Welcome, Guest. Please login or register.
April 23, 2024, 01:39:40 pm

Login with username, password and session length


Members
  • Total Members: 6307
  • Latest: golfer
Stats
  • Total Posts: 55126
  • Total Topics: 4851
  • Online Today: 68
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 45
Total: 45

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: 2years 2 months after treatment with SOVALDI/simeprivir  (Read 9087 times)

0 Members and 1 Guest are viewing this topic.

Offline amocuatli

  • Member
  • Posts: 43
2years 2 months after treatment with SOVALDI/simeprivir
« on: October 11, 2015, 10:06:02 am »
OK I just wanted to share this in case it is helpful
I've been reading a lot of posts about after treatment fatigue it seems that some people have a lot of it/ some people don't. It seems a lot of times the people who aren't torn up by fatigue that is to say they may or may not have it but in either case they get over it are the people who exercise and take care of their diet for example our own L Porter...
This is my experience:
The summer I was on the meds I stayed inside and basically slept
  :-[ Last year I was plagued by fatigue, malaise and anxiety
Things happened and I found myself having to renovate my house to put up for rent
I had to get up each day and move around -- a lot
The more I moved the more my fatigue has disappeared!
I don't know if it is because the I'm two years out or if it is because circumstances forced me to get out and exercise all I know is that I feel much better
Also I think that diet is very important too after TX  :)I took a bunch of pro biotic pills from WalMart and lately I'm taking Kevita which is a drink with probiotics in it
I'm also on a healthy low sugar diet that focuses on veggies and meats with low glycemic carbs I feel a lot better -- but I was on that diet BEFOREand still had fatigue
Go figure... :) :) :). I hope this helps

Offline Bucky

  • Member
  • Posts: 341
Re: 2years 2 months after treatment with SOVALDI/simeprivir
« Reply #1 on: October 11, 2015, 10:21:18 am »
OK I just wanted to share this in case it is helpful
I've been reading a lot of posts about after treatment fatigue it seems that some people have a lot of it/ some people don't. It seems a lot of times the people who aren't torn up by fatigue that is to say they may or may not have it but in either case they get over it are the people who exercise and take care of their diet for example our own L Porter...
This is my experience:
The summer I was on the meds I stayed inside and basically slept
  :-[ Last year I was plagued by fatigue, malaise and anxiety
Things happened and I found myself having to renovate my house to put up for rent
I had to get up each day and move around -- a lot
The more I moved the more my fatigue has disappeared!
I don't know if it is because the I'm two years out or if it is because circumstances forced me to get out and exercise all I know is that I feel much better
Also I think that diet is very important too after TX  :)I took a bunch of pro biotic pills from WalMart and lately I'm taking Kevita which is a drink with probiotics in it
I'm also on a healthy low sugar diet that focuses on veggies and meats with low glycemic carbs I feel a lot better -- but I was on that diet BEFOREand still had fatigue
Go figure... :) :) :). I hope this helps

Wow, two years out from treatment with SOVALDI/simeprivir! You must have been one of the people in the early trials. I was treated with the same just a few months after the FDA approved Olysio but the treatment was considered off label. Luckily with my IDS got my insurance to pay for it.
Yes you do have to get moving to help the fatigue. I went back to work part time as I had retired to do treatment. I do find that fatigue, tiredness and stiff joints are major complaints of all my friends who are now in their sixties.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline WholeFoods

  • Member
  • Posts: 73
Re: 2years 2 months after treatment with SOVALDI/simeprivir
« Reply #2 on: October 11, 2015, 03:35:25 pm »
I wish it were that simple for those of us wracked with fatigue. I hate being down and I have tried pushing through it but mostly end up in severe pain if I do. My fatigue/pain symptoms cycle randomly. I have had a mostly healthy diet for 15 years and have found no distinct correlation there either. I think for people like myself we tend to feel we have these symptoms because our systems are responding to all the different changs associated with having and having had the virus. I have had an over sensitive constitution my whole life (hereditary factors too) though others may have only developed sensitivity since having the virus. I have spent thousands on tests and treatments that have only worsened symptoms. There is no doubt, for me, after having taken Harvoni, my migraines are back, but this also is not unusual for me as they have cycled for the last 35 years depending on various stress factors.

 We are all unique, but you are certainly correct in saying a few months of inactivity can definitely cause more fatigue in a person, until ya get back in the swing of things. I am interested to know some folks have experienced a massive decrease in vitamin D levels and have started supplementing myself to see if it helps. I've also been taking pre and probiotics since end of treatment 5 months ago. It is getting better.... ever.... so..... slowly. :-)

Thanks for posting your experience. We are always grateful to hear from those with more cured time under their belt, wanting to know what your lives have been like!
« Last Edit: October 11, 2015, 03:38:36 pm by WholeFoods »

Offline suziq1934

  • Newbie
  • Posts: 1
Re: 2years 2 months after treatment with SOVALDI/simeprivir
« Reply #3 on: October 20, 2015, 08:57:41 am »
I did a Merck trial and am 2 years 3 weeks since my first UND result.  I did 18 weeks and they did not give an SVR until six months after EOT, so my SVR date was July 2014. 

I do not know that I feel much better, but I am really old.  Had my 81st birthday in August. The time since end of treatment has been filled with problems--house burned down with no insurance--daughter lost her partner--lost pets during fire--etc.  I am, however, still living on my own (alone) in a house in a rural area and able to do normal activities.  I have some fatigue, but nothing dramatic.  Last liver scan showed no cancer.  My cirrhosis has receded to between Stage 2 and 3 fibrosis since treatment.  Only real problem is stomach pain more often than before treatment. 

Although I had Hep C about 50 years, I wasn't actually sick.  I did have a few periods of fatigue and some liver area pain, but that was about it.  Was really surprised that my biopsy before treatment showed cirrhosis.  Of course, I have not worked at a job for a long time--about 20 years--so my time has been my own to come and go as I please.  I do own some rental houses and have taken care of them during those years.  I sold a couple recently.  Mostly because I could not find good handymen and tired of dealing with tenants.  Spent the last 3 weeks taking one to and from her job because her car broke down.  Actually, it was kinda fun.   

I took supplements the last 6-7 years before treatment and am considering going back on a few again.  Creaky joints are not fun, but they still work.

I, frankly, have no idea if treatment really made a difference in my general well being.  I do know that I have one less worry--HepC.  And for that I am very grateful.   
 

Offline sunrise

  • Member
  • Posts: 463
Re: 2years 2 months after treatment with SOVALDI/simeprivir
« Reply #4 on: November 29, 2015, 11:16:44 am »
Hi everybody,
 Well it has been 11 months since EOT, I did 12 weeks of Sovaldi/Olysio, and mainly dealing with joint issues and acid reflux. I have lost some of the weight I gained during tx. 50 lbs! I'm  not obese. 5'6" 170 now. Palpitations have gone away as well as high blood pressure. Good to hear you are all doing better and we beat the dragon!!! Have a wonderful  holiday much love Sunrise

 


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