How are you dealing with COVID?

Hi all,

Just wanted to check in with you all. How are you dealing with the COVID situation? Is it affecting your Hep B monitoring (if you have any)?

Here in my experience, even though it is almost completely under control in Sydney and Australia in general, people are still in the process of adopt the “New Normal”. Likely there are people who don’t want to go for check ups because they want to reduce contact.

Anyone have these concerns?

TT

Here in the USA, and in my part of the country, restaurants are at 50% capacity, stores require masks, and my work is telework until things get better. Many are still dying and more people are testing positive everyday.

Oh and schools are all virtual. I don’t know how Australia is but here most are taking it very serious and the rest wants freedom over government restrictions.

As for me with hep b, nothing really changed. I m more concerned about hep b by x1000 times than COVID-19.

If I get covid with my hep b, someone up there really has it out for me. Lol!

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I also live in the U.S. I was warned by my Primary and Specialists to be extra careful because of being at high risk due to CHB. I was able to avoid any Covid for 8 months. Then last month, I ended up with almost every symptom associated with Covid. I had to go to the ER and they told me that I absolutely had Covid… or pneumonia. Seriously, they said it exactly like that with a nice pause after they said Covid.

About 3 days later, I received the negative test for Covid. Phew! Right? Well, I still had most of the symptoms at this point and had calls into my primary and hepatologist. The odd thing I found is that the regular medical community (Non ER or hospital) was unprepared to take this seriously even after 8 months of Covid being prevalent. Both doctors wanted me to test for Covid again because they believed I had it regardless of the first test. They felt that I was tested too early? But yet, they did not know how to get me tested, neither of the doctors! I live in a highly populated area of California for God sakes!

I suffered about 2 more weeks before I finally got the second test and it also came back negative. By this time, a lot of the symptoms had gone away. Not much fever or body aches. Mostly wheezing and coughing and I had most of my taste and smell back. Today, I am much better and I think whatever I had is mostly gone.

I still don’t know what I had, if it was Covid and it just wasn’t being detected or pneumonia or some other virus. I had suggested to the doctors that it may be the switch of liver treatments. One week prior to all these symptoms happening, I had been switched from Vemlidy to Entecavir as I had also switched to a new hepatologist. The reason she switched me is because I had so many new conditions since I started Vemlidy about 3 years ago. When I first started Vemlidy, I had some major bad reactions from the beginning. I was bed-ridden for the first 3 months of starting Vemlidy. I had really bad flu-like symptoms and what seemed like brain damage. I lost vocabulary, memory, thought process and had a lot of unexplained emotional reactions (mostly depression like). After the first 3 months of this, it took me another 6 months of hard work to get a lot of my vocabulary back, which helped with my short-term memory loss. I still have some long-term memory loss, where I have no clue about things people will tell me that has happened in the past. Yet, doctors today, think I have good cognitive abilities and respond intelligently, so they aren’t worried about brain issues. Yet, I know the difference between how my brain used to function and how it seems that I am running at a fraction of what I used to.

So, I am confused as to what was wrong with me for those 3 weeks in November and I am even more confused as to how the U.S. is dealing with Covid. Oh and yes, Covid did affect the way I dealt with CHB. First off, doctor’s visits became virtual visits which aren’t near as beneficial or thorough as most in-person visits. Secondly, I did put off as much testing and physically going into hospitals, offices, clinics, labs, etc. I would wait until we had times of improvement in cases and deaths and they would lower the threat level.

I am curious as to your thoughts on all this Thomas, especially about the switch in liver treatment possibly causing Covid-like symptoms. Is that a possibility in your opinion? If not, then I sure wish I knew what the heck I had then, if it wasn’t Covid because my doctors were convinced it was. The ER acted like it was and gave me a steroid (which I warned them that I had CHB and they said that steroids were good for the liver? Really? For liver transplant patients maybe, but for CHB?) They also put me on a breathing treatment and took xrays of my lungs and did the Covid test. It was after the xrays that they told me I absolutely had Covid or pnewmonia. They also gave me prescriptions for an inhaler, cough meds with dextromethorphan (Most of the OTC meds with DM shows a liver warning, so I didn’t take any of the prescription DM), antibiotics and had me get a pulse oximeter. So, if I didn’t have Covid, then the ER over-reacted. If I did have Covid, then my doctors under-reacted… and still, although my symptoms are much better, I have no clue where I stand and what it was or is.

Sorry for the huge post.

-Paul

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Hi Johnny,

Yeah, a lot of those types of measures are taking place in Australia: capacity/space restrictions, recommended (but not mandatory) work from home and masks in indoor spaces (mandatory in some states, not others).

We’re really lucky here: 100% of the recent cases have been in or linked to people in hotel quarantine (mandatory 2 week quarantine for all people coming into the country). There has been very limited community spread and our health systems (state-based) have acted very quickly in response to positive cases. I think it’s the same everywhere about people taking it seriously and a vocal minority pressing for complete freedom (although the former is now waning because they are getting too comfortable and letting their guard down).

Stay safe!

Hi Paul,

Thanks for the story, that sounds really intense. I’m really glad you’re feeling better.

Really I’m not sure what happened here (perhaps some more experienced @HealthExperts or @ScienceExperts in this space could give their opinions).

I think it really depends on which tests you took to test for COVID. Many of the rapid antigen tests have pretty high false-negative rates (which mean you had COVID but the test says that you are negative). I would imagine if you really wanted to know, you could ask for a COVID antibody test.

I have not read anything about such an adverse response to Vemlidy/tenofovir or Entecavir or changing meds, but everyone’s body is different (which makes drug development really challenging!). I think given the circumstances and given this information, I would think it more likely that it was undiagnosed COVID, rather than the change in meds, but that’s just a guess.

I would recommend trying to maintain blood test monitoring (I know it’s hard at the moment and I understand you don’t want to risk it) so that you and your hepatologist has some idea of what might be going on during this time.

Re: steroids, I think if you need the ER, it’s way more important to deal with the short-term stuff (i.e. breathing) first. It’s true that they used to give steroids to treat Hep B long before there were nucs like entecavir available; it was the only thing they could give to stop the immune system from attacking the liver and causing liver failure. Things have moved on, and as long as you are still on nuc therapy, you should be OK (they do the same in HBV-positive transplant patients: they are put on steroids to stop rejection but maintain nucs to stop the spread of HBV infection in the liver).

Hope that addresses some of your concerns, Paul.

Stay safe!
Thomas

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As always, thanks much for your response and info Thomas! I am always at least a little more knowledgeable after you respond to people’s posts.

-Paul

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A post was merged into an existing topic: Just diagnosed?

Anybody here complete the both phases of the vaccine?

Soon the one shot by j&j is coming out. In my state we are on the 1 c of the vaccine phase. They say by April to July there should be a surplus of vaccines.

Not here in Australia yet. We only just had TGA (Australia’s FDA-equivalent) approval of the Pfizer vaccine. I think the roll out is expected in mid- to late-February, though there are reports of supply issues…

TT

Same in the US with not enough vaccines. Where I live, it’s police, firefighters, medical workers etc first, then it’s state government employees, teachers, 75 and older and so forth.

It’s getting there and America is about to reopen by I say may or June. Now sit in restaurant are opened

Hi Paul, I’ve never heard of the type of reaction you had from taking Vemlidy? Did your doctor believe your medical situation was related to the drug? And if so, did he or she report it to Gilead, the drug company that manufactures the drug? The company should always be notified for their information. With that said, I’m really glad to hear that you’re improving with a lot of effort!!

In regards, to Covid, I completely agree with Thomas that many of the rapid tests (and even the PCR tests) can have a lot of “false-negatives.” In fact, these tests are more likely to results in a false-negative than a positive test! The fact that you lost your sense of smell and taste is a key finding since that’s definitely correlated with Covid. Just read an interesting article in the sunday New York Times about this strange effect of Covid, and the researchers quoted say that is very unusual for a viral infection.

Finally, in regards to the steroids the ER wanted to put you on, I agree with Thomas that if you’re in the ER and they’ve diagnosed you have pneumonia, then the benefit of taking steroids outweighs any risk. And the TRUE risk of steroids is long-term use, not short term use like for pneumonia.

You always have very interesting posts! Thanks, Joan

Sorry for the last deleted post: it was off-topic.

I just received the first dose of the Pfizer vaccine, so yes, Chronic Hepatitis B is eligible for the current phase in California (March ‘21). I hope that relieves some stress for people.

It was a bit stressful at first, because my healthcare provider wrote this in February:

Thank you for your message. The state indicates that patients in the high risk category may be eligible to receive the vaccine starting March 15th. However, each medical group has leeway of vaccinating groups based on vaccine availability. At this time, we do not know when xxx will start vaccinating patients younger than 65.

Thankfully, Walgreens saw what chronic condition I had on the waiver and let me through.

Before then, we stayed inside and followed the guidelines. I tested negative twice for COVID-19, so I was very grateful for that. Let’s look forward to the future!

I agree TitanMoon that the way the vaccine roll-out has been in the US has been confusing and chaotic. In PA where I live people who were over 65 years were having trouble accessing vaccine - my 90 year old mother who lives in a retirement community (independent living, not yet assisted or nursing, though) just got her 1st dose of Covid vaccine last week!!! Another friend’s 88 year old mother who lives in her own is still waiting!!! The chronic conditions don’t seem to have mattered much these past few months in PA. But I’m glad that YOU were able to get your first vaccine . Fortunately I volunteer as a nurse in the free clinic at our local hospital, so was able to get my vaccinations completed in February. Even though, I’m very conscientious about wearing a mask (even doubling if high risk situation like the clinic) and social distancing. Just like most Americans, my husband and I haven’t eaten in a restaurant since last March - outside when it’s warm enough if the tables are far enough apart. We cannot wait until there’s herd immunity!!! Always, Joan

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Yes, it’s crazy! I was only able to get it because someone wrote on Reddit “Walgreens has appointments right now in your area!” I would have to drive 200 miles, otherwise. I am so grateful that my parents have both doses now. Hopefully, your friend’s mother gets it soon! :confounded:

Now in the United States, and in my state, vaccines are available to all.

Is it safe for chronic hepatitis b carriers. I am not on medication, so will this cause a possible spike in my hep b levels? Logic to my question is, if on medication for hepatitis b, then the meds can help control the level, but if not, would body just take on additional virus to fight off.

Possibly the immune system that is keeping the hepatitis b levels low, will now be allocated to the covid virus and then hepatitis b levels can spike causing to go on treatment. Is just imagination going wild maybe, but it’s a thought I guess

Anybody have any thoughts. Many I know are vaccinated but they most likely do not have CHB

Hi @NeptuneJ,

These are good questions! There is absolutely no evidence to suggest the vaccines are going to make your Hep B worse. To put your mind at ease, we also have not seen changes in people with Hep B getting vaccinations for other viral diseases (e.g. against chickenpox, rubella, flu…). Our bodies are pretty good at distinguishing one virus infection from another, so immune system cross-reactivity like this is fairly rare.

Cheers,
Thomas

Hi Neptune, the Hepatitis B Foundation’s Scientific and Medical Advisory Board published a formal statement about HBV and Covid-19 that is a useful resource for those patients concerned about the infection and/or vaccine. There are also links to other professional medical societies in the U.S. and Europe for additional information about the disease, the vaccine and recommendations. For the record, I received both doses of the Moderna vaccine in February and feel fine! I had only one day of body aches after the 2nd shot, but it was tolerable with regular doses of ibuprofen. Otherwise, I have not heard of any medical reason to NOT get the vaccine unless a person living with hep b is immune-compromised, in which case it would be important to check with one’s GP or liver specialist first before getting the vaccine. With that said, I live in the U.S. One final thing, I don’t know much about the Astra Zeneca vaccine and here in the U.S., the Johnson and Johnson vaccine approval and its use was just put on hold after there were reported cases of blood clots in 6 vaccine recipients. So the U.S. FDA is looking more closely into these cases before authorizing continued use. Thanks for asking and hopefully others can weigh in with either medical or scientific information (as well as any personal experiences). Always, Joan

Just got my vaccine. Got the mederna vaccine, first round. Got it in my right arm bc they recommend that I get the shot in my arm I use the most. I m suppose to drink lots and lots of water and move my arm around.

They warn me of possible aches and pains from the shot. They are keeping for 15 minutes after the shot for monitoring purpose???

Hoping it won’t effect my hep b in any ways. I was up in the air about coming in for the shot, but I was like do it for my kids and just came in and got the shot.

Oh, they asked about heart conditions, kidney disease, cancer, etc but nothing about chronic liver or hepatitis conditions.

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Congratulations @NeptuneJ! My colleagues tell me that the day after can hit pretty bad, but it’s still better than getting COVID. I’m still waiting to get mine, the vaccine roll-out is a bit less efficient than the US at the moment. Let’s see…

TT

Dear Neptune, very glad to hear that you’re protected from Covid!! If you and others who are interested in listening to an excellent B Heppy podcast from the Hepatitis B Foundation by their Medical Director Dr. Robert Gish about the Covid Vaccine and Hepatitis B, check it out now. Dr. Gish is an internationally renowned liver specialist who practices, teaches and consults with governments, particularly in Asia and SE Asia, about medical guidelines for the screening and management of HBV. Always, Joan