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Avatar universal

Ribavirin

Ok just blame it on being distracted! I usally take my ribavirin in the morning (at work) and at dinner (at home) I didn't realize it but I was one pill short (I take 6 a day) this morning at work.
Make it up at dinner or not or not is the quesiton.

Dare I ask the next question? Has anyone ever felt better while on treatment then before treatment. I know from what I read here a crazy quesiton.  But I would swear that I felt better on Saturday (finishing week 7 of tx) then I have in a long time. Now I know the amazing weather and having a chance to be out side working on my garden, very very slowly, might have had something to do with it.

anyway shot 8 tonight.
26 Responses
116701 tn?1210259164
Take the good when it comes your way. I've never felt as good as I did before treatment but I usually felt good all the time then. Too much energy then to not enough now.

Pop another pill in tonight it has killed me yet. I took six Friday morning (double dosed) and just skipped my nightly dose that night. If you are really concerned though call your doctor. Dale
Avatar universal
that is very interesting! i am about to start tx. for years i have been suffering from chronic fatigue and it has been getting worse at the same time my liver inflamation has been getting worse and my viral count has been going up. now my doctor tells me there is a corelation between these three things. my fatigue has gotten so bad that i only work part time now. i am wondering if tx will make me feel worse or if the viral count goes down will i improve. what did you feel like befor tx? it sure is good to here positive things about tx
Avatar universal
Don't want to over state it and like I said it may have been that spring got the best of me. But I felt pretty good Saturday and Sunday able to get everything on my list done and for the first time in a long time not overwhelmed by the world.

As to what I have felt like before treatment. Not great not terrible probably less energy then I would have liked but who knows what tha was from could have been hep c could have been diabites could have been working 24/7 getting divorced, find a a new gal,   buying a house oh and did I say working 24/7.

The main point, I think, of my post is tx does not always have to be hard. There can be some high points and like I have said before my side effects, to date, have been less then what I expected and that alone has made me joyous, I think I have stopped waiting for the other shoe to drop.
Avatar universal
As long as you have a good serum level of Riba in your blood it won't be a big deal if you missed one, just try not to do it again and certainly NOT with the Interferon LOL.  Also don't double dose on it, I did once by accident and yuck.

I wish I felt better on tx.....I can't wait for it to be over and be cured and remember what it felt like to think! :)
Avatar universal
I don't think I was ever to good at thinking anyway.
105924 tn?1217607949
So i am about to take shot #3 and i have had NO sides what so ever. I feel totally normal and have the same amount of energy as before i started treatment and i have not missed any work yet at all. We will see how long it last.... I am being so positive though everyday that i wake up and i am continuing to do my activities and stay with my everyday pattern. Seems to be working great for me. BUT, i also felt wonderful before i started treatment, so that could also play a loarge role in how i am feeling now.
Avatar universal
LOL sounds like you understand me perfectly well then....thinking has NEVER been my strong suit either!  :)
132578 tn?1189755837
It's great that tx is going so well , so far. Any week , or day for that matter , of easy going sx is one less that you have to worry about. However , this combo treatment is a very fickle treatment and can show it's ugly side at any time. It may continue to go well for you , but there is really no way to predict whats going to happen , bad or good.
Hang in there.
Avatar universal
Hopefully, your decision to treat wasn't based solely on your fatigue, but more on other factors such as the amount of liver damage you have.

While everyone reacts differently, don't count on feeling better during treatment as the vast majority of people feel worse to one degree or another.

As to post treatment, again do not count on feeling better than before you started treating. It's possible, but many never regain their pre-tx health and often report more fatigue, and other symptons such as memory loss, joint pains, and thyroid problems to name a few.  

What successful treatment will do however, is first kill the virus and second, it will greatly reduce the chance that your liver damage will increase. In fact, it may even reduce any liver damage you have.

Sorry if I somewhat dampened your expectations, but I think it important that people have realistic expectations as to what treatment can and cannot do *before* they treat.

-- Jim

Avatar universal
Maybe your case is different, but in general most people do not feel better during treatment and that includes the many people that have complained of chronic fatigue prior to treatment, which happens to be a significant number, since chronic fatigue and Hep C often go together.

Also, based on anecdotal reports of those here and on other sites, more people seem to report feeling worse after treatment than before they started treating.

Someone -- I think TnHepGuy -- put it very well. They said not to expect anything to be different after treatment other than the virus will be gone. I'll just add that while some may feel better than before tx, it appears an equal if not larger number of people will feel worse with sides such as more fatigue, diminished mental facualties, joint and skin problems, thyroid disorders, etc.

BTW I also had more less fatigue intially on treatment and I attribute that to the stimulant effect of the ribavirin. Of course, later my anemia and other complications cancelled that out in spades.

Again -- and some others will disagree -- treat primarily to stop or regress liver damage. As to the other stuff, you may feel better post tx, you may not.

-- Jim
Avatar universal
Jim,

Have there been any long range studies to gage post treatment side effects? I understand how it can take months for these drugs to leave our systems and there for not feeling any better for months after one has finshed tx but what have you read about 6 months later, a year later and so on.

I think this line of question began and when I asked if anyone has ever felt better while on treatment. I put it out there for two reasons one was Saturday just happened to be one of my better days in a long while, including pre-treatment. Like I said maybe it was the weather, maybe it was having a few days off from work, maybe it was my daughter deciding what college she is going to. Not important  it just got me thinking, not my strong suit as I mentioned in a prior post, the other reason I put it out there is I find that my body looks forward to it's next shot odd I know. That could easly be from my past experince with needles who the hell knows.
Avatar universal
Time,

Very few studies if any on the long term side effects of treatment. This isn't surprising, since most studies are sponsored by drug companies and after investing literally billions in these drugs for FDA approval, I don't suppose much motivation in for them in double-checking their safety. Recent articles scrutinizing the FDA seem to support this. Post tx sides reported here recently include
fatigue, muscle/joint pain, thyroid problems, lupus-like skin conditions and other autoimmune issues. My NP also warned me that treatment often causes kidney problems as well.

Kalio,

I understand your experience is different, but after reading hundreds of posts here and in other discussion groups, almost everyone feels worse during treatment than before. And again, many if not most, also list pre-treatment fatigue as a sympton. Chronic fatigue/depression and Hep C have been linked for a long time. I addressed post treatment above in the post to Timedog.

Personally, for me it's too early to say one way or another, but while I feel 1000% better than during treatment, I don't think I can say I feel better than pre-treatment. I feel like I've aged about ten years both physically and mentally. Hopefully this will be reversible but in any event I feel given the amount of liver damage I had, there really was no choice.

-- Jim
Avatar universal
I wont say I have felt better,...........different maybe.
I had lost 30 pounds prior to tx just b/c I was so sick all the time (terrible stomach problems) but ya know,....that is the one thing that no longer bothers me. Go figure!!!!
lilmoma
131817 tn?1209529311
I started my tx last Wed.  Until Saturday, I had no sx.  My bone marrow and cancer tests were negitive, yeah!  So now I can just concentrate on tx.  

Saturday,  my dad died after battling cancer.  He went so fast, I couldn't believe it.  He was out to dinner Tuesday night!  Of course I am extremely sad, he was an amazing, accomplished  and well know muralist/artist, whom I love with all my heart.  I am glad he went so peacefully and  am not as sad now.

  Sat. nite I couldn't sleep at all!  At 7 am after the riba,  I fell asleep for two hours,  that's it.  Last night I only slept 4 hours.  Do you think this is the Riba?

Also my depression and fatigue seem to have diminished.  I was having a hard time doing anything from fatigue.  Yesterday, I was outside (finally no rain!)  gardening.  I have several acres and boy am I sore today from the exercise.  I sure need it though.  I am happy about it,  so the depression is better too.  

Planning a memorial at my house this week for Dad, so I am working on getting all that together.  I am surprised at my energy and hope it lasts (and I can sleep).  I was having the same question yesterday about feeling better on tx, although less than a week.  

Thanks,
Linda

105924 tn?1217607949
Linda, first i want to tell you that my prayers are with you during this time of loss. So sad to hear that your father recently lost his battle with cancer.

You and i are just about the same week. I get my shots on wednesday also and this wed will be my third shot. I haven't had any problems yet, though i am sure some are just around the corner. I am not sure what it was that kept you up because i haven't had any sides yet. BUT, i will be keeping tabs so that i am aware. I have been taken anxiety meds on the night i get my shot and they pretty much make me sleep like a baby, so no sleeping problems yet. Keep me posted with how it is going. GOOD LUCK!
Avatar universal
Really sorry to read about your dad passing away. Never an easy thing to go through. I think, if you don't mind me saying, you have to give yourself a break here and know not only are you going through with a tough treatment but also a very difficult emotional time either one of these could be effecting your sleep.

Just hang in there and this too will pass.
Avatar universal
sfbay - my sympathy to you on the passing of your father.  I am glad your treatment is going well so far.

timedog - in my case I was very sick before I started treatment.  I had so many problems from the disease.  In the beginning of treatment I was sick from a bad liver and the effects of the virus AND sick from the combo.  Soon though, I noticed that I felt better and could do a number of things I couldnt do before.  This coincided with the virus clearing.  Yea the tx was definitely tough  but I was suddenly aware that my body was getting better.  These two things actually balanced out and helped me to stay on the tx.
Avatar universal
Please accept my condolences regarding your father.  I lost my dad almost 21 years ago and I still miss him terribly--so I will keep you in my thoughts.
I start tx later this month and it is always encouraging to hear from some of you that the sides haven't hit you yet--and maybe they never will.  Just goes to show you how individualized all of this is--and none of us will know how we respond until we begin.
Avatar universal
SF im so sorry to hear about your Dad,you seem to be dealing with it well,but even a little stress or a little depression or just an emotional  week can trigger insomnia and anxiety on tx, i just went through a ruff 2 weeks and ended up with insomnia for a week thats with a sleep aid and ativan....saturday i started sleeping again after a week of only 2 or 3 hours sleep and i have had this pattern when going through something emotional it seems like there is always something when you have 5 kids...on tx.

Time dog if its only 1 just make it up if its all 3 divide it up i would be careful taking 6 at a time if your not used to it could make you feel a little rushy...
Avatar universal
I read your post earlier, you have been through so much.
I commend you in how well you seem to be handling it.
Im so sorry for the loss of your father, no time is a good time to deal with such issues, Im glad you were able to find some peace in it.
I dont hardly know what to say,...
lilmoma
131817 tn?1209529311
My dad was just a slip of what he used to be.  What an inspiration to watch him deal with dying and no complaints. He always wanted to know about me.  It is sad, but I am peaceful and happy he is a better place.  I will miss him terribly! I have to write his obituary for the SF Chronicle I remember all the great stuff he has done in his life.  So I have been laughing and crying (sometimes at the same time).  

Yes,  the insomnia could be be tx or my dad.  I will ask for something to use if it doesn't go away.  I had insomnia before I stopped drinking a few months ago, and it went away when I quit! It has been wonderful to sleep all night and go to sleep early.

I sure hope I don't get sx's, but am not holding my breath. I have been using the gold bond and am in the sun gardening. No problems with it so far.

Thanks for all your thoughts and prayers.  I really apprieciate all  the posts and this board!

Linda
Avatar universal
Thank God! the bone marrow and cancer was neg.  Now you just have to worry about doing tx and that's a pc. of cake compared to the other two.

I am so sorry about your Dad, it's never easy to lose someone you love.  He sounds like he was a great man.  I will keep you and your family in my prayers.

BEAGLE
Avatar universal
So sorry about your Dad. There's another angel in heaven.

You have an amazing sprit, he must have been very proud of you. Keep up the yard work and positive thoughts, they'll both help you on this journey.

Mattie
Avatar universal
I am so sorry about your dad, I kinda know what it is like.  I still have my dad, but lost my mom to cancer 8 years ago.  You and your family are in my prayers.  Exercise and fresh air are the best things we can do for ourselves, especially at times of great stress.  I know he wsa proud of you.
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