Possible side-effects from antiviral therapy

Who would test for kidneys function ? Hep B doctor or kidney Doctor? And what is dry sinus ? Does entecavir causes damage to the kidneys too?

Hi @nghia_vu, if you think you’re having trouble with side-effects from your medication, you should talk to your doctor about perhaps getting some help with it and they might be able to switch your medication to something else. You might also want to keep in mind if you’ve had big changes to your diet since you’ve started the medication too.

I’m not sure if it’s true that the kidney issues are irreversible, generally your blood results can return to normal if it is caught early and you switch medications. I have not heard about headaches and dry sinus with tdf treatments. Have you mentioned this to your doctor?

Kidney function tests can be ordered by general practitioners. Entecavir isn’t linked to affecting kidneys, but there is a low chance reported for tdf.

Hope this helps,
Thomas

Dear @nghia_vu, I agree with Thomas that you should check with your health care provider about the constipation that you’re experiencing with your new medication. But before switching, remember it can take awhile for your body to adjust to a medication. There are some non-medical ways to help relieve your constipation - drink a lot more water, eat more fiber (more fruits are good and vegetables like broccoli, cabbage, anything green and crunchy), and try to stay on a regular schedule as much as possible for your daily business! The key is more fluids and more fruit and vegetables. Fiber bulks up your bowel movements and fluids help make elimination easier. You can also Google other simple ideas on how to relieve constipation, which may be short-term as your body adjusts to the medication. Always, Joan

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How long does it usually take your body to adjust to a new medication? Like TAF for Entecavir.

I have been trying to eat more fruits and vegetables. Any recommendations on what fruits? Apple and orange seem to sweet.

@nghia_vu
I had a professor in pharmacy school joke about peeling the skin off apples and eating the skin and tossing the rest of the apple to make a point that the fiber in the skin was more beneficial. Some people find prunes helpful but that is even sweeter. I wonder if the skin of Asian persimmons might help. If not, hope you like veggies. You may want to take to your doctor to see if the constipation is severe enough to consider regular use of Miralax or Metamucil.

My kidney functioning went on slight decline after 4-5 years of TDF. I have switched to TAF for at least a year now and no change in baseline - still slightly impaired.
I am speaking from my personal experience.

The headaches and dry sinus - of course I followed with my doctor but nothing found.
Only thing I can explain is the use of HepB medication which I cannot wean off. When I started interferon before TDF, the headaches were so bad I couldn’t even stand up - the whole hospital knew. They could only offer painkillers.
Again, this is from my personal experience and understanding of my body.

Ha, ha … I like the story about peeling the apple and eating the peel and tossing the apple away! Actually the sweetness of the fruit isn’t related to the amount of fiber. Here’s a link to the Mayo Clinic’s High Fiber Foods, which includes fruits, vegetables, grains, legumes, nuts and seeds. As you can see, apples and oranges are good sources of fiber!!

The Mayo Clinic recommend for men to try to get as much as 30-38 grams/day; and women should get 21-25 grams/day. And also be sure to drink plenty of fluids, preferably lots water to make sure that your gut can keep moving all of that fiber all the way to the end!! Always, Joan

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Dear @souless, I hope that your kidney blood test results improve with time. Although it’s already been a year, I assume at least the kidney test results are not getting worse? In regards to your headaches after Interferon treatment, that was probably expected. Not sure why you still have them, though? There are a lot of reasons for headaches - everything from triggers like food, alcohol, level of pollution, etc. And of course from stress! I agree with Thomas that hep b and the antiviral treatments are not associated with headaches or dry eyes. I know a lot of people with dry eyes who do not have hep b and their solutions range from simple lubricating eye drops to prescription strength eye drops. From their experiences, I know dry eyes can be a impediment to daily life. So do follow-up with another doctor if you’re able. Always, Joan

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Hello everyone, I started reading recently and got a lot of valuable information on this forum. First about myself then my question. I used to take viread for years and then switched to vemlidy. The main side effect I saw over the last few years has been weight gain (+27lbs). This might have also contributed to some crazy GI issues like sudden acid reflux problems etc. have anyone seen something similar and if yes then how can one mitigated these?
Appreciate any help!

Welcome to the forum @Ztauqeer and glad to hear that the community is helping you. Some of the others have experienced some GI issues, if I recall correctly.

These issues sound like something to mention with your health provider to see what might be interacting or contributing to these issues. It’s very difficult to know what’s going on over the internet and you may be going through something completely different to others. Treatments need to be personalised to your own body, so if it is impacting your life you need to mitigate it together with your doctor.

Thomas

Thanks @ThomasTu , I have been working with doctors to tackle each thing but I gotta say no one wants to tackle these as related issues or put forth a plan. I have been addressing weight gain with diet but it’s been difficult given I don’t understand how Vemlidy is adding this weight. Doctor said it is not water weight but that doesn’t really help much. Limiting carbs help but it has other digestive consequences.

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Sorry to hear that @Ztauqeer.

Things like weight gain are really difficult to address because there’s no magic pill or diet that will work for everyone all the time. There are so many factors affecting it (diet, physical activity, sleep, mental health, gut microbiome, other metabolic conditions, genetics…) that it will almost necessarily be a long series of trials and experiments. What’s also important to know is that these measures take a long time to see change, so whatever modifications you implement need to be incorporated into your life for years, not just crash diets for a few weeks.

There is discussion here about it: Lifestyle changes, nutrition, and supplements for hep b

Hope that give some context.
Thomas

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Hi,

I totally relate with dealing with doctors and multiple issues and trying to get the doctors to work together. I currently have my primary through one facility and two hepatologists and a GI through another facility and then this past surgery was done by a different GI at a hospital. It takes a LOT of self-advocating to get them to work together. At times, I have to ‘educate’ them. In other words I have to suggest things that I have read online and a lot of things that I learn from this community in order to get the proper support that I need. Again, you often have to self-advocate and play the ‘game’, otherwise doctors will just let things go. They are so inundated and backed up with patients and insurance quotas and rules, that they aren’t able to keep up with it all.

Oh… and I am not sure Vemlidy is specifically the reason for weight gain or not generally at least. I think a lot of people can lose weight on it also. I lost over 35 pounds within a month when I first started it. Now, over 4 years later I have gained back about 15 pounds. I do have horrible GI issues which the doctors have been trying to figure out for years but I have more problems with being able to eat. I always have lots of Ensure for nutrients and this stuff called Liquid IV for hydration for when I have major GI flare-ups. This happens randomly a few times a week regardless of what I eat, what meds I am taking or what I do. This is why I think my doctors are perplexed, they can’t attribute the exact cause so that’s why I ask them, is it the gallstones? Is it the enlarged spleen? Is it the varices? Is it the gastritis? Is it the vasculitis?, etc. I have to keep trying to get each doctor to look at the whole picture and not just their specialty. The hepatologists want to focus on the liver and the GI focuses on the rest within the abdominal area. My primary focuses on the rest of the body. Getting all of them to figure things out together looking at everything is almost a job on its own and can be really fatiguing but hopefully they are getting somewhere finally, we will see.

Good luck,

Paul

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Hi @Ztauqeer, I agree with Paul that weight gain is not necessarily due to antivirals for hep b. Vemlidy, however, is known to sometimes increase a person’s cholesterol and triglycerides, which is what has happened to me. Having had normal cholesterol and lipid panels for the past decades, now my liver specialist wants to start me on a statin (lipitor) to help lower these values. I really don’t want to start another drug!! And statins are known to cause muscle weakness, a side effect I don’t want to experience. So back to your weight gain … as Thomas wrote, it’s hard to advise on this with so many variables. The best you can do is to reduce your intake (eat less) and increase your output (exercise such as walking is good). Ultimately, weight loss is related to the in and out! Always, Joan

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Thank you @PuallyHBV and @Joan_Block. I am managing my food intake and I exercise quite a bit. It is pretty obvious that my metabolism have surely slowed down with this med because I have always worked out so there is some benchmark to reference. I want to read about other people’s experience and may be learn a thing or two. The richest data about hep b side effects and possible remedies can come from our collective experiences that I would gladly weigh heavier than doctor’s repetitive stale suggestions. Self advocacy is all we got and that’s why I am glad to hear most people exercise it. I am very optimistic about a cure in near future and that hope keeps me pushing to stay fit.

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Hi Ztauqeer, very strangely I just saw this abstract article published Oct. 9 about Body weight gain in treated hepatitis B patients switching to TAF (vemlidy) in DocsNews Wire. Thomas probably has access to PubMed, which is where it was originally published. The bottom line is that switching TAF is known to result in weight gain. So you’re not crazy! But seriously, this confirms what you thought. But when I was switched from viread to vemlidy, I never noticed weight gain - just increased cholesterol and tryiglycerides. Anyhow, you’re not alone; however, the benefit vs. the weight gain has to be weighed so please don’t stop taking the medication without talking to your doctor. Thanks, Joan

ABSTRACT
BACKGROUND/PURPOSE: Switching to a tenofovir alafenamide (TAF)-containing regimen has been reported to be associated with body weight gain in human immunodeficiency virus-infected subjects. We aimed to investigate the body weight change and virological, hepatic, and renal outcomes of TAF switching among chronic hepatitis B (CHB) patients.

METHODS: This retrospective study included 121 CHB patients who were switched to TAF after >12 months of treatment with another nucleot(s)ide analog (NUC). All patients were monitored for 12 months.

RESULTS: The cohort was mostly Asian (96.7%) with a mean age of 55 years, 72% male, 14% cirrhosis, 21% HBeAg positive, and 75% with prior use of tenofovir disoproxil fumarate. At 12 months after TAF switching, their body weight significantly increased from 66.4 ± 11.8 to 67.8 ± 12.3 kg (p < 0.001), and 21.1% of the subjects had a ≥5% weight gain. Patients without diabetes or hypertension were more likely to have a body weight gain. Meanwhile, the complete viral suppression rate increased significantly from 89.3% to 96.2% (p = 0.016). The rate of alanine aminotransferase normalization also increased significantly from 71.1% to 87.6% (p < 0.001) by local criteria and from 58.7% to 70.2% (p = 0.029) by AASLD criteria. The mean eGFR (mL/min/1.73 m2) did not change (88.2 ± 18.8 vs. 87.2 ± 17.5, p = 0.28). However, for the subgroup with GFR <90 at TAF switching, there was a significant improvement in eGFR (72.9 ± 12.0 vs. 75.7 ± 14.2, p = 0.027).

CONCLUSION: In real-world NUC-experienced CHB patients, unexpected body weight gain was observed after TAF switching. The mechanism needs to be investigated in the future.

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Good catch, @Joan_Block.

Yes, this paper has just been accepted after peer review and can be located here: Body weight changes in treated hepatitis B patients switching to tenofovir alafenamide or here https://doi.org/10.1016/j.jfma.2021.09.009.

Their key results are showing that a fifth of people who switch over from TDF to TAF gain more than 5% body weight after a year. It’s interesting because the same thing has been seen in HIV patients, except their weight gain is much more immediate and not as large. This suggests there might be something with Hep B in particular that is special and causing this. It may also be different because they are looking mostly in Asian patients.

Interestingly, they found that people who were already obese or had diabetes were less likely to see weight gain. It’s a curious finding and I’m not sure how to interpret it.

Hope this simplifies things a bit.

TT

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Hello, thank you for doing your research @ Joan and Thomas! I’d like to add though that since I’m on Vemlidy, I have gained 5 lbs of 93 lbs normal weight for me for years. It seems like taking Vemlidy makes me want to eat more unhealthy food and of course I haven’t been up on my favorite diet lately so that doesn’t help even though I’ve been working out 3-4 times a week. I was told by my doctor though to keep my weight the way it was so now I have to work hard to lose 5 lbs.:blush:
It is also interesting that my HDL, LDL, Alkaline phosphate, BUN and AST are off to it’s normal range. I haven’t talked to my doctor about it and I’m not sure if it’s something I should be worrying about.

Thank you @Joan_Block and everyone else for their comments. I have been trying to working out extra to compensate for weight but it has been a tough going. I have always worked out especially because of my back pain that started as soon as I started taking hep b medications years ago. I just find this stubborn weight hard to melt down. I take some comfort knowing that I have a community to come to and talk about this. one thing I would say is that medical community never takes weight gain seriously when it seems like a by product of medication. Yes, pros are more than cons but a lot more happens with body when the weight scale is tipped. I will keep everyone update on my effort on managing this and may be we can find a better way to manage this among ourselves. For now exercise and carb control is my option.

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Hi Ztauqeer, you are definitely not alone in the quest to control weight gain. And yes, exercise and reducing carb intake are key to success. We should all ask what the secret Thomas has to staying so thin!! But seriously, I agree that doctors don’t take weight gain seriously unless one is obese. There is a lack of nutritional education in the training of doctors (as well as other health care providers), so we are left to learn pretty much on our own and from the advice of others (like on this forum). Good luck and don’t give up!! Keep us posted … always, Joan

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