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Author Topic: Introduction and asking advice.  (Read 10469 times)

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Offline Mommy2kaci

  • Member
  • Posts: 3
Introduction and asking advice.
« on: July 27, 2014, 01:17:16 pm »
Hi there !! I don't have Hep c but my mother does. She is genotype 1 and is in stage 4 cirrhosis. She has had it for over 35 years now. She did 2 rounds of interferon and ribavirin in the early 2000s(I cant remember exactly when but I know her last round was in 2004) and neither worked for her and they made her extremely sick. She has esophageal varices but has only had to have banding done once as a precaution because the doctor was worried they would burst before her next appointment but that was over a year ago and she has had great checkups since then as far as her varices go. At her last appointment her doctor had mentioned starting Sovaldi and Olysio but we were sure she wouldn't be a candidate for it because of how progressed her hep c was. But, lo and behold a few weeks later we got the approval from her insurance in the mail and her doc sent the meds to us after that. She started them yesterday and took both pills in the evening. She is scared because of how awful she felt when she was taking interferon she doesn't want to be sick like that again. She is an insulin dependent diabetic as well and has been on methadone for a long time as well as other medications like her thyroid and blood pressure medicines. Like I said she is just really scared and I was hoping that some of you that had experience with Sovaldi and Olysio treatment could give her some words of encouragement. She lives with me and my husband and doesn't use the computer a lot but I will show her everything you say. Shes such a special lady, shes my best friend...I hope and pray this treatment works because it would be amazing to have her here even longer. She never thought she would see her grandchildren and here she is now, I have a 5 year old daughter and my brother has a 3 year old son and they love their mimi so much. I appreciate any advice or successful outcomes from the Sovaldi and Olysio.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Introduction and asking advice.
« Reply #1 on: July 27, 2014, 01:59:25 pm »
Thanks for joining, and sharing your Mom's experience. This is exciting to hear. Quite a few people on this forum are taking O/S, and I hope you hear back from them. In the meantime, take a look at the other comments on this forum - I think you will be pleased to hear what people are saying about this. 
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 Mike

  • Member
  • Posts: 999
Re: Introduction and asking advice.
« Reply #2 on: July 27, 2014, 02:23:56 pm »
Hi Mommy2kaci,

Your mom should be fine while taking the S/O combination - especially considering she treated with INTF+RIBV in the past, which was really a horrific experience (I went through that treatment in 2001, and failed. The side effects were horrible).

The S/O combination is much more tolerable and shorter. Side effects include transient headaches and itching, with some developing a rash.

Olysio causes photosensativity, so it is important not to become overexposed to sunlight while taking this drug. This means your mom should make sure she covers all exposed skin (long-sleeved shirts/sun block), wear sunglasses and a hat when in the sun. As little as 10 minutes of sun exposure has caused some to develop significant rashes and so on.

Your mom should do fine, and has a great chance of knocking this virus out for good!

Sovaldi is a miracle drug and you should take comfort in that the S/O is very tolerable and your mom will most likely beat this infection!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Introduction and asking advice.
« Reply #3 on: July 27, 2014, 03:09:46 pm »
HI MOMMY 2, I REALLY BELIEVE IN PRAYER AND I REALLY BELIEVE IN MIRACLES AND TO BE TRUTHFUL I HAVE BEEN ON MEDS FOR ALL DIFFERENT AILMENTS, PHYSICAL,MENTAL,ETC. AND MOST OF THE TIME I CURSE MEDICINES AND PHARMACUTICAL PEOPLE THAT ARE GETTING RICH OVER MEDS THAT THEY OR THE DR.DONT REALLY KNOW ABOUT, HECK FOR YEARS I REALLY THOUGHT THEY WERE USING ME AS A GUINEA PIG CAUSE SOON AS ID SAY WELL I DONT THINK THIS IS REALLY WORKING,, WELL WILLIE THEY WOULD SAY TRY THIS ONE ,THEN TRY THIS ONE, I WAS ON A MERRYGROUND I THOUGHT I WOULD NEVER GET OFF BUT LET ME TELL YOU WHEN THE DR. SAID WILLIE YOU HAVE HCV I ASKED SO WHATS THAT MEAN/? OF COURSE I DIDNT LIKE HIS REPLY.ANYWAY I AMLUCKY ENOUGH TO BE ON THESE NEW DRUGS,SOLI/OYLISIO,  AND YES I WAS SKEPTIPICAL AT FIRST BUT I STARTED READING POSTS ,COMMENTS ON HOW WONDERFUL THESE NEW DRUGS WORK!CON GRADULATIONS TO THE DEVELOPERS,SCIENTISTS ETC. I NEVER THOUGHT ID BE SAYIMG THAT ABOUT ANY DRUG!  BUT IT LOOKS LIKE WE HAVE AWINNER HERE,, SUCESS ,AFTER SUCCSES, LIKE LUCINDA PORTER SAID YOUR IN THE RIGHT PLACE AT THE RIGHT TIME. THESE DRUGS ARE ;;REALLY;; WORKING AND SIDE EFFECTS YOU CAN DEFINIETLY DEAL WITH, I AM ON MY 11TH DAY AND FOR 7 DAYS I WAS WAITING FOR THE BOMB TO DROP, NO BOMB BUT ON THE 8TH DAY I STARED HAVING THAT ANNOYING PAIN IN MY LIVER AMD ITS BACK TO THE GULF BALL I FEEL WHEN I LIE ON THAT SIDE BUT THANKS TO MIKE ANOTHER CARING PERSON THAT WENT THRU SAME STUFF EXPLAINED ABOUT THE LIVER BEING SO INFLAMED WHICH CAUSES PAIN IS JUST TRYING TO HEAL ITSELF.  COOL SO I FEEL BETTER ABOUT THAT BUT ITS STILL HERE  BUT,,,! I WOKE UP WITH ENERGY TODAY AND NO SWEATS ETC. THAT I WOULD GET DAILY SO FROM ALL THE HORROR STORYS FROM THE OLD TREATMENTS THIS IS TRULY A MIRACLE DRUG, SO LETS PRAY, "DEAR LORD I PRAY RIGHT NOW WITH MOMMY 2 THAT HER MOTHER IS IN YOUR HANDS AS YOU HAVE ALWAYS BEEN AND I ASK AS WELL AS OTHERS TO LET THIS TREATMENT SHES GOING THRU BE THE MIRACLE SHE NEEDS, AND I THANKYOU FOR ALL THE SOULS THAT ARE BEING HEALED FROM THIS DISEASE, WITH THAT SAID LORD I HAVE THE FAITH AS WELL AS SHE DOES THAT YOU CREATOR HAVE YOUR HANDS ON HER NOW! THANKYOU  LORD..IT IS DONE   WILLIE G  PS  LUCINDA PORTER HAS THREE BOOKS OUT THERE THAT ARE EXTREMLY GREAT! I HAVE READ 2 WHICH I ORDERED OFF MY KINDLE BUT THEY DONT SEEM TO HAVE THIRD, SHE HAS ONE BOOK THAT IS A DAILY READING TYPE OF BOOK WITH SO MUCH GOOD STUFF AND SHE REALLY HAS BEEN THRU THIS THREE TIMES OF DIFFERENT EPISODES OF TRYING TO SLAY THE DRAGON, IF YOU BUY ONE WHICH ARE FAIRLY PRICED YOU WONT REGRET IT ,YOU MOMY2 AND HER CAN READ IT TOGHETHER. JUST TO MAKE IT CLEAR I HAVE NEVER MET LUCINDA PORTER IN MY LIFE AND ONLY KNOW HER FROM THIS FORUM,BUT IF YOU WANT THE WHOLE DEAL ON THIS DISEASE GET ONE, I HAVE READ MANY OTHERS BUT HERS IS TRULY GOD SENT.  PRAY FOR US TONIGHT PLEASE AND MAY I PRAY MANY MORE FOR YOU  WILLIE G

Offline Mike

  • Member
  • Posts: 999
Re: Introduction and asking advice.
« Reply #4 on: July 27, 2014, 03:26:39 pm »
Amen, Willie! Amen!
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Introduction and asking advice.
« Reply #5 on: July 28, 2014, 11:12:59 am »
Thanks for recommending my books Willie. For the record, I only have 2 that are published (although I am working on a third).
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 Shirleyb

  • Member
  • Posts: 15
Re: Introduction and asking advice.
« Reply #6 on: July 28, 2014, 11:25:47 am »
I am truly moved by your prayer! AMEN!

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Introduction and asking advice.
« Reply #7 on: July 28, 2014, 07:10:55 pm »
WELL LUCINDA I GUESS I CAN STOP LOOKING FOR THAT THIRD BOOK NOWLOL EVERYWHERE I HAVE WENT HAVE SAID SOORY,DO YOU KNOW THE TITLE? AND I FIGURED THEY WERNT UPDATED IN THIER SYSTEM ETC. ONE PLACE HAD ONE, OTHER PLACE HAD TWO, OH WELL.I KNOW YOU ARE CONSIDRING WRITING A BOOK NOT TO DUE WITH HEP, WHICH I THINK IS ACOOL IDEA BUT YOU MUST ADMIT WITH THESE NEW DRUGS AND SUCESSES THIS BOOK WOULD BE KINDA OF A WHOLE NEW JOURNEY ON THE SUCSSES INSTEAD OF THE HORRORS OF NOT LONG AGO.I THINK THE WORLD NEEDS AN UPDATE LUCINDA AND I CANT THINK OF ANYONE WHO COULD DO A  BETTER JOB AND YOU COULD HAVE MIKE WRITE THE INTRO. SERIOUSLY, I FEEL A STRONG CALLING ON THIS ONE."FREE IN 12 WEEKS;! OR ;SLAYING THE DRAGON: A BOOK ABOUT HELP AND NOT HOPE ETC. THATS WHY I AM NOT A WRITER BUT MAYBE I PUT A BUG IN YOUR EAR, THE TIME IS NOW,EVERYWHERE I SEEM TO GO ABOUT HEPC DOESNT EVEN MENTION THE NEW TREATMENTS ONLY TO SAY. 'SOON THERE WILL BE NEW DRUGS THAT SHOULD HAVE BETTER RESULTS. BUT I HAVENT SEEN ANY BOOKS WITH A CLEAR UPDATE.. HOW BOUT A PAMPHLET? LOL   WILLIE G

Offline bwelsh

  • Member
  • Posts: 27
Re: Introduction and asking advice.
« Reply #8 on: July 28, 2014, 09:05:12 pm »
My Mom sounds like she has the same treatment schedule as your Mom.  However, she just completed her treatment with Solvadi and is extremely sick.  We are still looking into why this is happening, but before the Solvadi, she was fine.  You can read my post that I posted today looking for answers.

Offline Triptotown

  • Newbie
  • Posts: 1
Re: Introduction and asking advice.
« Reply #9 on: August 01, 2014, 11:51:23 pm »
Hi Mommy2.
From the love in your words written about your Mom, I can tell she is a very fine woman who raised her children with love, compassion and empathy.
I too have (can almost say had!) Hep C, geno 1, stage 4 with cirrhosis stage 4, for 34 years. I was treated twice with interferon/ribaviron with no results but horrific side effects and many complications after.
Then along came the "miracle meds"
Solvadi & Olysio! Yes, they are miracles! My insurance covered the meds and I began. After the first few days I actually thought that they were fake meds as I felt nothing. Good or bad. After the first week a small rash developed on both my ankles. The patch was circular. This stayed for the duration of treatment...at times very itchy,others just a raised patch. I tried to keep the area dry, this seemed to help control the itch. Honestly, that was it. My appetite slowly increased, as did my energy, happiness (as if the brick of fear, worry, sadness was lifted away)and general well being. I finished treatment on June 14. By September 12, if VR stays undetected, I will hear the coveted word from my Dr...CURED...!
My hope is that this will be your moms experience too!
Two tips...drink water, a lot of it, eat protein, and try to limit sugar/salt intake! Oh and exercise as often as you can!

 


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