Aa
Brain damage
Another website I read is that treatment may give youbrain damage?Any one on here ever heard of that?Trying to see if it was false info or not
it all depends who you ask - but theres no brain "damage" listed - side effects occur during use of a drug - people who claim all this damage happens after stopping the drugs should maybe continue to use them - who knows - in reality nobody knows - not even professional researchers and they readily admit this - when its all said and done for me it comes down to benefits outweighing any risk - perceived or actual - and actually my prescription and over the counter meds pose as much or more of a threat
Hi Stranger!!!!!!
I hear you are giving it a try again. I sure hope it works this time for you.
As for the brain damage... I did the normal 48 weeks, no extra anything, and my brain still isn't back to normal. I finished tx on March 18, and had lots of pain at first, but thankfully that is gone, but I still can't read all of the words on the TV screen before they change to the next screen, and I can't take in all of the details... I have to aim for just the main idea or I miss the whole kit and kaboodle.... work is near impossible so I am going back to doing hair... don't have to keep so many details in my head doing that.
Diane
I hear you are giving it a try again. I sure hope it works this time for you.
As for the brain damage... I did the normal 48 weeks, no extra anything, and my brain still isn't back to normal. I finished tx on March 18, and had lots of pain at first, but thankfully that is gone, but I still can't read all of the words on the TV screen before they change to the next screen, and I can't take in all of the details... I have to aim for just the main idea or I miss the whole kit and kaboodle.... work is near impossible so I am going back to doing hair... don't have to keep so many details in my head doing that.
Diane
Hi, wanted to share my dads experience. He was 64 in 2004 and was living with asymptomatic Hep C since diagnosed in 2000. Biopsy of liver showed stage 2 fibrosis and he likely contracted 30 yrs ago via transfusion. He was persuaded to go on 48 weeks of Peg/ribavirin. At week 20, neuro symptoms of balance, weakness and fog peaked. At same time went acutely hypothyroid, corrected with meds. He cleared HCV at end and neuro seemed to return to normal but continued to need thyroid meds. 1 year after treatment completion, neuro symptoms returned, progressive, speech changes too. Went to neurologists who were unimpressed with any relationship to Interferon. Brain MRI revealed severe atrophy of his cerebellum but only 1 year earlier he was perfectly fine! All issues started on treatment resolved after but then returned. How can this be coincidence? Year after year, he has worsened and repeat of MRI shows much progression. We have fought and fought for IVIG to treat as Hashimoto Encephalopathy, but doesn't respond. Helpless. Interferon is a POWERFUL immune system modulator and can turn on autoimmunity to self. I believe this is what happened to my dad. Although nobody else agrees. All we know is he was 100% functional and healthy the day he started trial and never same since. Has anyone experienced anything similar or so extreme?
Oh I absolutely do think that both the dosage and duration of the tx that I did contributed to the long term side effects that I have experienced. I did two tx'es, one for 15 months using daily (non-peg ) interferon, ending up with five months of the tx using infergen 2x/day for two weeks, and then daily at 15 mgc. I did finish undetected, but relapsed, since I had been forced to cut the Ribavirin down to less than half the prescribed dosage. A few years after I did the 72 week Peg-Intron, Riba tx, along with Procrit to prevent anemia and keep the Riba at full dose. I also used a dose of Peg-Intron that was approximately twice the amount required for my body weight, hence the "doubledose" nickname. I have been clear of the virus for over seven years now, and my fibrosis levels have been falling, according to the fibrosis blood tests, and all my liver and blood functions are in the very normal range. The odd thing is that my worst symptoms came after ending the last tx, and becoming SVR....just about three weeks after ending the tx. For the first few weeks I felt like I was 18 again, and was filled with energy, no pain, motivated, felt fantastic far beyond what I could remember for decades! Then it all hit like a freight train....joint pains, skeletal and balance issues, skin eruptions, tinnitus, troubled sleep, muscle cramps and general body pain, stomach disturbances, and on and on. Sun sensitivity, mouth sores, and frequent panic attacs also were par for the course. Many of these symptoms have slowly been abating over the years, and its taken a concerted effort for me to finally get my system back on track again through aggressive exercise, dieting, and attempts at stress management. I am probably 80% better than the year after ending tx, which was pretty 'hellish', but am not fully back to what I would call normal for my age, or my perceived physical shape and appearance. I am now trim, muscular, can run for an hour, workout regularly, etc, and my blood and cardio tests are all great....but I have bouts of fatigue, brain fog, memory lapses, lack of motivation, and from time to time balance issues, eye sensitivity, and periodic mouth and tongue sores. Lingering reminders of very powerful tx'es.
That said, I think we all react uniquely and individually to tx and interferon. As we all have read in past literature, some people have severe problems almost right out of the box, using interferon, and become depressed, or develop autoimmune issues, become mentally unstable, etc. while most others handle it fairly well, from it being "a breeze" to pretty difficult, but doable. So yes, I am sure my long term tx'es contributed to my problems, but that does not preclude someone who did only 24 weeks, and SVR'ed from having difficult or long term side effects after ending tx. I think its all very individual. Many people come away entirely unscathed (though I often wonder just HOW many), and most people handle the tx, and manage through the side effects and after-effects so that in a year or two they are feeling pretty good. I am AMAZED at how unwilling the medical community seems to be in conducting rigorous studies of the exact and specific experiences of people who have completed tx!!! Funny how little research money and how little appetite there is for these sorts of studies, by either the Pharmaceutical companies, or the medical research community....well I guess if they are waiting for the pharma's to fund those studies...we are going to all have a long, long wait...until some place below freezes over...isn't that the saying? I just can't help being a bit sarcastic at such a glaringly obvious area of disinterest by the medical community....
Anyway, better luck to you on the next go-round. With the new cocktail combos you should be able to slay this dragon, and do it in less time than your previous tx attempt. I am glad you did not suffer after effects, and maybe that is a very good predictor for you. Best of luck!
DoubleDose
That said, I think we all react uniquely and individually to tx and interferon. As we all have read in past literature, some people have severe problems almost right out of the box, using interferon, and become depressed, or develop autoimmune issues, become mentally unstable, etc. while most others handle it fairly well, from it being "a breeze" to pretty difficult, but doable. So yes, I am sure my long term tx'es contributed to my problems, but that does not preclude someone who did only 24 weeks, and SVR'ed from having difficult or long term side effects after ending tx. I think its all very individual. Many people come away entirely unscathed (though I often wonder just HOW many), and most people handle the tx, and manage through the side effects and after-effects so that in a year or two they are feeling pretty good. I am AMAZED at how unwilling the medical community seems to be in conducting rigorous studies of the exact and specific experiences of people who have completed tx!!! Funny how little research money and how little appetite there is for these sorts of studies, by either the Pharmaceutical companies, or the medical research community....well I guess if they are waiting for the pharma's to fund those studies...we are going to all have a long, long wait...until some place below freezes over...isn't that the saying? I just can't help being a bit sarcastic at such a glaringly obvious area of disinterest by the medical community....
Anyway, better luck to you on the next go-round. With the new cocktail combos you should be able to slay this dragon, and do it in less time than your previous tx attempt. I am glad you did not suffer after effects, and maybe that is a very good predictor for you. Best of luck!
DoubleDose
DD, I have to ask this. I believe you double dosed the interferon correct? Don't know for how long or if you also increased your riba dosage but do you think by doing more interferon than prescribed it could have contributed to the post treatment side effects you are experiencing? I know some people still suffer post tx side effects and treat by the book for only a 24 wk duration but I would be interested in what your thoughts are about your treatment protocol and if you think it had any bearing on the ailments you suffer with now.
I did 72 weeks of interferon by the book (even threw in a few extra shots for good measure) and came out unscathed but unfortunately still infected. No memory issues what-so-ever and normal aches and pains for my age. I've read many more threads by those who have SVR'd and seem to suffer more post tx ailments than those who haven't achieved SVR. I find that odd for some reason.
Trinity
I did 72 weeks of interferon by the book (even threw in a few extra shots for good measure) and came out unscathed but unfortunately still infected. No memory issues what-so-ever and normal aches and pains for my age. I've read many more threads by those who have SVR'd and seem to suffer more post tx ailments than those who haven't achieved SVR. I find that odd for some reason.
Trinity
I don't dispute that there are impacts from HCV and/or treatment for some people. The subtle point that I attmept to make often is that people age 56 (pick a number) who have had HCV and are SVR can't ascribe all their aches, pains and ills to either. At age 56 a person still has 56 years of mileage on 'dem bones'. In addition, many HCV babyboomers are those who contribute to a large slice of our population who suffer from from stuff that also brings us maladies like diabetes, cholesterol moutains, heart disease, smoking and drinking effects and so on. I think that for some people HCV is a convienient foil when the bill for a life of living that which we we enjoy comes due.
I hear you....but there's a BIG difference between normal aging, and neuropathy, severe cognitive impairment, reactive arthritis, tx induced depression, auto-immune skin diseases, sudden development of metabolic and heart issues, etc., etc. Lets compare non-HCV infected 'normals' at the same age ranges, to HCV Post-treatment individuals to see if the cross sections for both groups complain of the same ailments and diseases, and at the same rates? Wanna make a little bet??????
DoubleDose
DoubleDose
It almost sound like that if it wasn't due to HCV and subsequent successful treatment that people would have perfect health and live forever.
The answer to the question is as follows: TX is a powerful treatment that can in some, or even many cases, produce a wide range of side effects, and post-treatment side effects that may last for days, weeks, months, years, or in some cases it appears permanently. The first goal is to get rid of the virus, especially in those whom it has advanced beyond early stages, or seems to be causing significant physical or cognitive problems. The "catch-22" for some people who treat, and especially those who have to treat with higher doses, and for longer periods of time, is that sometimes the after-effects can be as problematic or more troublesome than the perceived effects that one had from the HCV. The difference is that without treatment, allowing the HCV to continue on its course, you will likely end up in seriously dangerous shape...maybe sooner for some...and maybe later for others. Some few lucky ones may live a long life with HCV before it kills them, but not many from what the statistics show.
So, the short answer is: Yes, the treatment can and for a percentage of us, does cause issues that might be termed "brain related", or as you refer to it, brain damage....along with other issues ranging from a pseudo-arthritis, rashes, sun-sensitivity, easy fatigue, depression, blood pressure and metabolic issues, cognitive deficits, lack of energy and motivation, balance problems, neurological problems, etc., etc. Its a roll of the dice, but I think that in most cases it is a NECESSARY roll of the dice. I believe that it is essential that we eradicate the HCV, first and foremost, and then do whatever it takes to recover as much normal function as possible. For some of us it will be easy, and they will snap right back with few problems...and for others there may be a period of time ranging the full spectrum, months, or years...in reversing the after effects of the drugs used in tx. I have had many after effects in my 7 plus years since my second long tx, and subsequent SVR.....and its taken almost that many years to start to return to strength and health. The upside is that the virus is gone, my earlier Stage III fibrosis is now testing as high Stage I fibrosis, my tx induced high blood pressure is coming down to normal with exercise and diet, and I have gotten off BP medications by addressing the hard work of a very aggressive, healthy lifeplan, with tons of daily exercise...even though it really felt difficult and painful for a long time, and seemed counter-intuitive to the way I was feeling.
The other 'good thing' is that with newer TX drug combinations, we may see a much lower dosage, and duration of interferon used in TX down the road, and maybe someday eliminating it entirely from the drug cocktails. That should dramatically cut down on the treatment induced after-effects.
So, yes in some cases, the so called "brain damage" appears to be a treatment induced outcome, and it varies in its symptoms and duration for many of us after tx. I don't think there are ANY reliable numbers out there on how many suffer post-treatment effects, or what percentage overall grapple with these problems....so don't expect to find a graph or empirical study....since I don't think any pharma related sponsors out there really want to quantify that information. Its just a possible reality for some, and must be dealt with head-on. What would someone with Cancer say if they told them that their treatments would have side-effects, or after-effects....would they say "NO, don't treat me, I'll just let it run its course"????....The answer is self-evident.
DoubleDose
So, the short answer is: Yes, the treatment can and for a percentage of us, does cause issues that might be termed "brain related", or as you refer to it, brain damage....along with other issues ranging from a pseudo-arthritis, rashes, sun-sensitivity, easy fatigue, depression, blood pressure and metabolic issues, cognitive deficits, lack of energy and motivation, balance problems, neurological problems, etc., etc. Its a roll of the dice, but I think that in most cases it is a NECESSARY roll of the dice. I believe that it is essential that we eradicate the HCV, first and foremost, and then do whatever it takes to recover as much normal function as possible. For some of us it will be easy, and they will snap right back with few problems...and for others there may be a period of time ranging the full spectrum, months, or years...in reversing the after effects of the drugs used in tx. I have had many after effects in my 7 plus years since my second long tx, and subsequent SVR.....and its taken almost that many years to start to return to strength and health. The upside is that the virus is gone, my earlier Stage III fibrosis is now testing as high Stage I fibrosis, my tx induced high blood pressure is coming down to normal with exercise and diet, and I have gotten off BP medications by addressing the hard work of a very aggressive, healthy lifeplan, with tons of daily exercise...even though it really felt difficult and painful for a long time, and seemed counter-intuitive to the way I was feeling.
The other 'good thing' is that with newer TX drug combinations, we may see a much lower dosage, and duration of interferon used in TX down the road, and maybe someday eliminating it entirely from the drug cocktails. That should dramatically cut down on the treatment induced after-effects.
So, yes in some cases, the so called "brain damage" appears to be a treatment induced outcome, and it varies in its symptoms and duration for many of us after tx. I don't think there are ANY reliable numbers out there on how many suffer post-treatment effects, or what percentage overall grapple with these problems....so don't expect to find a graph or empirical study....since I don't think any pharma related sponsors out there really want to quantify that information. Its just a possible reality for some, and must be dealt with head-on. What would someone with Cancer say if they told them that their treatments would have side-effects, or after-effects....would they say "NO, don't treat me, I'll just let it run its course"????....The answer is self-evident.
DoubleDose
I'd worry more about the hep C destroying the brain than the treatment. There is plenty of info on that. You have to be careful reading those health websites. You may die of a misprint. (mark twain adlib)
As usual Mike im LMAO. You are on my friends list, So your posts continue to make me crack up. Are you still dabbling in that wacky weed boy.lol...Boy mike sometimes I wonder if you really have hep c? And other times I think you are just posting to give humor to me, and irritate some? But maybe although you are a young man you have already had the disease too long. I did read recient links about hep dammaging the brain. And you posted you got it using razors of your step mummy dearest.... eighter way Mike as I PM you eariler. If u have hep C. The day may come when you need serious awnsers to problems you are experiencing. So dont cry Wolf. This forum already read me my biopsy,lab And ultra sound, when the good doctor was to busy to make our apt..I got better awnsers here (language) quicker. I have looked @ other forums. And most of them look as though they are dead sights. or sites to complain (dont get me wrong I like to complain, Im female). Hey but thanks for entertaining me. Oh yea. The other sights I viewed had no real information....Im sure I havnt seen em all though....I think you should wait for new meds, as I told you. The reason I am tx now is because Im getting older yet actually healthy (I dont take any meds as older folks often do YET) and insurance reasons. I dont think I will have health ins by the time they come out.By the way shot 2 day19? no side effects yet. not even a headache. oh I did notice 2 red circles from shots. I had a sore on my gum, but I think it is from previous bad teeth and gums...So so far my friend tx is not bad. And I think it will be easier on you, as you are young.
"At this point, I don't think you have anything to lose."
That's what my doc told me when I asked about cognitive disruption. We'll I told him to pees in a pod. So he put it where's the gravenstein's shiney, and took the chrome off a trailer hitch. But at least I didn't buy the farmer and the horse he road in on, and tomorrow will be another bad apple.
I think I came through it like a BB on a four-lane highway. You will two.
That's what my doc told me when I asked about cognitive disruption. We'll I told him to pees in a pod. So he put it where's the gravenstein's shiney, and took the chrome off a trailer hitch. But at least I didn't buy the farmer and the horse he road in on, and tomorrow will be another bad apple.
I think I came through it like a BB on a four-lane highway. You will two.
At this point, I don't think you have anything to lose. You may actually benefit from the overall tx experience. You may not gain any more brain power but it may give you some common sense. You won't know until you give it a try.
Yes, I believe that it can cause brain damage, to some degree. I treated six years ago. I used to be a multi-tasker and now can hardly finish a project before starting another (ADD), I have short term memory loss, I used to be an avid reader and since treatment have not been able to finish a book. My occupation before treatment was a secretary/assistant, now I would be embarrassed to even apply for such a position knowing that my performance would be horrible. I also have neuropathy which is related to the treatment and have awful joint pain and thyroid problems. In my case, my doctors agree that it is related to treatment. During treatment, I was the sickest patient my doctors had seen from the meds, but I WON the battle with the HCV Dragon. This is not the case with everyone, but it can happen.
If you read the fine print on the pamphlet that is enclosed in the medication, it does say that these side effects can occur, some worse. Once again, this was 6 years ago so I don't know what is on the current pamphlet.
The bottom line is everyone has to make the choice that is best for them.............treat or not treat, that is the question. If I had to do it all over again, I would not treat, but that is just me.
Best of luck to all those who are currently treating or thinking of it. My heart goes out to each and everyone of you.
If you read the fine print on the pamphlet that is enclosed in the medication, it does say that these side effects can occur, some worse. Once again, this was 6 years ago so I don't know what is on the current pamphlet.
The bottom line is everyone has to make the choice that is best for them.............treat or not treat, that is the question. If I had to do it all over again, I would not treat, but that is just me.
Best of luck to all those who are currently treating or thinking of it. My heart goes out to each and everyone of you.
Mike, I'd like to know what you read. When you are asking about something you read, can you include a link to that please? That will help to know what your source information is.
As to your question, many people on treatment experience what is commonly called "brain fog" - that's alot different than brain "damage". It means your cognitive senses are impaired for the time being - leads to forgetfulness for the most part and a difficulty in thinking clearly at times and being focused. That's when you start making lists to help you remember and stay focused and various other strategies.
As to your question, many people on treatment experience what is commonly called "brain fog" - that's alot different than brain "damage". It means your cognitive senses are impaired for the time being - leads to forgetfulness for the most part and a difficulty in thinking clearly at times and being focused. That's when you start making lists to help you remember and stay focused and various other strategies.
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