Welcome, Guest. Please login or register.
March 29, 2024, 08:04:22 am

Login with username, password and session length


Members
  • Total Members: 6307
  • Latest: golfer
Stats
  • Total Posts: 55125
  • Total Topics: 4851
  • Online Today: 157
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 114
Total: 114

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: sick and tired of being SICK!  (Read 20922 times)

0 Members and 1 Guest are viewing this topic.

Offline kickinhepc

  • Member
  • Posts: 14
sick and tired of being SICK!
« on: February 13, 2014, 05:39:45 pm »
I'm finishing up week 5 on my dual treatment for Hep C genotype 3 i'm taking 7 ribovan pills daily and one pegatron shot a week. I haven't received results for my four week blood test I pray this is working because I feel like CRAP! On week four my shot didn't work the preloaded clicker pen was faulty and didn't release the pegatron. I felt awesome for about a week and realized something was wrong because I was feeling great....sure enough i broke the locking mechanism on the clicker pen and to my horror the medicine was still there.....groan. So lucky me had to take another shot right away and then my usual one day later. Right now i feel so emotionally overwhelmed-depressed and could just fold into an emotional unstable heap of tears at any moment. I'm weak and nauseous most all the time- I honestly want to give up and quit I can't imagine another 19 F****N weeks!I'm fortunate to have a wonderful supportive husband and i'm on sick leave from my job I just feel like i want my life back......... :*(

Offline RWEHEPC

  • Member
  • Posts: 34
  • Hep C Geno Type 3
Re: sick and tired of being SICK!
« Reply #1 on: February 13, 2014, 07:10:09 pm »
I am not sure where you are from but here in MI we are lucky enough to have a Medical Marijuana law.  My doctor brought the subject up because it would help with the side effects of the cocktails given if I were to go that route.  I have read pros and cons on both but the pros out weighed the cons during the treatment because it will help with the adherence of the challenging medical regimen.

You might want to look into it.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: sick and tired of being SICK!
« Reply #2 on: February 13, 2014, 08:05:48 pm »
Hi,
You sound miserable. I remember those days, and wish it was easier for you, but obviously it isn't.
Two thoughts - Although it is rare that the "pen" is faulty, if you should ever find yourself in a similar situation, call your doc or pharmacist before taking back-to-back doses. The prescribing instructions would have been reviewed, and most docs would have told you to skip it. Too late now, and hope you aren't in that situation again.

If you just can't take it anymore, its perfectly reasonable to consider other options. With the approval of interferon-free and soon ribavirin -free treatment, its not like there aren't other options.
Keep in touch.
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 kickinhepc

  • Member
  • Posts: 14
Re: sick and tired of being SICK!
« Reply #3 on: February 13, 2014, 08:11:27 pm »
Actually it was my doctor who told me to take my missed shot and then to take my regular shot ad scheduled :( I really dont have any other options this treatment is paid for through insurance and here in canada im not aware of interferon free treatment.  Thanks for your reply♥

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: sick and tired of being SICK!
« Reply #4 on: February 13, 2014, 08:32:06 pm »
Oh, sorry - didn't know you are Canadian - clinical trials would be your only option (the U.S. uses ifn--free hep C treatment for your genotype) As for your doc's instructions, its too late to do anything about it now.
Amazon has free content of parts of my books - perhaps you can find some info to help you http://www.lucindaporterrn.com/
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 jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: sick and tired of being SICK!
« Reply #5 on: February 16, 2014, 11:36:34 pm »
I feel for you because I have been there, twice.  Let us know how your 4 weeks look and hopefully that will give you an emotional boost.  It is a tough experience and all I can tell you after my 72 interferon shots is that it is worth it to get cured!  Talk to us on this board and keep the support of your husband close to you.  Look up fellow Canadian DEVON NICHOLSON on youtube, he documented his Hep C treatment all the way to being cured. There are other treatment diaries up there, like Ana Johnson's, but this was one of my favorites, but she was on triple therapy not the dual, but enjoy: http://www.youtube.com/watch?v=QokLEMqSvXc&list=LLKdMu-H5hwd9_WGDt7zY17A

Do keep us informed.
Hope this helps,
jack

Offline Marilyn666

  • Member
  • Posts: 16
Re: sick and tired of being SICK!
« Reply #6 on: February 17, 2014, 01:00:10 am »
Hey everybody just checking in and needing some inspiration.  I start week 24 tomorrow and i know that is half way there but im so sick and tired of being so sick!!! From constant diarrhea and itching skin to my hair falling out in handfuls.  Please tell me why i am doing this again????? Help me make sense of it because i feel like im losing my clarity and wondering why this is worth it.  I have not told my husband or close family and friends how I am feeling because they would be disappointed in me and lets face it, THEY REALLY DON"T GET IT!!!!  For all the time they say "you got this" or "your really strong".  They have no fucken idea and please excuse my french, im just frustrated.  Ok so now i ranted and im sorry but please, words of encouragement would be greatly appreciated right now,

Feeling sorry for myself,

Marilyn

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: sick and tired of being SICK!
« Reply #7 on: February 17, 2014, 08:36:52 am »
Marilyn, I am so sorry you have to go through this, but you know exactly why, it is to get cured and avoid liver disease.  I looked through your earlier posts and did not see your genotype.  I did see you were responsive at 4 weeks with a very low viral count, and then I think you have been UD since, is this correct?  I assume you have been off the incivek since week 12, and now are on the dual therapy.  Your doctors have said 48 weeks total?  Have you asked them why 48 weeks?  Keep an eye on the end game and let me know.  -jack

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: sick and tired of being SICK!
« Reply #8 on: February 17, 2014, 10:36:36 am »
Hi Marilyn,
We all have our own reasons for undergoing this ordeal. Here were my reasons - see if they resonate with you:
I wanted the chance to live a full life
Cirrhosis is an awful, awful way to die
Hepatic encephalopathy (dementia) is hideous
I was tired of feeling sick and tired
I wanted my brain back
I hate feeling infectious
I wanted to see my grand kids grow up
Marilyn, sometimes we get in a rut and think that we are using all the tools we have to get through treatment. Perhaps you need new tools HCVAdvocate has fact sheets and guides to help you with side effects. Perhaps this is a good time to read them and pick up some tips to help you complete treatment. I put links to the rash and diarrhea fact sheets. Hope this helps. It does get better.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Diarrhea.pdf

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Rashes.pdf
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 Marilyn666

  • Member
  • Posts: 16
Re: sick and tired of being SICK!
« Reply #9 on: February 17, 2014, 11:13:05 am »
Hey Jack and Lucinda thanks for the encouraging words, i really needed them.  Im just having a really bad couple of weeks lately.  Jack im Genotype 1 and i have been undetectable since about week 14 0r 15.  The reason my doc wants me on for 48 weeks is that i didn't respond very well to dual therapy in 2010, so he says the norm for me is 48 weeks.  I won't quit but sometimes it just really gets to me and I feel like its not worth it, but i know it is.  Like you Lucinda i have a beautiful 3 year old granddaughter and a new baby boy is set to arrive on March 30th.  So ..... i will keep thinking of these things and keep going.  thank you both for taking the time to write me, i really appreciate it, Marilyn

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: sick and tired of being SICK!
« Reply #10 on: February 17, 2014, 11:44:27 am »
Lucinda, inspiring and well said... Thanks! -jack

This is what they are basing your treatment on:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/201917s007lbl.pdf

But, I am not sure more recent studies back this up.  Are you seeing a Hepatologist, or a GI?  I don't know your history, I don't know how non-responsive you were 1st time, but if you were UD at 12 weeks on Incivek, I question the additional 24 weeks of dual therapy, especially with the new drugs on the market for geno 1...  Do not base any decision on any statements on this forum, but I would seek a 2nd opinion if there is a liver specialist nearby! -jack

Offline mustmove

  • Member
  • Posts: 3
Itching Cure
« Reply #11 on: February 17, 2014, 12:36:50 pm »
Sonne's # 7
Its a volcanic magnetic clay and It stopped my mothers itching from liver cancer cold!

I take it everyday, not because of itching, but because it binds to heavy metals and pulls them right out of your body (magnetic!)

PS: Radiation is often a heavy metal also

Offline Marilyn666

  • Member
  • Posts: 16
Re: sick and tired of being SICK!
« Reply #12 on: February 17, 2014, 12:40:02 pm »
Jack,

There are no hepatologists where i live, but i really like my GI guy.  That being said, i did read the link you sent and im still not quite sure what it means for me.  When i was treated in 2010, the viral load at its lowest was 3,000.  Thats not really that low.

So this time, I was on Incivek for 12 weeks total.  On week 4 of triple treatment viral load 85, week 12 less than 5 and finally week 15, undetectable.  I am only going by what they tell me.  If you have any links to other information, i would print it and take it to the doctor with me.  I have done this before when i have found information on line and he was quite responsive.  Also my Riba dose is low and has been since i required a blood transfusion.  I only take 2 200 mg pills in the morning and 2 at night.  Im on weekly Eprex shots for my hemoglobin as well. I hope this gives you a better background. 
 

Offline Marilyn666

  • Member
  • Posts: 16
Re: sick and tired of being SICK!
« Reply #13 on: February 17, 2014, 12:45:05 pm »
jack one more thing, when i started treatment this time my viral load was 6 million.
Marilyn

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: sick and tired of being SICK!
« Reply #14 on: February 17, 2014, 01:00:32 pm »
Thanks - given the additional information provided, the additional 24 weeks of dual therapy does make much more sense.  And what i read in the stats is you have about a 79% chance of cure if you complete.  Hope you can suck it up and do it!  Cheering for you! -jack

Offline Marilyn666

  • Member
  • Posts: 16
Re: sick and tired of being SICK!
« Reply #15 on: February 17, 2014, 06:12:58 pm »
Thanks Jack, i kinda figured i had to go the whole 48 weeks.  I will just keep on keeping on and I got some good tips from a friend regarding the hair loss and breakage.  Any little thing that relieves any little symptom is helpful to me.  Thank you for your input.

Marilyn

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: sick and tired of being SICK!
« Reply #16 on: February 17, 2014, 06:38:17 pm »
Keep us and the people around you involved as best you can.  They, hydration & ibuprofin are your best friends.  The emotional roller coaster should be a bit better post Incivek, but you are fighting medicine that is attacking the good with the bad, like blood cells and hair follicles.  Time will pass quicker than you think.  I just focused on counting down the number of days, and tried not to look out too far....  Then you can join us helping the next batch of Hep C patients! -jack

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: sick and tired of being SICK!
« Reply #17 on: February 17, 2014, 07:12:29 pm »
Hi Marilyn - Here's some info on hair loss:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Hair.pdf
There are fact sheets for pretty much every side effect.
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 Karen Stirng

  • Newbie
  • Posts: 1
Re: sick and tired of being SICK!
« Reply #18 on: February 25, 2014, 12:33:36 am »
Hello fellow hep friends! I was dx 2002 hep c 1a non responder after 6 months of hell.I feel all around pretty crummy,no ins so I cant keep up with all that is going on.I have been having alot of stomach issues as well as dizzy,foggy,sluggish. you know what I mean. the last test showed 8,000,000 viral load if I remember correctly.I recently read that hep c patience are more likely to have diabetes,that would explain many symptoms. any thoughts?

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: sick and tired of being SICK!
« Reply #19 on: February 25, 2014, 09:16:16 am »
Karen,

My only thought is treatment options since 2002 are light years better - and you should get retreated NOW, before irreparable harm is done.  If you are a US citizen, with the ACA, everyone has access to health insurance.  But even without there are treatment options.  My advice is to schedule an appointment with a liver doc ASAP.
Good luck & let us know, jack

Offline karenhoyt

  • Member
  • Posts: 20
    • IHelpC
Re: sick and tired of being SICK!
« Reply #20 on: February 25, 2014, 08:08:55 pm »
I'm happy to see kicknhepc is hanging in there. I'm really happy that you don't have to work right now and can just focus on taking care of you. There will be a time, hopefully soon, when you will feel like getting out there and living your life fully. xo

For Karen - I am concerned that your stomach is not doing well. That was one of my first symptoms of cirrhosis. Please don't be alarmed, but take jberlin's advice and call the doctor. That sluggish fatigue is no picnic. I hope you are getting lots of rest and eating well.
Which leads to your question. Since the liver processes everything you eat, your blood sugar can fluctuate a lot. Several small meals a day is great. Try and work in some good protein with carbs such as grains or veggies and fruit. That can help your energy level too!
Take care and keep us posted. OK?
Karen
www.ihelpc.com

 


© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.