Possible side-effects from antiviral therapy

Working out or exercising is the easy part. You just have to show up for an hour or two a day and just move your body, whether it’s lifting weights, walking or whatever to get off the chair.

The hard part is rest of the day, eating right or not eating at all. Food companies spend $$$$$ on getting the consumers addicted to their products. They have the best of the best working to make you buy and keep buying their processed foods.

Most people eat less than 20g of protein, while consuming 100g of processed carbs and sugars.

The crazy part is if we didn’t have hepatitis b, we wouldn’t have to worry about what our liver can take or not. Because the potential damage the virus can have on our liver, we have to keep our liver in top top shape.

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@NeptuneJ you are absolutely right. I have to remind myself that eating healthy and avoiding junk is another type of self control exercise that is more important than walking and weights I do. It’s tough but I am working on it. I am hoping to keep good eating habits that can help me in later years as well

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Hello, I just joined the group. But I have been reading the post for a while. I am very thankful for this group and all the posts!! I am 53 years old female from China, and am living in the US. I have been taking Vemlidy for eleven months now. I have rash developed all over my body since September. I have had a course of 10 mg prednisone. It helped itching, but more rash developed after the treatment. The skin biopsy results show that “A perivascular and interstitial infiltrate of lymphocytes, neutrophils, and eosinophils is accompanied by epidermal excoriation”. My primary care doctor suspects that the rash may be caused by drug reaction of vemlidy. I would like to know if anybody has experienced rash caused by Vemlidy. Is there a way to find out?
Thanks a lot!!

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Welcome to the forum, @mds8. Whether it is due to the Vemlidy or not is hard to tell as you have to think why it only came up in September while you have been taking the medication for 11 months. “Rash” is listed as a reported side-effect, but that does not automatically mean it is due to the vemlidy. I am not a dermatologist, so I’m not sure if that description matches the rash that is associated with this reaction. You may want to get a consult with a skin specialist to figure out what the cause might be.

It may be possible to test by taking another antiviral instead (e.g. ETV or TDF) to see if goes away, but you need to talk to your doctor about doing this first.

Hope this helps,
Thomas

Thomas,
Thank you so much for your help!! My hepatologist asked me to come to his clinic and to discuss about this issue. I will post what I find to the community.

mds8

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Hi @mds8, I agree with Thomas that a rash isn’t a common side effect of vemlidy, which I’ve been taking for 3 years. With that said, however, there is always the possibility and switching to viread for a month or so could be worthwhile to see if the rash disappears. I will never discount a rash again since my mother-in-law developed an extremely rare rash reaction to the common cholesterol drug lipitor (0.1% side effect). She saw 3 different dermatologists who all took skin biopsies with nothing specific found. Ultimately, her chiropractor suggested that it could be lipitor since it was her most recent new drug.

So, before you get more skin biopsies it could definitely be worth your time to change medications to see if the rash goes away - that is, assuming your doctor agrees! Thanks and look forward to hearing what you learn. Always, Joan

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I wouldn’t discount the side effect. What type of rash. Are they little red bumps and itchy. I read it could be a liver issue where when the liver is stressed it releases stuff into your body. Forgot what it was called.

Could also be something else. I get them when I get hot. Change your diet but sadly if it continues and you did all you can, I would switch medicine.

Sorry for your pain

Joan;
Thank you so much for the valuable insight!! I will discuss with my doctor about switching to viread for a month as suggested by Thomas and you. My rash is very bad, and has caused me great distress. I wouldn’t want anybody to experience it!
I do have a question about if switching to viread will work since both vemlidy and viread are tenofovir-based. Please forgive me for my lack of understanding of these two medications. What do you-all think if I switch to entecavir for a month? About 20 years ago, I did take some antiviral for Hep B for one year. I don’t remember the name of the medicine. It was probably lamivudine. Don’t know if entecavir will work.
Take care!!

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NetuneJ,
Thank you for your concerns! Yes, they are like hives, and I think heat and stress can also cause them. Mine covers large area, very itchy. They are supposed to be resolved in a few days or a couple of weeks. But Mine won’t go away. It has been almost eight weeks.
I hope we can find out what has caused them.

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Hi mds8,

As both Thomas and Joan stated, you will need to discuss this with your doctor; especially since you would have to get a change in prescription anyhow.

However, I did want to let you know that I started on Vemlidy and because I had so many adverse reactions for years, that within the past year my newest hepatologist changed me to entecavir for a few months and that didn’t help, so then she switched me to Viread and that didn’t help, so then she put me back on Vemlidy. So in my personal experience I know that it’s possible to run the gambit of antivirals. I am not sure if it is recommended or not but your doctor will decide that. Keep in mind though, that when they switch you like that, they are supposed to do a little extra monitoring with blood tests to make sure that your numbers don’t spike. Or so I was told and they had me do labs every month for many months.

As to the itching and rash, after I first started Vemlidy, I had a lot of red dots and itching but it was the first like 6 months I was ever on an antiviral. I do still get itching and some bumps once in awhile but it’s nothing like the constant that it was when I first started Vemlidy. As Johnny mentioned, I notice that it can also happen at times when I get too hot or sweaty and have exerted myself too much.

I feel for you and hope you can get rid of this because I remember how maddening it was when it was a constant thing day in and day out. After a red dot or bump would appear, it would take many months for them to go away, even when they stopped itching. My hepatologist at the time (who was different than the one I have now) explained it away as my body dealing with the toxicity of new medications that my liver was having difficulty filtering. I don’t know if it was the antiviral or not but most of those new medications, I had been on for months prior to starting Vemlidy.

It will be interesting to see what your results will be, so please keep us informed.

Best of luck,

Paul

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This is also possible and something you can talk to your health professional about. It might be contraindicated if your HBV is resistant to lamivudine though.

I am not sure if my HBV is resistant to lamivudine. Twenty years ago, I was put on lamivudine (maybe) for a year. It did decrease my virus level to undetectable. Then my doctor told me to stop because it didn’t help HBsAg loss ( that is my understanding). I hope my HBV is not resistant to entecavir. Is there any way to find out if my HBV is resistant to entecavir?
Many thanks!!
Take care!!

Paul,

Thank you so much for sharing your experience with me and community!! I am sorry that you had to change medicine so many times!! It must be nerve-racking! If I have to switch medication, I will ask about close monitoring. Twenty years ago, I took an antiviral for one year, and then stopped. My HBV virus rebounded from undetectable. But my other numbers were okay. I was much younger then, and my liver was able to handle the virus rebound. But now I am over 50, the condition of my liver is much worse, and I will need to be much careful about the virus spike. I will keep you-all informed.

Take care!!

Dear @mds8

From your description, it doesn’t sound like it would be resistant, but your doctor should be able to order a blood test where they sequence the virus and work out if it is resistant.

It is true that the antivirals (whether lamivudine, tenofovir or entecavir) will not induce HBsAg loss, but there are still benefits associated with them (including slowing down liver disease and lowering the risk of liver cancer).

TT

Dear Thomas,

Thank you so much for the information!! It is so kind of you to spend your precious time to help me! I will ask my doctor to do a blood test and find out if my HBV is resistant to entecavir. One of the reasons why I ask about entecavir is that if my rash is caused by drug reaction of Vemlidy, I can try to take either TDF or entecavir. My mom suffers from sever osteoporosis, and TDF may not be a good choice for me. Hope my doctor will find a good solution for me! Just like most of people in this community, I have been living with this disease for a long time, I pray for some type of cure soon!!

Best regards,

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I went to see my hepatologist today. He saw my rash and decided to change the medication to entecavir. I have been taking zyrtec and pepcid ac (Famotidine) for the rash. The rash is slowly improving. I asked my doctor if we can wait for a month and see if my rash will be gone before changing the medication. But he insisted on changing medicine. I looked up the list of side effects of entecavir, it also includes rash. I just don’t know what to do. I live in a rural state. There are very few doctors who have much experience in treating Hep B.
Any suggestions would be very much appreciated.
Thank you-all very much!!

Hi @mds8,

That’s great that you got some resolution out of this. I guess the point may be that you should not have to take anti-histamines long-term to deal with this rash if it is caused by the TAF. I would take your hepatologist’s advice in this instance and report any issues you have if you experience anything with the entecavir.

TT

Dear Thomas,

Thank you so much for your advice!!
I will give the entecavir a try.

Best regards,

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Hello everyone, I am on the vemlidy for 2 months now, and my alt is 280 and my ast is 120 in the most recent lab work, but however my viral load has dropped significantly, to 3000. Is that mean the vemlidy has cost the increase in my alt and ast, is that common? Has anyone experienced this? I read some articles online that this will happen to some people at the beginning of the treatment. Could anyone share their experiences with the treatment or provide some inputs ? Greatly appreciated.

Hi Alex, thanks for posting your question. Glad to hear that you’re on vemlidy, which is what I’ve been taking for the past 3 years as well. It would be helpful to know what your ALT and AST levels were BEFORE you started treatment? They seem high, but it’s not clear if they increased after you started vemlidy. If they did increase, have you spoken to your doctor about this? I’m not personally aware of how high these liver enyzmes can go after starting treatment, but that didn’t happen to me. But then my issue was a viral load in the hundreds of millions, so I was very happy to reach an undetectable level of virus. With that said, I’m really glad to hear that your viral load went down as well. Thanks for posting and any additional information you can provide would be helpful. Always, Joan

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