Possible side-effects from antiviral therapy

Living With Hep B Treatment and Monitoring
122

Hi @SamanthaMech ,

The doctors are probably talking about hepatic encephalitis. This is where toxicity from your liver goes up to your brain or something like that. My doctors had me on some new ‘on-patent’ drug for my extreme brain fog called Xifaxin that is used for hepatic encephalitis almost two years ago. I had brain fog left over from brain damage I had after starting treatment and as that was getting better, I got hit with Covid twice and had brain fog with a renewed vigor each time. Now, I don’t know when I have brain fog if it’s from the brain damage 5 years ago, getting Covid twice in the past two years or just plain old age… probably a combination.

Hopefully @healthexperts can give you a more precise and informative answer than I did.

-Paul

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123

I read this and got a probiotic for my husband and it really has helped with his stomach pain and nausea while taking TDF.
Thank you so much for sharing this! :relaxed:

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124

Dear SamanthaMech,

The “brain fog” you are mentioning was most likely caused by his elevated bilirubin. This should disappear as his bilirubin levels continually return to normal.

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125

Since his Bili levels have come down, it has gotten much better. He is thinking like himself again. :relaxed:

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126

Dear SamanthaMech,

Great news.

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127

Dear @availlant @ThomasTu @Joan_Block and other experts here: I started TAF on Nov. 9 and got my first blood test results from Yesterday. It seems kidney function is impacted and AST/ALT levels increased from June 14 tests:
Creatinine: 1.21 (June 14 2022) → 1.35 (Nov. 28 2022)
eGFR: 69 (June 14 2022) → 60 (Nov. 28 2022)
AST: 17 (June 14 2022) → 27 (Nov. 28 2022)
ALT: 16 (June 14 2022) → 32 (Nov. 28 2022)
Albumin: 5.0 (June 14 2022) → 5.0 (Nov. 28 2022)
MCV: 98 (June 14 2022) → 99 (Nov. 28 2022)
MCH: 33.3 (June 14 2022) → 33.3 (Nov. 28 2022)

My questions to you all: how bad are these results? Should I switch antiviral med? I never had treatment before.

Thank you very much!

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128

I first started taking Vemlidy in 2019 but developed some kind of weird side effects such as foggy mind, depression, bone aches and severe night sweats! My doctor did not recommend this particular treatment to begin with because of my age, (which still hopes to have more kids). He thought it would be better for me to take this particular medication over Entecavir (his preference) until January of this year. I finally begged him to prescribed me Entecavir after an ongoing night sweats for months. Since after the switch, my viral load started to go down to zero, and my liver enzymes went back to normal. No more night sweats and or depression either, but I have to stop thinking about having another child. Entecavir is quite expensive, pharmacy is charging our insurance $1400 a month for my meds which is way too much though I am hoping to shop for a better price soon.

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Hi @Grithcel13 ,

If I remember correctly, you are not in the U.S. so this may not be pertinent to you. However, I will post it for anyone in the U.S. that is having issues with getting their antivirals on the cheap. I am not certain that this service does not work outside the U.S., so if someone needs the meds and wants to try this service and see if it works outside the U.S. and post an update, that would help other community members if it did work.

Vemlidy (TAF) is still on patent, so it is probably going to be expensive wherever you try to get it without insurance.

The monthly price is very inexpensive for people without insurance and might even be lower than some people’s prescription deductible or share of cost from insurance. This is the official website for Cost Plus Drugs created by the billionaire, Mark Cuban.

Entecavir:

https://www.costplusdrugs.com/medications/entecavir-0_5mg-tablet/

Tenofivir (TDF)

https://www.costplusdrugs.com/medications/tenofovirdisoproxilfumarate-300mg-tablet/

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130

Hello Paul, I live in the Northern part of the US by the Canadian Border. I have checked online for cheaper options for my Entecavir monthly supplies and found some that rangers between $200-500 a month which is still cheaper than paying $1400. I am currently waiting for my doctor to give me a new prescription letter to give to the new pharmacy that I am considering to buy me meds from. It is an online base pharmacy, and I am hoping it is legit. The website is called costplusdrug.com.

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131

I will definitely she switching pharmacy because they seem to be charging way higher than those websites you’ve mentioned on your comment. I’ve only used them because it is recommended by my doctor not knowing how much they’re charging my insurance until I called them few months ago. I very much appreciate your input. Thank you

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132

Hi @Grithcel13 ,

You did notice that all you need is the prescription from your doctor to sign up for Entecavir on that site and the monthly cost for .5mg is only $26.70 per month and $35.10 for a month supply of 1mg?

Most co-pays for insurance paid meds are $10-50, so those prices are really good, yes?

I am glad that you are in the U.S. so that you can take advantage of Cost Plus. I wonder if it works outside the U.S., that would be great but I doubt it.

-Paul

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133

Hi again Paully, yes I did noticed the requirements in order to signup. It is interesting that non at my doctors office returned my message last week when I asked them to write me a new prescription letter. I’ll call again today.
Unfortunately, since I found out that I had a super high viral loads in 2019, I signed up for Medicaid to cover the cost for my meds, lad work and ultrasound. The bad thing is, our property or assets will be under Estate Recovery after me and my spouse’s death. I am working to get them out of life right now so that’s why I am shopping for an affordable price for my meds.

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134

Hello @availlant @ThomasTu @Joan_Block or anyone: any thoughts or comments on my lab test results 3 weeks after taking Vemlidy (TAF) especially the impact to kidney function? Thank you all!

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135

Dear LetsCure,

It seems like you already had some kidney function issues prior to TAF. Your may want to investigate this.

It is quite unusual to see such rapid changes in GFR and creatinine so soon after the introduction of TAF. This medication has the lowest impact on kidney function of all approved drugs in this class. The very minor increase in ALT AST are not concerning.

The formal guidance for TAF is that no dose reduction of TAF is required with estimated creatinine clearance rate > 15ml per minute.

However in your case you may want to monitor your kidney function more frequently.

Good luck.

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137

@availlant Thank you very much, greatly appreciated! Is “estimated creatinine clearance rate” the same as eGFR? My doctor said I will have another lab in 4 weeks instead of 12 - hope that’s sufficient for monitoring.

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138

HI Let’s Cure,

Your doctor is absolutely doing the right thing in seeing you in another 4 weeks.

Estimated CrCl is not the same as eGFR but both measurements provide information on the filtration function of the kidney.

You can talk to your doctor about these measurements of kidney function and how they can relate to your dosing of TAF.

Best regards,

139

@availlant Thanks again! This is a wonderful community. I’ll post updates in about a month. Cheers!

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140

Hello,

Thank you for this forum.
I found out I was a HepB carrier when pregnant with my first child. Since then, I have been diligently visiting a liver specialist every 6 months. In 2019, my first doctor told me it was time to start the meds. I first started Vemlidy and the side effects were not pleasant (almost immediate vaginal yeast infection, sore knees, tingling hands/feet among other things). After, I tried ETV and although there were side effects and it was slightly more tolerable, I had an episode of fast heartbeat that made my doctor nervous and she told me to stop taking it. I tried each drug for about 7 days each. I feel like I am very sensitive to many things … it is so frustrating to no end.

My current liver specialist (both are good doctors) has been watching me carefully every 3-6 months and is telling me it is time. I know it is time too. I am 57 years old. Honestly, I feel like I am out of options and anxious. Praying a lot too. Any helpful comments/thoughts would be appreciated.

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Hi Faith1,

Can you tell us what your current test results are?

For virology: HBV DNA, HBsAg, HBeAg

For liver function: ALT bilrubin, albumin, INR and platelets?

Aside from the symptoms you experienced from TAF and ETV, how are you feeling physically?

Best regards,

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Hi @faith1 ,

Welcome to this community. Sorry to hear about your situation. The good news is that you have good doctors. They sound like they listen to you and qualify your issues. I too had many extreme side-effects when I first started treatment which was Vemlidy. The first couple of years was really bad, but a few of the side-effects went away and a few reduced in intensity. At that point, I had a new hepatologist that decided to have me try Entecavir and then TDF. Switching to either of those didn’t make any difference, so she put me back on Vemlidy.

We keep getting new members in this community over time that have some similar side-effects and some new ones. The funny thing is that the doctors will usually tell you there are little to no side-effects with these medications. I feel that the pharmaceutical companies do not use due diligence AFTER a medication is released to the public. I believe there are a lot more of us out there that suffer some pretty bad side-effects and it’s just swept under the rug or not even acknowledged whatsoever. I believe the statistics are way off and if true studies were done that the statistics on side-effects for medications would be way higher.

That being said, with HBV, we really don’t have an option. If the treatment works, then it is saving our lives. So, for those of us with side-effects (for whatever reason) have no option but to live with the side-effects.

I am not an expert, I am giving you this advice as a layperson and a peer that has experienced similar issue to yours. Since your doctors are sure you need to be on treatment, listen to them. When they tell you, you need to be on treatment, then you need to be. Don’t stop taking the meds, don’t hold off as long as you can. This can affect you negatively long term. I believe that was my problem, I waited too long to start treatment.

I think that you can learn to live with the side-effects and find other meds to help with certain things, make life changes to help with other issues, etc. Believe me, I don’t want to get too far into it but my side-effects were brain damage, constant flu like symptoms, extreme fatigue, loss of vocabulary, no appetite, lost over 35 pounds in a couple of months, and the worst part was that my whole digestive somehow got fried and ever since I have had to live with GI issues and constant pain. Pain is one of the worst issues I deal with to this day. That’s why I tell you that treatment is more important than the side-effects. Even with all that I have been through the past 5+ years since starting treatment, the only thing I would change is starting way earlier before I had cirrhosis. I know that the treatment is saving my life.

I was bad enough that my hepatologist at the time didn’t even believe that treatment would work on me and had me do the entire MELD score test for liver transplant and was ready to go that route if treatment didn’t work. So regardless of the harm the treatment caused, it worked and I am alive and without a transplant.

Please start your treatment and stay on it. If all of the different meds do pretty much the same to you, then I would try to stick with Vemlidy (since it’s better for your kidneys and bones) and see if you can make it 6 months to a year and see if your side-effects subside enough.

Again, welcome to the community. I’m glad you found us. Take a look around, there is plenty to read up on in the forums.

-Paul

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