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Hep C Discussion Forum -> On Treatment -> new to treatment - strange side effects
Post Info TOPIC: new to treatment - strange side effects
Cinnamon Girl


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RE: new to treatment - strange side effects
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Yes Mopey, you can look forward to the time when you`ll also be able to say "I had genotype 3"!  

It`s a good feeling...you`ll get there!  smile



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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.

 

 
Mopey


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Thanks Cinnamon Girl. Nice to see plenty of people have gone before me and not only gotten through treatment, but also achieved SVR. Gives me hope.



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42 year old male

Genotype 3; co-infected with Hep B.

Ended 24 week course of Interferon + Ribavirin on November 17, 2014. UND at end of treatment, relapsed 3 months post-TX.  

ISHAK Score: Fibrosis 5-6/6    Grade 6/18

 

 

 
Cinnamon Girl


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Hi Mopey, just like to say welcome from me too, glad you found us.

I live in the UK and also had genotype 3 and did the same treatment as you are on.  I know how hard going it can get and I`m sorry to hear you`re suffering from these troublesome side effects.  The ear infection must be so painful and it`s reassuring to hear your nurse took immediate action, having a good medical team really makes such a difference.  It`s not uncommon for people to develop infections of various types while on tx when our immune systems are working below par and once the antibiotics start kicking in you should get some relief pretty quickly.

It`s early days for you yet after starting tx only 2 weeks ago and quite often people find it gets easier once their bodies have become more accustomed to these heavy duty drugs. 

Best of luck, keep us posted!

 



__________________

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.

 

 
Mopey


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Posts: 23
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Thanks for the replies everyone.

I saw my nurse today and thankfully, she took my side effects very seriously and immediately had a doctor look at my ear. Turns out I have an ear infection, and they've given me antibiotics and recommended paracetamol. I can't recall ever being in this much pain before. I groaned all night and not only could I not sleep, but neither could my wife! 

@Tig, The bleeding was on the surface of the skin. It happened once before as well, a couple of years ago as I recall, well before I had started treatment or even knew I had hep c. I'm keeping a close eye on it but it seems okay for now.

@Huey, you are very lucky you managed to escape interferon, the stuff is nasty. I'm currently in the UK, and here the standard treatment is still interferon and ribavirin. Can't complain though, as I'm happy to be getting free treatment. My wife is an American citizen, and we're planning on moving back to the U.S. next year, and I'm already worried about health insurance costs. But, one crisis at a time!

 



__________________

42 year old male

Genotype 3; co-infected with Hep B.

Ended 24 week course of Interferon + Ribavirin on November 17, 2014. UND at end of treatment, relapsed 3 months post-TX.  

ISHAK Score: Fibrosis 5-6/6    Grade 6/18

 

 

 
TazKat


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I have gooten face swelling & back muscle pain. not to mention the fatique..  going thru a lot right now with son & his crazu ass wife. she snaps a lot & my two tin grandson have to lisen to it. they are blaming it on steroids. but not 4 yrs worth. she said some mwan ass things to me about me being on my death bed & blah blah blah. I will keep up with what is going on ih those twin, but I don't need them. they don't do nothing for me around here anyway.. depressed..no

but u keep on keeping on. we can bet this. I sure am. I hope. gonna try to get doc to put meo n bed rest thurs-mon just to de stress and catch some energy. this stress is not doing me any good at all..  peace out..

 



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Huey


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Hi,, I have your genotype but am not taking any shots.  Sovaldi and Riba, 24 weeks.,  Your situation interest me because you are doing the Tx i didn't have too.  I have NO experience with interferon so I can't be much help.  Others on here are more qualified on this Tx. than Myself/



-- Edited by Huey on Monday 16th of June 2014 10:46:28 PM

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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Tig


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Hello Mopey,

I'd like to welcome you to the forum. I'm also sorry to hear about your side effects and understand how uncomfortable they can be. I experienced several different problems throughout treatment and I hope that you can get yours under control sooner than later!

I had some real problems with my ears too. I did a few things that helped me greatly. First, don't stick anything into your ear canal, like a Q tip applicator or cotton swab. They can irritate the tissue inside your ear canal even worse. I had to take antibiotics the first week when the pain was so bad, I was sure I had an infection but I'm not so sure now. I do know that there was a lot of swelling and I believe (as did my doctor) that it was the result of the Ribavirin. I had trouble with rashes everywhere and it apparently affected my ears as well. I started using a 50/50 dilution of hydrogen peroxide twice a day. I just poured it into my ears and kept my head tilted to keep it in there for about 5 or 6 minutes, it will bubble like crazy. Then rinse it out with fresh water. I had noticed some nasty yellow drainage coming from my ears when all of the trouble started and within a week it went away. I eventually just washed them with the peroxide solution once a day after I got it under control. I do know how unpleasant it was and if this continues, by all means seek out a doctor and be sure there is nothing else going on. But ribavirin is well known for causing skin irritation just about everywhere. I wonder if the bleeding on your testicle isn't because of that too. The bleeding you speak of, is it on the surface of your scrotum (skin) or are you bleeding from the penis? If you are bleeding from the penis, you should immediately seek a physicians care. But if it's a raw rash, I would treat it with first aid cream, or ointment. Be very careful when showering or bathing. Hot water can make these rashes worse, so try to keep the water as cool as you can tolerate and I found bathing every two to three days helped control the outbreaks.

I hope you're feeling better soon. Let me know how that bleeding is, that concerns me and I hope you get that looked at by your treatment physician soon. Good luck and keep in touch!

Tig



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Tig

68yo 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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Isiscat2011


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Hi Mopey:  

Drugs can have strange side effects for some people.  Doctors call them "idiosyncratic." They are not listed as side effects by the drug manufacturers unless a high enough percentage of people taking the drug experience them.  I had some unreported ones during tx including facial swelling, blisters on my fingers, a cyst on my eyelid, and even a few disappearing freckles (where did they go?).  All returned to normal post-tx.

I know that hot feeling you are describing; it is like a low grade fever that comes and goes but with no temperature.  It can be caused by the hepc virus.  I had it for a couple of years before tx.  Suddenly, when I started tx, however, it improved.  It is still better than it was before tx, despite tx failure, but seems to be returning as my viral load climbs back up.  

It could be that tx is bringing out some symptoms that are caused by hepc or it could be the tx.  I wish I had an answer for you but I don't.  I just know the feeling you are describing.  Oddly enough I also had sporadic left ear pain prior to tx which has improved.  Makes me think these things could be related to the virus.  

If you have fluid in your ear or are having hearing loss, however, you need to get it checked out by a physician.  Ditto with the bleeding if that returns and I would talk to my treating physician rather than an after-hours doc.   



-- Edited by Isiscat2011 on Monday 16th of June 2014 10:01:39 PM

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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Mopey


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Hi Everyone,

Been reading for a couple of days, first time posting. Really thankful that forums like these exist. I started treatment 2 weeks ago (June 3rd). I am a male, 42 years of age, an I am on a 24 week course of PegInterferon and Ribavirin. I have Genotype 3, with a viral load of 469,83. I also have compensated liver cirrhosis and moderate portal hypertension. 

 

I found out that I was infected a little over a year ago, much to my utter shock. I think I must have gotten infected when I was growing up in India, sometime during the late 80s/early 90s. It has been a really devastating process to find out that my liver had incurred such damage without my even realizing it. I have never had any symptoms and my health is generally very good, so I hope that is a good sign. My first week of treatment I had almost no side effects, but the second week was a complete 180, with very severe side effects. I had the flu-like symptoms after interferon, which I understand is normal. But the past couple of days, I am having what I understand are ribavirin-related side effects, namely severe hot flashes and an ear ache. However, I can find very little about these side effects online.

The hot flashes have been keeping me up at night and generally make me miserable. They are not the same as having a high temperature or sweating a lot, they feel very different. From reading online descriptions, they sound a lot like what post-menopausal woman would get. This was really bad about 24 hours ago, but since then I've gotten some relief from drinking lots of orange juice. But I still get them, sometimes for several hours continuously. Any idea about what could be causing this? And if there is anything that could alleviate it? I cannot imagine living through this for another 22 weeks.

I have also had a terrible ear ache in my left ear for the past week, but now it feels like there is some pus or liquid filling up in there. I also have some minor hearing loss in that ear.

Yesterday morning, I woke up to find that one of my testicles was bleeding. There was no pain or trauma to the area, but there was quite a bit of bleeding. The bleeding stopped shortly thereafter. I went to see an after-hours GP, who told me it was probably unrelated to the treatment and that I had nothing to worry about.

Any thoughts or suggestions would be greatly appreciated.



__________________

42 year old male

Genotype 3; co-infected with Hep B.

Ended 24 week course of Interferon + Ribavirin on November 17, 2014. UND at end of treatment, relapsed 3 months post-TX.  

ISHAK Score: Fibrosis 5-6/6    Grade 6/18

 

 

 
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