 on: April 23, 2015, 12:32:28 am »
Cheers to that!
Infected 1969, dirty needle
Geno 1a
Stage 2 fib, some necrosis
TX naive
1/29/15 ALT61; AST43
2/16/15 Started Harvoni; VL 1.5 m;
2/19/15 ALT40; AST24
2/29/15 ALT29; AST25
3/9/15 ALT28; AST25; 
3/9/15 < 20 IU/mL (3 wks) HCV RNA remains 'detected'
3/24/15 ALT30; AST25;
3/24/15 <20 IU/mL (5 wks) HCV RNA
4/10/15 <20 IU/ml (7 weeks) HCV RNA
4/20/15 ALT36; AST27
4/20/15 UND
5/11/15 UND (EOT); ALT33; AST25
6/11/15 UND; ALT 34; AST 29
8/14/15 UND
11/15/15 SVR, 24-wk EOT

Offline EleanorB

  • Member
  • Posts: 14
Re: lingering side effect
« Reply #15 on: April 23, 2015, 08:20:47 am »
Yeah, it's interesting to see how many have indeed had pneumonia as a side effect. I've got 2 weeks to go and am both stubborn and stupid (plus for me its more in my sinuses than chest), so I am rinsing my nose with saline and hoping I can get through without more meds. But I agree it is better to be smart and get yourself checked out if there is any doubt. Walking pneumonia can be a killer and we all want to live, right?
Hep C infection probably via transfusion 1976
Known positive since 2007
VL 500,000
Harvoni start date 3/13/15
UND as of 4/9/15 (4 weeks)

Offline dragonslayer

  • Member
  • Posts: 873
Re: lingering side effect
« Reply #16 on: April 23, 2015, 09:14:29 am »
Yeah, it's interesting to see how many have indeed had pneumonia as a side effect. I've got 2 weeks to go and am both stubborn and stupid (plus for me its more in my sinuses than chest), so I am rinsing my nose with saline and hoping I can get through without more meds. But I agree it is better to be smart and get yourself checked out if there is any doubt. Walking pneumonia can be a killer and we all want to live, right?

Eleanor, isnt pneumonia caused by bacteria?  How can you catch pneumonia from Harvoni?
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline EleanorB

  • Member
  • Posts: 14
Re: lingering side effect
« Reply #17 on: April 23, 2015, 09:38:05 am »
Well, pneumonia is just an umbrella term for an inflammation of lung tissue that can be caused by either viruses or bacteria. The classic is indeed a bacterial infection. I'm not talking the specifics here, because at this point there would be no way to know why so many Harvoni patients are presenting with respiratory congestion.

Given that you've always got lots of bacteria present in the body, if you have lingering congestion in your sinuses or lungs - say caused by the Harvoni, for whatever reason - the bacteria that are already present could set you up for a sinus/pulmonary infection. Pneumonia is often secondary to a primary infection, using this mechanism.

So back to my case, and my sinus congestion (which is NOT based on a regular cold or allergies - so I think it is a Harvoni side effect), I am playing it safe by rinsing my nose with sterile, isotonic saline solution (I use a syringe that I can boil between uses to eliminate risk of infection). That keeps the mucus from building up and being a breeding ground for a secondary infection. This is what I would do if I had a bad head cold too.

To finally answer your question: pneumonia couldn't be specifically caused by Harvoni, but it might be a secondary side effect, if congestion is a primary side effect. Enough people on this forum have talked about congestion for me to consider it a side effect.

As an aside, that goes for the transitory rash too - it's not a "classic" side effect, but enough people have mentioned it that I think it is indeed a side effect.

We're all guinea pigs here, so the benefit of this forum is that we can pool our knowledge and ultimately feed it back to the FDA and Gilead.

I can't remember who it was, but someone on the forum pointed out that the initial success rate of Interferon + Ribavirin was supposed to be 50% and ultimately turned out to be 30%. I wonder what the ultimate success rate of Harvoni will be. We all hope it will be the 95%+ number they tell us, but who knows? We'll hopefully all be smarter by sometime next fall.
Hep C infection probably via transfusion 1976
Known positive since 2007
VL 500,000
Harvoni start date 3/13/15
UND as of 4/9/15 (4 weeks)

Offline arjuna108

  • Member
  • Posts: 8
Re: lingering side effect
« Reply #18 on: April 23, 2015, 01:06:57 pm »
thanks Eleanor B, atomic dog and everyone on this thread for chiming in. I felt so alone and nervous about what was happening and this forum has helped me relax hearing
from others.

I also have been doing Neti pot regularly for sinus congestion.  Feeling much better this day as the rattle and wheezing from my chest have subsided, cough is non-existent and mostly now just tired.

here's to our continued health and well-being

Arjuna

 


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