Thanks

That is what I wanted to know from the long term Post-Treatment people.  

That thread is very interesting. Thanks for the link.

Hi MM, it`s mostly the treatment drug ribavirin which causes brain fog, and it`s a well known side effect.  Brain fog refers to the experience of having cognitive issues such as forgetfulness, loss of concentration and generally confused thinking.  It can be a side effect of other treatment drugs too.  Because ribavirin takes about 6 months to be completely eliminated from the body after the end of treatment, these side effects can linger on for a while, although they usually start to clear up fairly soon after the recovery process has begun, and they don`t lead to long term issues like dementia, for example.

Hep C itself can cause brain fog too, and mostly that resolves or improves significantly once treatment has been successfully completed and the virus is gone. 

Using over the counter medications doesn`t make any difference to this. 

Hope that helps. 

Hi MM,

You will hear us talk often of "brain fog" here on the forum. Not only is it what we call an extra-hepatic manifestation of HCV (in general), many of us noticed an increase in it during treatment. Ribavirin seems to be a known culprit. Basically, it's just forgetfulness, and an inability to concentrate. That's where the term brain fog originated. It can seem like you're walking around in a bit of mental fog. It doesn't happen to everyone, and if it does, it doesn't incapacitate you to a level that makes daily life impossible. For those of us that experienced it, it improved quickly after treatment ended. It's not something that will induce premature dementia if that is a concern.

Here is a discussion we had on the forum recently. It will describe it technically. You can also use our search function and use the keywords "brain fog" w/o quotations. I hope this helps put your mind at ease.

http://hepcfriends.activeboard.com/t59616400/interesting-study-on-brain-fog-and-harvoni/

I am studying the forum to find out about different treatment options.

I am really concerned about this mention of "brain fog" which has also been a topic on the forums. I wonder if over-counter medicines either during treatment or after treatment have any correlation or relationship with severity and duration  of "brain fog?" But I am not a doctor so I am looking at this from a layman's view which is mostly guess and by golly.

Many people who have hep C had life saving blood transfusions. Now they have Hep C. So I am always wary because I don't want get life saving liver drugs and have early dementia.

Anyone have any long term brain fog issues or are the drugs too new? What exactly is "brain fog?"

Congrats on your SVR 18 Annette. Getting older does take it's toll, at least that's the case with me and a busy schedule doesn't help. After having HCV, HIV and emphysema for at least 21 years, I'm doubtful I'll ever feel 'normal' again, but it will be nice to know I won't have the Hep C eating away at my liver and making me feel worse in the future. I'm glad life is going "good" for you and I'm glad you stopped in to share your experience. Please do so again whenever you get time away from that busy schedule.

Hi Annette, how good to hear from you again!

I`m very pleased that life post treatment is going well for you, and the fact that you`re managing a busy schedule says a lot!

I think that for people like us who lived with the virus for so long, it really is difficult to know what feeling `normal` should be like, and of course, we`re all getting younger every day (I wish!).

You were one of our members who did it the hard way, with the Incivek triple, and it`s great to hear your update.  We never tire of hearing the words `life is good` from our post tx friends!

Thanks for stopping by, all best wishes to you!    

Hi everyone,

I feel as close to normal as I can remember. Since having hep C and not realizing it I don't feel any different than I ever did. However, post tx I do get tired often at night but that could be from age too. I do have a busy daily schedule which could be adding to me getting tired and going to bed earlier than I did before treatment. But life is good!

I finished my treatment one year and six months ago and all is still going well.

Hi all: I am relizing after dealing with HepC for at least 35 years that I dont know what normal feels like. I mean how do you sort out ailments of age vs. treatment sx? Platelet level vs age?   But...........This  I can tell you, with the 2nd time on Ribavirin I know when that side diminishes !

Feelin better every week now, hope ya'll are 2. 

Hi again, VwC,

I just replied to your question on another thread, and I was wondering too about your latest results.

Sounds like you`ve making some very positive changes in your life, even with the cognitive difficulties you`re still having, and I`m very pleased you have your wife and family there with you now.

I`m wondering whether you`re expecting too much of yourself too soon.  At only 3 months post tx it`s still early days for you yet and really you`re still in the recovery phase.  I think it`s amazing that you`re starting to build a house, and I can hardly begin to imagine the planning and thought that must be required, not to mention the physical challenge. 

I hope things will improve for you as time goes by, and please do update us on your latest results when you hear them.

Take care, and we`ll be looking forward to your next update. 

Thanks Tig for your reply.  What are you doing up so late?? and what time zone are you in?  I'm in the furthest south and west of the US.

SVR date?.........meaning when did I finish TX?  Mind fog tells me 'I forgot', but I just got my 3 month labs and will get results in a week and will post them, if I remember.

Good idea about requesting to see a cognitive psychologist or neurologist, but I think that you know how difficult it is with the VA to contact humans.  On our isolated island in the Pacific and our small vet clinic, we just lost the only Psyc Dr a few months ago and she hasn't been replaced yet.

I am eating well and trying to exercise when I have the time and energy, which is a half hr of stretching and yoga type work out at night. A couple of hrs of physical labor will wear me out but I have to force myself and pay the price with ibuprofen in the evenings.  

Now starting to build a house...........starting over from scratch at 68 years is going to be a challenge, as my building skills are not what they used to be and I'll be hiring a pro carpenter where I used to do it myself 20 years ago.

It is good to have my wife and kids finally over, as I need their support, but they need mine as well and that's another challenge.

OK, I'll stop whining and get back to putting one feeble foot in front of the other [while trying not to stumble over it].

BTW, I did a search using the keyword 'dementia' and found a post that I made back in June and forgot until now.................blame it on mind fog. 

If you see a brain somewhere on the road, please return it to me, I'm missing mine.

Good hearing from you.........

Hey Harry,

Good to hear from you. What's your latest testing update? I don't see your signature line updated with your SVR date, so take a moment and let us know the good news. I'm going out on a limb and hope no news from you means you were successful??? I hope so.

I have read where some people have expressed cognition difficulty following treatment, but I haven't heard that it's a long term problem. Have you discussed this with your VA doc? They may have a cognitive psychologist or neurologist that you could speak to about the memory issues. It's worth asking about anyway. Recovery takes quite a while for many. This protocol is new, so the real world EOT data is now being compiled. Don't be too hard on yourself, these things take time. Recovery comes at its own pace, not yours unfortunately. You can help by taking care of yourself nutritionally and physically, stay rested and let nature take its course. It'll happen.

Sounds like your family is getting settled, that's great. It's nice that you can all be together. Fill us in on any new news and I hope congratulations are in order! Good luck...

basser wrote:

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thanks jill.will take awhile to get things sorted out .will have loads of tests to go through.said i might have to go to london free to have them done there.till then am going to enjoy life as much as possible.its a lovely day suns shining so will get out and enjoy it.hope your well jill talk soon                                                                                                                 william

---

Good to hear you`re feeling so positive,William, that`s the best attitude to have. 

We`ll be following your progress as you go through this, and maybe you`d like to start a new thread for your updates.

Enjoy the nice weather, I`m just heading out to my garden. 

Talk to you again soon, take care...   ~ Jill 

thanks jill.will take awhile to get things sorted out .will have loads of tests to go through.said i might have to go to london free to have them done there.till then am going to enjoy life as much as possible.its a lovely day suns shining so will get out and enjoy it.hope your well jill talk soon                                                                                                                 william

Hi William,

I`m sure that wasn`t what you wanted to hear, but once you`ve been through the process and have a new liver you`ll be feeling so much better.  It will be so worthwhile in the long run, just stay patient and go through it step at a time. 

Keep us updated, we`re here for you any time you want to talk it over.  Take care and look after yourself...  Jill

seems a transplant is a must for me.cant say im to pleased.was hoping that being svr i might not have to have one.but i really dont feel to good and know its because of toxin build up.will take it a day at a time.that works for me.you never know whats around the corner.best oof health to you all                                                                                                                         william

thanks for your reply duane.i see the transplant team tomorrow.hope to have some answers then.my specialist is very good at not answering my issues.am now sure that the way im feeling is due to toxins not being cleared out by my sick liver.the prospect of a transplant is not nice as for waiting ive got very good at that after years of doing it as most of you know there is so much red tape when you get involved with hospitals.i certainly will take your offer of your advice.have been following your posts and its been a few weeks since we have heard from you.hope you are as well as you can be in your situation.yourin my prayers duane.sometimes thats all we do when things go wrong.will be in touch soon godbless                                                                                                                                                                                                                                                                         william

basser wrote:

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thanks jill.hope i can get some answers from the transplant team.some times getting answers from drs is like trying to get blood out of a stone.have had more answers from this forum than the drs on how to deal with hep c and post tx problems.thank you all.                                                                                                                                                                                                                                               william

---

 I would be happy to answer any questions you have William, I have been  thru the gammit with all this right up to 6 months before supposedly getting my liver after nearly 4 yrs of waiting and getting kicked off due to cancer.....so please ask if you think I may know or be able to advise.

I found the wait to be only mildly irritating,  knowing all about the procedure i wasn't exactly in a hurry, although now in retrospect i wish things would have worked out about 6 months ago.

God Bless,

Duane

thanks jill.hope i can get some answers from the transplant team.some times getting answers from drs is like trying to get blood out of a stone.have had more answers from this forum than the drs on how to deal with hep c and post tx problems.thank you all.                                                                                                                                                                                                                                               william

Hi William,

Sorry to hear that a transplant might be necessary but I do remember you saying that was always going to be a possibility even after SVR.  And I`m sure if that`s the course you need to follow then you`ll cope with it with the same steady determination that you`ve already shown throughout your treatment and during a long and frustating recovery process.  You`ve come a long way since you first joined this forum, you`ve achieved your SVR, and you should be proud of that!

Take it step at a time and do keep us updated, you know we`re here for you any time. 

All very best wishes for improved health in the future! 

hi really appreciated your uplifting posts. i really needed them.it can be a lonley journey some times and this forum has helped me immensely.best of health to you all                                                                                                                                                                                                                                                               william  

Hi William,

I'm hoping you get some good news from the transplant consult on the 17th. We have seen some improvements following SVR, although slower than we'd like, but they are improvements all the same. You have cleared the virus and that's a fantastic first step. You have shown us and yourself, that you have what it takes to keep going, this time is no different. If the decision is to transplant, then you'll handle it and will succeed at that too. You won't know til you know. One day at a time. So stay positive and continue staying committed to achieving the level of health you've been striving for. I have every belief that you will do it and we'll be here to support you along the way, whichever way that path leads. Keep us informed Brother! Good luck...

William,

I pray whatever the outcome of your doctor's visit, things will be better for you, and that you will find a path to improved health.   Be well. 

Hi William,

That doesn't sound like very good news to get. Why do they think you need a liver transplant? Is your liver starting to fail? There are a lot of post treatment side effects that many are getting. It seems they start to clear up after a few months after your liver gets a chance to heal a bit. I sure hope yours starts to heals and postpones the necessity of a transplant.

Our little dragon just keeps on giving. I'll be thinking of you and hoping for some positive news when you go visit the transplant team.

having cleared the virus am now trying to get my life together.but i still have another hurdle to jump.seems like a transplant is going to be nessasary.i have alot of aches and pains its to do with the toxins not being flushed out of my system properly.also am still recovering from tx.have got to see the transplant team on the 17th of this month.should know what is going to happen then.best of health to you all                                                                                                                                                                                                                                                   william

Well unfortunately Fireman rob some of us had no choice but to take the life altering meds before the new drugs came out. I remember when victrilis was the praise of the hep c world and short lived. there are many of us still suffering post tx problems because of interferon and ribavirin. 

Hi Alex,

Don't worry friend,  those old, life altering meds are almost history. Especially in the U.S. Today's cure (Harvoni) is DEFINITELY better than the disease! good luck and keep us posted.

Be Well,

-Rob

So join the crowd :)  Brain fog, common for those with HCV.   I think my wife sometimes wonders if I have a brain?  Just remember to take your meds!!  I used a daily pill dispenser and marked it on a calendar.  I still had days I left for work, got to the bottom of the driveway and went back to make sure I'd taken my meds.  You'll do fine. :)

I am having problems with simple math equations, directional problems. I loose words mid sentence....

The gilead combo sofosbuvir and the other one I can't remember cured me. I had 3 yrs with 3 rounds of interferon and ribavirin 1 with victrilis that failed prior to the gilead combo that worked. I'm really trying to overvome this and eat very clean and workout 6 days a week. Just something isn't right in my head. 

i feel for you....what drugs cured you?

I feel the 9 months on peginterferon and ribiviron zapped my life away......I feel so much worse the pre tx.

that is my concern w harvoni. doc totally minimized the side effects. I'm sure everyone is different, but it ruined my life.

vetwc,

I am asking the same questions....i am on day 12 of harvoni and feel like crap.

Iterferon and riboviron almost killed me 10 years ago and the side effects never went away.

Please let me know what you think and whether feeling crappy again for 22.5 more weeks is worth it.

peace,

Alexj

Thanks for sharing the success stories, gives some hope.   Wish I could say I've returned to "normal" I'm definitely still experiencing the muscle, joint, neuropathy, and insomnia issues.  Not complaining, thankful for every day. Trying to get into a regular exercise routine. After years of chronic fatigue and little exercise it may take a while to get back in shape, working at it.  Should find out next week if SVR is in my future.......cautiously optimistic.  Has anyone heard from Darkstar?  Hopefully he will be celebrating SVR.  JLynch should be close as well.  Good luck to all those starting tx, nearing eot, and those approaching 12 week eot labs. 

Oops, sorry didn't mean to be so redundant. Just noticed a similar post I made.

Well, since my EOT on 8/30/12, I have gotten better in all areas of my life. Physically I have almost returned to 5 years ago when I was in the best shape of my life. The only difference I see is my digestive system seems to have changed a bit. Certain foods seem to "fly" right through me since tx. It's not a big deal just a change in my body that I have gotten used to. My energy level has been great and I still work out almost every day.  I've completed 2 IM triathlons and done a couple of century bike rides since EOT. I don't know how long I can keep it up but I will keep going as long as I can. Getting clear of Hep C has been a huge mental and physical boost for me and I'm lucky to have been able to do it. 

If your having trouble just keep moving forward and try to move around a bit if you can. I was told if I was sitting still I was an easier target for sx, so I try to keep moving. 

Good of luck to everybody and remember, you are not alone. So many good people on here helped me along the way. 

God bless you all and have a great day!

Jim

Rockyfeller wrote:

---

I'm now 18 months SVR and stop by here every once in a while to see what's going on.  I just turned 70, and can honestly say that I feel better every day, and don't remember feeling this well for years.  I'm recovering from rotator cuff surgery 4 mos ago, but it healed quickly and I'm able to go sailing again.  I walk with my dogs about 5 miles a day, and swim about 3 miles a week.  I remember during treatment and shortly wondering if it had been worth it, and it surely was.

---

 Hi Jim, good to hear from you! 

I`m very pleased you`re doing so well, that really is fantastic.  Thanks for dropping by, it`s very encouraging for our newer members to realise how good life can be after the virus has been defeated. 

Enjoy every day of your new healthy life! 

And a belated Happy Birthday to you! 

Rockyfeller wrote:

---

I'm now 18 months SVR and stop by here every once in a while to see what's going on.  I just turned 70, and can honestly say that I feel better every day, and don't remember feeling this well for years.  I'm recovering from rotator cuff surgery 4 mos ago, but it healed quickly and I'm able to go sailing again.  I walk with my dogs about 5 miles a day, and swim about 3 miles a week.  I remember during treatment and shortly wondering if it had been worth it, and it surely was.

---

 Hi Rocky,

That's a familiar face I'm happy to see you made SVR, if I missed it a while back  I'm sorry but haven't seen you around much, that's great news. Glad to see your feeling so good it's nice to here there's light at the end tunnel.

take it easy and Good luck

BillS  

Was there a way to relieve joint pain?

wow.... jow lonh dus you havr the viru

i had the same hand joint issues before i was diagnosed. i used to get hand massages i on my joints it was so bad.it was almost like they. were brused:. as o started toclear the virus which ii did fro m 25millon. to undetect in two weelks from start of treatment it. deminished significantly: i had a few times more but not even close to what it was and then it went away.

i think malcome wrote a post about the issue not long ago. it mad alot of sense.  i dont want to try to quote it but something along. lines of a response from body to the virus.  i have not had the issue since und

i havr aldo been intereste. things i have regarfing an sutoimune reasponse from the virus. i do know i have not had the joint pain since eot:. 

Glad to hear all of the positive comments and to see the improvements in treatment methods.  I am amazed at all of the commercials on TV regarding the new treatment.  It looks like the beast may have been slain!

 Rockyfeller wrote:

---

I'm now 18 months SVR and stop by here every once in a while to see what's going on.  I just turned 70, and can honestly say that I feel better every day, and don't remember feeling this well for years.  I'm recovering from rotator cuff surgery 4 mos ago, but it healed quickly and I'm able to go sailing again.  I walk with my dogs about 5 miles a day, and swim about 3 miles a week.  I remember during treatment and shortly wondering if it had been worth it, and it surely was.

---

Hey Rocky, glad to hear you're doing so well.  Can you e-mail me a bit of that energy?? :)  Sounds like you have plenty to spare :)   I've actually started on an exercise routine trying to ride the bicycle every day, doing sit-ups, and light weight lifting.  Sitting behind a desk for many years hasn't helped me physically.  Will be 3 months post eot in a couple days.  Hoping to get more back to "normal" whatever that may be, and to get the energy back.  Odd when I did the Sovaldi/Olysio it seemed as though even on tx my energy levels increased.  Not so with the Harvoni, guess it will take some time.  Swim some laps for me :)

Take care

I'm now 18 months SVR and stop by here every once in a while to see what's going on.  I just turned 70, and can honestly say that I feel better every day, and don't remember feeling this well for years.  I'm recovering from rotator cuff surgery 4 mos ago, but it healed quickly and I'm able to go sailing again.  I walk with my dogs about 5 miles a day, and swim about 3 miles a week.  I remember during treatment and shortly wondering if it had been worth it, and it surely was.

Hey Hepcat,

Great to hear from you! I'm glad that things are steadily improving too. It's a long road and I think we all still have days when we feel both elated and tired. Some days both at the same time! Sounds like it has been a steady road towards improvement and I hope you get some news that the fibrosis is also improving. Looks like that's proving to be the case for several people and that's a good sign for us all. Keep it up and stay in touch! Good luck...

Hi there Hepcat, good to hear from you again. 

Great to read your very positive update, sounds like life post treatment is going very well for you now which is very encouraging news.

Excellent to hear about your normal liver functions.

Thanks a lot for dropping by!  

Hi. I,m about 9 weeks after 26 weeks Peg/rib and am noticing differences. I was lucky in the fact of my fitness levels pre tx and carried it on as much as possible during. I just did a marathon ( 42 kms/26 miles ) on Sunday and it was one of my best paced marathons I have done ( not fastest but close) and did it in 3 hrs 37 mins. Quite a bit of soreness after but that wil get better. Energy levels are better as well. Will see how the next few months go.

I'm about a year EOT, took Sovaldi/Olysio: I'm SVR and doing fine although I have cirrhosis and need MRIs every 6 months to monitor a lesion.

After treatment I had severe neck cramps pretty frequently, along with memory problems. The neck cramps disappeared around the 6 month EOT mark, but my memory seemed to get alot worse around that time ( for example I was repeating myself in conversation and didn't realize it) , but this has gradually improved to the point that I think I'm pretty normal now for a 64 year old: I still forget stuff on occasion but have much better focus and am not repeating myself.

At around the 6 month EOT mark when things were at their worst I was really worried that I'd always be that way, the memory stuff really scared me. But I did improve, so if anyone out there is going through what I did, I think there's a good chance you'll improve as well.

Peace out.

-- Edited by bassetgirl on Wednesday 8th of July 2015 06:47:16 PM

I'm 16 weeks eot 12 weeks tx harvoni and I probably didn't start feeling better till 13 weeks just kind of blah. I think it has a lot to do with the not knowing if your clear plus the anxiety of all the blood work takes a toll.