Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Mugwump on June 25, 2016, 09:15:59 pm
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I am starting to come to the conclusion that the incredible boost many of us experienced during treatment was because we had forgotten completely what it was like to have a liver work properly. The sudden improvement in liver function after 4-6 weeks simply makes us feel like super-beings.
All of a sudden I was dancing on my toes with new found strength in every fiber and muscle. Even though there were still slight headaches going on my, comprehension and mental acuity was as if all my daily problems and challenges were minor issues that I could take on like a bull in a china shop. I even considered lacing up some skates and joining a hockey league!
Those who read this who are considering treatment;
YES the Harvoni-DAA treatment can indeed make it seem as if there is something spectacular in the drug that like cocaine makes you think you are invincible. But the absolute truth is if you have compromised liver functions with advanced HCV to the point where daily your blood is polluted with toxins from bilirubin and other by products of dead and dying liver cells then you have learned to live with feeling like hell for many many years.
As a word of encouragement to those who are starting treatment and have heavily compromised liver functions: the DAA high which you most likely will experience is quite real and is easily understood. It is absolutely wonderful and can be a time to do things and experience that which we have forgotten. BUT do not think that the drug itself is causing this effect because the truth is that what is really happening is a simple normalization of liver function by removing the agent that was constantly destroying the liver at an accelerated rate.
Cheers to all and firstly SVR, then a new found sense of purpose and self worth. The Harvoni-DAA high is a reminder of what is most important in life and as you slowly find a more even keel post treatment it is easy to forget exactly how shitty having HCV really was!
Eric
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Mugwump, always appreciate your input. I agree wholeheartedly with you -- the "normal" so many of us have had for decades isn't really recognized until we can finally see it for what it was. I truly was astounded at how "fogged" my mind had been until I could see it w/ the Harvoni change. Almost like it was in slow motion? Still difficult to put into words, but I was just telling my husband about this "transformation" this week, so interesting you wrote about this today.
I had such a great day today, I really felt like "my old self" in energy and thought and initiation and optimism -- I just pray this is the beginning of many more days like this! You really don't know how this disease has affected you until you aren't anymore..... and I am still waiting for my SVR12, so I'm not there yet....... but I sure feel like I am on my way. I want all of us to get our quality of life back again! Thanks, FT
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Eric, I most definitely experienced a strong case of the Harvoni High every single day of treatment. However, what DOESN'T fit your theory is the fact that I had the Harvoni High ONLY during the 84 days of treatment. Because I reached SVR12 and SVR24 and my liver enzymes remained at their "new normal," my liver must have retained its better health, yet my energy level post-treatment has been nowhere near as good as while on treatment. (My energy level post-treatment is slightly better than pre-treatment but substantially lower than while on Harvoni.)
Gnatty
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Eric, I most definitely experienced a strong case of the Harvoni High every single day of treatment. However, what DOESN'T fit your theory is the fact that I had the Harvoni High ONLY during the 84 days of treatment. Because I reached SVR12 and SVR24 and my liver enzymes remained at their "new normal," my liver must have retained its better health, yet my energy level post-treatment has been nowhere near as good as while on treatment. (My energy level post-treatment is slightly better than pre-treatment but substantially lower than while on Harvoni.)
Gnatty
Ditto here Gnatty. Hard to understand why we felt like gang busters for only a short period, but just perhaps the rush of normalization of liver functions triggers very special chemical signals which create a sense of well being, overcomes and ease greatly what else ails us. Perhaps this is part of a broad healing process where our systems have an overdrive function specifically geared to overcome serious injury specifically to the liver.
If this is the case then perhaps there is much to learn about how the liver works to regulate much more than what is currently understood. What I am saying is the Harvoni/DAA high was quite real and just maybe it is a chemical set of signals specifically sent out by the liver that can work on many systems at once but is used sparingly for some reason or other. A reaction like this could well explain a great deal and could lead to ways to aid in the healing of much more than just HCV.
Eric
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Eric, could Harvoni affect the adrenal glands? Corticosteroids such as prednisone cause the adrenal glands to produce less cortisol (and several other hormones), so the patient must be tapered off the prednisone so that the adrenal glands can gradually resume full hormone production. Harvoni is stopped "cold turkey," so if the adrenal glands have been usurped, the patient might (as I did) feel especially fatigued in the first days after treatment ends (until the adrenal glands can get up to speed on producing cortisol and the other hormones).
This is just a theory based on my experiences with prednisone and Harvoni. (The prednisone high is like a more intense version of the Harvoni High.) I'll be seeing the hepatologist's CNP on Wednesday, so I'll ask her if she knows or has a theory (she's got a PhD and teaches at the medical school, so she might).
Gnatty
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Gnatty you might be on to something with adrenal function stimulation. I doubt that Harvoni itself causes the effect though. Logically, the liver might simply be increasing the natural messenger hormone to the adrenal gland when it needs to rebuild large sections of the mass of cells. I was checked for adrenal hyper loop years ago when I was incorrectly diagnosed with Graves disease.
The levels of adrenal stimulating hormones could certainly be checked during DAA treatment to ascertain whether or not this is why during treatment some of us felt like a member of the Russian Olympic team does after seeing their doctors!
Steroidal treatments to increase functions are a tricky business but Harvoni and the other DAAs by itself do not contain any (Russian secret agents) ;) that could directly act as steroidal or adrenal stimulants. BUT indeed the liver might do the deed all by itself if it needs to. This would mean that those who have less liver damage would in turn have less of a stimulating effect from the removal of the virus because they have lower numbers of liver cells to be replaced.
Interesting, but until someone is actually tested during TX for an anomaly in adrenal stimulation cycle functions this is all just speculation.
Cheers
Eric
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Gnatty, please let us know what you learn on Wed. This is all very interesting, how some of us experience 84 days of energy and some of us none at all. I had increased energy for about the first half of my treatment, then it leveled out to what I'd say was more than before treatment, but certainly not like during the beginning. It almost corresponded to when I think I became UD, around the 6 week mark. I had a very noticeable change in my mental clarity around the end of the 5th week. I was still detected at my 4 week lab and was UD on the 8th week.
My energy has certainly been better since treatment, but not what I'd call normal by a long shot. I haven't tackled longstanding projects around the house like many others have been able to, but this weekend that was much improved, thankfully, and I really hope it continues. I find this question of functional energy very interesting, due to it's profound effect on our quality of life. Still an awful lot to learn about these DAAs, for sure. FT
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The CNP doesn't see any way Harvoni can affect the adrenal glands. She didn't have a plausible theory and could only conjecture that the energy some people experience might be solely due to heightened expectations. (So many medical professionals chalk anything inexplicable up to the placebo effect.) I've taken numerous medicines, but prednisone was the only other one to raise my energy level, so I certainly didn't expect to have that happen with Harvoni. More to the point, after 84 straight revved-up days and the UD and huge reduction in ALT and AST I did expect the extra energy to continue post-tx, but it didn't. So much for her theory.
FT, glad your energy seems to be approaching normal.
Gnatty
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reminded me a little of when I was using the patch to quit smoking just felt a little wired so to speak i with the patch and with Harvoni.
I definitely have nothing to go by for what a normal 58 year old should feel like I had hep c probably since I was 20. Other than maybe feeling a bit more tired than one should feel I never really felt anything never noticed any hep c symptoms. Tired is so hard to quantify what is normal tiredness and what is unusual tiredness anyway?
Really the only symptom I have ever noticed was when I began to have lower leg swelling but that was from cirrhosis not hep c.
Best to all
Lynn
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Gnatty, thanks for the input. I think there is just an awful lot for these researchers to learn about what these DAAs do to the human body. They know it can eradicate the virus, but the rest of it, not so much..... we really are the pioneers here. I guess that's our role here. FT
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The high was real not just a psychological anomaly. There are most likely mechanisms within the liver to send messenger chemicals that might boost endorphin production within the brain.
During the "high" there was a radically enhanced sense of well being and positive nervous energy that was not easily dismissed and it continued on after treatment.
Until some serious studies are done to ascertain exactly how the liver manages to regenerate large numbers of cells and how it influences the equilibrium of the individual to stimulate the person into positive actions to aid in the healing process, I can understand why some professionals will dismiss this supposition.
Obviously increasing important stimulating chemicals to levels that are above mean would make sense during a period of regeneration of the liver. The person needs the ability to gather more food and exercise to help build the system up in a hurry.
I see no reason why the liver should not have these capabilities genetically.
In conclusion: It is fool hardy to dismiss what we experienced as just a purely "psychological" manifestation of HCV DAA treatments.
Eric