Author Topic: When you generally start feeling better? (Read 12217 times)

dragonslayerinprogress · « **on:** February 05, 2016, 02:50:04 pm »

When do you feel better overall? I'm not talking about side effects from the meds but during treatment and after, when does you liver start to either repair damage or improve enough to make you actually feel like you are cured?
Tired of the aches, pains, swelling in feet...etc

Just want to feel normal for once in my entire life :-)

Rocket Girl · « **Reply #1 on:** February 05, 2016, 03:43:43 pm »

feelinglikeafreek, I have read that Gilead Clinical Trials used only the healthiest patients to support their findings regarding HARVONI. You are not a freak. Just keep pushing thru. I take excedrin for the headaches. But I usually take one a day. I take pain medicine as I have a bad back and sleeping medicine ever since menapause. Try to keep moving if you can't do formal exercise. I use a treadmill as I can lean on it with my arms. Boring but effective! Your in my prayers!

Rocket Girl · « **Reply #2 on:** February 05, 2016, 03:46:24 pm »

Quote from: dragonslayerinprogress on February 05, 2016, 02:50:04 pm

When do you feel better overall? I'm not talking about side effects from the meds but during treatment and after, when does you liver start to either repair damage or improve enough to make you actually feel like you are cured?
Tired of the aches, pains, swelling in feet...etc

Just want to feel normal for once in my entire life :-)

Rocket Girl · « **Reply #3 on:** February 05, 2016, 03:50:18 pm »

I have heard from other members there may be an adjustment period when you complete therapy. I'm 2 weeks in. So far so good. hopefully you start to feel good real soon. Bright eyed and bushy tailed!

Lynn K · « **Reply #4 on:** February 06, 2016, 03:13:04 am »

Alot depends on how much liver damage you have.

I have had cirrhosis for 8 years now after having hep c for 37 years I am just happy I am no longer progressing and can live with what I have.

Do you have any liver damage Dragonslayerinprogress?

If you feet swelling is edema due to liver cirrhosis like mine is it could take many years to improve if ever. But at least we don't have to worry about becoming decompensated and facing liver transplant or early death from liver disease.

Good luck on treatment
Lynn

Rosie13 · « **Reply #5 on:** February 06, 2016, 12:09:34 pm »

Hi dragonslayer, I feel like you do. When the heck is this fatigue going to lift? I am 12 wks out from treatment & waiting for the labs to come back to know if I have SVR (sustained viral response). I asked my doctor about when does the liver finally heal & she told me that it can take more than a year for fibosis to heal . She was talking about my damage though & we are all different in the stage that our disease progressed to before we got the tx. I was not surprised that it could take a long time as I had the virus for 40 years. Good luck to you & hang in there...

beto · « **Reply #6 on:** February 06, 2016, 12:54:55 pm »

This is a subject that continues to surface. What is feeling normal? I am of the opinion (and it is my opinion, shared by a few others) that the HCV and the cure are much more complicated than most want to believe. We are cured overnight from something that has compromised, not only our livers and immune systems, but potentially every organ in our bodies and can do a number on one's soul. Cure in the sense we are discussing means being free of the active HCV virus once and for all. Does cured equal healed?

Our biologies are all very different as well. We all have a different "normal". Healing is a process. It works on its own time scheduled. If you look at just the psychological aspects of having lived with a disease that you considered every day of your lives (I know I did)...that knowing you are infected, it is slowly killing you and you felt powerless. Having HCV is not normal. That is if part of normal is being free of disease.

I am about 16 weeks (eot) out and have just had a setback. I have no idea if this "setback' is related to HCV and it's aftermath. Of course the fear arises, "am I relapsing". The question remains; how do you separate who and what you are from a disease that spanned decades? Co-existing with the dragon influences who you are as a person. If you are imprisoned for forty years and then released, are you a new person or are you an imprisoned person who is just not physically behind bars?

All my above blaberings aside, the truth of the matter is that we have all been given this chance and this get out of jail card. We are all lucky to have this new challenge of working through our healing in our own individual ways. This privileged is our new personal challenge (for some hard and others a piece of cake). We are all of us getting better. Sometimes getting better does not feel so great. I see my recent setback as part of the process...because I was fooling myself and trying to get ahead of my own healing timeline. Very difficult to have patience with this process...after all of those quasi lost years.

KimInTheForest · « **Reply #7 on:** February 06, 2016, 04:46:18 pm »

I am now 6.5 months post-treatment, and I have recently begun to notice increased mental clarity and mental processing speed - better than I was pre-treatment. So for me that is one of the first noticeable benefits of clearing the virus from my body after living with it for 45 years. I also think my mood and attitude and 'happiness' level are higher now than they were pre-treatment.

I am looking forward to the day I can say I have noticeably more energy. But that has not happened yet. However, in my case my energy issues are compounded by my iron (serum ferritin) being very low. And it remains low no matter what I do. I have never before in my life made such a concerted effort to increase my blood iron (via supplements, red meat, Vitamin C, reduction of tea, etc.). I have been doing this for the last 5 months non-stop, but I cannot get my serum ferritin to budge above 20 ug/L (reference range = 5-247).

kim

Rosie13 · « **Reply #8 on:** February 06, 2016, 06:07:57 pm »

Beto & Kim great points & glad to know that it isn't unreasonable to expect healing to be extended a long time after cured.The best part is we are on the way!

Else · « **Reply #9 on:** February 06, 2016, 06:26:25 pm »

Amen, Beto! My experience has been that the recovery from long term infection is not an even, predictable trajectory. Any more than the decline of my health, pre-treatment, was steady or predicable. They mirror each other in that respect.

Sorry you're having a downturn. Temporary, I'm sure. But for myself, without a clear cut reason why, I find it impossible not to worry about setbacks being the big "R". $:-\$ We've all spent a lifetime either worrying about symptoms or doggedly tuning them out. It's a learned behavior reinforced over decades. It'd be odd if it went away in a matter of months.

Kim, you give me much hope that my mental clarity will return to what it once was. But the pre-treatment confusion and fog are gone. Re: your low iron. Have you tried bone broth? It's one of those wonderful food/medicines that might help and sure wouldn't hurt.

KimInTheForest · « **Reply #10 on:** February 06, 2016, 10:10:31 pm »

Quote from: Else on February 06, 2016, 06:26:25 pm

Kim, you give me much hope that my mental clarity will return to what it once was. But the pre-treatment confusion and fog are gone. Re: your low iron. Have you tried bone broth? It's one of those wonderful food/medicines that might help and sure wouldn't hurt.

How do you make bone broth? What type of bones do you use? I assume the idea is that the marrow will get drawn out into the soup? I was going to fry up some organic chicken drumsticks tonight. Should I keep the bones after eating and make soup with them?

kim

Else · « **Reply #11 on:** February 07, 2016, 12:30:05 am »

Absolutely! It's not ideal to make in small batches but it freezes just fine.

Here's a recipe that will give you the general idea: http://wellnessmama.com/5888/how-to-make-bone-broth/

KimInTheForest · « **Reply #12 on:** February 07, 2016, 01:08:28 am »

Quote from: Else on February 07, 2016, 12:30:05 am

Absolutely! It's not ideal to make in small batches but it freezes just fine.

Here's a recipe that will give you the general idea: http://wellnessmama.com/5888/how-to-make-bone-broth/

Thanks Else! Will try it.

dragonslayerinprogress · « **Reply #13 on:** February 10, 2016, 07:25:40 pm »

Thanks for all the responses. I too understand that this isn't an easy process. I still have the RA, and other ailments to deal with so maybe all of it compounded and made me worse. As long as I can clear the virus, I'll be happy with that. I hurt, but hurting is life.
Lucinda, Never had a fibroscan just a fibrosure. It was an F2 in 2013 and an F4 in 2015.
I have carried since birth or if not, then 1990 or so? My mom was pregnant with me when she just started bleeding like crazy. They gave her a transfusion to save her life and they told her it was tainted with Non A Non B hepatitis. I know it's rare to get it this way but we both had the same genotype as well.
The other way was a dirty dentist office and a hippie looking dentist that slipped and cut my gum and his finger. That would have been late 1980's. I have blood many times and never had a problem but it wasn't until 1990 when they told me not to donate ever again.
That's all I know. There's so many things we do every day to catch the disease so I can only speculate 2 of the most obvious ways for me.
Bloodwork was done Monday. We are seeing improvement at a snails space but will know all of it on Friday. My hemoglobin is at a 12.2 and I am 2 days into week 4 so that's good news.

Lynn K · « **Reply #14 on:** February 10, 2016, 10:30:42 pm »

Hard to say about the donations.

That was how I found out I had hep c in 1989 for me. Prior to that there was no test available for hep c. I also donated blood several times before that and I figure I got hep c in 1978.

So it is likely I unintentionally infected some people with my prior donations

dragonslayerinprogress · « **Reply #15 on:** February 17, 2016, 05:43:40 pm »

That's the scary part. If I had it but tests weren't developed to find it until the late 80's than how many people did I infect and was unaware. I thank God that my children don't have it. Very thankful!

FutureThinker · « **Reply #16 on:** February 17, 2016, 06:15:34 pm »

Beto, Else, all others -- such great insight into this condition! IMHO, I also think aging plays a role. These drugs are still so new, more info will be available in the next several years that may help us better understand all these continued aches/pains/etc. Remember, Harvoni has only been on the market barely a year and a half! And, the saying goes "Patience is a virtue". Maybe we can try to focus more on being thankful/grateful we now have a path/process to a normal life, albeit maybe down the road after SVR. I do hope life gets better soon, dragonslayerinprogress, as Kim has found. FT

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Author Topic: When you generally start feeling better? (Read 12217 times)