Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: FRED220 on August 07, 2014, 06:02:10 pm
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Hello to all, I read some treating with Sovaldi and Olysio had brain fog. Can you please share your experience with brain fog and if you were able to work full time. Thanks
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The brain fog is what the Hep-C causes and many are unaware of it until the virus becomes undetectable. It's a side effect of Hep-C (not treatment) that I was dealing with for over a decade, and didn't know it until I became virus-free and the fog lifted.
The only way I can describe it is that I'm sharper, have more clarity of thought, more sociable.
Some may notice, some may not. For me, Hep-C caused fatigue (I just felt tired all the time) and thought many times I had mono (Mononucleosis). I found out in 2001, however, what I was feeling wasn't mono - it was Hep-C side-effects. Chronic fatigue (which a very common side effect of the infection) causes decreased mental sharpness (the fog).
I started treatment in January (SOL+INTF+RIBV) and, even though the interferon made me feel like crap (be glad you're not taking it) I could tell that the Hep-C fog was dissipating. This occurred about week 4 of treatment (which is about the time I cleared the virus).
Simply put, I didn't realize that Hep-C effected both my physical well-being -but also my mental clarity. I found this out once I cleared the virus and it only gets better!
Best wishes, Mike
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Mike, I did not know it was from the Hep-c, I thought it was from the meds. I did not know Hep-c affected the mind, I was worried since I work all day with numbers and reading. I got the virus in 1974 at the age of 13 and I really have felt pretty normal, no fatigue, no fog, no sleep problems and no pains. I was so young when I got the virus that maybe now when I am cured I will see the difference. Thanks
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Hi Fred220,
I forgot to address the work while on treatment question.
I'm a vocational rehab counselor and an expert on how disabilities can impact work, how treatments can impact work and/or how both can affect a return to work.
In the old days, when the only treatment for Hep-C was 48 weeks of Ribvirin and Interferon, working while doing this treatment protocol was very difficult - if not impossible for some. I know this first hand, as I did the dreaded 48 in 2001 (the treatment didn't work and I almost lost my job - but for FMLA).
Fast forward 14 years, and I completed 12 weeks of Solvaldi, Interferon and Ribvirin in April, which was very doable since the treatment went relatively fast (12 weeks v. 48). I was able to work without much difficulty.
It seems like the Interferon is the main culprit, and now there are highly effective treatments that don't involve it at all (S/O).
In 2001, while on treatment with Interferon and Ribvirin, I felt like I had the flu, everyday for 48 weeks; somedays were worse then others. Just felt like crap - all day, everyday. There were no fog like symptoms - just the malaise associated with a bad case of the flu.
When I did the 12 week treatment 2014, it was nowhere near as bad - and the side effects were tolerable.
Simply put, you should be able to work without much difficulty - especially if your treatment protocol doesn't involve Interferon.
I hope this answers your question.
Best wishes, Mike
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Talking about this fog--about 5 years ago--I started losing good jobs over what I thought was stupid stuff--not fitting in--complaining--at work---and personal life got real boring, quit being interested in lifelong hobbies--started selling off stuff for no reason.
I think the hep C was affecting my mind--doctor says no---any thoughts on this?
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Desertguy,
I don't think I can answer that - sometimes we can get bored with life, anxious, frustrated - existential anxiety - a transition from being youthful to being middle aged.
It could be a number of things.
I'm sure, however, that a chronic Hep-C infection didn't help.
Mike
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Hi fred
Im on the s/r combo week two. I work full time in a business office for docs. I work with numbers, patients and problem solving all day. There have been some moments of focus issues in the later afternoon for me and this is usually accompanied by restlessness. Its not a fog but more of a n anxious moment. Althogh it has happened twice it lasted about 30 minutes. My doc prescribed xanax before treatment to help with this. The two times it happened i took a half dose to get me through and it helped.
Good luck with your treatment journey!
Keeping the faith... Virginia
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Hello virgha828, hope you are well and thanks for the suggestion.
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As I understand it the brain fog is a result of the virus. I too have been living with it for years and blaming my absent mindedness on menopause. I cant focus: I forget what I'm doing all the times. I get distracted and the next thing I know I've got three project going at once. I forget I've got something in the oven until I smell it, forget to let the dogs in. I cant remember names of people or movies I've watched. Math in my head and spelling are hard for me. This has defiantly taken a toll on my job performance, just ask my last two employers. As for driving, I just don't trust my judgment anymore. Is it really possible this treatment can help me? I sure hope so.
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My brain fog feels like my head is up my ads. Hoe somebody smiled. Willie g
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I met my ass not my ads..this DAM machine
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Hi guys not sure if you all know ,if youve seen this on another forum here sorry but for those of you that dont know .... Started at 6 million plus. 1 week lab on meds.... 520!!! I am very excited! Yay!!!
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Hi Fred, I'm on to week three s/r tx. Started having brain fox from ribavirin last week. Went to grocery store, forgot where I parked. Left my credit card at the department store. Did I already feed the dog? Where are my glasses? Can't focus. It's not really a 'fog' for me, more like attention deficit disorder. My mind is crowded, and I'm always somewhere else in my mind.
I'm writing everything down. Don't trust you'll remember, you might not. Oh wait, where DID I put my organizer? LOL
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I have had brain fog before starting treatment.
I am on Olysio and Sovaldi and I can tell you that it really does affect my head, I would say it is a main symptom.
I am a researcher and I have to mentally be on my toes so to speak much of the time. The way the brain fog feels is like there is literally something standing between you and your thoughts. For me also retrieval of words is difficult and spelling has become really difficult. It's sort of like a day without sleep and having HCV for me but way more pronounced.
Also the brain fog is something I feel. It makes me tired and it's like I can feel it in my eyes? I know that sounds weird but it seems like everything is happening in slow motion. The one benefit to the brain fog on tx (besides the cure!) is that I don't have any anxiety about it. I might not be able to think, OK and I find it especially hard in the AM after I take my meds but I don't feel anxious about it. Maybe because I can say, it is because of these meds, my mind is a little less sharp.
Also to women out there - kind of like pregnancy brain...late stage pregnancy brain!
Kathe
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Mike, when I reported brain fog to my hepatologist, he said its a symptom of cirrhosis, and since my biopsies were stage/grade 0-1, I may think I have it, but I dont! So, is brain fog a symptom of the virus, or of liver disease?
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Dragonslayer -
I am in the same boat HCV wise, inflammation 1 0 fibrosis, but I have experienced it before treatment and I have been doing some reading about it and it is clear that HCV does cross into the brain and causes this impairment.
Definitely on the treatment I feel this much more severely! But there is an article that demonstrates in HCV responders with SVR their cognitive abilities improved! This was not among a sample that had cirrhosis...I will try to post this here.
http://hepatitiscnewdrugs.blogspot.com/2013/01/improvement-of-neurocognitive-function.html
Good thoughts for SVR for everyone I am on day 7 of tx and it really is a pain the behind!
Kathe
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Thanks for the link Kathe. It pisses me off when we often seem to know more and have read more research than the experts and pros. And it certainly is not just the brain fog issue.. My palms used to always be pretty red. Now, with only 2 days left on my 8wk Harvoni treatment, the brain has appeared to have largely cleared and my palms are no longer red. Both symptoms I was told were symptoms of cirrhosis and therefore to pay them no mind. The brain thing is tough for many in our demographic because it's also the age when many boomers first present with Alzheimers. Still it seems many of us know our own bodies better than the pros sometimes!
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Paul -
As I said before I don't have fibrosis or cirrhosis (we are both blessed). I also have red palms and I have always been told that this is a sign of liver disease or HCV but that it doesn't mean that you have cirrhosis. My understanding of dx of cirrhosis is either a biopsy or a fibroscan. And since you know your stage it is clear that you don't have it.
Sometimes docs can throw around terms or can cause us anxiety but not being clear. I am thrilled though that your palms are not red now. That is awesome! Hoping for a SVR too.
Kathe
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Paul,
May I ask how do you put your details in your profile about tx and liver disease level. Thanks I am new to the forum.
Best,
Kathe
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Paul,
May I ask how do you put your details in your profile about tx and liver disease level. Thanks I am new to the forum.
Best,
Kathe
Sure Kathe... Go to top of the page Profile/Forum Profile/Signature.. There you can enter anything youd like to appear at the bottom of each of your posts. Oh, btw, here's another symptom I was told wasnt related to my HCV, in addition to red palms and brain fog: occasional pain in my upper right quadrant right up under the leading edge of the rib cage. Again, 'the liver feels no pain', hence, I must have been imagining it or it was something else.. Im not going to bad mouth my hepatologist all that much because, after all, Im finishing up 8 wks of Harvoni, so he did manage to get me on that along with the wonderful specialty pharmacy he uses.. Hes also a transplant hepatologist, and, when he orders liver biopsies, he does them himself.. Ive had two of them. The first was back in '08 and was extremely painful, done in another city by another hospital. The most recent was in mid 2013 done by my current hepatologist, and with the help of the right amount of fentanyl and whatever else he gave me, I felt nothing.. It was such a huge improvement over the last one. So, Im not implying hes without skills.. But it shocks me that they can be so monolithic in the way they view symptoms.
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I had brain fog from the Hep C at times, but 7th week in to Harvoni and its noticeably worse on this tx. I am so forgetful and as many reminders on my phone I can set, I still miss things and today I forgot to take my pill again (took it 5 hours late after a mistake call from my doctor made me remember). I even have 2 alarms set to remind me but I saw the first and was distracted, somehow didn't see the 2nd. All the other stuff I don't care about but I hate to forget my pills.
I know I have too much on my plate right now, so much that even a normal person not on treatment would have trouble to keep up. But it's very hard for me to call any of that off, it's my life's work and I cannot stop it to rest for this. I'm just trying to get by as I can day to day and write everything down.
But I know that this medicine is affecting my thought process. I hope it's temporary and i'll return to normal when I finish this and hopefully even better without the Hepc.
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Hi,
It only makes sense that the meds enter the brain , if the virus is there. Depending on how sensitive one is to the meds the reaction could fluctuate.For me what came naturally to me while on meds got better, what I struggle with became more challenging.Close to the end of my 24 weeks of sov. and riba, I really fell apart. It was too much personally expected of me and no respite due to my meds. I lost 15 pounds, which felt good, now I know that over feeding the liver is not good for it, and 8 weeks post therapy I am gaining weight , but trying not to abuse my healing Livey the liver as a work colleague has named her.Actually,naming her Olivia the Liver helps when I still ocassionally feel liver pain, stress and anger bring it on as does over eating.Laughter feels good . Exercise pours oxygen into olivia and we feel GREAT!
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Hang in there Nicole, you can make it. I hope the rest of the day goes better for you.
AL
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Losing interest in most everything. Waking up in a strange house of 30 years. Getting lost in town. Remembering nothing. Getting easy words wrong. Unable to clean and organize. Ending with just paying bills and nothing more complicated, and how long was that to last. No one mentions the brain fog. It was a bad as the fatigue. I begged for this cure as I could not go on much longer. My last 2 or 3 years were wasted but maybe 10 years were effected. Once I was on the rx and my mind cleared I cried a lot about all the lost time and unfinished business. And who stole all my stuff. And how I was dying all alone and no one cared. My mind cleared but the meds also confused me at the same time. The guilt of my own life's results were hard to face. I am just glad that hopefully this cure holds and I can start a new life surrounded by people who care. Or not. I will just keep trying. As my mind cleared I thought, 'Gee, I will understand Einstein soon!' But that leveled off. Can't expect more than when you started!
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Hi Kim
So sorry to hear of all you troubles.
Do you know the condition of your liver? Do you have F4 Fibrosis aka cirrhosis?
If you do have cirrhosis are you being followed by a hepatologist associated with a liver transplant center?
Have you discussed these symptoms with your treating doctor?
Good luck on treatment
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Hi Lynn; No, my liver is good, a 2 or so. I am wondering about my extreme brain fog. I was thinking ammonia overload but that has never been mentioned. They say a high viral load doesn't effect the mind. I find that hard to believe. I have never seen a doctor, a gastro man. I see his nurse practitioner only. Much of the fog has lifted with the cure. Hopefully just something that will fade into the past. One thing that bothers me, the researchers don't seem to want any info from the patients they are treating. Seems a lot of info we have to share is being lost. We are being unstudied except for whatever they collect from the doctor's basic records. Probably they want to protect themselves from future problems pushing drugs untried and unproven.
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Hi Kim ,
I can relate to you well, you described hepc well, I also have compassion for us who have been through very difficult mental and emotional battles, We all long to be well and free from the debilating effects of hepc, then to endure the treatment regimen also, it's enough to make anyone cry,
So, take comfort in this, God is the source of strength and help, put your trust in him.. You are not alone...
Hope you get well soon..
No one really knows the struggle of hepc like the people who have had it for 30-40 years, Dr's really have no clue concerning the scope of living with hepc, how can they if they NEVER had it to begin with!
Their training is predicated on science not actual experience...
They do the best they can, but you know more about hepc than any Dr. Who never had it..
You should ask the Dr. To do an ammonia test and and iron test, if your ammonia is over 122, you will definelty feel HE symptoms, brain fog, also limit the amount of animal protein in your diet, it will help..
My ammonia was at 222 prior to treatment, the last test I had 2 weeks ago was back normal..
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From the Harvoni prescribing information sheet
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
-------------------------------ADVERSE REACTIONS-----------------------------
The most common adverse reactions (incidence greater than or equal to 10%, all grades) observed with treatment with HARVONI for 8, 12, or 24 weeks are fatigue and headache (6.1)
To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
If you want to report something this is where to do it. The FDA WANTS to know that is how drugs that were originally approved and later found to have unknown sides are either have warnings added or the drugs could be pulled if they are too dangerous. This is how the FDA finds out is by using the contact info above.
This comes with ever prescription the thin paper we all throw away has a wealth of information about drug interactions, known side effects, any warnings and precautions. How to take what to do if you miss a dose of take too many. And clinical trial results all on that paper and this link
Good luck
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For me brain fog can be described as "temporarily losing 30 IQ points and not caring". In my humble opinion, if a person is mentally present enough to genuinely worry about brain fog, they probably only have the mildest of mild cases.
Hope this makes sense.
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Hmm I never knew the "fog" could be from the liver issues. I thought I was just getting spacier in my old age. Geez..I've spent a significant % of m life looking for my keys or w/e I just set down. It'd be great if that fog lifted post treatment.
During treatment though has been interesting. I'm a bit better now at almost 9 weeks in but there was a period of about a month when I was really bad. I was losing my place mid sentence. Reading was difficult because I had to keep going over things and trying to make anything in writing make sense took so much effort I either blew off communications or just kept it to a couple lines.
Hopefully that's really passed. That's the other thing I've noted; just when I think I have a handle on what's going on... something changes.
*cheers*
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Actually, the "brain fog" doesn't appear to relate to the liver or liver functioning. Research indicates that it is most likely due to the fatigue associated with an HCV infection or a direct effect the actually virus has on brain cells/cognitive functioning.
Best wishes, Mike
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Not sure about the source of that research, but no one is ever going to convince me that brain fog is not related to liver function (or more accurately dysfunction)
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My brain fog comes and goes as a direct result of the liver's ability to detoxify the blood. My blood ammonia levels were over 220 at one point. I had serious brain fog during this time.
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Not everyone with HCV-related "brain fog has liver damage, which the research consistently notes. In fact, 70% of those with a chronic HCV infection don't have any liver damage.
Because of this, it cannot be said that HCV "brian fog" is primarily related to liver function and/or damage.
Here's some articles/research that discuss this:
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=7&cad=rja&uact=8&ved=0CFYQFjAG&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC3160562%2F&ei=MqQ6VYyaB8SQsQSwpYCgCA&usg=AFQjCNHCfseM5liZpU2QIAd2ki1xQjmiSA
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCIQFjAA&url=http%3A%2F%2Fwww.healio.com%2Finfectious-disease%2Fhepatitis-c%2Fnews%2Fprint%2Fhcv-next%2F%257B0c4da4f4-276e-4f3a-8451-ac57503fa99d%257D%2Flifting-the-brain-fog-hcv-and-depression-in-the-daa-era&ei=yqQ6VZuBNKbhsASF_YGoCQ&usg=AFQjCNHtUiXyUKNPqijSAjz2yZCwSU6shQ&bvm=bv.91665533,d.cWc
Best wishes, Mike
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Here's another research study on this issue:
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CCkQFjAB&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC3582302%2F&ei=oac6VZm4HcXHsQSg6YGwBQ&usg=AFQjCNHLlFGH-huH2vVQCLG4xa67CJukKQ&bvm=bv.91665533,d.cWc
Best wishes, Mike
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Here's another research study discussing HCV and Brain fog, as a factor of the viral infection cf. liver damage:
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CB8QFjAA&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F15793853&ei=jag6VZHNJZPIsQSlqYH4CQ&usg=AFQjCNFUelRU5ksrjN8V78QJw8acVHhgnA&bvm=bv.91665533,d.cWc
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Hi Mike
I really like your explanation of chronic fatigue and brain fog makes total sense to me.
http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/symptoms/con-20022009
Symptoms
By Mayo Clinic Staff
Chronic fatigue syndrome has eight official signs and symptoms, plus the central symptom that gives the condition its name:
Fatigue
Loss of memory or concentration
Sore throat
Enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Unrefreshing sleep
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Many of those sound like the symptoms people here report of either brain fog, muscle aches and joint pain.
Then the say about 30% of people with cirrhosis have mild Hepatic encephalopathy but that is due to liver damage and a symptom of advancing liver disease.
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Harvoni does cause brain fog. Check www.gilead.ca. Seems Canada is more open about side effects there are.
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Do you mean the sides listed on page 8 under the heading:
Less Common Clinical Trial Adverse Drug Reactions (< 2%)
And anyway for folks like me with advanced liver disease I will run that 2% brain fog risk vs the complications of cirrhosis
Also bearing in mind that is not the experience of 98% of patients and that around 98% of patients are cured of hep c with Harvoni.
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Lynn, Also 4 weeks post-EOT undetected and couldn't agree more. Hep C induced brain fog was bad, Harvoni-induced brain fog is a thing of the past.
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I don't really know about brain fog personally only thing I have ever noticed was being tired and who knows if that is from hep c. So I really can't say I have had hep c symptoms.
I have had symptoms of cirrhosis edema and some ascities and esophageal varicies but no symptoms of hep c.
Except for having cirrhosis I guess I have been more fortunate than others.
Good luck to all in beating hep c
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harvoni is going to end up like the solv,oylisio drugs etc. you will have plenty of side effects after treatment they admit it cures hepc which is fine but hang on you will see in the end.they saY TREATMENTS [NEW] GET BETTER ad better they said that about sol/oylisio,,it came quick, went off the market quick and that was the new wonder drug,in my case and others my post treatment has not been good. im still wating to be able to read again and for other stuff my body is going thru, never had it before and I know its a fact it was that treatment,,so that was great they said well we will see what harvoni brings to our new customers. its great to lose hep c and to hrar the treatment is a cake walk. but wait till you have had ALL OF THE CAKE hope your all doing well as im sure a lot of you are but there are plenty who will in the end say'' was the trade off worth it. 3 months or so there will be a new one, kinda weird eh? the know it alls will say this is rubbish, all I say is ''do your homework,,everybody isn't nuts, they know their body and new symptoms and don't take dr. opinions, moderators and on and on as the whole facts presented and good for them labels and titels in many cases are JUST THAT'''just willie g''
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>>harvoni is going to end up like the solv,oylisio drugs etc. you will have plenty of side effects after treatment <<
Rubbish.. this kind of blanket condemnation of the best and easiest to take HCV drug to date is not only irresponsible, but as, a general proclamation, totally untrue. There are those that appear to have lingering sides, and those who dont.. Being in the camp that had an easy go of it, I resent posts like this which sound like it speaks for all Harvoni veterans. Most assuredly, it does not.
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willie g
Sorry to see you are having a difficult time but your experience is not representative of what most experienced.
I did not experience any side effects on treatment except from ribavirin induced anemia but that was manageable and quickly resolved post treatment. I have no lingering effects now here 10 weeks after completing 24 weeks of Harvoni and 15 weeks Ribavirin.
Olysio may fade from the market but for many right now sovaldi is the primary treatment for many patients not everyone is genotype 1.
As for was it worth it, for me with advanced liver disease F4 cirrhosis of now 7.5 years since diagnosed, my options are to treat or wait to decompensate completely and hope and pray for a liver transplant or die waiting for one. Or be treated and cure my hep c.
Hep c and cirrhosis have already somewhat diminished my quality of life. For me treating is worth any risk.
Hope you find help for your post treatment problems and you are feeling better soon.
Lynn
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willie g......we appreciate your interesting and frank comments regarding your personal experience with unwanted or unexpected negative effects which presented after completing your S/O therapy...
...assuming you wouldn't mind can you please list a few of these new firsthand adverse reactions, being specific within reason (i.e., perceived chronic breathing difficulty [reduced lung function]; kidney issues and unusual skin conditions; reduced global muscle mass and inordinate bone/joint and muscle pains; mental bouts [general depression, apathy, malaise]; a general sense of not well-being and so on)...thank you.