I read on several post some individuals treating on Sovaldi and Olysio had brain fog. Can you please describe what you feel like when you have this side effect. Are you able to work? Please share, thanks.
I think it's probably almost impossible to make a generalization about this new drug combo. I do feel that more women suffer symptoms than men, but that's my own take and my docs. Because of hormonal related issues and the liver is the general of the hormonal system...but don't take that to the bank, largely anecdotal and not scientific. But these drugs play out on everyone differently because of so many other issues. How advanced is your liver damage, have you treated before, etc etc. What other medical issues does one have going. To me it's not wholly unpleasant, it's just that youre not as sharp. I found I still could (pretty much) do the things I like doing, like reading literature...but if it involved numbers? fogetaboutit. But that's just me. The brain is sooooo complicated. You might not hardly have any symptoms AT ALL...like many report. And I don't even know what kind of work you do? If you were an air traffic controller is a bit different than than working retail, etc. Perhaps others will give you their takes. I feel (from what I've seen) that youre a bit intimidated by this process (don't mean to offend) believe me, it's completely doable. It's not like the old Stand of Care -- not by a long shot by everything I know and have read and seen. Youre lucky to be able to do a treatment that is far more gentle and easy to do. And for only 3 months unless youre extending. Anticipation is usually a lot worse than the actual fact. I know, I've been there, I was deathly afraid of drugs, than I went through chemotherapy 3 times so this didn't freak me out as much. You'll be fine!!!!!! Hope this helps.
Hepatic encephalopathy (HE)
Hepatic encephalopathy is the loss of brain function that occurs when the liver is unable to remove toxins from the blood.
The exact cause of hepatic encephalopathy is unknown. Hepatic encephalopathy is brought on by disorders that affect the liver. These include:
Conditions that reduce liver function (such as cirrhosis or hepatitis)
Conditions in which blood circulation does not enter the liver
An important job of the liver is to make toxic substances in the body harmless. These can include substances made by the body as well things that you take in (such as medicines). However, when the liver is damaged, these "poisons" can build up in the bloodstream. Ammonia, which is produced by the body when proteins are digested, is one of the substances normally made harmless by the liver. Other toxins may also build up. These things can cause damage to the nervous system.
When liver damage occurs, hepatic encephalopathy may occur suddenly, even in people who have not had liver problems in the past. More often, the problem develops in people with chronic liver disease.
I apologize, I posted the above last night...received a phone call and didn't follow-up here.
HE is a side effect of liver disease...commonly referred to in the Hepper world as 'brain fog'. A lot of folks treating....esp with S/O...have advanced liver damage and therefore possibly have different levels of HE.
The most common side effects of S/O are fatigue, headache, nausea and insomnia. I'd caution you of two things...
1) Make sure the side effects you hear or read about are with S/O and not Sovaldi in combination with interferon and or Ribivirin. For example, when I received my drugs from the Speciality Pharmacy the sides were listed that included interferon/riba. Why? Because that's what is FDA approved. None of the prescribing information for Sovaldi or Olysio refers to the combination of them together.
2) Remember that each of us brings our own personal set of issues to the table. If you look at the side effects from Cosmos...the study of S/O...there were more sides experienced from folks with more advanced cirrhosis than those with little to none. For example, I personally had early cirrhosis(I Hope lol), no diabetes, cryo, Thyroid, high blood pressure etc and I had practically NO Side Effects. Those that have pre-existing conditions prior to treatment seem to have more issues during treatment. Are these pre-existing conditions a result of HCV? Possibly. Are those conditions going to improve with the eradication of HCV? Possibly.
I would suggest that while sharing our own experiences is valuable...we each need to realize that we are all individual with our own set of circumstances.
Great post Pamelajean. I didn't mean to infer that all people who treated with Sovaldi& Olysio would get their numbers calculation abilities degraded after having treated, that just happened to me. Even if you do get a little "brain fog" --of course it's not going to be exactly like mine, nor is it for certain that YOU WILL even experience brain fog, there are toooooo many variables, and there's nothing written in stone.
Seems to me (from just anecdotal evidence I see at these forums, because there isn't a lot written on this subject, this treatment is so new) that many barely get any symptoms at all, and now it's coming in that many of those people are reaching SVR!!!.
I'm not trying to be sarcastic here, only helpful...my mother used to tell me over and over, don't buy trouble. Worrying about tomorrow is only ruining a splendid day today. I know that's A LOT easier to write than follow, I sure can't follow it all the time...but I remember looking at those treatment bottles with affection, if I can say that. Because they were going to be the key to finally getting rid of this awful beast that has been plaguing me for years now. I'm not SVR yet, but that's what I'm hoping for. Will you be able to keep working with "this" treatment? I would hope so, so many seem to be able to, some did with even the older treatments and they were much, much worse than this with a much longer duration. I don't know how long you've had this but believe me, you are going to be elated when you get rid of it, to me? That would be my main concern. Whatever youre going to do, when, etc...I just wish you the best of luck. To me?This was completely doable, considering the various sides I have.
Hey Fred, sorry to have sounded so preachy in that post, that was a bad day. Remember, I and some other people here have prior conditions, etc And I might be older than you, so many factors can be added to the equation. I'm sure youre be fine!!! And best of luck to you! I keep reminding myself that this might be gone, which is the best thing that could happen!
No big deal Sovaldi13Newbie, I too have great days and not so great days.I have been asking questions left and right since I start treatment on Aug 22, I am afraid of the meds. and when the WHAT IF gets into my head I need as much info as possible. I will start the S & O no matter what since I am F4 and not doing treatment is not the way to go. Its crazy, I am afraid of the meds but did not have a problem drag racing my KZ900:)
I too look at the 2 empty bottles of solvaldi an reminds me I'm two thirds into treatment. Don't have a clue why I'm hanging on to them, maybe it's HOPE. I do understand your comment about looking at the bottles affectionately. To me, it represents a possible "new life".
Mary: I thought I was the only one keeping those empty pill bottles! My husband just shakes his head. I Told him the I might make a 3-D picture out of them when all six months' worth are empty (assuming SVR)!
Whatever the reason, it comforts me to look st them and watch the number grow to completion. Pat
Count me in on the saving bottles groupies. :-) In our case, I have six bottles! I think it's because they represent hope that he will finally be rid of this monster virus. They are proof that he walked the distance and did his best to get there.
In his case, because of his particular medical condition (post transplant with cirrhosis again) he had bouts of HE throughout treatment but I would not expect someone else to have the same experience. At no time despite the difficult time he had on treatment did he consider stopping it. So I wish you the best and advise you to
just focus on getting rid of the virus once and for all.
You will soon find yourself looking forward to taking those pills just so you too can save those empty bottles (even if it's just until you reach SVR)!
You will be fine! Brain fog can best be described as mild confusion. It kinda comes in waves and then disappears. You never lose sense of self, as its almost similar to exhaustion of the brain. If you take a snooze, you then will be refreshed! These drugs are very manageable. Eat often, drink lottsa fluids, get out and walk, rest when needed, and surround yourself with loved ones. Focus on what an amazing new life you will have when you start to feel down.
Thru it all remember in the scheme of life it's only a few months of Tx, and a lifetime of wonderful new memories to enjoy.
We will be here every step of the way to cheer you on, and help should you have questions.
It's really that simple!
Hi Fred, as was mentioned above the older tx with peg and riba was much harder to do for people but people were able to work in all fields I did the Peg, Riba, and a Polymerase inhibitor trial.
The brain fog was confusion for me as well. I worked the entire time on tx. I was not 100% but I was able to do my job albeit a little slower than normal. I never forgot how to do my job, I just had trouble multi tasking.
It was difficult but I and many many others did it and were able to continue working. It is a good idea to have a back up plan. From what I have heard the newer tx's are easier, shorter length of time and people seem to have very little side effects.
You could click on the magnifying glass icon at the top of this page to search for your exact tx, that way you could see others who are on the same. I think that would help you quite a bit as most have not had many side effect.
You are going to do fine, you are treating at a good time as the new meds are so much easier and shorter duration.
My liver has never been bad enough to say that the brain fog is from encephalopathy. I think that's usually for people who are higher stages of fibrosis or cirrhotic?? Anyhow, I am way too familiar with brain fog. For me it's like putting your head in dark closet at night with no light and trying to find a missing shoe. Like the lights are out and nobody's home sort of syndrome. If that makes any sense? I was talking to somebody and literally could not remember the word 'golf club'. That's real bad considering I live on a golf course.. LOL. I'll be very happy when I've been off the meds and they've had a chance to clear out, so that I can think at least a LITTLE better. I have 4 shots left and then, expect it will be at least anywhere from 2 wk to 2 mon. before the normal feeling me is back.
Hello Dee, I read in another site that the brain fog is from the hep-c and not the S & O treatment. After all the good suggestions I have gotten here I am feeling pretty good about starting treatment soon . Thanks.
I would just say that it's always good to remember that these drugs, and the disease, play out differently on everyone, we are all vastly different in age, race body systems, the whole gamut. Yes, I had a little brain fog from the hep c and the S & O...which one is which and when who knows? I see many, many people on these boards hardly affected by these drugs AT ALL. And I also know that at 60 I'm probably not going to be as quick on the draw as when I was 25, or 40 and on. But I can still do a lot of thing like read literature on a high level, play Scrabble but little things throw me now and then. But shoot, I'm in menopause, ask some women how that messes with you? Ha! But then some women are not bothered by that at all. See what I mean? These drugs are a walk in the park compared to the other Standard of Care like I mentioned earlier, I'm am feeling better but then I have other issues too. You will be fine! Really, if you cruise the various boards, you see so many people reporting very little sides from this.
So I just took my two empty pill bottles out of the trash (finished them yesterday) so I can join the saving bottles groupies club. When my second 4-week supply arrived a few days ago, I kissed each one of them before tenderly putting them safely away. I was so used to giving back medication to study groups because it didn't work.
This is my fourth attempt at treatment. I am on Sovaldi & Olysio only. At week 2 my VL had gone from 3.88 million to 531, and my liver enzymes were normal. I'll know next week what my VL is and very much hoping it's zero. That's what my doctor's expecting. Here's what I want to emphasize to FRED220 and also just throw out there. I FEEL better. I could almost tell it was working because I've started looking at projects I've wanted to do for years and now feel like doing them, am eager to in fact. I'd guilted myself into thinking I was lazy. I didn't realize how sick I've been and for how long, like 15 years. I'm afraid to jinx things by posting here, but I want to help others by sharing my experiences.
I had quite the dilemma with the brain fog. I was thought to have Hepatic Encephalopathy from cirrhosis, which meant my liver was/had decompensated(ing). I was put on Lactulose (yyyechhh!) and Xifaxan. The conclusion has been changed so that I don't have HE but my brain fog is being caused by another medication I take that I have to have. Where the liver comes in is it is unable to get rid of that medication effectively, but I'm being kept on Lactulose and Xifaxan to just not rock the boat at this point.
My brain fog feels like I haven't slept in 3 days. I went on disability in 2005. I was barely holding it together in my career while I waited to see if I would be awarded total permanent disability, and I was. All I need is a nap and I'm good as gold, but I agree with everyone else here. It's different for everybody. Another reason for me to be kept on the Lactulose is I would have 3 or 4 days without using the bathroom, and my regular meds plus the HepC meds were all stuck and swirling, making me feel like I had brain fog.
I did three prior nasty treatments with interferon and ribavirin and failed all of them. These new drugs, don't worry. My doctor says he's seeing the same from everyone, almost no sides. I have fatigue. That's it. That's nothing. I hope I've been able to help some. Take care. Keep us posted.
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