I achieved SVR as of March 2013, but unfortunately I achieved cirrhosis way back in 2004, so it has a huge lead time. I'm very fortunate, and grateful, that my liver has stayed well-compensated all this time, but I realize that for at least the next 7 years or so, I will continue to have an increased risk of HCC and could still decompensate as well. I would like to do everything possible to speed up the recovery process and the "remodeling" of liver architecture that my hepatologist said should eventually occur. To this end, I'm looking over the recommendations for supplements. Unfortunately, HR Researcher is no longer around to ask and his archived comments are very much slanted towards those with active HCV. Does anyone know of well-researched recommendations for improving cirrhosis when HCV has been eliminated?
It seems that Cucurmin is a no-brainer, and I've been taking it since my EOT, but the other supplements in HR's list are less clear in benefit for SVR patients. What do you all know, or think, about this?
The no-brainer for me is the Coenzyme Q 10 for the reasons discussed in the last 1/2 dozen posts on the 'My Three' thread I started on this page. HCV causes damage specifically to the mitochondria of liver cells and CoQ10 is necessary to mitochondrial health. Willy50 has some good youtube links on that thread.
Because my job sometimes involves exposure to toxic chemicals (no matter how much PPE I wear), NAC -- N-acetyl-L-cysteine -- is another no-brainer for me. And given how much incidental toxic chemical exposure everyone receives these days, I think everyone who is SVR should probably supplement at least at the typical OTC level (aprox. 600 mg.)
PPC and resveratrol are two others worth researching if you're SVR.
This is a great question. I was going to ask a similar one about Resveratrol.
I'm going in for my last test and ultra sound in the beginning of Nov. I would like to get some ideas myself so I can present him with a list for his approval.
My hepa did say to not take vitamin E.
What I am taking: Vit. B complex
Coenzyme Q10 100mg.
Vit A & D.
I'm going over this with him again at my appt. Because I can't remember if I asked about the last two!
This article is discussing factors concerning people on treatment. However, some of it may spill over into the area of people who have sustained SVR.
Mitochondrial Free Radicals, Antioxidants,
Nutrient Substances, and Chronic Hepatitis C
I especially took note of the following section of the article, which is near the end. It mentions liver histological improvement:
7.6. Combination of antioxidants and nutrient substances
Beside the use of those antioxidants, some nutrient substances treatments in mitochondrial damage have been reported to produce a positive effect, as reviewed in Tarnopolsky (2008) and Orsucci et al (2009). Further, the combined treatment with antioxidants and other nutrients has been show to efficiently decrease mitochondrial oxidative injury, increase mitochondrial ATP production, and to arrest the progression of clinical symptoms.
Beneficial therapeutic responses to CoQ (Gane et al., 2010), carnitine (Romano et al., 2008; Malaguarnera et al., 2011), choline (Niederau et al., 1998), or N-acetyl-cysteine (Cimino et al., 1998; Neri et al., 2000) have been observed in patients with hepatitis C. Furthermore, standard treatment with multiple nutrient supplements (including 2000 mg/day of ascorbic acid, 150 mg/day of GSH, 150 mg/day of LA, 800 IU/day of d-a-tocopherol as well as silymarin, glycyrrhiza, and schi zandrae) for six months leads to significant declines in ALT levels, improvements in liver histological status, and decreased HCV-RNA loads. Such supplements also produce mild beneficial effect in the inflammatory response of patients who are non-responders to IFN-a (Melhem et al ., 2001; Gabbay et al., 2007). Patients with chronic hepatitis C who received a combination of natural supplements (CoQ, EPA/DHA, Se, and vitamin B complex) for six months demonstrated significant improvements in immune function, reduced adverse side effects, and decreases in HCV-RNA loads.
Reductions in the rate of non-responders were also observed (manuscript from Dr. Simon Hsia). These observations suggest that the synergistic effects of antioxidants and mitochondria-related nutrient substances may be effective in antiviral therapy.
My Hepatologist was fine with everything I was taking except he said to take less Vit A than I was taking (so I decreased the number of days per week that I was taking it). However, I am at Stage 2 fibrosis and I don't know if someone with Cirrhosis would be able to take some of these supplement. I take the following:
Citracal Plus D (1500 mg/1250 IU)
Vit D 50,000 IU weekly
Stress Vit. B Complex
Vit. E 400
Vit A 25,000 IU twice weekly
Omega 3-6-9 (Nordic)
Also, smearing Vit E on your skin is not the same as ingesting it.
Ceanothus, I don't know what might help with the liver fibrosis other than what was said in that article that I posted above. I don't know how many studies have actually been done.
There are various threads in various forums and I think it is good to have one here. It isn't always as though we all need exactly the same vitamins/supplements/micro nutrients, but IMHO discussion is always good as long as we understand that we may not be served well with a cookie cutter approach; whatever member A or B is taking, that is what I need too.
(I mean, it could be, but it is better to find out and to know)
Most/ many of us ..... most Americans are low in Vitamin D
Many people with neuropathy are low in several B vitamins and minerals.
Many people w/ neuropathy may have suffered w/ low HGB
(so think; how can we devise ways of getting more oxygen to our extremities if we have peripheral neuropathy)
Many people w/ neuropathy have diabetic/ pre diabetic insulin/ blood sugar issues. So we may have to look at diet as well as supplements.
Part of my point is that we also have to look beyond mere supplements.
I was at a gathering where I met heppers, some untreated. Some on treatment, some SVR.
I was surprised to see how many smoked.
IMHO....we have to do as many things as we can....perhaps perfectly if we are going to be less damaged, or to get better.
I'm sure that some of us have seen many healthy people die....while we.... the chronically ill..... have continued on. Some of it may be because we take better care of ourselves, cause we have to. : )
I suffered some neuropathy and tinnitus with TX, but I may have had the beginnings of neuropathy pre TX. When I increased the load during TX..... my neuropathy accelerated dramatically.
Since I have stopped I feel as though it is improving and IF I make a few more refinements I may have the possibility of getting back to better than before TX.
I will see a neurologist and see what they have to add to this. I'll possibly get some refinements on what I need to improve, if my neuropathy is to improve. I already feel as though (while it's too early to say) that I'm making improvements already.
So there will also be some additions and refinements coming based on what I learn.
I am taking ALA 200 mg
Vit B complex but may add specific B vit if I am deficient-will test
Vit C but will get iron panel see what TX did to ferritin. Vit C affects iron.
Glucosomsamine/chondrotin for joints (sidebar-iron overload is very hard on joints and other systems. I think we should monitor pre and post TX)
Co Q-10; I tried a different this time-----Qunol ultra claims 3X bio availability (like milk thistle also is not readily digested) I dunno....trying it
I was taking both zinc and selenium as both were thought to be deficient in many heppers and both may be mildly anti viral. I may check levels.
Same with Vit A, improved SVR rate, but I fear overdoing any of these
Somewhat true for Vit E. I no longer take it since overdoing it may increase risk, but I may get my levels checked.
I recently added tumeric/curcumin 500mg
Just to repeat..... what we don't do may be just as important as what we also add in terms of supplements....
I don't smoke, I run, I weigh about what I did in my 20's when I worked construction, don't drink alcohol and trying to refine diet even better.
I also think that where one can more natural, less processed, more raw foods, less cooking, more organic/natural is the way to go..... and a closer eye to fats and sugars.
All for now, but I expect I will refine this. I may add NAC or add milk thistle. I really hope to cut back on sugars more. Over the course of a year it all adds up.
There is a possibility that Dr. Mimi Guarneri (or one of her colleagues) at the Scripps Center for Integrative Medicine may be able to answer your questions concerning recommendations for improving cirrhosis when HCV has been eliminated and also about the supplements.
If you Google: Dr. Mimi Guarneri Scripps Center for Integrative Medicine
several sites will come up, including a good video. You can get a good idea of what she believes and the focus of the Institute.
You live in California so perhaps you are close enough to make an appointment and discuss your situation and health issues and concerns with a doctor at the Scripps Center.
You guys are all great! It was after reading the "My Three" thread, and many of the linked threads, that I started thinking once again about what supplements might be best, so thank you, Desrt. I went out last night and bought some CoQ10 and some flaxseed oil to add. I was already taking vitamin D, C and Biotin, plus Turmeric and a Glucosamine/Chondroitin mixture. My GP had earlier suggested that it was better not to take a multivitamin, and has only recently suggested that the Omega3 (fish oil) capsules were superfluous for me, so I stopped taking them - mostly because the number of pills I'm swallowing twice a day keeps getting kind of ridiculous. I haven't smoked for 30 years, haven't drunk alcohol for 10 years, I eat mostly fresh and home-cooked healthy foods, take long walks about 4 times a week, and manage (with great difficulty) to keep my weight within about 20 pounds of ideal.
Somehow it never occurred to me to ask to be tested for any vitamin deficiencies, and now I plan to do that thanks to all the comments referring to testing. To mzkity: my hand is doing GREAT! It's now 7 weeks post-op and it is almost pain free, certainly far less painful than the other hand. I'm still in PT to increase the flexibility, but I'm very pleased with the results and am getting ready to schedule surgery on the other hand in early December.
Pooh, I really liked your suggestion for the Integrated Medicine Center, but San Diego is about as far from the SF Bay as Miami is from New York. Well, I'm really just guessing on east coast distances, maybe more like Miami to DC. Anyway, its about a 12 hour drive, and definitely more than I could manage. I will look for what I can find online though. Thanks all!
Hi there! I remember HR, I think he is still around. I think you will remember that I am taking probiotics and they are helping me quite a bit.
HR recommended reservatrol and I am taking that. He also recently recommended that Hector take it in a post a couple of months ago.
I am also taking the Co Q10 and I credit that with lowering my blood pressure. It was the only change I made and my blood pressure, while never that high, is low now.
Due to the pain stiffness I have been experiencing in the shoulder; I have discovered an enzyme called Serrapeptase, it is supposed to dissolve dead tissue in the body, i.e. my frozen shoulder is made up of collagen that for some reason has wrapped around my shoulder and arm, turning two joints in to one. It is very painful, I have to now work to rip those bands of collagen, scar tissue apart.
On the bright side I now understand why when the pathologist said he saw wisps of collagen which suggested possible transition to cirrhosis that I was graded a 4 instead of a 3 The wisps of collagen were scar tissue. No one ever explained that to me. My blood work did not indicate how sick I was at the time.
Also, I am hoping that in addition to help me break up the scar tissue in the shoulder it might eat away at the scar tissue in my liver.
I have read that if you are on blood thinners you need to be careful with this.
I also have a heavyness in my legs, a few years ago I started taking
Dr Andrew Lessmans Circulation Vein Support for healthy legs
It has taken away the pain and heavy feeling. I could not do without that supplement.
He has a website or you can get it on HSN.
I can tell a huge difference when I miss a week or so. The pain in legs comes back.
I take daily vitamins, and of course the hair, skin and nails since I was so obsessed about losing my hair. Yes...I am a vain creature and bald did not become me, ha ha
Off to physical therapy.
Hope everyone has a great day!
Just because this was mentioned in this thread, I thought I would add a little counter information before I lost/forgot to post it.
It might be better in a Joint pain thread, but I just wanted to get it out there.....
Thanks Wiily, for the link.
I have osteoparthritis in my knee and my other joints are periodically inflamed.
I took Glucosomine Chrondotin years ago and it did seem to help but when I began to feel intense joint pain that I assume was a result of the extra hepatic manifestations and possibly due to cirrhosis I stopped taking it. I didn't feel it was helpful.
What *has* been helpful is exercise, swimming, gentle yoga and walking.
I don't think we can underestimate the importance of exercise.
"I appreciate everyone's point of view. We each have to direct our after care to us as individuals. It is not a one size fit all type of recovery."
I agree Dee and I appreciate how you got this forum started for that very reason. Everyone has a lot to say and I enjoy reading all the takes, questions and advice offered. It is, as I see it a cooperative supportive forum for exploring our personal health issues.
Thanks again. :)
Rivi, thank you so much. I am greatful to MH for starting this.
I agree with you, it is not a one size fits all after care. We each have to decide what can work for us.
I just received my blood work and all is great!
Well, my cholesterol is higher than normal. I started a bad habit while on Incivek. Having to eat 60 grams of fat today started me on a peanut butter an apple habit which I still do 20 months after finishing.
I am stopping the peanut butter and will be retested in 6 months.
This will probably help my sugar and my A1C test
You are such a dear, I value your friendship very much
I started taking b12 after the link from Willy about how chemo depletes b vitamins and surprise, surprise, what a difference it makes.
I am not ready to go mountain climbing yet but I feel so much better.
I cannot understand why the medical community is not recommending supplements in cases where a procedure clearly decreases these necessary nutrients in our bodies. So simple and so cheap.
Anyway, thanks guys. :-)
I think it's great that you feel better.
I hope that it is as easy ad adding a low cost supplement.....and when I saw that the B12 seemed to work I also wondered about any other micro-nutrients/vitamin levels that might be out of whack.
I'm probably going to try that testing myself, since many people may be low dues to age, due to having a chronic disease, or perhaps due to drug treatments.
Oddly......I thought I posted that thread in the post TX forum but I now seem to see it in the social forum. Perhaps I am losing my marbles. : )
Such a test would catch such a deficiency, and given that we may lose our ability to absorb some b-vitamins as we age it may get worse, instead of better. Further, if one might be super deficient, some of these may be available by injection.
In my case I have a relative that died of pernicious anemia. It is possible in my case there could be a genetic issue involved. Lots of possible reasons for these issues and it may be one overlooked area we may be able to help ourselves.
Interesting stuff and I'm delighted it may have helped you.
If so, your post may also help many others.
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