How are you dealing with COVID?

Regarding the eligibility of the 3rd shot, I think it pre existing conditions. I guess not physical disability, but some kind of medical condition that could make your body ill. I am guessing so not sure.

I wonder how many of us got covid and never knew about it

well I have seen forms which say HIV is immune compromised and we take the same medication… so I’m not sure what to actually tick…

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No, people with hep B aren’t immunocompromised. I would tick the option for “chronic condition” though. This made me to be part of a higher priority when I was getting my vaccination.

Thomas

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I had both my Primary Care Physician and my hepatologist write me letters but never needed them. I used hepatitis B and cirrhosis and was never even questioned or asked for my letters.

-Paul

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I agree with Thomas that getting a 3rd shot (or booster) won’t hurt us, so why not get the extra protection! With that said, I do feel guilty living in the US with the option to receive a 3rd dose when most of the world isn’t able to receive even 1 dose!! It’s like we Americans already have 2 life jackets and are being offered a 3rd one when others have none (I read that somewhere, so it’s not my analogy, but I found it a very stark image of the world of “haves” and “have nots”). Always, Joan

I was confused about eligibility for a third dose because initially liver disease was listed as a qualifying condition, but within a week of the announcement that boosters would become available soon, here in the US, liver disease was not mentioned any more. But decades ago when I was diagnosed with cirrhosis, my hepatologist told me that I should consider myself immune compromised.
Does cirrhosis inherently make a person immune compromised?
Joan I’ve had the same thoughts about being privileged to even have the option of a booster but not getting one probably does nothing to make vaccination more accessible for someone in a less fortunate situation and staying covid free does help to keep from spreading the disease. Karin

Hi Karin!

I was just mentioning to Thomas about how it seemed like I was the only one on this forum that posts, that has stated that they have cirrhosis. I know I should NOT be excited about this but it IS nice to know there is someone else on here that suffers from cirrhosis and can possibly relate to what I go through. I certainly hope that if there are others on here living with cirrhosis, that they post as well, as we usually deal with a bit (often a lot) more than those without cirrhosis. We all would benefit from peer input about what we go through and how we try to deal with it.

I think that the official guidelines aren’t always well known by local or regional authorities. I remember how things could change monthly, weekly and even daily back before March 15th. I would see liver diseases mentioned online and not mentioned on the news and other times vice versa. At the time, I got letters from both my primary physician and my hepatologist as it had been mentioned that you may need to provide documentation. No documentation was ever asked for when I went to get my vaccination. Although, signing up online for an appointment was troublesome as it would ask for the underlying condition and liver disease was not listed on many of the appointment websites. But again, documentation was never asked of me when I did any Covid testing or got the vaccine.

However, I would suggest asking your doctors for a letter stating that you have a high risk or ‘underlying’ condition. This way, you can have it with you just in case and you can hold on to it in case there is need for it in the future since Covid keeps changing and who knows when we will finally be rid of it.

All my best,

Paul

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Hi @Karin, it’s my understanding that cirrhosis is linked with weaker antibody responses to the vaccine (discussed here: Weaker COVID-19 vaccine responses seen in people with advanced liver fibrosis | World Hepatitis Alliance). I am not sure about the booster guidelines in the US - as @PuallyHBV said, how you are treated may depend on how up to date your health care provider is, and guidelines and eligibility may vary depending on the region you’re in.

Probably someone like @rgish, @Suwang88, or @Joan_Block might know a bit more about the situation closer to you.

Cheers,
Thomas

Hi Paul, By now here in California I am eligible for a booster on the basis of being over 65 and have an appointment already. I actually had a stronger reaction to the second dose than several of my peers who don’t have any immunity related health conditions. I was hoping that meant I developed a good crop of antibodies but I guess the science is not really clear yet on how the strength of the reaction relates to the degree of protection the vaccine provides.
This situation we’re in with covid has made me think more about wether I’m more susceptible to infections of all kinds because of having cirrhosis or not.
It’s been my impression that I catch colds more easily than a lot of people. Other than that I can’t say that my cirrhosis has impacted my life all that much but I am fortunate that my liver seems to be functioning well despite the cirrhosis. I hope that’s the case for you as well.

Thomas, thank you for that info about antibody responses with fibrosis, It makes the decision to get a booster sooner than later a “no brainer”
Karin

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But what does boosters do? People have been testing positive with covid after the vaccine. So does the booster make you always test negative? In the US, almost everything is back to normal. Yes people are still working from home, but schools are back, most businesses do not require masks, even sports events with thousands of audiences are back. You do need a vaccination papers to get in.

They reported the d variant is taking over then they report states have 50+% decrease in covid cases.

It just all confusing.

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To make things even more confusing here in the US are reports that the Moderna 2-dose vaccine series seems to maintain high immunity levels and protection for a longer period than the Pfizer 2-dose series, which may mean those of us who received the Moderna vaccine may not need to rush to get a booster dose?! My general impression here in Bucks County, PA, is that folks are pretty much able to get the Pfizer booster regardless of age and conditions! It seems we have plenty of Pfizer vaccine supply available. And I’ve heard of folks getting the Pfizer booster even though they received the Moderna vaccine!! So yes, there’s indeed a lot of confusion. Always, Joan

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3 posts were split to a new topic: Living with cirrhosis

Hi Joan,

I don’t know if you folks know how meaningful it is when we see or hear you in conferences or videos advocating for us. Because of this connection we have through this community, it makes things a lot more personal to see you all in an official capacity. I hope all the major Hepatitis B agencies around the world continue to utilize you and Thomas and now John. Since we ‘know’ you guys from this community, it means so much more to us than if it was people we didn’t know at all. It helps that you folks are beautiful people on the inside too.

So, I just went to one of my hepatologists yesterday and when talking about the vaccine, I was told that currently, ‘regulations’ only allow for boosters of the same brand. Although, they said they don’t think it makes a difference and that it will eventually be approved; at least between Moderna and Pfizer. Who knows about J&J. Also, who knows in reality if this ‘regulation’ is being enforced or even in effect because with Covid, it seems the left hand doesn’t know what the right hand is doing a lot of the time.

Sincerely,

Paul

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The theory about the boosters is that it gives your immune system an additional step-up and can prevent severe disease in people whose immune system isn’t as responsive (and therefore may need some extra help).

While the science is pretty settled that the vaccine is protective and safe in these people, the effect of boosters is still under contention. Some people are saying that the antibody levels (even though lower) are good enough, others are saying that it does help. Scientists need time to carefully go through the data and independent groups need to do it in different populations to confirm that it really does work.

Vaccines are there to prevent severe disease, which they do very well. They also have an additional super-power (something that not all vaccines do) and that is to prevent infection altogether. It wasn’t necessarily built to do this and we shouldn’t expect them to completely prevent infection, so it’s a real amazing thing that it does. So, if you are vaccinated and then exposed, there is a good chance you will be PCR positive, but your risk of going to the hospital or dying is reduced dramatically compared to if you were unvaccinated.

As an aside, the Hep B vaccine is a bit of an exception in this regard: it is highly protective and infection is pretty much prevented if you look through traditional measures of infection (though, with very sensitive techniques, you can find that infection does happen in vaccinated people - it’s just cleared very very rapidly).

Hope this clears things up a bit.

TT

With the new variant, I got the booster 2 days ago. My arm hurts and my body aches. Nothing that’s making me bed ridden, but definitely different than the first 2.

Thinking about keeping my kids home next week. We are going to a ski vacation after Christmas though…

I have a question regarding the increasing number of articles possibly linking the covid vaccine with autoimmune hepatitis. I have been trying to figure out why my liver enzymes elevated suddenly after being on Vemlidy for over 3 years with no detectable viral load. My hepatologist has tested me for everything that he can think of that may have caused this elevation ( currently ALT 115, AST 72) and is out of ideas. He suggested I think about doing a biopsy but I declined, thinking my enzymes would lower over time. Unfortunately, this has not been the case. My enzymes remain steady but have been elevated since 05/2021. The only change I can attribute it to is the co-vid vaccine that I received, with the second dose being in March of 2021. I have read a few articles regarding patients who seem to developed autoimmune hepatitis after being vaccinated. Of course some cases may have been pure coincidence and they were on the course already, but there are others where they can’t rule out the possibility. I only saw one case where the patient had no autoimmune history, negative antibodies, and normal IgG but her diagnosis was confirmed via biopsy. These markers would be similar to my own. I haven’t brought up this theory to my doctor yet because I don’t want him to think I’m crazy but I’m just frustrated that we can’t figure out why my ALT/AST are elevated! My job just announced we all are required to get the booster by Feb 2022, which makes me even more nervous! I had planned on getting it eventually but now I fear it may be what is causing my issue.

I mentioned casually to my doctor a possible association between the vaccine and my sudden relapse a few months ago and he was very quick to disagree, so I am reluctant to bring it up again if I will just sound paranoid! Any advice would be appreciated.

Thanks,

Rebecca

I had the same thing, @NeptuneJ. The first 2 doses didn’t affect me too badly, but the booster really hit me hard and I needed a couple of naps during the days afterwards (I am normally quite anti-nap). At least we know it’s working…

Hi Rebecca,

Thanks for your question and sorry for the situation you find yourself in. I could imagine that it is frustrating and a little stressful not knowing what is causing your high ALTs.

I haven’t read any articles on the linkage of the vaccine with autoimmune hepatitis, so I’m unsure about the probability that this may be the case here. Practically speaking, if you have no autoimmune history, negative antibodies, and normal IgG, your only way to be sure is to do a liver biopsy (which can also help with diagnosing any other possible causes of the raised ALTs).

Thomas

Thank you, Thomas. Here’s the link to the study I read from the Journal of Autoimmunity. There were also a couple of other studies in PubMed but I understand that these are only a select few cases and correlation doesn’t always equal to causation. I will try not to stress about it and will strongly consider a biopsy in 2022.

Happy holidays!

Rebecca

Hi @Rebecca,

Thanks for the link. Yeah, I think you’re right that it is a few select cases and, given that there have been almost 9 billion doses of the vaccine administered, we might expect there to be a higher number of cases if there was a strong causative effect. I think there will be some follow-up studies done to see if there is any real connection or that it is all just random chance, but it’ll take time.

On the practical side and mentioned in the article, SARS-CoV2 infection itself has been linked to inducing autoimmune diseases. Also those with autoimmune diseases have significantly worse clinical outcomes if they get COVID compared to those without (https://ard.bmj.com/content/80/3/384.abstract). So, despite the unknown possibility that the vaccine could induce autoimmunity, it’s probably still best to get the vaccine.

Cheers,
Thomas