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Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Mr. Bob on July 17, 2015, 10:16:40 pm

Title: Post Treatment positives part 2
Post by: Mr. Bob on July 17, 2015, 10:16:40 pm
POST TREATMENT   success recovery stories........ Please.
My friend who is still suffering from 5 months post treatment joint and muscle pain , lung function diminished and fatigue on and off.. he swears he had non of these symptoms before Harvoni asked if I would post .
He keeps waiting to get better but it is slow slow slow if any.....
Hi, I am looking for a positive progress report of after treatment success. Someone who had a difficult  treatment   fatigue--brain fog-- joint pain  even heart/ blood pressure issues that continued post treatment for months and then how long did it take for you to get back to so form of well being.    The reason is I have friends including myself who are experiencing post treatment side effects and don't mind suffering  as long as we could rest assure and or  know it will be or get much better in 6 months  or longer. Is there anyone?   That would save us a lot of time pent on worrying if we had some really good success stories.....  I do realize there are the good  , bad and ugly stories...... but see more bad and don't see the follow up success stories....  where are these people from the trials....... I hope  this makes some sense  as I have seen  some posts over the months but it is very hard to access them as all the new posts are covering up all the old post and hard to search........Is there away to search  the files  for success stories?   not sure..
RJ
Title: Re: Post Treatment positives part 2
Post by: BattleTheBeast on July 28, 2015, 09:59:00 am
Hi Mr. Bob,

Yes I have struggled post treatment and it's only been 12 weeks but I am better today then I was even 3 weeks ago. I assume it's going to be a slow process with some ups and downs. I am learning to really listen to my body and allowing myself to rest as I need it, that's making a difference for me (not that I have a choice, some days it's like I have Mono!!)

Mel
Title: Re: Post Treatment positives part 2
Post by: Bucky on July 28, 2015, 12:16:57 pm
Bob,
It has been a little over a year since I reached SVR4 (S&O) and for the most part things are going fairly well. I have been working part time since mid January and have good energy most days but occasionally I have a day or two that I am tired.
Is it from the meds I took, my liver damage or the fact that I am almost 60? IDK but it is getting better for me.
Bucky


Title: Re: Post Treatment positives part 2
Post by: kittypurr222 on July 28, 2015, 12:51:33 pm
What is SVR4? Did you not take Harvoni for treatment?
After just 4 weeks no virus detected. 
Maybe you are taking another drug.  I know how frustrating it is to feel tired.  I have to work a hard job but since this treatment I hardly ever get tired.
Title: Re: Post Treatment positives part 2
Post by: kittypurr222 on July 28, 2015, 12:52:44 pm
What is SVR4? Did you not take Harvoni for treatment?
After just 4 weeks no virus detected. 
Maybe you are taking another drug.  I know how frustrating it is to feel tired.  I have to work a hard job but since this treatment I hardly ever get tired.
Title: Re: Post Treatment positives part 2
Post by: dragonslayer on July 28, 2015, 02:27:12 pm
What is SVR4? Did you not take Harvoni for treatment?
After just 4 weeks no virus detected. 
Maybe you are taking another drug.  I know how frustrating it is to feel tired.  I have to work a hard job but since this treatment I hardly ever get tired.

There are 3 main check points for SVR (Sustained Virologic Response, tantamount to being 'cured' in most cases):  4 wks post treatment, 12 wks post treatment, and 24 wks post treatment.  If testing at these points returns Undetected, then you are said to have reached SVR4 at 4 wks post treatment, SVR12 at 12 wks post treatment, and SVR24 at 24 wks post treatment/
Title: Re: Post Treatment positives part 2
Post by: Bucky on July 29, 2015, 02:10:49 pm
What is SVR4? Did you not take Harvoni for treatment?
After just 4 weeks no virus detected. 
Maybe you are taking another drug.  I know how frustrating it is to feel tired.  I have to work a hard job but since this treatment I hardly ever get tired.

AS Dragonslayer stated SVR4 is 4 weeks post treatment. I was treated with Sovaldi and Olysio. I took these off label before FDA approval and before Harvoni was on the market. Harvoni has Sovaldi in it. These were just one of the very few available DAAs in the spring of last year. I did twelve weeks of these meds and was cured.
There is a thread here about "Post treatment with S&O".
Bucky
Title: Re: Post Treatment positives part 2
Post by: chino1969 on August 12, 2015, 09:39:13 am
Bob, I just completed 24 weeks of Harvoni with very minimal side effects.  I notice incremental changes in my brain fog and energy levels in the positive direction.  Sleep pattern a little off and annoying cough but nothing major.
Title: Re: Post Treatment positives part 2
Post by: Patience on August 14, 2015, 12:02:45 pm
I am currently in my last 2 weeks out of 12 on Harvoni and I am experiencing some eye problems - very dry eyes and often blurry vision. I had these before treatment too, but they seem to have intensified with it. My ophthalmologist does not see any serious changes or damage so far. When I was treated in 2005 with interferon I developed cotton wool spots in my eyes along with autoimmune thyroid problems and had to stop treatment. The cotton wool spots disappeared within 6 months, but I'll be forever on thyroid supplements. Now,  I'm hoping that someone here can tell me they have had the dry eye/blurry vision thing, and that it disappears at some time after EOT. (The sooner the better!) I'm a wannabe artist, and I'd like not to have to change my style from representational to abstract! Thanks for any encouragement and for the support from this forum!
Title: Re: Post Treatment positives part 2
Post by: terih on August 14, 2015, 12:29:57 pm
Patience, since I'm a painter too, first of all thanks for the laugh with the realism to abstract remark!  ;D

Second, I had blurry vision on Harvoni also, it came and went throughout treatment, but resolved quickly after treatment ended!
                                                           Teri
Title: Re: Post Treatment positives part 2
Post by: Cure4life on August 14, 2015, 09:04:53 pm
Hi all, I am 8 weeks eot, I did 16 weeks of harvoni which included 5 weeks of riba. Since completing treatment i have experienced  dry eyes, fatigue  and some brain fog which seems to come and go very quickly. At the moment  I am experiencing  some sinus issues  but not sure if it is related to  treatment. I decided to wait to 12 weeks eot to do the blood test. I thought that if the virus  can still  come back  after 4 weeks eot it was better to wait to 12 weeks and, if it is undetected, have more certainty that I am  very likely  to  be  cured. During treatment I had VL 29 at 4 weeks and <12 un-quantifiable at 8 weeks. I am genotype 4 so no much  data on treatment  with  Harvoni  but I had to  do something.  I had to pay for  the  treatment  myself  by the way as I am in New Zealand. Good luck to all fighting the  dragon.
Title: Re: Post Treatment positives part 2
Post by: Cure4life on August 14, 2015, 09:14:46 pm
Hi all, I am 8 weeks eot, I did 16 weeks of harvoni which included 5 weeks of riba. Since completing treatment i have experienced  dry eyes, fatigue  and some brain fog which seems to come and go very quickly. At the moment  I am experiencing  some sinus issues  but not sure if it is related to  treatment. I decided to wait to 12 weeks eot to do the blood test. I thought that if the virus  can still  come back  after 4 weeks eot it was better to wait to 12 weeks and, if it is undetected, have more certainty that I am  very likely  to  be  cured. During treatment I had VL 29 at 4 weeks and <12 un-quantifiable at 8 weeks. I am genotype 4 so no much  data on treatment  with  Harvoni  but I had to  do something.  I had to pay for  the  treatment  myself  by the way as I am in New Zealand. Good luck to all fighting the  dragon.
Title: Re: Post Treatment positives part 2
Post by: Patience on August 14, 2015, 10:53:30 pm
Teri,
Thanks so much for giving me hope that the eye thing will improve. All the other sides are annoying, but I can live with them. Eyesight is so precious and diminishes with age no matter what we do. Live long enough and you will bump into stuff. I hate to think of losing any acuity that I don't have to!

Now, about the art thing ... don't get me wrong, I find no fault with abstract art and, in fact, I quite enjoy a good bit of it - as long as it is not done by me. If you really wanted a chuckle, I could show you some epic fails that I am guilty of in that department. Actually, maybe not. I think most of those efforts thankfully found their way to the dumpster or were recycled. I'm not much good at painting what I don't see.

Thanks again for your encouraging response. I hope that painting brings you great pleasure while you wait for the next step in your healing journey.

Cure4life,
Did you have the dry eyes during treatment or did they only show up after you were finished? Here's hoping Harvoni has done the job for you and your 12 week post will be clear!

Title: Re: Post Treatment positives part 2
Post by: Cure4life on August 14, 2015, 11:25:09 pm
Hi Patience, the dry eyes started after treatment. Cold weather seems to aggravate them. I just keep up with the eye drops 3 or 4 times a day which helps a bit. Thank you for your good wishes. At the moment I can't think of anything that would make me happier than getting rid of the virus. Best of luck.
Title: Re: Post Treatment positives part 2
Post by: terih on August 15, 2015, 11:39:29 am
Patience, I love abstract art too! I was just recalling all the times I've looked at an ongoing project with horror from one wrong brushstroke and said to myself, well I guess I could call it abstract!  ;) And believe me I've got my own collection of oopsies!

I wish everyone SVR and for all of the side troubles to resolve quickly!     Teri
Title: Re: Post Treatment positives part 2
Post by: kittypurr222 on September 20, 2015, 11:30:37 am
So hey now a 5121072010731182 weeks I really am HepC free.  Really amazing
Title: Re: Post Treatment positives part 2
Post by: KC on September 23, 2015, 01:00:32 am
POST TREATMENT   success recovery stories........ Please.
My friend who is still suffering from 5 months post treatment joint and muscle pain , lung function diminished and fatigue on and off.. he swears he had non of these symptoms before Harvoni asked if I would post .
He keeps waiting to get better but it is slow slow slow if any.....
Hi, I am looking for a positive progress report of after treatment success. Someone who had a difficult  treatment   fatigue--brain fog-- joint pain  even heart/ blood pressure issues that continued post treatment for months and then how long did it take for you to get back to so form of well being.    The reason is I have friends including myself who are experiencing post treatment side effects and don't mind suffering  as long as we could rest assure and or  know it will be or get much better in 6 months  or longer. Is there anyone?   That would save us a lot of time pent on worrying if we had some really good success stories.....  I do realize there are the good  , bad and ugly stories...... but see more bad and don't see the follow up success stories....  where are these people from the trials....... I hope  this makes some sense  as I have seen  some posts over the months but it is very hard to access them as all the new posts are covering up all the old post and hard to search........Is there away to search  the files  for success stories?   not sure..
RJ
Title: Re: Post Treatment positives part 2
Post by: KC on September 23, 2015, 01:04:44 am
I am 14 weeks post tx (undetected) today. Yes, I have had joint/muscle pains for the past couple months or more. I don't know if it is related but I am have such charlie horses in the morning that I have to get up and walk around. Also, very fatigue but was relieved to be undetected. Hope it lasts, if so God Bless Harvoni and us all!

KC
Title: Re: Post Treatment positives part 2
Post by: chino1969 on September 23, 2015, 08:15:54 am
I'm dealing with anxiety, brain fog, fatigue, etc. post treatment but I'll deal with them.  24 weeks of Harvoni, SVR 6 weeks, 12 weeks, 18 weeks and SVR 5 weeks EOT.  I am finally glad to be rid of this horrible disease that has infected my body, my psychological state and everything else.  Yes, I'll deal with the EOT side effects the best I can.

I really did not experience any negative sides while on treatment.  The first 3 or 4 weeks the sides were minimal and I worked full time.  I drank over a gallon of water every day, exercised and ate fairly healthy.  I am staying with this regimen now.  The week of Nov. 1st will be my 12 week EOT and I am very optimistic.  Mr Dr., who is a well renowned research doctor involved with the trials, was also very optimistic at my last visit.
Title: Re: Post Treatment positives part 2
Post by: Bituman on September 23, 2015, 10:28:46 am
Haven't posted lately, been in lurk mode.  About 20 weeks post EOT, still doing fine.  Just a few more weeks and I get final VL tests. No issues related to treatment.  Had a little lower back soreness recently, but I think that is a combo of ill fitting bike and (crap!) I'll be 60 in three months.  Last Saturday I did a 60 mile bike ride in Petrified Forest Natl Park, AZ, spectacular scenery.  I have several bike races in the next few weeks.  I wish I could say that getting rid of HCV has made me faster, but it hasn't.  On the other hand, treatment hasn't made me any slower. Beyond a SVR, I hope for the best for all recovering from this awful disease. 

Bob
Title: Re: Post Treatment positives part 2
Post by: Philadelphia on September 23, 2015, 05:54:36 pm
Hey Bituman! Good to see you are doing well. :)

I think I have to attribute my aches and pains to old age. Im getting close to 60, it's only my mind that thinks I'm a feckless young thing.
Title: Re: Post Treatment positives part 2
Post by: KimInTheForest on September 23, 2015, 07:21:42 pm
One post-treatment "positive" for me is that I can now take supplements without any discomfort to my liver. And it turns out I am deficient in various vitamins and minerals, so I need to take some supplements. I am currently taking daily oral supplements for: iron, B12, Vit D, plus B-complex and C for good measure. I would not have been able to do this pre-treatment because any supplements began to cause me flank soreness after about 10 days.

kim :)
Title: Re: Post Treatment positives part 2
Post by: Philadelphia on September 24, 2015, 03:55:01 am
I'm going to go out on a limb and say I feel much better than before treatment.

My aches and pains are because I am an old fart.

I walk 3km every day with the dog and I am starting to push myself more and more. I have more energy, although the last two cold days have kept me inside a bit.

I am enjoying life more, enjoying food more and enjoying getting out. Weird hep c treatment related issues have gone. The effect of too much bilirubin has gone - on urine colour and itchiness. The queasiness after eating has gone. The fatigue has gone. The brain fog has gone. The ennui has gone. My skin looks a better colour, my eyes are a better colour. I'm sleeping well. I'm slowly reducing my diuretic for fluid retention.

I feel clearer, happier and have more joie de vivre. I'm feeling okay about upping my days at work next term.

I feel better.
Title: Re: Post Treatment positives part 2
Post by: Scoutdoy on September 24, 2015, 08:24:59 am
Good for you Philadelphia....welcome to the wide wide world of life. I am not quite finished with my treatment yet and I can already tell you that I feel many of the same things you do. I haven't had to sleep mid day since I started treatment...I sleep better at night...have more energy and my joints that were just excruciating for years is almost completely gone. It's nice to wake up and not have to crawl to the coffee pot.


Scout
Title: Re: Post Treatment positives part 2
Post by: drummerman on September 24, 2015, 10:46:29 pm
Good for you Philadelphia....welcome to the wide wide world of life. I am not quite finished with my treatment yet and I can already tell you that I feel many of the same things you do. I haven't had to sleep mid day since I started treatment...I sleep better at night...have more energy and my joints that were just excruciating for years is almost completely gone. It's nice to wake up and not have to crawl to the coffee pot.


Scout

I probably posted this before, but my joint pain in each finger joint just disappeared about week 2.... thats when I knew that meds were working...I thought I had arthritis .

that being said.... it took me 4 months to get over interferon...I thought I would never feel "normal" again.

dm
Title: Re: Post Treatment positives part 2
Post by: Mugwump on September 25, 2015, 11:03:17 am
I'm going to go out on a limb and say I feel much better than before treatment.

My aches and pains are because I am an old fart.

I walk 3km every day with the dog and I am starting to push myself more and more. I have more energy, although the last two cold days have kept me inside a bit.

I am enjoying life more, enjoying food more and enjoying getting out. Weird hep c treatment related issues have gone. The effect of too much bilirubin has gone - on urine colour and itchiness. The queasiness after eating has gone. The fatigue has gone. The brain fog has gone. The ennui has gone. My skin looks a better colour, my eyes are a better colour. I'm sleeping well. I'm slowly reducing my diuretic for fluid retention.

I feel clearer, happier and have more joie de vivre. I'm feeling okay about upping my days at work next term.

I feel better.
Great to hear, I am also Child-Pugh A. Thank heavens not higher! So it looks like I will post links to some of my recordings in the early new year. The RA in my finger joints is finally backing down it does not hurt like hell when it is cold any more and my hands are not cramping when I play strenuous passages of Bach that stretch the hands to the max!!!! This is marvelous REMOVE THE DEVIL HCV and you become free to do what you were put on this earth to do!!

Eric
Title: Re: Post Treatment positives part 2
Post by: byebyeC on September 25, 2015, 11:18:36 am
Wonderful news all! Y'all give me hope :)