Post tx life

[Diane12855]

I started on this forum a year ago last February. Started Tx a year ago last month. I was on here every day till around Sept. when I started really wanting to be alone, physically and mentally. Then I guess I was on 5 - 10 times a month from then on. I read a few posts during that time about post tx issues, but about all of them were attached to old threads, so I figured that post tx issues weren't all that common.

I was communicating with someone who finished tx close to when I started and was surprised when she sent me an email around July saying that if she had known what these drugs were going to do to her, she would have not been so quick to jump into tx. I asked what she was talking about, and never got a reply.

I'm rambling, I know. Sorry about that. I'll try to get to the point. Anyhow... I was so looking forward to finishing tx. Somehow I got the idea that things would start getting much better about a month later, and when the nausea went away right after stopping the Riba, I was sure that my normal self was just around the corner. But when I started having post tx issues I posted a couple questions and was pretty surprised at how many people were currently experiencing much the same thing.

I feel that if I had known that it was so common, it wouldn't have taken me by surprise nearly as much, so I thought it would be kind to let the people that are doing tx now, or thinking about it should know what to expect. I'm not nearly as bad off as I was during tx, but I'm not myself at all. One person put it this way in a reply to me.... we are one person before we start tx, another one during tx, and a third and different person afterwards. I have found this to be very true. Some called it "wounded animal syndrome". There are also strange new pains... totally different than the ones during tx. And a wonderful leg twitching thing that sometimes goes away with Xanax and sometimes isn't even touched by the stuff. The doctors don't have a clue about why we feel this way, so it doesn't do any good to talk to them about it so we REALLY need each other on this forum even after finishing tx.

I think that for the sake of the ones following us down this road we should share how things are for us so that they won't have to be so disappointed when they don't feel themselves right away. Also the ones that do get better right away will know how lucky they are.

What do you think?
Diane

[Kathy73]

Well I'm approximately 1 1/2 years post tx. I'm not really sure if I'm still feeling the effects of 48 weeks of tx or thyroid problems. At my three month post tx checkup it was discovered that my thyroid was hyperactive and I had Graves Disease. My legs had been so week during tx and I had gotten to the point where I couldn't get up from a bending position. Even one knee bent was impossible for me to get up from except by pulling up on somone or something. Going up stairs I had to literally drag myself by the bannister. Then it was the legs giving out and falling down. At one point I fell down in front of my office building and couldn't get myself up. Luckily two gentlemen pulled me up from a prone position. One wouldn't  have been able to do it because I had absolutely no thigh muscle. Very embarassing. Now I'm on thyroid meds, but I never got to feel the difference of feeling better getting off SOC and on the thyroid drugs and which one is doing it. It was funny because the endrocrinologist told me how much better I'd feel after the meds and all I had to compare it against was feeling better being off or on SOC. So what do I blame my current various aches, pains and weakness on?

[hopefulgirl38]

Thanks for your post, I cant say my partner has had the same difficulties with post treatment, he reports he felt back to himself in a couple --- we know how lucky he is - I hope you start to feel better soon

[babs824]

    diane; thanks for your honesty, i think we owe it to new comers to share our truth. there is no one truth. i expect my geno 2 and shorter tx probably caused less post tx symptoms. i do  share the leg twitch and memory is not at all sharp and never was. i finished in march and hair is still falling out but was never obvious to others. my energy has always been very high and i feel almost back to normal but i need to recover with lots of sleep after a difficult weekend or even a long day. i still have skin issues and dry and rashy in areas but not face. my patience is still a bit short but i could never brag about its length.
so far i have no regrets at all and would call my sx minimal. i am hopeful that yours will begin to subside soon and that we will both be svr. take care, babs

[meakea]

Diane....I'm 21 months post treatment.  Even that this point post treatment I feel myself still improving.  I have a deja vu feelings from time to time of my old self peeking through even more than the day before.  So, hang in there.  Yes, I had some bad ups and downs post treatment but it does get better.

I know of several people whose doctors prescribed rehab for them post treatment and their insurance paid for it.  They basically went through a physical therapy rehabilitation program with a trainer to help them get back some of their physical strength, etc.  It did them a world of good.  If you don't have the luxury of something like this, maybe try signing up with a personal trainer at a gym.  I do believe it could be very helpful for some of your post treatment issues.

I'm sorry things are so hard for you at this time and I hope you get relief soon.

[Gee704]

James and I finished at the same time so I am 3 1/2 months post as well. I do feel much better than while on treatment. However, I am not back to my normal. Blood tests are at the low end of normal but NOT my normal. I still have shortness of breath and I too crash after a long day.

Definitely have concerns over being able to work my sometime required 12 hour days on my feet the entire time. i will find out just how well I do on Thursday as I have to fly from MI to NJ for an interview. I leave Detroit at 10:30 am and arrive back in Detroit at 10:30 pm.

I too have heard it is 6 months until all meds are out of your system and all red blood cells will be replenished. I am not expecting any miracles until one year post. If it happens by 6 months I will be ecstatic!

We will get there ; )

[James10500]

As far as good as new two months post I am as I said 3 1/2 done and I still crash hard some days.  But I felt really good last week like I had energy like never before, I swear I felt like I was a sudafed or something it was awesome, but since Saturday feeling kind of blahhhh.

Hang in there we'll get through this too !!!

[James10500]

It takes six months for all the Riba to get out of your system.  Every red blood cell in your body is saturated with the stuff, and that's how long it takes them all to die off and be replaced by new ones.  Also they tell you to wait six months post tx to become pregnant or to impregnate.  I also read this somewhere.  I'll look for it and post it if I find it.

[Diane12855]

How did you know that it would take 6 months? Was it in the package insert and I didn't see it? Did your doctor tell you that? Mine actually said it would be about 2 months and "I'd be as good as new"... I guess I am technically "good as new". My blood counts are almost back to normal. I guess that is why doctors don't understand... because there aren't tests that show the after effects. I'm sure one day I'll be OK.

I just don't want others being caught off guard like I was.

Diane

[James10500]

Minimum recovery time is six months.  Do I feel the "same" nope, but I'm 3 1/2 months done with tx. So all the meds aren't evrn out of my body yet so theoretically I'm still literally on meds.

I have a friend who after 3 1/2 years of SVR just got a silver metal at the World Karate Championships !  It can happen to you too, give it time, that's what I'm telling myself anyway.  

[Susan_1a_CC]

I totally agree with you.

[Diane12855]

I agree. It will be great when the day comes that there is a fast and less toxic tx. I'm not trying to say that people that need to do tx shouldn't. If their damage is worse than 2-2 they shouldn't wait for something that is easier on them because the alternate choice of liver transplant or worse is much worse.

It's kind of like when I was a little girl. I remember waiting in line to get my shots before going to school. My mom was honest with me and told me that yes, it was going to hurt, but it would keep me from getting a really bad sickness in the future. A lot of the kids ahead of me screamed when they got their shots because their moms had been telling them that it wouldn't hurt, so they were shocked. I wasn't shocked, so I didn't suffer nearly as much as they seemed to because I was prepared for it.

Diane

[Susan_1a_CC]

I do wish that you were feeling back to your original self.  I've seen discussions on here of the various longer term sides and I know that a lot of people are suffering.  

I can only speak of my own experience with a different interferon - lambda.  If this lambda proves to lead to SVR then I would heartily suggest that anyone who can wait for it to be approved does so.  I know a few people on it and no one has had the neutropenia associated w/ alpha interferon, or the flu-like symptoms, or loss of appetite, or anemia.  The worst for me has been some hyper-motility, and some occasional nausea.  I expect that the first 6 month results on the first round of study patients should be due soon and maybe we'll hear from Co-Study on whether or not he SVR'd.  I'll be posting my own results as they come in.

Again, I really look forward to the day when there is a fast and less toxic approach for everyone.