Hi everybody, I hope that you all can help/understand exactly what I am going through right now on this tx. I am on Peg-interferon 2b/Ribavirin and Victrelis. I feel very strange, for lack of a better word. I have zero liver damage right now and I am hoping that I am not putting myself and my family members through absolute hell all for nothing. I have become depressed and irritable. I hope that this does not cause me to get divorced. I have NO sex drive and I also have zero desire to even cook meals for myself never mind my family. I feel so alone and my hope is that someone here can help me through this right now. Thanks in advance.
Your symptoms are very common side effects of Hepatitis C treatment. Interferon and Ribavirin cause numerous side effects and the Victrelis adds even more side effects.
The symptoms that you mentioned ... depression, irritability, lack of motivation, lack of sex drive ... are all side effects from the medications. Other common side effects include fatigue, no energy, inability to concentrate, brain fog, flu like symptoms, aches, pains, headaches, dry mouth, nausea, gastrointestinal problems, rash, itching, gum problems, chills, dizziness, weakness, and many other side effects.
If you are feeling depressed please contact your doctor and let your doctor know you are feeling depressed. Interferon can cause severe depression in some people and mild depression in others. Your doctor should be able to refer to a psychiatrist for an urgent evaluation to determine if you need antidepressants and, if you need them, which AD would be best for you to take. Do not ignore this depression as Interferon can cause people to become very depressed, even to the point of being suicidal, so it is important to get an evaluation ASAP and treatment if indicated. The psychiatrist can also evaluate your irritability, which can also be a symptom of depression (and a side effect of the Hep C treatment drugs).
As far as your other symptoms, there is not much you can do about the sex drive while you are on the drugs. It is a side effect and should resolves by itself after you finish treatment. Or, it may resolve during treatment. Some of these side effects come and go.
As far as fatigue and no motivation, that is from the drugs. You just have to slow down and try to do the best you can while treating with these drugs. You will feel better after finishing the drugs.
The fatigue and no motivation can be worsened by anemia so be sure to keep a very close eye on your hemoglobin and other blood counts. You should have complete blood counts at least every 2 weeks and more often if your blood counts are low.
It sounds like your family has no idea what you are going through and how debilitating this treatment is. Can you sit down and talk frankly with your family and let them know how debilitating this treatment is, how sick you are, and how bad you feel. Is there anyone who understands who can sit with you while you try to help your family understand that you are sick. Anyone who can give you some support and back you up. Your family needs to understand that treatment is very difficult and that you need to focus on treatment so that you will be cured. They should be helping you attain a cure. Perhaps you could let them read the responses you receive in this thread.
If they still do not understand or will not support you in this treatment, then please know that we do understand and we will try to help you get through treatment as much as we can. You are 6 weeks into treatment. That is a very good start. We will support you and help you. Just post any time you need help or have questions or just need to vent.
(Just for the record, several of us did take antidepressants during treatment with very good effect.)
PEGASYS alone or in combination with COPEGUS causes a broad variety of serious adverse reactions (see BOX WARNING and WARNINGS). In all studies, one or more serious adverse reactions occurred in 10% of patients receiving PEGASYS alone or in combination with COPEGUS.
The most common life-threatening or fatal events induced or aggravated by PEGASYS and COPEGUS were depression, suicide, relapse of drug abuse/overdose, and bacterial infections; each occurred at a frequency of <1%.
Nearly all patients in clinical trials experienced one or more adverse events. The most commonly reported adverse reactions were psychiatric reactions, including depression, irritability, anxiety, and flu-like symptoms such as fatigue, pyrexia, myalgia, headache, and rigors.
Hi There. What your feeling is very common in triple treatment. It can be very hard on your relationship but its really important that you husband understand that this depression, no sex drive, mood swings etc. is the results
of the treatment medication. Your zero desire to do the things you love is
surprising and caused by the treatment drugs. I found this very hard to deal with also. Are you taking an anti depressant/anxiety medication? Do you
have medication to help you sleep? Just about everyone takes these medications to get through treatment. YOUR not alone. It a good thing that
your treating your Hepatitis C. You can do this. Other people will be giving
you additional support.... Once Again - your not alone.
Best to You
Depression develops in 20-35% of patients treated with interferon and ribavirin. This can be one of the major morbidities associated with treatment, and practitioner screening for the development of suicidal or other destructive ideation is essential when patients develop symptoms of depression.
Another very common side effect, irritability is documented in clinical trials in 30% or so of patients, but may be present to a lesser degree in most patients.
A list of side effects from the same site:
Psychiatric Side Effects
Other Side Effects
Dyspnea (Shortness of Breath)
Here is the link to that site with a list of side effects and some tips for managing them:
I just read your profile (I should have done that before I responded) and I see you are on Remeron. Hopefully the effects of the drug will kick in soon and you will feel less depressed and less irritable.
Thank you so much, it truly helps me to not feel so alone. No my family has no clue about what I am going through right now, I did explain it to them, but I have a feeling that they think I am superwoman...which I did my best to be that is before I started the meds. I just saw my doc on Friday and she did prescribe me an antidepressant called Remerol. One of the side effects is drowsiness which I definitely needed especially since I have such terrible interrupted sleep lately. Also you hit the nail right on the head with all of the other side effects of the meds...I have them ALL. I was having suicidal thoughts and I am taking the medicine so I can live a great life, not to die...decided that it was time for the antidepressants. Thanks for your time I truly appreciate it!!! :)
Thank you, I am already feeling better just being on this forum and knowing that I am not alone...my doc prescribed me Remerol an antidepressant and sleep aid. I hope that this helps me. It got so bad that I contemplated suicide, although I would never ever be able to go through with that, I am taking the medicine to live, not die. Doc told me that the Remerol should start to work very quickly, it certainly has helped me to get more than 3hrs of sleep a night-I was miserable because of the medicine and the lack of sleep also. Thanks for your time and I hope you are doing well! :) Cherie
Welcome to the forum. I don't think anybody was capable of understanding how I felt on treatment except other people who had gone through it. So I stayed glued to this forum. I wasn't interested in cooking, cleaning, socializing, talking on the phone, doing my projects, or anything else while on treatment. Holding a conversation took more effort and energy than I wanted to put forth. I was couch bound for about 20 weeks out of 24. I viewed it as a 6 month medical time out that would allow me to live a better life later. Stick around and we'll help you get through. Reid
Here is something else that may give you some encouragement. We have a member on the forum, Frijole, who is keeping statistics on some of us ..... Genotype, fibrosis stage, if we treated before or not, starting VL, viral loads throughout treatment, side effects, and treatment outcome or result. You can go to her profile, click on the white pages in her photo section (5 of them) and see the results of treatment for many of us. The end results are on the far right side. You can quickly see how many cures there are by noting the term SVR (sustained viral response) on the far right hand side of the pages. Many of us started treatment in 2011 so we have treated and have attained SVR (are cured). More SVRs keep coming in every month. I thnk looking at the pages will give you hope and encouragement that treatment can cure you and you will be able to go on an live a healthy Hep C free life. Here is a link to Frijole's profile page and the statistics:
Greetings and welcome :)
Hey you sound like you are doing really well at this stage.
I agree with every thing Pooh said and could not have said it better. I just wanted to offer my support and let you know you are not alone :)
It is difficult for people to understand just how lousy these drugs can make us feel since for the most part we basically look the same. I for one got tired of pointing out how compromised I am when I task that I performed before was too much while treating. The thing is you have to make it clear you are not up to the same level of performance with people. It is humbling and frustrating but now is the time to delegate and for people to come together and support you through getting rid of this disease.
I was not very affectionate while treating and my husband understood. He read about the meds and I treated before so he was considerate and assumed as much of the load as possible. I felt incredible guilt by not being able to do things I normally do. Even things I enjoy.
Interferon is a heavy duty drug. It can cause all kinds of things but in my case I can definitely say for me there was fatigue, depression, body aches, hypothyroidism and hair loss (all these meds probably cause that).
I went on an AD (antidepressant) prior to treatment so that helped.
As treatment progresses keep an eye on your labs. I would think you would still be having them fairly often. A side effect that can sneak up on us is called hemolytic anemia. The value on your labs is called Hgb. Un less you are feeling OK normally some type of intervention take place when Hgb is around or less than 10 g/dL.
Other than that I think it helped me to check in with the forum frequently while I was treating. Ha I was looking at this chart that shows my Internet usage and it was close to 70% in the last few months of treatment and now is down to 25 - 30% (In my defense that includes streaming)
I don't have much more to offer than more sympathy and empathy; my heart goes out to you in reading your post. I've often said that tx is as much a mental battle as a physical one, but hopefully knowing that you aren't experiencing anything necessarily out of the ordinary, you won't be so concerned. It is one day at a time and it can be really, really hard. I lived alone and I thought it would have made things so much easier if I had help around especially when I became anemic, but on the other hand, I thought it would have been so hard on those around me and I was almost glad others didn't have to see what rough shape I was in.
As said, just be careful to have your blood work monitored, and if things get really difficult mentally, get some professional help if you can. As hard as it is on us, I supposed it can be hard on those around us.
Take care, stay strong and take one day at a time...sometimes one hour at a time. Reach out on this site, you have a lot of support here. :)
I too, was on the victrellis. I clearly remember feeling weird when I first added it to the other meds. Soon you will adjust. A small amount of exercise each day also helps the mental part of this treatment.
You may look fine to your husband, but it may be helpful to show him on paper, your blood counts. As the hemoglobin in your blood decreases, it causes the fatigue.
Keep your eye on the prize. You deserve a bright future and these meds may well, be your ticket.
hi and welcome to the forum just to back up what the others have said use this site often and i promise you you will not be alone and we will give you as much help info that we can, i know through experience that without this site i would have been lost to understand what hubby was going through. Glad you are on anti- depressents while treating they will really help you. Just remember it is for a short time in your life and then you can get on enjoying a long and healthy life.
Hi Cherielynn, what a pretty name.
I think everyone above has given you excellent advice. I also started treating in Sep 2011 and this forum was a life line to me. While my husband was just great it is very isolating. Others think you look ok so you must be ok.
I did not want to do anything at all. It was a very hard tx. Recently another member said that he forced himself to walk and that seemed to help.
Other members did the same, I did not think I could do it so became a real home body. I know you will receive a lot of support on here.
Everyone is so kind, it is like a huge family. While I did get to SVR 6 months ago, I, like many others still come back to help. You will find people in all stages of treatment and recovery on here. I come back to help others as I was helped and I think that is why others are here as well.
We all helped each other continue the tx
Hang in there.
Cherie, welcome to the forum. You are among friends here and lots of good advice. Since many have already gone through what you are experiencing, it helps to guide you down the path which can be overwhelming at times.
The first months of trt were a major period of adjustment for me. There were times when I didn't understand my own behavior with some major mood swings. These meds are do alter your mood in addition to making you feel like crap, so there's a lot going on for you to adjust to. My wife was not able to recognize this since I looked normal. I expected her to understand how I felt, but realized that wasn't possible. Although I was in no mood to do it, I had to explain how I felt until she understood what was going on inside. I wanted to escape deep inside the "man cave" and be left alone, but that wasn't the way to deal with this, since my trt lasted for 48 wks. Fortunately, she was able to recognize and understand these moods, and things actually began to taper off for me as I adjusted to the new norm.
As mentioned by swimmer, try to do some for of exercise if you feel up to it. It helped me tremendously. It can be as simple as a short walk, but getting up off the couch and getting some fresh air really does help. But only if you have the energy to do it. Once this trt is over you will feel normal again, so keep your eye on the finish line and take this day by day. If we can do it, you can too. Best of luck to you.
Wow! You sound EXACTLY the way I feel right now. I don't even want to do ANYTHING AT ALL! Not talking on the phone, being out in public gives me panic attacks & cooking/cleaning forget it. My husband is angry with me because he works 10-12 hr days & doesn't understand why almost 4-5 days out of the week that I just CANNOT make him dinner or do the dishes. It ***** because he makes me feel like s**t & worthless. It makes me very sad. I wish he could understand a little bit. I know he's tired after a full day of work & I'm so lucky to not have to work right now, cause I just would not be able to hold a job. He says he can see how I feel terrible but could I plz just do this or that...no he truly doesn't get it, but he's HCV+ too & 1 day if my tx works he wants to do it too, maybe then he'll get it. Never mind the insomnia & depression, I have gone days w/out a shower cause I feel like I just don't care to, or it's too much work to even wash up. That's pretty bad. Sorry for the lengthy post but I am in desperate need of understanding. On Friday I & started Remeron & beside it being an antidepressant it's also a sleep aid and since I have gotten a few nights of decent sleep I feel a little bit better already...thank God! Thanks for "listening" to my rant! I truly appreciate the support & friendship from someone that KNOWS!!! :)
just remember to get up and at least walk around outside. it helps to get some exercise or the sx will feel worse. and also drink LOTS of water! that's very important. i forced myself to work out 3x/weekly and i was glad i did. my sx were minimal thru out the 48 weeks. best wishes. belle
Thanks for your support & understanding. Also all of the info, I am already feeling much less like a deserted island, all alone & riddled with guilt by the things I used to do that I just cannot or do not want to do anymore. I even HATE talking to my mom or dad on the phone, and they are in CT (I am in NC) so my mom really worries about me & calls more often than usual and it takes everything I have to pick up the phone when it rings and she's on the other end. My mom is my best friend & I have zero desire to talk to her, I get aggravated & agitated by her & this makes me feel lousy. I love her & I know that she's only trying to help but....well you said it all...everything you posted about is exactly what I feel like 90% of the time. Thanks for the understanding & friendship it is so appreciated! Cherie
Thanks my friend! We all deserve a great life, no matter our past indiscretions! I feel very fortunate to have found this forum & couldn't be happier to chat with other that know what I am going through right now, I feel so much love & care from everyone on here, so thank you so much for your kind words, understanding & friendship. I truly needed this!!! Thanks so so much!!!!! Cherie :)
Thanks for the advice, yes I have also become a homebody as well. I just wish I could force myself to exercise, but I have no desire to be seen in public honestly. I know I would not work out at home, no motivation :( Hopefully the AD will start to help me. Since it also makes people sleepy it has already helped because before I just could never sleep & weeks of that will make a person miserable w/out being on this tx. I want to thank you for your friendship & understanding~I truly appreciate everyone here. This forum has already been a life saver!!!! Thank you for that! :)
Hello & if I didn't already do it I wanted to say hi & thanks for the friendship here, I truly need all the support that I can get & I finally found it here. I am overwhelmed (in a good way) with the outpouring of advice, support and general love I feel from everyone here~I appreciate it all so much & am already feeling so much less alone...I related myself to an island because that was how alone I have been feeling, but now I have this lifeline and I couldn't be more grateful! Thanks so much!!!! Cherie :)
Thank you, my husband knows it's the meds but still does NOT get it at all. He seems to think that if I just "remind myself that this is all for a great thing" that I should feel better, he doesn't understand that my brain chemistry is so off that I can cry at the drop of a hat. I know it's the meds but it doesn't change my chemicals when I just think "oh this is all for my health & this is good" I need to have him read all of the comments and info on here, maybe just maybe then he might kind of get it? Fingers crossed! Thanks for your friendship & understanding. Much appreciated!!! Cherie
I just want to echo the others in saying that no one has any idea what these side effects are like and how horrible we feel on this treatment (unless they have done treatment themselves). Some of the side effects come and go although many of them seem to take up residence for the duration. They can vary in intensity from day to day, although some of them are pretty intense for months.
I did 48 weeks. I live alone and, while that was a problem sometimes because I wished I had someone to help me, even cook me some food because I was too tired to get a pan out of the cupboard let along cook a meal, in some ways it was easier living alone. I did not have to try to keep up appearances for anyone and I did not have to do anything that I was too tired to do. And I was too tired to do just about everything. I went to get my blood drawn and went to my doctor appointments. That is all I planned and pretty much all I did except to get groceries on occasion and go to my concerts (I had season tickets) on Sundays about once a month. (I planned my injections around those concerts, doing the injections every Monday so that my best day would be Sunday.) I got nothing done other than as mentioned above. I made an effort to do ONE thing a day ..... dishes or laundry or buy groceries or doctor appt. or clean littler box. Note I said do ONE of them each day. I was too tired and weak to do more. I let the dishes pile up because I often did not even have energy to fix a meal or food let alone do the dishes afterwards. I lived on a lot of easy things to fix and eat .... Greek Gods yogurt, cheeses, liver pate, bread/toast, bratwurst, crackers, eggnog. Cooking a meal would have been out of the question. I did not vacuum for months and I have cats. It was a bit furry in the house but no one knew it because I would not let anyone come over to visit. I never answered the door and I rarely answered the phone. It was too tiring to talk or attempt to appear presentable. Besides, I had a bad rash and wore a thin short cotton night gown for 4 months, so I was not presentable anyway, LOL. I had a stack of mail 2 feet high because I was too tired and too unmotivated to open it.
Plus, if I did try to do anything, after just a few minutes of activity, I would break out in a cold sweat, get weak and woozy, and feel like I would faint.
Here is a link to a post I made when I attained SVR. It lists the side effects I had (although I forgot a couple of them when I listed them). However, the list gives you a pretty good idea of the various side effects I had and many others had also. I did not get the severe anemia, neutropenia or platelet drops that many get so I was lucky in that respect. Having anemia or neutropenia adds a whole other array of symptoms.
Anyway, here is the link to my list. Maybe your husband should read that thread too.
Pooh and all the rest have given you the best advice. Maybe you could show your husband the site that Pooh has indicated above. Just to give him an idea. I know that when I treated, I thought that I could will myself to do things
It was so hard that there were days I just lay in bed only to get up to take meds, eat and run to the bathroom.
I probably should switch that to I lived in the bathroom only to get up to eat and sleep.
It was very difficult. I was not prepared for how bad it would be. At one point I realized I should not be driving so my husband took me to the doctor and went to the store.
It will get better, just try to take it one day at a time, or one hour at a time.
I had a lot of anxiety halfway through treatment.
You don't know how strong you are until you go through something like this. The doctor telling you it will feel like the flu is an understatement to me. It feels like the worst flu you can ever imagine.
It is similar to people telling you labor is like the worst cramps you have ever had.
I am sure you know this but force the water as much as you can. The inf really dehydrates you and so you need to drink more water than you ever thought you could as it adds to the aches, pains, thinking, etc
There is so much love and support here keep hopeful.I am one of the ones that did not do treatment and now the only option for me is a liver transplant.Initially I was afraid of the treatment,I had 2 very small children and a cross-cultural marrieage that does not do "woman's work",PERIOD!So I put it off.Then I did not progress for many years and when I did the Dr. I had misinformed me greatly!
.MySweet Lord is one of comfort,and answered prayers,and sacrifice.I will pray for you and I am sure there are many others!
Do you have a friend ?It was suggested to me a support group(I wish there was one here,any type would do! It is always so amazing what people can accomplish together,maybe there is someone in tx that you could buddy up with and share the travails together.
"Prayers to You on the Wind". (hugs too!)
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