Feeling worse off treatment

[susan400]

Dear Friends,

I've been off of treatment now for 2 weeks.  I'm off the Procrit and Neupogen as well.  I've cut back the Ultram to just 1/2 a pill (25mg) daily.  Before, on treatment I was on 50mg twice a day.  Anyhow, I've been feeling totally bad since stopping treatment.  I can't sleep hardly at all, which makes it worse because I've never been able to take a nap during the day either.  I've already had to take a trip to the doc-in-a-box clinic for an otitis media/otitis external ear infection that when I did manage to get a couple of hours of sleep-woke me up with my ear throbbing. I'm having a lot of the muscle aches types of problems and gastric problems as well.  Does anybody else have a problem when they stop treatment, or is it just my wacked out body?  This happened to me last time I stopped a treatment as well.  It's very frustrating.  You so desparately want to feel well.  I saw this girl in the grocery store yesterday that I've known since high school.  She looked so young & healthy & vivacious & about 10 years younger than me & she's my same age. Used to people would always comment on how young I looked for my age, not anymore.  I've aged about 10 years in the past 3.  I wish I had money for a makeover.  I want to be lively & healthy & happy & active, like the girl inside me I used to be. Is that ever going to come back?  I hope I'm not depressing anyone, that's not my intention.  I just need to share with someone who will listen & emphathize.  I hope everybody else is doing well & has a great 4th of July. God's Blessings on all of you & our country. Susan

[susan400]

Oops,

I just scrolled down and noticed that someone else posted on post treatment sides. Sorry to open up another thread. Well, I do see that I'm not alone in this after effect and that's good.

Susan

[tulsatime]

hi and good morning I couldn't sleep either had a bad doctor visit yesterday. But will post that issue in another post. I just wanted to tell you I know how you feel. It does sometimes feel that this will never end. When I got off treatment last time. I had a couple of months of feeling like the virus was back. Night sweat, liver pain.(which it was). It did take a while to feel good again. I really dread going back on treatment. Cause right now I feel so good. Its been almost a year since stopping last time. it does get better.
I can't take naps either, know what ya mean there. It makes me so mad sometimes.
I think it sounds to me like you need to take some time to pamper yourself. I know it doesn't answer all our problems but it does make us feel like a woman again. I  get my hair  done, buy some new cloths, paint my nail, things like that gives me a glimps of the old me. The one that was so fun to be around and not this sick and tired person some time I feel like.
You know you are my hero. when I read your post. I have the courage to keep going even though sometime I just want to cry. Keep your head up and take it one day at a time.
... When trouble is knocking...
Just say Jesus can you get the door... God bless

[psychdoc]

I am sorry you are feeling so bad. My expectation when I got off tx was that I would magically feel great. I was diagnosed because I had spent several years feeling very tired and the doc finally got around to the Hep C test. I am 2 1/2 years post tx and have come to accept that I will never feel like I did before I started having symptoms. I have fibromyalgia, insomnia, hypertension, high cholesteral, gastritis, dry eyes and skin, re-occurring depression, and some loss of cognitive abilities. Right after tx I had gallstone pancreatitis and nearly died. I have a supportive doc who is working with me to try to correct all of these issues and I think that slowly we are getting them under control. I usually work from 7am to 11am and then go home to nap for 2-3 hours. After that I go back and work from 3pm-7pm. It is not ideal but I have made adjustments. I used to coach women's softball and cannot do that anymore due to problems being in the sun for hours and lack of stamina but I am getting ready to take up horseback riding again. Since tx I have traveled internationally as well as volunteered with the Red Cross during Katrina. So I have to make some trade-offs but my life definitely still has meaning and it is getting better even if at a snails pace. That's what life is about. I don't think any of us get everything we want. I am thankful that I am still here and do have choices. By the way I was 1a,1b, treated for 48 weeks and am SVR.
Best of luck to you,
Barb

[eastvillager]

Hello,

I'm 3 weeks shy of 6 months, post treatment. I thought after I was cured it would be a quick road to recovery. It wasn't. I was still feling sick for months after finishing treatment. I thought I was permantly disabled from the disease and the drugs. I must say that isn't the case. I feel great today! Be patient. It takes a long time for the drugs to wear off and get your strength back. Exercise, eat healthy and slowly you will recover. I'm sure some people are sick after treatment, but people do get sick from other things and as we know physiologically it is a difficult disease to deal with and bounce back from. My treatment was rough and I got very sick. Almost every side effect imaginable. But now I feel better then I can ever remember. I even went back to work today in a very tough job as a newspaper photographer. Keep up your spirit. You have nothing but good things head of you.

Steven

[fishdoc]

Please you guys are such an inspiration to those of us that can't even see the tunnel yet, be kind to yourselves!! Remember, patience is a virtue, and some of you are SSSOOOO patient with others (that I want to just rip their little selfabsorbed heads off of), that you forget to be patient with yourselves....

my son (the PA) told me: you are hitting yourself with massive doses of cytokines, natural products that the body uses to fight bad viral infections like the flu. If your body has been fighting the flu for a week, think about how you feel when your over it? Six weeks to recover, if your lucky, then add another 47 weeks of the flu, and you have interferon therapy. As I told Friole in an earlier thread, we want so desperately for normalcy, all during tx, we just want some semblance of our life to be normal. I crack jokes, and walk out and feed the birds, because that is what I can do, and nothing else. I go to town maybe twice a month, if I have to. Month 4, hubby did all my shopping, I never left the house except to work. I am ssooo sorry that your feeling anxious and depressed, but people need you to be spiritually OK, and your bodies WILL catch up, but its been a hard year for them too. Yall have a job to do still, and thats helping the newbies along, so please: your special, each and every one of you has run the good race, and you deserve to be as kind to yourself as you are to others!

[friole]

Did you ever notice how friends quit smoking and then tell you how they have had more sore throats and cold and cough more than ever before?  I always rack it up to the body ridding itself of poisons.  As these posions leech from the body, you feel sicker.  Perhaps it is the same with tx.  Just think of how many alien invaders (and not the virus) are still in your body, Susan.  It will be better and I know you will look younger again.

Fishdoc - your insights amaze me. That PA son of yours is a smart cookie.  Many times I have heard of folks being sick for weeks or months after the flu.  What you said makes perfect sense.  Now go out and feed your chickens - I am going in the kitchen to feed my face.
frijole

[Alady1620]

I'm sorry you're still feeling bad.  I know what you mean about feeling like you look older.  Hang in there.  Things will get better.  Maybe you should go get yourself a new haircut and color, fresh nails, a new outfit, and some new makeup.  It will help you feel better about yourself.  Massages work nicely too.  :0)

[OnAPrettyPoison]

Susan, you are my hero - you think about all that you have taken, all the rounds of treatment, it is no wonder that your body doesn't feel good!  Do you have a day spa near you?  Go get a massage and a facial - do something really girly!  You are in my thoughts - I can't imagine doing this 8 times.

Fishdoc, your son is one smart cookie like his momma!  About 15 years ago, I got the flu (on the Friday before 4th of July weekend)doctor sent me home to take Tylenol, it turned to pneumonia, and I was on antibiotics for several weeks.  I felt so bad I didn't know when the flu stopped and the pneumonia started.  When I finally got over it, my blood pressure stayed at 80/60 for 6 months.  I felt like zombie girl!  

Friole, incidentally, it was a few months after I quit smoking.  I never had so many respiratory problems before or since....

[suzys11]

Dear Susan,

I just want you to know that you are not alone.  I finished 48 weeks of tx in April, 2004.

I, too, expected some kind of miracle from sustaining SVR...but that hasn't happened.  I feel worse than I did before treatment.

I now have fibromyalgia, Raynaud's Disease, and peripheral neuropathy.  I'm always in pain, can't sleep, can't remember things, am foggy.....

I contacted Hoffman LaRoche AND the FDA and suggested they put long-term side effects on the warning labels of their drugs.  Hasn't happenend yet, LOL.

So, I'm getting denied by Social Security...hired an attorney...and am waiting to get my insurance back to do something constructive about the fibromyalgia.

I would not have done treatment if I had known how bad I would feel afterwards.

Hugs, Suzy

[susan400]

Thanks Suzy.  My sister asked me, "now that you're off of treatment will you be able to still keep your Soc. Sec. payments?"  I'm like, 'I don't know why not, I still have HCV, liver damage and did not get remission and still have other issues with post treatment and depression'.  I actually don't think that anybody's sneaking around from Soc. Sec. checking on my disability.  I have the SSDI, not the SSI, there's a difference in the two, but it took me 3 times of being turned down and then, a lawyer to get it.  I had to put down EVERYTHING else that was wrong with me besides the Hep C because the hep alone I would not get it since I haven't reached cirrhosis yet.  I'm level 3 as of my last Fibrospect and biopsy.

Susan