Post Treatment Issues

I finished tx 9/3 and just had my 8 week post labs and all is looking pretty good, still UND, liver enzymes the lowest ever (teens and twenties), and other blood values normalized.

The purpose of this post is to say to others that my first week post tx was horrible; very depressed, fatigued, headaches, neuropathy issues started, left leg swelling, vision issues, bone pain and other things I had not had during tx.  It really concerned me; however, most started to subside by week 2 and were gone by wk 4, but the neuropathy seemed to intensify and spread (feet, legs, flank, hands, face, etc.) and was a real concern by my team when it did not subside, but got worse by week 4. I was tested for a possible blood clot, etc.

Point being: I am happy to report that by week 8 everything of a serious concern is gone....no neuorpathy, headaches or vision problems.  Some of the "post tx" posts on here had me concerned that I was going to be one of those who would forever have issues from tx, but it doesn't look that way and I really wonder how often tx effects are lifelong.  So to others finishing up, or experiencing side effects, rest assured they will most likely go away, and try not to get too negative when and if you research "post tx issue" posts, especially peripheral neuorpathy.

I still have fatigue, but I assume that's due to being anemic for six months and not doing much but sitting around. I'm slowly working on that with more exercise to which I was very accustomed prior to tx. Compared to tx, I feel great!!  The hair shedding is starting to subside, but that was the least of my concerns, however I do look forward to getting that back to normal as well.  

I know I have a way to go; these meds affect us for a long time, but I expect to keep feeling better and better; it takes awhile. So to others I say, keep hanging in there!

[Dannyboi7]

It's looking good for you,Congrats!

[Reidmusic]

Congratulations to you and thank you for posting your experience post-treatment. It really helps me to stay positive and to believe that one day all of this will have been so worth it. When I read about people having major problems after treatment, it makes me feel "What's the point?" My heart goes out to those people but it's really nice to hear about the positive side too to give us something to hope for.

[Idyllic]

This is really great news. I can imagine how unreal it must have been being finished with treatment and feeling worse! And then discovering that there could be other new complications to top it off. This had to be a long hard eight weeks for you. I am glad you are out of the woods as they say.

Like Reid says, it gives us something to hope for.
Take care :)

[HectorSF]

Good for you!
You are coming back from a long grueling journey that has beat you up a bit. But it looks like you may the champ. We don't need to win every round, but if we knock out the virus for long enough it ain't getting back up.

Excellent job. Be proud of all you accomplished beside a little wear and tear around the edges you are coming back stronger than ever! You set a high bar and inspiration for the rest of us to keep fighting.

—Float like a butterfly, sting like a bee.

Hector

[FaithforHealing]

I appreciate all of the congrats, but as you know, 8 weeks is not long enough to know for sure...but I mainly wanted to let people know that just when you think you can't take any more or you think you'll never feel well again...you do!

If I don't achieve SVR at 6 months I will get a shot at 7977/riba, so we shall see on that part of this "journey".

Hector...I'm checking your page/journal, I hope you keep up on it so we can follow your progress!!  If anyone has had to "hang tough" (maybe more mentally than even physically) it's been you! Wishing you continued success!

[orphanedhawk]

Like you I had some post tx side effects that had me scared. By three months post, they had all gone. I do think it took a good 6 months to entirely get my energy back.

So very very glad to hear you're doing well.

[FaithforHealing]

Thanks OH...you were definitely one who helped me right from the very beginning, all through the tx and then after when things got a little scarey.
Wow, what an experience. Sometimes it's hard to believe it ever happened and it's only been 8 weeks. I've always said that denial has been my worst and best friend at times. This year I've needed a lot of denial to get through things. :)

[rainypass]

Thanks for this post Faith it is encouraging and helpful to hear about the recovery from treatment. Yes there is light at the end of the tunnel!  

Congratulations on being UND so far! My study Dr’s said if one was going to relapse that it happens soon after the end of TX usually they know by week 4 post. Most people do not get viral load testing every 4 weeks for the 6 months post TX, so we as research participants get this information sooner and more often. Still it will not be until after the six month mark that we are SVR but I am real hopeful for that outcome. If not at least we know we have the options with the 7977.  

I also was feeling depressed the first two weeks post treatment, just real tired and feeling the blues. I am now about 12 weeks post and life is slowly returning to normal and I'm feeling good. This post TX time has had its ups and downs, feeling great one week and then feeling not so good the next.

Sometime around week 6(post) I started running a low grade fever and was feeling generally unwell but no other symptoms to speak of so I was worrying if the virus was back. PreTX I had often (for years) run a low grade fever for weeks at a time. Turns out I had an infection under the gum and into the bone, a course of antibiotics cleared it up and I was feeling better. During TX I had a lot of mouth issues and low WBC’s so I think it may have been an ongoing infection. My week 8 post results came back undetected, what a relief.

I was having some blurry vision problems during TX and that did not improved, it continued to worsen after TX with double/ghosting vision issues. I have been to an Ophthalmologist and now have my first ever prescription for eyeglasses (bifocals) I have a slight astigmatism that is causing some distortion and I also have cataracts. A lot of people start to have declining eyesight in their mid forties so that is likely part of the problem and maybe the treatment sped it up a bit.

Thanks again for the encouragement and support, and keep hanging tough and feeling better.  

[Tekelcat]

I'm glad to read that the post-td nasties eventually go away. I'm 10 days post-interferon and 3 days post-ribavirin. I felt great for the first 2 days, but it's been quite difficult since, exhausted, hot flushes, more bone pain, nausea. My doctor and the trial coordinator say it's all normal and it will all subside over the next few months. I didn't believe them, but now I do!

[BoceprevirGal]

  Great news, and very encouraging :)

[FaithforHealing]

Hang in there, I hope you do feel better as I did, but it seems everyone has their own experience with all of this: pre, during and post tx. I believed my team when they said the symptoms would go away, but I really got scared when I could see and hear their concern when they actually got worse after four weeks. So, even if your symptoms don't go away on their time table, don't give up; as I said, it seems we are all different.
I hope you feel better sooner than later!

[FaithforHealing]

Can you believe we finally got through tx?!?  Sounds like we are having the same post tx experience; it's a day to day thing with new and interesting symptoms. I, too, wonder about things just being age related, and I'm also having trouble remembering if maybe I started having some of the issues pre tx and ignored them. As I get older I just kind of accept new aches, pains, etc.as long as I can keep going with daily life, lol. My primary physician and team have said women tend to do that.

I think part of the problem upon finishing tx is expecting too much too soon, and also having to face (catch up) on everything we truly had to just let go for so many months. I think the brain fog actually helps one not worry about a lot of obligations, etc.during tx.  I couldn't do them anyhow so I feel blessed that I didn't have the constant awareness and anxiety to be freaking out about them all of the time; I was really in la-la land mentally with the anemia/brain fog. And then when it cleared up it was like "whoa, I've got so much to take care of!" and the anxiety and depression really kicked in.
I hope you continue to keep feeling better. Keep me posted. :)

[FaithforHealing]

Thanks, I appreciate the congrats. I know that being geno type 2 I never had to go through the more difficult three med tx, and some had to do it for so incredibly long. Many had such horrible side effects, and then the need for rescue drugs for anemia, etc. I barely made it though 24 weeks of SOC, but seeing some of those posts helped to make me shut up, count my blessings and carry on!  The "intestinal fortitude" to "fight the fight" as they did is a true testament to the unbelievable perseverance and tenacity of some people. I know this online community has given so many the strength to keep going. I don't think people would, or could, show up at local support groups (if they existed), I could barely get out of the house to get to my monthly appointments let alone to the store, etc. In this case, the internet has been a godsend!
I hope you are doing well, too!  

[Bill200]

Definitely give it some time and do some light exercise such as walking.  It takes time but without the virus mucking up things you're body will heal and you'll come back strong.

[ceanothus]

Thanks so much for this post! This recent addition is what really has hit me lately (at 6 weeks post-tx):

"I think the brain fog actually helps one not worry about a lot of obligations, etc.during tx.  I couldn't do them anyhow so I feel blessed that I didn't have the constant awareness and anxiety to be freaking out about them all of the time; I was really in la-la land mentally with the anemia/brain fog. And then when it cleared up it was like "whoa, I've got so much to take care of!" and the anxiety and depression really kicked in. "

This anxiety has certainly been hitting me lately! It's hard work to keep telling myself I need more time to recover before I can try to tackle it all!