Hep C Discussion Forum

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. 

 

 

 

 

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?"

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 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. 

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.........

 

 

 

 

Been away from this forum for a while, busy with my healing, building/planning, getting my immigrant family settled and trying to $urvive in this bad economy. My changes since I started this post 3 months ago are mixed.

The pros...........
Muscle cramps have all but gone.
Lost a little weight.
Sexual libido has returned to near normal.

The cons.............
My muscle/joint pains are still there even tho I have tried [without success] a few sessions of physical therapy, but on my own I have found some relief from simple yoga and stretching.

Fatigue is still there and slows me down to the point that I need an hour's rest after 2 hrs of med level work/activity. Makes for a non productive day. A shopping trip to the city leaves me totally exhausted.........even more than work.

Headaches have subsided somewhat and I've slowed down my ibuprofen a bit.

But that damn 'BRAIN FOG' still persists and seems to be increasing to the point where I feel that I'm getting EARLY ONSET DEMENTIA. I am quite familiar with the signs and symptoms of dementia having witnessed [and care given] my 90 yr old father and watched his mind and motor skills deteriorate to the point where he couldn't operate a light switch.
Me, I'm struggling with remote controls, smart phones that are too smart for me, etc.
My few computer skills are declining.
My spelling is 3rd grade level [thank god for 'spell check'].
My math skills used to be great, but I now have to use a calculator and often can't figure out the 'logic' needed to solve a problem.
Hard to follow plots on movies, so I now mostly watch news and short series or youtube.
Long, short and medium memory is declining as I have missed several important appointments, make lists, but forget to bring them shopping.
Mechanical skills are almost totally gone, as well as my electrical skills which used to be quite sharp.
My planning skills have declined when I really need them the most as I'm trying to build a house and home from scratch as an owner/builder, as well as introducing my immigrant family to the strange and crazy US of A.
ETC,Etc etc............

People close to me have noticed and remarked on it, so I know that it's not just my paranoia.

Any others have experienced this?? I call it 'Harvoni Haze' or 'hep C/Harvoni induced dementia.

And the TV ads continue to downplay the real side effects, saying 'Some people may experience tiredness and occasional headaches'

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

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

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

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 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

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 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...

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.

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. 

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. :)

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. 

2.5 yrs post tx cured. My memory is shot...i have lost my libido and am now on trt...My zest for life id 1/2 to 3/4 of what it was pre tx. I'm cured...but at what price?

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.

-- Edited by Groupergetter on Tuesday 28th of July 2015 02:32:23 AM

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:

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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.

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 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  

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

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!

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 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.