Hep C Discussion Forum

Groupergetter · Guru

RE: Has anyone returned to "normal" after TX and clearance??

fourlocos · Senior Member

Thanks Gracie. That is Cash. He kept me going through my treatment! No matter what he needs a few miles of hiking a day in the woods. And no matter how lousy I felt, we walked! Walking in the woods is my valium. It's how I cope with life. Dogs keep us motivated!

Gracie · Guru

It's amazing that when you have the liver pain, you can't think of anything but. Constant nagging worry. And when it's gone, it's just gone. Mines been gone now a couple of days and I've only just started harvoni 3 days ago. Hoping that's a good sing, or at least a step in the right direction. At least a sign that the inflammation has lessened.

love your dog, what a beauty!

fourlocos · Senior Member

Thanks Tig, yes updated the photo. My liver area discomfort has disappeared finally. I just noticed it actually! That hung on for a long time as it has with so many of you. 5 months EOT and I haven't felt it now for a while. I can only assume that means inflammation has settled down. I would like to think that way. According to my doctor it never existed anyway!

basser · Senior Member

so good to have this forum just hearing of other peoples battles before svr and post tx problems really helps.just knowing im not the only one.getting back to normal? what ever that is.seems recovery is like tx every one is different.im up and down like a yo-yo.think im getting rid of fatigue on day then bang am wiped out.its now 7months since i stopped tx.was svr thank the lord.had my 60th birthday in may.is a miracle im still here.the last 2yrs have been a nightmare.am so glad i dont have that monster hanging over me any more. am sure that things will be ok just takes time. best of health to you all william smile

Tig · Admin

Hi 4L,

I'm sorry you're feeling like poo, but I'm glad to hear the joint pain and fever have been reduced. That must make you feel better about your post tx health outlook. It takes time and while we all hope for an immediate resolution for some of these issues, reality reminds us that good things happen, but at a slower pace than we'd like!

I know how miserable those cold/flu like symptoms can be and hope to hear you're feeling better soon. It's always good to hear from you! I like your new avatar smile

fourlocos · Senior Member

I thought it might be best I do an update to my post below on how I am after treatment and clearance. The week I wrote that I was having much worse pain than what has been normal. I wound up coming down with a high fever for 24 hours the day after I wrote that! I was crippled in pain and moaned (I am told) for 14 hours in bed. I haven't been in bed that long in years! I came down with a bad sore throat, cold, cough etc. Still sick now but once the fever broke all my joint pain left me. Much more normal age related stuff now. I did want to clarify illness was causing my sudden increase in pain.

skewedButNotBroken · Senior Member

Well, after reading some of the replies, I don't feel quite as bad. My strength is good especially for my age. I just arm-wrestled a guy at work who is 25 years younger and 40 pounds heavier and athletic and the match was a draw! I have some joint issues but they are minor. I still cut my grass with a push mower in the scorching humid climate of southwest FL.

I quit drinking coffee and my heart flutters have lessened. I can think very deeply (I have to because I'm a computer programmer and I teach mathematics).

I was very, very sick before I started treatment and the thought of dying to get out of my misery crossed my mind several times. So, all in all, I feel much better than before, but I don't feel like I did when I was 24, but then again I'm 58. On a scale of 1 - 10, I expected to feel like a 10 (where 10 is the way I felt at 24) but I guess I'm probably a 7, but before treatment I would have chosen a 1 or 2.

Cheers,

Brian1412 · Guru

Congrats:. I bet the msjority who. Will. Hsve this type of experience will be the majority

Good luck on your jon

Brian

Brian1412 · Guru

One more. I walked into my dr once with complaints.of my eyesight. My energy level etc. The whole time i am saying all this he is just dtsring at me: when i finally stopped he deadpanned and said" Brian.you are not 25 anymore. You are 50. Point taken...give it some time

Brian1412 · Guru

Interesting group of responses to what is essentially the same issue. One can get to what the issue is by reading the posts from top to bottom .

With any medicine, if 10 people take the same medicine, it is more likely that those 10 will have differe experiences :some maybe headaches for instance others my not:

Reading the group of posts we all know Hep c was our common. Issue. Some in this thread say these effects got better ,others say its worse.Some dont have any issues which tells us clearly what we need to understand

It is not realistic to expect a med to work exactly the same in all people. The day is coming where every medicine we take will be based on our personal genetic mske up. It is happening as we speak and it will get bgger and better. Until then and even then people will not have the same issues.

Putting this in context. We have people who have had this virus for. Decades. Others like me i only found out last year. The decades. People did some serious nasty treatments while i took a pill and it stopping the virus in a ton of people. Some have what they call side effects others sail right thru..

Chemo told me that in time they resolve.i could not feel my feet for 2years but it returned to normall. Andi was alive..

That is medicine:: i am certain after some time it is more beneficial. To rid my body of this virus and to allow my body to revover and that recovery usually doesnt happen overnight: we are way better off today than 20years ago

I. Dont belive Harboni is poisoning us: quite. The opposite

It wil get better:.

Peace

Rubye · Senior Member

I'm 68 and had Hep C for over 40 years and cirrhosis for at least 3 years. I had neuropathy and arthritis before treatment and during treatment, for 15 weeks with Sovaldi/Olysio, they got a lot worse - more pain, and I also had terrible nausea and fatigue. I could hardly walk a block. Things stayed the same after treatment - worse than before.

HOWEVER, now, after being cured of Hep C for 7 months I no longer have serious pain and my arthritis is much much better. My neuropathy is better but still bothers me. The nausea is gone. And, I just started a new job this week. I see myself as something of a miracle. All my labs are normal and even my platelets, which had been 65 for two years, are now up to 90.

fourlocos · Senior Member

I will join the party and say that I also don't know normal after having the virus for 40 years. I know that slowly over time I felt worse and worse and thought it was age till I had upper quadrant pain every time I put my boots on! I couldn't bend over from a sitting position without horrible pain. About six month prior to getting diagnosed I was sick with colds almost monthly and run down badly. I had hoped for this turn around after treatment. But sadly that isn't the case. I feel like crap most of the time. I am in pain all the time now and am considering asking to see a specialist since it's 5 months EOT and its getting worse not better. I am grateful to have the virus gone. Don't get me wrong. But I didn't expect to trade one problem for another. The hard part is my GI Liver doctor didn't seem to care about my concerns. He was like see you in six months. I told him I am not alone that many others have the same issues after Harvoni. It's like we did our job now move along...... This so reminds me of Accutane back in the 90s. I like many parent allowed it to be used on our teenagers for bad acne. And like so many others my son has Crohns disease now because of that. But hey it did clear up his skin! I am not sure we will fully know the whole story of Harvoni for many years to come. I think its the Sovaldi that is the culprit. Since many that have used it in combination with all the other drugs have the same joint complaints. I have such painful hands, wrists and feet now that it's becoming unbearable at times. I can barely make a fist anymore.

Groupergetter · Guru

Hey VwC, I did the 24 weeks Harvoni and had a noticeable increase in muscle/tendon/joint pain while on tx. My hips, shoulders, and elbows were hurting. I bought a gel foam mattress cover which did help the hip and shoulder pains. These pains and the tendonitis in the elbows have gotten better post tx. Still have the neuropathy. As Tig said some of this may be age related. I've also had this for over 35 years so I too am not sure what "normal" is. I can deal with the aches and pains but really hoping the brain fog gets better.....very frustrating. Take care.

-- Edited by Groupergetter on Thursday 2nd of July 2015 01:51:44 AM

BigPharma · Member

These were also my hot inquiries. Will I feel better than before TX? and how long will it take? Some improvements started to appear around 3 months after EOT, and definitely better I started to feel after 5 months . But I am rather slow on getting this, some of the guys felt better right away.

coolheat · Senior Member

Hi VetwithC, just hang in there, wonderful results are happening. Some sooner, some later. Aside from family and friends, use this train as your rock, even if its rocking and rolling. Here you will here what is happening to you through others. Last couple of days have been snappy, effects my close relationships. Now I understand the ups and downs, as I have been pretty up till now. Get my 1st blood results tomorrow am. Thought I would be so excited, feel like the other shoe is going to drop. Keep sharing VetwithC, as the your and all ours train goes up down and around and over and through. Big Hug2U, CH

Scruffy · Guru

Hi ya

Like others here I don't remember what normal is. I was on a long TX, 48 weeks. I started to feel better right after I stopped the med's. Not a surprise as my hb tanked all through tx. I would say it took me at least 6 months to start feeling "right". I finished in May of last year so I go for my 1 year eot bloods on the 15th of this month (knock on wood) and I feel pretty good. 3/4 of your battle is finished. Now for your recovery, hang in there the worse is over.

-- Edited by Scruffy on Wednesday 1st of July 2015 03:59:38 PM

Tig · Admin

Harry,

It took me quite awhile to notice the improvements you're seeking. Some things improve faster than others but like you, I noticed a worsening of arthritic and joint pain post treatment. Whether it's treatment specific or not, I'm not completely sure. I just realize after following the members here and myself, these complaints are real. I have also noticed that they improve in time and some aren't even related to treatment and HCV, it's age. We've spent decades of our lives affected by a slow growing menace, that is now hopefully gone forever. We'll never be able to turn back the clock entirely, but hopefully the new battery we just installed in it will help it run more efficiently once it catches back up. Recovery takes time and you'll notice the improvements once you give it the opportunity to happen.

Femapples · Veteran Member

I finished Viekira Pak with Ribaviron on June 23rd and the virus is undetected. I can feel my strength returning but I'm still weak. Some days I'm shaky and emotional but I'm giving it some time to leave my system. I'm starting with a personal trainer on July 15th to help me strengthen myself slowly.

And yes, I've had this disease for over 40 years also. I don't really know what normal is but I was becoming symptomatic over the past few years. So, we'll see.

Hang in there,

Femapples

Michaele · Guru

Hi , after over 40 yrs of hep C I dont remember normal, but Im about 65, and I dont feel to bad. Energy comes and goes in burst, but Im bipolar so who knows. Vision has gotten worse since tx. And then there is the cirrhosis to consider. So considering everything Im feeling great for 65 and dont expect to feel like Im 22 again; age of Hep C infection. Good luck hope you feel better soon. Michaele

VetwithC · Member

I just finished 12 weeks of Harvoni and can honestly say that I feel as bad or worse than I did pre TX and from what I'm reading in this 'post treatment topic' no one has returned to pre TX energy levels. I realize that my liver and other systems involved have to regenerate, but how long will it take?

I realize that my body is recovering from devastating battle with a terrible monster [HVC], but the only benefits I've felt so far are less muscle cramps, but that's probably due to my extra hydration during TX.

Otherwise I'm feeling like sh#t with more aches, pains, fatigue, mind fog etc.

WHEN WILL I FEEL NORMAL AGAIN??

Not only me noticing these nasty side FX, but friends and family notice them and some are drifting away from me.

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