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Author Topic: Just started treatment for hepc 2 and side effects are awful  (Read 13257 times)

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Offline MollyMadness

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  • Posts: 8
Just started treatment for hepc 2 and side effects are awful
« on: February 16, 2013, 06:34:19 PM »
I started on January 11 and have done 6 shots of Interferon so far with 2 riba pills per day and feel awful.  Extreme tiredness is the worst. Plus I have itchy bumps on my chest and back, mouth is sore, and my face looks like I've aged 25 years.  I'm all drawn looking with wrinkles; bones ache, feel sick 24/7.  Does this keep getting worse week after week or will I start to feel better at some point?  Doctors are no help.  Last blood test showed no detectable Hep in my blood stream, but very low red and white blood cells which I guess means I'm anemic.  This is torture!  No one to talk to.  Doctors dont return calls. Any help would be greatly appreciated before I give up.

Offline Ann

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Re: Just started treatment for hepc 2 and side effects are awful
« Reply #1 on: February 16, 2013, 07:30:15 PM »
Don't give up, Molly! It's not forever and you can do this. I know, I did it for 52 weeks. It IS tough, but it's doable.

Think of the benefits when it's over - no more hep C and a healthy future to look forward to. The side-effects of treatment are a walk in the park compared to end stage liver disease.

Get yourself some moisturiser and use it. Your skin will get dry and itchy and a good moisturiser is your friend.

Get a soft toothbrush - I had to use one designed for toddlers while on treatment.

Talk to your doctor about supplements and make sure you're eating as well as you can. I understand that you may have little appetite, but you have to eat.

Drink as much water as you can. This will help in general and it also may help with your sore mouth.

Talk to your doctor about taking paracetamol or acetaminophen for the aches and pains and find out what your highest recommended daily dose is and don't exceed it.

Above all, hang in there. Take things one day at a time and remind yourself that it won't last forever. Mark the days off on a calendar if it helps - I did. Before you know it you'll only have weeks left.

And obviously, make sure you go in for at least monthly lab work so they can keep an eye on your CBCs.

You can do this!

Ann


Offline MollyMadness

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Re: Just started treatment for hepc 2 and side effects are awful
« Reply #2 on: February 16, 2013, 09:10:30 PM »
When do you start to feel better?

Offline Ann

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Re: Just started treatment for hepc 2 and side effects are awful
« Reply #3 on: February 17, 2013, 07:06:52 AM »
When do you start to feel better?

Honestly? About two weeks after I finished treatment.

But the feeling I get when I get another undetectable viral load test result makes all the downsides of treatment well worth it. I've had an UD hep C VL for going on eleven years now. When you compare eleven years (and counting!) to one year of discomfort, the one year becomes a drop in an ever larger bucket.

The trick is to find ways of coping with the side effects. Dry, itchy skin? Treat yourself to a top-shelf moisturiser. Dry mouth? Carry a water bottle with you at all times. Aches and pains? Get your doctor to prescribe something or recommend an OTC treatment. Tired? Take as many naps as you need. Not able to eat much? Try protein shakes.

Above all, remind yourself that this is not forever. I can't stress that coping strategy enough. What's one year (or six months) in the face of the rest of your life? Take it one day at a time and you'll be surprised how quickly those days go by. Particularly if you're napping a lot. ;)

In your first post you asked, "Does this keep getting worse week after week or will I start to feel better at some point?" It's not likely to keep getting worse, but it may not get much better either, unless you actively pursue coping techniques.

How often are you seeing your doctor? You should be seeing him or her at least once a month while you're on this treatment.

Rather than relying on call-backs, make sure you write down a list of questions to ask when you're in the office, face-to-face. Also write down the answers, because if you're anything like me during treatment, your short-term memory may be impaired and you'll need to have the answers written down to correctly remember them. 

If your doctor isn't helping you find ways to cope with side-effects, he or she should be and you may need to be a bit more vocal about it. Remember, the squeaky wheel gets the grease. Next time you're in the office, demand that you are given time to go over your list of questions and concerns and that solutions are offered. Be proactive about your health.

And remember, your doctor is your employee. It doesn't hurt to remind them of that fact now and then.

Hang in there! You'll thank yourself when you've achieved a sustained response.

Offline karenhoyt

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    • IHelpC
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #4 on: February 20, 2013, 08:06:55 AM »
I just read your post. My heart goes out to you. It hasn't been that long since I was feeling that way. You will find a rhythm to the treatment. I promise. Are you getting enough sleep? Are you on a protease inhibitor like Telaprevir? Sorry to ask so many questions, but it helps to know what you're dealing with. You'll be in my thoughts today.
There IS life on the other side. Hang in there. xoxo Karen:)

Offline MollyMadness

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Re: Just started treatment for hepc 2 and side effects are awful
« Reply #5 on: February 21, 2013, 07:42:55 PM »
Thanks for the responses. its just too bad the doctors don't want to hear about my complaints.  none of the otc items i bought have helped at all for the rash, pain, tiredness, bad memory, depression, etc. etc.  there must be something i can take the helps a little bit - but what???

Offline MollyMadness

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Re: Just started treatment for hepc 2 and side effects are awful
« Reply #6 on: February 25, 2013, 02:55:20 PM »
Well I just found out that the reason i've been feeling so bad this past week and a half is because I came down with a bad case of bronchitis and major sore throat.  It's not the treatment-thank god!  Hopefully the antibiotics and air-puffer will hellp me get over this new problem. Plus I developed a tooth ache!  Can't wait for this to END!

Offline karenhoyt

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    • IHelpC
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #7 on: March 01, 2013, 03:55:04 PM »
Glad you're getting some relief! How long are you treating for? It's not easy. There will be good and bad days.
It will be sooo worth it to be rid of the virus. Hang in there. Did you check out my blog? It links to my website too. http://www.ihelpc.com
I survived almost a year of treatment. No fun. But your liver is already feeling the effects of having NO detected virus! It's getting a break... xoxo Karen:)

Offline MollyMadness

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  • Posts: 8
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #8 on: March 09, 2013, 07:16:10 PM »
i'm still sick and cbc showing all levels below normal. i guess because of these infections.  my boss at work is extremely angry with me for missing work and threatening to fire me - now i have this added stress. will have to go in and work while sick.  this is so hard. cant wait to read your blog. thanks

Offline jberlin

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  • Posts: 145
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #9 on: March 11, 2013, 10:58:10 AM »
So sorry Molly....  Please try and tough it out!  I did 72 weeks total, the latest was 24 weeks of triple therapy last year.  We need a "I survived Hep C treatment" t-shirt!  It ain't fun!  But worth it!  You likely need procrit shots to boost your red blood count, which I also had.  Yay, more shots!  What geno are you?  You are are on the dual therapy, so I assume geno 2?  Count down the days, they will pass!  Also there are some great video diaries and social help I strongly suggest:
facebook.com/pages/Hepatitis-C-Awareness/103970386311455?fref=ts
« Last Edit: March 11, 2013, 11:16:28 AM by jberlin »

Offline charlotte

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Re: Just started treatment for hepc 2 and side effects are awful
« Reply #10 on: March 20, 2013, 07:33:10 PM »
molly, i just wanted to say it does get better, i used aveeno soaps and moisturizers, and benadryl helped with the itching, I was on the triple therapy, which went for 6 months and now im done, it was really tough, when i couldnt eat, i ate things like ice cream, I don't know why but only sweet things tasted good. eat whatever taste good, so you dont loose too much weight.

Offline MollyMadness

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  • Posts: 8
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #11 on: April 13, 2013, 05:52:42 PM »
Thanks. am trying antihistimines but now i'm starting to get really depressed and emotional. crying, complaining, etc. sooooo super tired too.  No one understands so it's terrible.  there should be something available for these side effects or at least something to make you feel better because this is true torture!

Offline jberlin

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  • Posts: 145
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #12 on: April 14, 2013, 11:25:51 PM »
The interferon can make you very emotional.  I would get depressed and angry.  Focus on the end game which is beating this virus forever and the time will pass.  As I said, I did 72 interferon shots, and survived, and I am not a young man!  Be strong - we know what you are going through because we have been there.  If on facebook, come by the Hep C group and there are some interesting videos and posts there.  https://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455?fref=ts  Take it one day at a time!

Offline jack

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Re: Just started treatment for hepc 2 and side effects are awful
« Reply #13 on: April 29, 2013, 04:43:02 PM »
Remember this, tell 10 average  peeps that you have Hep C and 8 of em don't care and the other 2 have something better to talk about. If you are lucky enough to have someone there for you then you should thank God ! I did my 6 month treatment for geotype 2, undetected all the way through... I relapsed 3 months later. Now almost a year later from that with more of the same drugs plus 32 weeks of Victrelis I have become a different person, I still feel the full weight of this terrible disease and as hard as it was I made it through all of the nasty side effects that the 3 drugs had to offer. Nothing has ever beat me up like interferon has done. It was an easy decision because I want to live. July 4th will be my last shot of interferon and the end of ribavirin [ribasphere] wish me luck ! The word "undetected" has little meaning anymore and the stats on cure rates are suspect to me. I believe right now we all have roughly a 50 / 50 chance. I have been on this computer going on 2 years and have read anything and all things concerning our disease. On the positive side there are at least 3 or 4 pharmaceutical companies that appear to be making headway on new drugs. some they say will do away with the terrible interferon shots. Hopefully someone will come up with a drug to hit the disease head on to kill it instead of just chipping away at its ability to replicate itself. All in all I am very grateful for all the researchers that have brought us this far as their impossible task of trying to rid us of these evil lil nano devils that are tougher than we are, and doing it without killing us  is quite a feet to accomplish but hey ! they did it with another blood borne virus called polio......

Offline jberlin

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  • Posts: 145
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #14 on: April 30, 2013, 02:35:08 PM »
Jack, the protease inhibitors (Victrelis/Incivek) certainly hit the virus where it hurts - reproduction - and double the odds of cure if you are responsive.  I think if you are responsive your odds are much better than 50/50 from the studies I have reviewed.  I am relapser myself (geno 1), and did my 2nd treatment (Incivek) last year (so 72 total interferon shots for me), clear at 3 months post treatment and coming up on 6 month blood test (fingers crossed).  And, you are right, lots of promising new drugs in trials.  But, the main point I wanted to underscore from your note is to not do this treatment alone!  You need a buddy, whether significant other or close friend, it is too tough a treatment to not have some support.  These forums are helpful, as are the FB pages and youtube videos, but they are a far cry from a real time helper.   You will beat this disease this time, I just know it!  -jack

Offline MollyMadness

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  • Posts: 8
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #15 on: May 15, 2013, 03:30:26 PM »
I am now on week 18 and the side effects have gotten so bad now that I can no longer work.  I can barely stand up, let alone walk.  Also, cannot think or concentrate and feel like crying all the time. Can't eat, coughing up plegm constantly and have not interest in anything.  Also, severe pain in neck, shoulders, feet and back.  If I relapse, I will not do this again!  I'll wait for new drugs.

Offline jberlin

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  • Posts: 145
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #16 on: May 15, 2013, 05:16:36 PM »
So sorry Molly - I did 72 weeks in total - and it ain't fun!  Can you give us details on your viral load?  When in your treatment did you go UD?  Are you set to end at 24 weeks?  What genotype are you?  Geno 2 I would guess since you are on the dual therapy.   Molly, hang in there - beating the disease is worth it.  I did 48 weeks, relapsed, then 24 weeks last year and am now cured!  Hold on girl, hold on!  I found this and other videos helpful, so hope you do too:  http://www.youtube.com/watch?v=QokLEMqSvXc   -jack

Offline karenhoyt

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    • IHelpC
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #17 on: May 17, 2013, 12:08:06 AM »
Molly - Hunnyo, you don't sound good at all. Have you talked with your doctor? Are you using an anti-depressant? I hope that a support system is in place for you. You need help with meals and to keep you propped up until you can get around again. Sleep. Rest. Drink lots of water. Take care of yourself. Keep us posted. You have some great encouragement on this forum. Stick with it. xo Karen:)

Offline spider123

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  • Keep On Keeping On.....Pay It Forward
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #18 on: May 29, 2013, 10:44:50 AM »
To;MollyMadness,

     Yes....Side-Effects are Bad and Interfuron and Ribavirin are Nasty Meds !
     But...The Alternative..(Liver Cancer) or Cirrosis is worse !
     First..Dont Give Up !  In the end of your Treatment it will all be worth it !
     I am Not a Doctor but, I Survived  48 Weeks of Interfuron-2a Injections and 1200 mgs of Riba per day !   Talk to your Doctor and his Team, they are there to
     Help you !!!!  Take Notes and keep your own Journal !   ASk Questions and take someone with you to Advocate for you !  The Fog you get with the Meds, you will need someone to help listen for you !  All the recommendations given in the other posts are Good Ones !   Ask about Diet,  there is a list of Foods that will Help your Liver stay Healthy and also Foods that are not Good for your liver !   Also ...ask your Doctor and his Team about the Helper Meds ?    Make sure they do "CBC' Labs as well !   Tell your Doc about all your Side-Effects !  Be patient, and your team will Help ! Educate, Yourself, Get involved in your Treatment, Keep Copies of your Labs !   Huggs     :)

Keep On Keeping On,

spider123 

Offline karenhoyt

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    • IHelpC
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #19 on: June 07, 2013, 03:29:56 AM »
Spider - You're enthusiasm is contagious! It is easy to see how hard you worked to finish treatment. Now you are enjoying the rewards and helping encourage others. I'm glad you made it.
Molly - I hope you are finding some relief. xoxo Karen:)

Offline spider123

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  • Keep On Keeping On.....Pay It Forward
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #20 on: June 07, 2013, 01:20:26 PM »
Karenhoyt;

      I,  Appreciate your Words of Kindness and Support, Back after, I, had Finished,
My Treatment, I,  Remembered All of those Angels of Hope and Encouragement,  that were, Basically,  Good People Like Yourself,  who Took the Time, To Advocate for me !!!   Around here In Connecticut,  the Support Groups were too Far away for me, so I, had to Find another way !   One Day I just Typed Hepatitus-C  Into Google, and Presto,   I found some online Places for me to Share and Get Support !

On...One of those Websites I, found someone in California,  who was my Guardian Angel and Encouraged me !   So, after, I, achieved "SVR"  in August 2009,  Martha,
E-mailed me and Suggested I, become an "Advocate for Hep-C to Help Others !
As....I, had Said and I will Repeat, I did not Do it all Alone !!!   And  I, can not Forget my other Half, who, without her,...I am Not so Sure I would have made it this Far ?
She Provided the only Income in our Household and it was a Struggle But We made it !  She put up with the Moods and the Depression because, I,  would not take the Meds for that !  Brain Fog did it's Number on me too!  Then,....I, saw this movie about "Paying It Forward"   and Now as an Advocate that is what I give Back !   :)
Someone shared this with me !   " Fear "  is a Disease that Eats away at  " Logic "
and makes Man Inhuman-   Marion Anderson !

Keep On Keeping On,    8)

Huggs to All  Heppers !

spider123

« Last Edit: June 09, 2013, 08:55:39 AM by spider123 »

Offline spider123

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  • Keep On Keeping On.....Pay It Forward
Re: Just started treatment for hepc 2 and side effects are awful
« Reply #21 on: June 07, 2013, 01:34:33 PM »
Mollymadness;

         Try and Stay Encouraged, I know it is Easier said than Done !
You are not alone...you have an Army of Supporters, that are all Good People here !   :)

You can Beat That Dragon with a,  Little Help From the Friends you make Here !
Remember...While you don't Feel So Good the Meds are Killing the Nasty Virus !!!

I am Not a Doctor, and I, am just Sharing the things I know, because I went thru some of them !  Hep-C......Effects each and Every Person, Differently !

But...In the end we all become Winners !    8)

Huggs 

spider123

« Last Edit: June 07, 2013, 01:36:41 PM by spider123 »

 


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