Hi - I'm pretty new to this board and didn't treat with INF alpha. I hope someone who has treated with that drug sees this and can give you a better understanding of what you're feeling right now, but I think it can cause depression so I'm wondering if your sad hopeless feelings and brain fog could be a lingering drug reaction? Other people who treated with the same drug could tell you how long the effects lasted, hopefully the effects will pass soon.
These treatment drugs are powerful. Even with Sovaldi/Olysio which I treated with, with only fatigue as a side effect, now that I'm 7 weeks past treatment I still have some muscle cramps, some memory problems, and generally feel like poop alot of days! But, for me, those lingering effects are slowly getting better and I hope soon will be gone.
And please, if you are truly feeling suicidal, you need to call your doctor asap.
The main thing is that you've reached SVR!!! The continuing damage to your liver has stopped!!!!!
Thanks. Well I plan to kill myself, I lost my abilities and that's all. I beat a virus but now I can only think in fragments. That's a life without any perspective. I had funny years but now I should put an end to it it's like I lost my mind. This tx is senseless
Please, please believe me when I say these feelings will pass. It can take a little while but you WILL get over this. In the meantime you should contact your doctor and tell them you feel this way.
Please call the suicide hotline in your area immediately. Or call 911 immediately. They will help you.
I am sorry you are feeling so bad, but you have to realize that Interferon stays in the system for at least 6 months. It takes time to get the medication out of your system. These feelings and limitations will lessen as time passes. It takes months to get back some of the neurological and cognitive functions that we lose when we treat with these drugs.
In addition, you sound very depressed and that is most probably a result of the Interferon. Interferon causes depression. When one is depressed, one is not thinking right. You need help, NOW. Please call 911 or the suicide hotline now in order to get some help to get you through this.
I treated for 48 weeks with Interferon. It caused several cognitive problems. It took months to get back to normal. I am now 2 years post end of treatment and I am doing very well. All of the neurological and cognitive problems have now disappeared with the exception that I have a little difficulty concentrating and a little trouble with memory concerning specific things. However, no one is aware of this except me. I mean, it is not noticeable, so really not bad at all. I feel great and am doing fine.
You will also feel good. Just give it some time. You will be able to do the things you did before treatment.
Again, call the suicide hotline, your psychiatrist, or 911 now. They will help you.
Thanks guys I cannot thank you enough .. the others just laugth at my behaviour and think I'm an idiot and that I just "play" it. Like an actor... They should take a good shot peg shot and then they would maybe understand....I can't explain why I feel so crappy, it's like the IFN blasted away so many words so many memories, my short term memory is like nuclear blasted, I fried these little critters hahaha
No one here would ever laugh at you. I am my husband's caregiver and have been in this fight for four years. I know it is easy for me to say but you have already accomplished what many are praying for everyday- you are Hep C free! Don't underestimate how wonderful that is for your future. Yes, you do and will have a future. Use that same determination you had to rid yourself of this virus to give yourself time to heal from the treatment.
You have received some wonderful advice from those who have been there. You can get through this but you will need help. See your doctor and tell him/her what's going on.
We care about you! Please ask for the help you need. Keep coming back. We will be here for you.
Believe me when I say we all experienced it and know exactly what you are talking about. Others do not understand and have no clue. That is why this forum is so helpful ..... we can talk to others who know what we are talking about and who understand and empathize.
We had a thread here some time ago about some of the stuff we did on Tx ..... the cognitive problems. We can laugh now, but it was not funny then. I have lost words too but they are coming back slowly. I know the words but cannot think of them. On treatment I could not remember my own phone number. I could not do math to save my soul, not even add. I could not remember if I took my pills 5 minutes after I took them, maybe even 1 minute after I took them. I went in to pick up my cat from the vet, paid the bill, and walked out without the cat. I could not remember what the knobs in the car were for. I made coffee without grinding the coffee beans and sometimes without any beans at all. LOL. I spaced out driving and kept going past my exits, several times per trip. Some people quit driving because they kept getting lost and could not find their way home. One guy tried to open his garage door with his TV remote control and backed through the closed door of the garage. Another was trying to connect to the internet with his TV remote.
So give it time. Come back here as often as you like. The people here are supportive.
I would still suggest that you get some help for the depression. It will take time to get back to normal and some professional help may help you through the transition.
Best of luck.
First off, what you are experiencing WILL IMPROVE. Please do know give into these thoughts of hurting yourself. Talk to a medical professional or a counselor or if it gets too bad, PLEASE call 911. I've done 11 treatments and all of them used interferon, only one of them didn't use the Ribavirin, but all the rest of those treatments included the Ribavirin as well. I believe that if you had both the Interferon and the Ribavirin along with the Sovaldi.., or even the Interferon w/Sovaldi, that it is completely understandable that it affects the chemistry in your brain. Depression is caused by biochemical changes in your brain. Just wishing for it to be gone, is usually not going to work. What does help to get your brain 'reset' is either medications for depression or time for the drugs to completely wean out of your system. In the meantime, both myself and others on these message boards have found that things like getting some form of exercise really, really helps. The reason why is it helps to regulate the serotonin and dopamine in your your brain chemistry. Any exercise will help you with the depression. What that looks like for one person may be different for another. One person may want to swim, someone else may like to go on a hike or garden or go on a bike ride. It's really hard to make that step when you're feeling depressed, I know because I've been very depressed in the past. But, the exercise has made a huge difference in my depression. Other things that may help is doing some types of detoxing such as drinking alot of drinks like kale and fresh fruit smoothies, getting a really good massage (because massages help to work the meds out of your tissues). The doctors don't really help that much with advice on the end of treatment issues. At least that's been my experience. I've had such issues with my brain after doing repeated interferon and Ribavirin treatments that I was no longer able to work. But, most people don't have those issues because seriously most people haven't been on 11 interferon/Riba type of treatments. I even didn't pass the mental test on the Soc. Security Admin.'s OWN doctor that they sent me too. But, I have to tell you that I have been on these message boards for a LONG, LONG time and practically everybody that I've known that has worked and did treatment, were able to return to their jobs and their brain function returned. I just want you to know that you're not alone and this will improve. I am encouraged to here that you play the guitar because music is very healing. Some people enjoy taking an art class, just to get their mind refocused. Is there something you can think of that you might be interested in doing to get your focus shifted from harming yourself? Once again, please contact a professional if these thoughts continue. Susan400
Please do not have those thoughts, you are a SURVIVOR don't ever forget that. I have been where you are and I can tell you honestly these feelings will subside!! The drugs you were on were some heavy duty drugs, they had to be to fight the virus, which is no easy task. You now have to give your body time to rid itself of all the drugs. Be patient with yourself cuz your body has been thru so much. You will start to feel a bit better each month as the drugs start to dissipate. Hang in there and the community is always here to help you.
Keep the Faith
Congratulations on attaining SVR!!
I completed treatment with Sovaldi, Ribavarin and Interferon 14 weeks ago and completely understand what you are going through. everyone here understands how difficult treatment and post treatment can be and it's no joke, but it does get better - sometimes slowly, but it does! Please do seek help as everyone here suggests. some things we just cannot deal with on our own. I have definitely found that talking about it helps some, and exercise can be a tremendous help as well - as much or as little as you are able to do. drink lots of water and try to eat a healthy diet to assist your body in clearing the residue from these powerful drugs. Life without Hep C is a wonderful gift that you have been given - don't give up on it! as bad as it is, this will pass.
Hang in there!
Oh I will have to agree that these drugs do mess with your mind. Pooh said it well. It's almost been 2 years since the end of treatment. I think I'm finally
returning to the person I was before treatment. All this is hard on your mental state and...........only people who have experienced will know what your feeling. Hang in there. Your young and will bounce back. Give yourself at least 6 months and come here and let know how your feeling. Heck we been there did that. Your not alone.
Best to you
I too, did the RIBA, Sovaldi/ Interferon and also two other 6 mon treatments that included interferon. I had the same problems with my memory as what others have told you here! It does get better with time!
Lots of us know how disconcerting the thinking issues can be. You are not alone on this or anything else we can support you with your recovery from treatment. We are all here to support you and each other!
Like the others said, please contact 911 or the National Suicide Prevention hotline at 1-800-273-8255. You can chat online with some too. The website is www.suicidepreventionlifeline.org. They have a "click to chat" button. I urge you to do this ASAP if you feel you are at risk to yourself. Call your doctor as soon as you can. He/she should know about your struggle.
We stand with you and each other! You are so fortunate to have the virus gone at a young age. Your life is destined for good things. I believe it!
Thanks for having the courage to come to this site and for being honest and open about how you are feeling. That is a very scary thing for most people to show their vulnerable side, but it goes a long way in the healing process.
What most people don't realize is how potent these drugs are. Our Drs have no clue what someone experiences when certain meds are dispensed. In med school they are told to eliminate our illnesses and make us feel better but at what emotional cost to the patient. No wonder many of us are angry as our post treatment issues were somehow curiously not mentioned.
Fortunately what you are feeling will stop. We do know (thru our own research as patients) that this sense of confusion and mental brain fog is only temporary. It takes 6 months for these "Chemo" drugs to leave our system.
Trust me, you are not doomed to live your remaining youth and beyond in a state of confusion.
The key is how do we all cope until our mind and bodies reset back to our normal rhythm. You have only a few short months before this occurs, but be patient. It's hard to see gradual improvement but it is slowly happening.
Great advice above.
Susan is right on with exercise. Know its the LAST thing you want to do right now, but you've gotta force yourself to start moving. This will alter your brain chemistry just enough that you will feel amazing afterwards. Do something fun like bowling, hiking, swimming, ride a bike, whatever rocks your world.
Honestly it does work.
Eat healthy as food is fuel and you will need that to induce energy and a sense of well being. While your going thru this detox of these meds, try to avoid sugar as best you can.
Talking and sharing really helps to get out of a funk, so come on this site and let us know how you are doing. I'm almost 5 months out from treatment with Sovaldi and Ribavirin and am really feeling great. Was where you are a few months ago, and thought I was losing my mind! Being able to talk with other people going thru the same thing helped so much. Want you to know that we really do care, and it makes us feel better to be able to help you as we know exactly what you are going thru.
BTW. I used to play guitar, as my boyfriend was in a rock band and taught me how to play. Did it for several years and even straight (without Hep meds) I still never played very well!
Admire you for that one.
These emotional feelings will end. I know since it happened to me and many others on this site. A few months ago, I was asking myself the same questions but to embarrassed to speak out. In retrospect wish that I had as my journey would have been alot easier.
Please know you are not alone, and I want you to feel safe coming here and sharing. No one judges anyone as we do understand.
Should you feel you need professional help then that may be a wise choice.
If thoughts of suicide enter your mind then you need to tell someone and seek counseling. You have an amazing life in front of you, and the journey has just begun.
Take care and hope to hear from you soon.
thank you all so much for replying to my thread. you all seem to understand where i stand at the moment. i feel like someone has wiped out my entire memory, only fragments remaining. so, i pray to god and to your experience that the time puts together the fragments in my brain and makes a picture like before treatment. because this is unbearable. i lost all the words!! i mean, what the hell! this is not funny! my doctor didn*t tell me about that! Otherwise i had waited for the new drugs without IFN! im stage 0!
i cant believe it that i cannot form a normal sentence in real life, it is crazy
l: it is not crazy is is very normal for many on the med protocol you were on- even on other of the meds without the INF!!
Now, a note -- even if you can't yet wrap your mind around what we are ALL telling you -- to give this a few months - the length of time varies from one person to another--- then please KNOW THIS: we only use about 10% of our brains. As many stroke patients have found out in their rehab process - YOU CAN FORM NEW PATTERNS in that other 90 % which will get you back to what was Normal for you!!
I am not trying to say that you will need to, only to say that you (anyone) can if they had to.
Rather than focus on what you caannot do- and build horrible anxiety and depression, PLEASE FOCUS ON WHAT YOU CAN DO! Look on this period as a new adventure - to find ways of getting done the things you NEED to do. Tell family/friends that you are having a problem with the residuals of your meds so they will understand when you can't find words (my husband and friends are all quick to help me when they can fill in the word I am searching for).
As others have told you all the things to do to help you through this current problem, no need for me to repeat it, but do exercise - just a simple short walk will help. Since you are a guitar afficianado, listen to Good guitarists, or all good music for that matter (they tell pregnant women to listen to classical music as it helps the forming baby to develop it's brain patterns - can't hurt, might help! Pamper yourself, doing something that you really enjoy that does not require you to form words aloud, but very simple crossword puzzles helped me learn to reform words - didn't get many at first and quit when it began to get frustrating - picked it up later. Slowly, I could see an improvement. Again, if you do something like that quit before it gets annoying, so you don't depress yourself more.
Drink WATER, 1 ounce for each pound of weight, up to 1/2 your body weight, ear liver friendly foods fresh fruits, veggies, 'good' fats (nuts, yogurt, cottage cheese, cream cheese, avocado, etc), if you eat meat, use chicken, turkey, pork (the other white meat) and fish, especially cold water fish.
Remember there are many if us here to talk with you, too. As Livelife said, we have received so much help and support from this site, it is a blessing to us to be able to pass that on to help you - and others.
Please know we all care, and are here. Get the immediate help you need from those who know how to give it, and come to us for talk, support, information and questions!!
Who knows what wonderous things are in you to give to someone else, to the community, to the world? Please hang on, and keep on keeping on, one step at a time!
SVR!! What wonderful words, may we ALL achieve them soom, and CONGRATULATIONS on yours! Pat
Hey, I've been thinking a lot about you and wanted to let you know how much support his group has been for me. So happy that you reached out
It sounds like you really enjoy music. Try just listening for awhile. Your body has been through hell. Give it a chance to heal
And keep coming back here with questions. Even those who have achieved SVR are still cheering everyone on and the most random, seemingly odd issues about side effects and the time it takes these nasty (but wonderful!) drugs to leave one's body, get answered here
Congrats on beating the virus!
All the best
Hey there! Everyone has given you such good advice, I just wanted to add that you are not alone. I felt the same way after finishing tx. I know how it feels. Hang in there, it does improve.
This will soon be a blip in your rear view mirror.
When I felt down I was encouraged to walk, even 10 minutes a day makes a difference. Watch comedies. They say laughter is the best medicine.
Not that I know who "they" is but it does work. I laughed til I cried.
Take Care, keep drinking water, boring but so helpful :)
I'm really concerned that the interferon damaged me neurologically. I mean I don't feel anything at all, I can't find words when I speak, im impotent since 2 months, I lost my happy personality and I don't think that this will come back, sorry
My skin looks like I aged 10 years.... And you really das that all this Revolver? It it really all "heals" tust will be ja second birthday...
But on the other hand, I cannot thank you enough for the kind and hopeful words. This feels positive
Hiya just want to back what everybody else as already said please, please try to talk to somebody that you can trust and try and remember every single one of us on this site is here for you please use us at times it helps just typing your feelings out and there will always be somebody to help you through these hard& sad times. Thinking of you and wishing you all the best. Love Jules xx
This breaks my heart to read how you are feeling and your lack of ability to pull out of this. Don't "look behind you"....look forward. Not everyday is going to be good. Some days you feel better and the next not so much.
This is what I experienced and it devastated me. A few years ago when I went through treatment, not many were talking about this. What did happen is people would come here just crazed out by treatment and told they were crazy. I not only thought it was heartless....it was anything but supportive. Your not! Its the treatment drugs leaving your body.
I knew something was wrong during and after treatment but just couldn't put my finger on it. What really tested my strength was when I looked at my
partner of over 20 years, who I love dearly and could even focus on why
I did. I had no feelings at all. I realized that I was feeling a form of dementia. My thought was if I have to live like this....I won't. I know this is trying but you can get through this. What is so hard is its going to take some time. Look I feel for you by writing to you. So it does get better.
Hey... I felt like this aged me 10 years too. I couldn't believe what my skin looked like. Give it time.... you only aged a little bit to get rid of Hep C.
.......and it does take time to get past this skin thing too.
You are not alone with the way you feel. People here are admitting that it
does really effect your mind. Heavy drugs do effect your mind. I have been through cancer treatment (chemotherapy) which many may not know
has many of the same mental and physical side effect. Anything you do
to radicate something so evasive like cancer and hepatitis C is going to have possible consequences. Do they tell you about them when before
you treat. Well I can tell you in both cases I wasn't told about the effects
of these harsh drugs. Would you have not treated and not obtained the opportunity to possibly live a longer life. Free from numerous related illness including death from not doing treatment at all.
I know this is a very difficult time in your life. It can cause life changing
event. But remember this. Everyday is one step closer to getting your
mind and old life back. Except that it will take a while and maybe longer
than you want......but it will come back to you.
In October it will be 2 years since finishing treatment. I do feel like I got
my life back now. But there was many days I wondered if that ever would
be. You will get back your groove.
Don't worry so much and be happy. As the months go by you will see that
things are better. Just except its not going to happen quickly. Your going
to get there and we are here for you.
Smile ; )