EOT

[ceanothus]

I'm so glad its finally ending! Last Sunday was my final injection and dinner time will be my final ribavirin. I can't wait to start clearing these toxic drugs from my system. The last few weeks have been horrible for sx, with my HGB dropping to its lowest levels yet (10.3 as measured a week ago, but by how I'm feeling I think it kept dropping after that test), the RLS got worse again (the dopamine enhancing drug had to be stopped due to other sx), the cracks at the corners of my mouth came back (I'm using the anti-fungal cream, thanks to you guys (my doctor didn't have a clue) and getting relief, the sores on the tongue came back (the biotin helps, but not enough), the coughing and wheezing have been pretty severe, the intestinal sx from the ribavirin has been awful, even my osteoarthritis in my hands is flared up worse (the Voltaren gel also had to be stopped, as it was causing a rash. I hope my body will tolerate it better once the ribavirin is out of my system, as it has been causing constant minor rashes all by itself). I've been feeling so crummy that I haven't been on the forum as much, and now I see I've missed all kinds of good news - so many dear people here who have achieved a well-deserved SVR just in the last week or two! Congrats to all! Is there any good advice for warding off the anxiety between EOT and getting the next significant HCV PCR results? My hepatologist says 12 weeks will be significant, but I know the standard is 24 weeks. Those of you with brains that retain every HCV fact: do you know of statistics showing reliability of 12 weeks versus 24 weeks? Also, I personally think I'd feel better if I was also tested at 6 weeks. I know it won't reliably show SVR, but it seems like it (assuming the results were UND) would give me more reason to hope and less reason to fear the worst. Any opinions? I love you guys!

[ceanothus]

Thanks Bean! I am feeling remarkably better in that a huge weight of depression has begun lifting and I'm regaining some of my usual amounts of both animation and intellectual function. Some other sx seemed to be rapidly improving but have since done some backsliding, so the initial "improvement" may have been just one of the usual fluctuations. Anyway, for now the mental improvement is enough to make me happy and I can be patient for the rest of it. Today is still just 2 weeks post-EOT. I can certainly relate to you using an old slip to get an earlier test done - I do plan to try to get one at six weeks. I know it can't prove I'm SVR, but at least I will know if it has returned early. I'm too worried about that possibility to wait 12 weeks for my first test!

[frijole]

ceanothus
I am very glad you are done.  The end sounds like it was wretched.  I hope your body can expell these toxins soon.  I can't add anything to the other suggestions.  Just wanted to tell you I am glad you are done and hope the healing goes smoothly.  I do agree totally with your comment to fmulder that these are new treatments.  Quite different from the ribavirin and interferon.  Anything that can target a specific virus is pretty darn sofisticated in my book.  I too wish they could get rid of the sides, but they seem to go with the territory.  

"Those of you with brains that retain every HCV fact: do you know of statistics showing reliability of 12 weeks versus 24 weeks?"

I am not sure there are statistics out there, but I was so anxious that I took an old unused lab order(they rewrote all my labs at some point to change from the standard VL test to the QuantaSure so I had plenty of old lab orders around) and had a test run last week at 9 weeks.  I know it does not prove that I will be SVR, but last time I knew I had relapsed at 10 weeks (due to ALT and AST spikes) before I had my 12 week VL test. So, I think there is hope.

I am sending healing waves of enegy to you~~~~~~~~~~~~~ can you feel them?

bean ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~...
"

[ceanothus]

I was trying to hit the reply button (on my iPhone) when all by itself it instead chose the best answer button a full 2 inches away. ARRGGGHHH, using a mobile device can be a pain! I wish they would let us undo things here.

I wanted to reply to your comment, as I think the triple therapy most often used now is a really big change from treating with just interferon and ribavirin. It boosted my odds if success by a huge amount. Unfortunately it also boosted my side effects, but if it works it will be more than worth it. If it doesn't work then I'll be eagerly awaiting the approval of the new interferon-free drugs, and hoping they are out soon.

[willbb]

Just saw this...Congrats on fininish up!!
As pooh mentioned the EOT PCR at 12 weeks is approx. 99.7% predictive of overall success so the best of luck if you can have this PCR.

Will

[ceanothus]

I'm so grateful for all of you guys – I'm quite sure I never would have made it without all the support I got here. It's now about 10 days post-EOT, and my mood started improving within days and now I'm noticing my skin is getting better, my mouth sores are completely gone and my tongue has lost that absurd hyper-sensitivity that was making it hard to even tolerate the mint in my toothpaste much less any spicy food. Hooray, I can eat some spicy foods again! I can also drink coffee again without getting sick to my stomach, and those are really nice things to have back again! I still have the coughing and wheezing, the fatigue, the intestinal problems and I'm still bruising like crazy – worse than ever actually. Overall I'm really pleased with the progress I've made. I guess I better go join the gym or the pool though. I lost a lot of muscle tone during tx and have been making resolutions that I'd start working on that once I finished tx. Time to start following through!

[MeWithC]

I'm so happy for you!!

[rk2761]

Glad you posted. I'm three weeks to the end of treatment and my experience sounds a lot like yours. My HGB level has really dropped and I expect it to continue - because that's been the pattern throughout the seven months. Lately, the intestinal sx have flared up. I didn't know that was due to treatment, which is why I'm glad you posted. I wasn't sure it was a sx - but since it often happens after the riba I suspected it was.

Good luck with your recovery and post-tx results.

[ceanothus]

I only saw my doctor once during tx! He was readily available via email and phone though, so it was okay.The definitive PCR test to determine if you are cured or not is usually done at 24 weeks (just a little under 6 months), but many people get a preliminary test done at 12 weeks after EOT. The 12 week test is 99.7% accurate, but I guess the doctors like an even higher rate of accuracy before they make any pronouncements. If you are impatient for the news (like I am) you should be able to ask your doctor to order an additional test at the 12 week point, although there is a possibility that he's not ordering because your insurance might not pay for it - but maybe they will too, maybe he's just being really conservative. I guess you'll have to ask to find out. Good luck (to both of us)!

[kittyluvr420]

Congratulations on finishing tx!  
I have scars on the corners of my mouth from thrush. It came back right when my tx ended. I looked like the Joker. I used an anti fungal cream & it cleared up.
My Dr. told me to do a lab in 6 months post tx. He wasn't very informative during tx. I think I saw him twice during tx. Am I suppose to do a 3 month lab? I just started shaking thinking about it.

[Dee1956]

I am very happy you are done.  I know my last week was so hard I did not think I could do it.  In fact I might not have taken the last few Riba, I was delirious
I am here to say Congratulations!  You did it!
I realized after EOt that I was stronger than I ever thought I could be

WOO HOO!!

[Revalation]

I'm so very happy for you.
Hopefully, you'll get your life back now.
Enjoy every minute of relishing no more meds.

Congratulations,

Reva

[JasmineT]

Congratulations on finishing!  It takes a while to feel back to normal but you will start feeling better Each week now.  Exercise, massage, water.  Get the toxins out.  Hope you recover soon.

[1swimmer]

I'm so glad for you. Hopefully you start feeling better and better, soon.
Cheers,
C

[2mlbb]

Congratulations To You! You made it through a very tough time. EOT are second most awesome initials to post. We look forward to the most important from you, SVR  :) You will feel better soon. My last riba was on 9/12/12 after 24 weeks of triple with incevik. I felt clearly better within 2 days. Energy is building slowly, stomach pain and heartburn have eased tremendously. Only one prilosec this whole past week. That is progress! New hair is on my head with hardly any anywhere laying around. My skin no longer feels like a paper towel. I can add a little more heat to the tub or shower without itching like crazy. Very subtle but noticeable changes. I am loving them and know you will too, very soon. Hang in there some more...Best wishes :)

[ceanothus]

Thanks so much to all of you for your thoughtful replies and encouragement. I will certainly be sticking around on the forum. I'm sure I will still have questions, and hopefully I will have good reports of recovery that might encourage others. In the meantime I think I'll take OH's advice and sign up for some massages!

[rivll]

I am very happy for you. I know it has been a long difficult trip, but you did it.
Wishing you the best and SVR!

[ceanothus]

I think there must be a number of different possible factors in those mouth cracks. When I first started getting them I was really resistant to the idea of using monistat or an athletes foot med around my mouth, so first I tried Aquaphor ointment, which did work one time on one crack but never again, then I tried antibiotic ointment, which never helped at all. Finally I broke down and tried the monistat and it has worked really well - they clear up within 2 days. This last week was especially annoying though, as just as one was starting to heal I would get a new one on the other side, and it went back and forth for a while.

[Idyllic]

Sorry about the cracks around your mouth. In order to control them it helps to know what is causing them. In my case (this is gross) but I developed acid reflux and if I do not sleep with my bite guard or (at certain times) with my head tilted then the next day those crack begin to appear.

I have also noticed they can appear from medication-related dry mouth. That is why for me washing with an antibacterial soap and frequent applications of an antibacterial ointment usually gets rid of them in a few days.
_____________

I posted a response related to your rash in your NSAID thread.

______________

I am a few months behind you as far as EOT goes but I would imagine a 6 week PCR would be more for reassurance. I probably will want to do the same thing too.

_______________

You have really come a long way and worked through some tough side effects. I am glad EOT is here for you. I hope you continue to share your wisdom and expertise with us as well as how you are healing and getting on with your life.
I wish you the very best of luck & pray SVR for you ♫

[orphanedhawk]

Hurray ! I am so very happy to hear this. You've not had an easy run but here you are, at the finish line !

The angular chilitis, sores in the corner of the mouth, broke out worse for me in the weeks immediately following tx. Monistat didn't work.Nothing worked until I got a prescription for ketoconazole cream 2%. That did the trick.
Another one that works for canker sores inside the mouth is Triamcinolone Acetonide dental paste. Usually I just use lysine.

My hepatologist does a PCR at 12 weeks and 24 weeks post tx.
If it will make you feel better to do one at 6 weeks, it certainly can't hurt.

I had some nasty post-tx digestion problems, waking up with horrible pain. Besides getting a good tummy massage, I found that not eating anything that is hard to digest, nuts, seeds and cheese, helped enormously.
I can eat them now.

Do get some body work. Tx is so hard on our bodies. I'd suggest a series of massages.

Congrats again !

[LadyHep2]

CONGRATS right behind you baby!  They were not going to do a 90 day work up  I insisted on it Friday I am not sitting around six months to find out I want to at least have an idea and have labs done at 90 day interval my other specialist agreed so I am happy ;)  Bet your thrilled your a fantastic lady and were one of the first ones to help and guide me through the site...  

Hugs To You

[flcyclist]

Hi ceanothus, just wanted to congratulate you for making it to eot and finishing a long and brutal round of tx.  You've given it your all, now time to recoup and start feeling better.  One of the first things I noticed after eot was the annoying cough subsided and gone in a week or two.  The fatigue took longer to disappear.  It takes a month or more to clear the meds, so your cbc's may take a while to come back in range.  

I had a pcr done at eot, then at 12 weeks and at 24 weeks.  You can have one at 6 weeks, but I don't know the probability of SVR if und at that point.  It didn't bother me to wait until 12 weeks.  As pooh mentioned, that accuracy makes it worth doing.  I couldn't wait for the 24 week pcr to find out.  

Relax and enjoy your med free days.  Hope to see your SVR post soon.  

[Naya888]

I am so glad for you  being finally done.You did your best and reward will come.Congratulation!I hope someone will answer your questions I would be also interested to know.Hope you start feeling much  better soon.

[pooh55811]

Congratulations!

The 3 month post EOT VL is 99.7% accurate, so if you are UND at 3 months post, SVR is extremely likely.