Possible side-effects from antiviral therapy

Thanks so much, Andrew!! This is very helpful to know!!

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Thanks so much for sharing Paul! Sorry to hear what happened to you. I hope you are feeling much better now.

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Hi Sarah, so first of all, change doctors now before starting therapy! Unless youā€™re in acute liver failure right now, then you have time to find a doctor who listens to you and in whom you have confidence. Once you start treatment, itā€™s important to have a doctor you trust. Honestly, not all doctors take the time OR even have the knowledge to answer your questions about the different treatment options. Sad but true, and my two kids are doctors! So itā€™s not like I hate doctors. I love them, I need them, but after 30 years of living with hep b, I agree with Paul that there are good ones and there are also mediocre ones ā€¦ or at least ones that donā€™t do a good job of listening.

In terms of the Gilead Vemlidy coupon program, I think you can go online and register yourself. But Iā€™m not sure since my doctorā€™s nurse handled it (yes, Iā€™m lucky to have a good hepatologist with a very supportive staff). I do not think that the program pays your OOP (out of pocket) expenses, just the co-pay. The maximum I think is $5,000 for the program so if you donā€™t have insurance, you could easily reach this number in a few months!

I agree with Andrew V. that all drugs have side effects. Even aspirin could kill you! With that said, some side effects are rare or at least uncommon. In regards to Viread, there is a known potential effect on your kidneys (uncommon and can be easily monitored with blood tests and reversed by stopping the drug) and bone density (more common but depending on your age, the benefit of lower cost to risk could be an important factor). For myself, I was on Viread for almost 5 years and it certainly exacerbated my bone loss. Once I moved from osteopenia to osteoporosis, my doctor switched me to Vemlidy. But again, Iā€™m 63 years old so osteoporosis was an expected condition for me (Iā€™m asian, petite which predisposes me to osteoporosis). Now as many of you know, the Vemdidy has caused my cholesterol and triglycerides to increase enough that I finally had to start a statin drug.

So again, it comes down to risk/cost vs. benefit. If youā€™re young, then the risk of bone less is a lot less so having a less expensive drug like Viread could be helpful. Both drugs are highly effective! The bottom line is to reduce your viral load to reduce your risk of progressing to more serious liver disease. However you get there depends on your age, other medical conditions besides having hep b, your insurance and financial status, and your doctorā€™s opinion who ideally understands the complete picture of your situation. Hope this helps and keep us posted! Always, Joan

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I donā€™t mean to keep asking, but are vemlidy and viread the only or the best options of medication to treat hepatitis b? Are the older medication like not recommended

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Hi Neptune, technically Viread (tenofovir disoproxil fumarate TDF) and Baraclude (entecavir) are considered the first line drugs. Both are off-patent, meaning theyā€™re available as generics. This makes them a lot cheaper! Vemlidy (tenofovir alafenamide TAF) is similar to Viread or TDF, but newer and not available as a generic. Itā€™s a new drug in that itā€™s a lower dosage (25 mg vs. 300 mg for Viread), which is always good when taking any drug.

As several of us have posted before, all 3 drugs do the same job ā€“ lower hep b viral loads! All are effective and with minimal side effects. So itā€™s really a matter of oneā€™s age, medical condition (e.g. do you have a kidney issue in addition to your hep b, etc.), and insurance/financial situation. Also, what your doctor believes is best for your individual situation. But this should a discusssion, not an edict!! Hope this helps a bit. Always, Joan

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Hi Neptune,

Joan has actually hit on the most important point. Interactions with your doctor should be a discussion, not an edict.

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Thanks, Joan and everyoneā€™s insight and encouragement. I switched to a new doctor, and she really listens and takes the different factors of my life and job into the consideration of which medication I should start with, and she says sheā€™ll try to get a special authorization for me with Vemlidy. I am glad I switched doctor after listening to you all.

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So glad to hear that you switched and are happy with the new doctor! Always trust your instincts and expect respect from your providers (and others in your life, too). Keep us posted. Always, Joan

Hi @HopeForCure

welcome to Hep B community.

i for one personally went through same situation your going through, the interesting thing would be i optioned to control my diet and lifestyle, it maybe stressful at times, but i just had to pull it in to make the most out of the stress.

currently am not on any treatment, just because i have no access to any Liver specialist in my country. so i optioned to lifestyle at its been going great for 3 years after being diagnosed with chronic Hep B. eating more vegetables, fruits and water with less sugar, at times meat but not often, am just keeping in mind foods that would burden the liver to process longer and slower are what i try to avoid.

I donā€™t know if covid19 would worsen liver enzymes like ALT and AST, i do hope our fellow colleagues who have better knowledge might enlighten us.

once again welcome to the community.

Hi to everyone!

I really appreciate the hard work behind this community and all the subject topics which are really helpful for us who are HBV infected.

I was first diagnosed in 2010 with HBV and told that I am an ā€™ healthy carrier ā€™ and nothing to worry about.
My mother died 9 years ago because of complications related to HBV, HDV and HCV. She suffered a lot, back then in our country (Moldova) there werenā€™t any of the nowadays antivirals which would help her to deal with the infections.

In spring 2020 I became ill and for nearly 6 months I wasnā€™t diagnosed and tried many different medications but didnā€™t help, until I was diagnosed with HBV and high viral load.
Then my new life started.
I was enrolled in a trial, then in a second and 9 months ago I started taking TDF which helped my a lot in reducing DNA to undetectable and feeling better.

8 weeks ago I started a third trial. Combined medications of TDF, AB-739 and Pegasys.

Here I come to the question about Possible side effects of TDF or AB-729.

About 2 weeks ago I started to a have a ā€˜strangeā€™ dry cough which is ā€˜strongā€™ but not often. It may happen once or twice a week.
I wonder if this dry cough is or not related to any of these two medications.
I have to mention that I havenā€™t started yet the Pegasys.

Also I experience sometimes mood changes which might or not be related to the work (this period of time I am busier than usual and I feel like 24 hours are not enough for a day :relaxed:).

I am sorry If I bored someone with my long text but hopefully there is some who might answer to my wondering.

Thank you :gift_heart:

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Dear Ecky,

I would first say that participating in a clinical trial is a good way to get access to new medications which have the potential to achieve functional cure. It can also be a bit stressful but remember you are being followed very carefully by the investigators in this study. Their first priority is your health and well being.

You mentioned that you have not yet started Pegasys however the informed consent document you signed should have contained detailed information on side effects to expect from all of the medications you will be taking in the trial.

In rare cases, long term TDF can cause mild alterations in bone density and kidney function. These can be managed with changing the frequency that you take your TDF from once daily to every other day.

Mild fatigue is a common side effect with Pegasys - try to do the best you can to eat and sleep well. Pegasys is an immunotherapy and part of the ā€œimmunostimulationā€ will also feel like flu like symptoms (which are also caused by increased immune function).

Depression and mood changes can also be affected by Pegasys but can also be due to other stressors in your life.

AB-729 belongs to a class of drugs called siRNA (or synthetic interfering ribonucleic acid). All medications of this class have the potential to cause low level inflammation of the upper respiratory tract (lungs, trachea and throat). Increased rates of upper respiratory tract infections have been reported for many siRNA drugs. Given that you are taking an siRNA medication, the persistent dry cough should be investigated as a potential side effect of AB-729.

Hope this helps.

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Dear @availlant, thank you for making time to answer my questions, it helps me to understand more about the medications Iā€™m taking :hugs:

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I have had stomach pain for some times, never attributed it to the antiviral. Only due to recently stopped taking it for a while and then resume, did I realized it was the cause.

Apparently this is one of the most common side effect of the drug. The hospital only give me stomach acid reducing drugs for it, which works but themselves having many side effects.

Since tenofovir is a life long drug, I wonder how other people are dealing with its side effects?

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In my case, I donā€™t think Tenofovir causing the stomach pain. I had problem with stomach pain in 4 months before I was diagnosed with hep B. At the same time I got treatment with Tenofovir, my doctor gave me Omeprazole for my stomach. About 3 months later, I stopped Omeprazole and started taking probiotic that help digest food and itā€™s over-the-counter in US. For about 6 months, I thought I got rid of the stomach problem, so I stopped taking probiotic and a month later the pain came back so I have to take probiotic again and up until now.
I donā€™t know if someone else has stomach problem while taking Tenofovir, but it is not my case.
Instead of prescription drug, try to take probiotics like ā€œProbiotic 10ā€ or Align. Hope it will help.

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Thanks for sharing. Iā€™m glad you found something that work for you.
Iā€™m very sure mine is from tenofovir, unfortunately, as it stopped when I stopped taking the drug. I never tried probiotics supplement, but I do frequently eat yogurt. They do seem to help for a short time, which in my case is likely just placebo. I do rather take placebo over nothing.

Hi @apatient,

Good question. I have been taking tenofovir for many years and donā€™t have any issues with any stomach pain. Iā€™m not sure when you are taking your pills, but maybe experiment with the timing in relation to food? Maybe you could see if things change if you take your pill before, with, or after a meal?

Otherwise, it might be worth seeing if there are other issues, like gastritis/stomach ulcers that are causing your pain.

Hope this helps,
Thomas

Hello everyone, iā€™m 26 years old and started taking medication few months ago. It seems like i need to take it for the rest of my life. I just wondering if you are taking medication like me. How long have you been on it? I jut read all of the risks/side affect if taken the drug for a long time, it scares me so much.

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Iā€™m taking the pill for the past 2 years. Donā€™t see any side effects!

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My husband just started the TDF antiviral and has a lot of nausea. He also currently has jaundice so I am unsure which or if both are causing the nausea? He also has VERY intense itching? Is it ok to give him pepto bismol to help his stomach?

My husband has only been taking TDF for less than a week now. The nausea is still there, but less vomiting. He was prescribed a medication for the intense itching caused by the jaundice. The Dr cleared him to use Pepto for his stomach when needed.
I have been reading this thread because it mentioned ā€œbrain fogā€. Yesterday was the first time my husband mentioned it. He said he just couldnā€™t remember anything from the day? I was warned by the Drs to watch out for confusion and such, but this didnā€™t seem like what they mentioned to me because he was completely able to articulate what he meant? Could this brain fog just be a temp side effect because he is new to the antiviral and his levels are so high and he is jaundice?

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