Possible side-effects from antiviral therapy

Dear Alex,

I would agree with Joan’s comments and need some sort of background to see which direction your ALTs are going. It may be that you were prescribed antivirals because your ALTs were much higher and this has helped lower them. Or it may be that your doctors predicted your ALTs would increase (e.g. from an increase in viral load), so put you on treatment to respond to that and control it before it got too out of hand. It’s difficult to tell given the information here.

In any case, the viral loads are dropping, which is good. The antivirals themselves are not likely to increase ALTs. Instead, in most cases of HBV, they will decrease them.

Hope this helps,
Thomas

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hi Alex,
When I started Vimledy first time(2017), My ALT and AST levels got little up. My Dr told me it’s normal and we decided to continue treatment with blood tests monitoring every qtr. after 2-3 months, those levels started going down.
Good luck!

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Hi Joan,
Do you have any article or link which suggests that Vimledy can increase cholesterol?
I think I am experiencing same problem with my LDL levels.
It will be helpful if you can share more details on it if available.
Thank you!

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Hi @pradeepmlk, there’s an interesting 2018 article about TAF (Vemlidy) and increased cholesterol at Discussion - Clinical Review Report: Tenofovir Alafenamide (Vemlidy) - NCBI Bookshelf where you can read about it. There are probably newer articles (?) but I haven’t taken the time to look them up (sorry). Overall, though, my liver specialist is recommending that I start a statin to lower my cholesterol (236) and triglycerides (212, down from a high of 305) since I have been unable to lose 10% of my body weight. Ugh! So tough to lose the weight to see if it makes a difference. So I’m taking the easy way out and will agree to a statin at my next medical appointment if my levels are still high. I’m lazy and just want to live my life since generally I eat healthfully and exercise several times a week. But if you’re young (I"m turning 63 years soon) then it may be better for you to consider lifestyle changes to reduce your cholesterol? Anyhow, keep us posted! Thanks and always, Joan

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Hi Joan,
Thank you so much for your reply. I will review the article and get back to the community group if there is any clarification.
As of now attached are my levels
Age: 40+
My LDL levels are elevated and HDL is getting low. Though Total Cholesterol is not that bad at the moment.

But My concern is I do workout regularly, eat healthily.

I remember taking the below supplement helped me to control Cholesterol. But It was for the short term and I discontinued as Cholesterol was under control. It seems a Green Tea extract.

Nutrilite Cholesterol Health -**

** This is not any recommendation as I am not at all expert. Without Dr consultation, it can cause harm.

I will be reviewing this with my Dr early January and share my decision.

As of now fighting COVID19. I thought 2021 was over :wink: now my first priority is to recover from Covid

Wishing all you, community group members, and their families, Happy New year 2022.

May God bless all of you with happiness and good health.

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I just switched from vemlidy to entecavir about 2 months ago. I made the switch because of some side effects i kept having to deal with. These side effects disappear whenever i stop taking the medication and comes right back as soon as i start taking them again. When i switched to the entecavir, they disappeared for about a month but they’ve started to come back again. My doctor doesn’t know why or what to do for me. She said there’s no other treatment available for me to try. The side effects I’m dealing with are tingling, pins and needles, skin crawling or neuropathy type of sensation that seems to effect every part of my body. Any advice on what i can do or what type of doctor i can see to gets some relief. Im certain the medication causes it but i have to stick with the medication regardless. I’m worried that these issues may lead to nerve damage over time. Are these the only two medications out there?

Dear @anonymous19,

Viread (Tenofovir disaproxil) is also available and might be worth a try. There are others who have talked these sorts of issues in the forum (e.g. Titling feet and pain on the righ shoulder blade) but it was not conclusive as to if it was the antivirals really causing this or if there are other causes (in that thread, someone talked about these symptoms going away just by using an ergonomic chair, so each person’s context may be different).

I myself haven’t experienced this neuropathy on antivirals, so can’t really suggest anything. It might be worth looking for a nerve specialist, I’m not sure.

Thomas

Hello everyone,

I haven’t been active on the board for awhile but I’ve been keeping up with the messages and am very impressed by the empathy and support that can be found here. Thanks to all for sharing your stories, it’s so nice to know I"m not alone out there.

I wanted to see if anyone had every experienced elevated liver enzymes for no known reason while on Vemlidy. Mine have been consistently elevated for a year now (last tested in March at ALT 108 and AST 68). I’ve been tested extensively for another cause besides HBV but to no avail, so my doctor finally suggested I get a biopsy.

The results of the biopsy: “Sparse lobular lymphocytic inflammatory infiltrate with associated rare hepatocyte injury is identified. In addition, there are scattered sinusoidal and portal activated Kupffer cells. Fibrosis is not seen on a trichrome stain. With IHC stain, HbsAG demonstrates patchy positivity and HbcAG is negative.”

All that to say, no fibrosis and possibly a drug induced injury? I take vitamin d, magnesium citrate, and Vemlidy. My doctor, however, seems hesitant to blame Vemlidy since I’ve been on it for over 3 years with no issues until the past year. My HBV DNA has been non-detectable since I started Vemlidy and remains that way to this day. So now I need to decide whether I should try switching meds to possibly fix the ALT/AST elevation, or just not worry and stick with the devil I know (Vemlidy) being that my DNA is nondetectable and I feel fine.

Any thoughts? For now, I’m going to come off all supplements and retest in June.

Thanks!

Rebecca

Hi @Rebecca,

Great to hear from you again with an update on your difficult situation. The good thing seems to be that there’s no fibrosis and you’re not feeling any symptoms. I believe (I’ve looked at liver sections, but definitely am not a liver pathologist) that drug-induced injuries show up as distinct changes in the hepatocytes. If the report doesn’t include this, I wouldn’t be thinking drug-induced injury straight away and would go with the medical advice you’ve been given.

Hopefully the re-test in June gives some clarity to what’s happening.

Thomas

Thank you for your input, Thomas. It just seemed as if my doctor could go either way and wanted me to make the decision on whether to switch meds. He offered up the option of switching to Viread or even undergoing a complete therapy change to Entecavir. But then he also seemed okay with me sticking with Vemlidy and said even though he is leaning towards a drug injury, he’s reluctant to think it’s the Vemlidy since I was on it for 2 years without issues. It’s just very confusing, but I guess I understand his reluctance to be definitive in his advice since he has never seen this issue before. It’s never fun to be a doctor’s “first”! But luckily I am part of a clinical trial where they see many patients with HBV and that’s where I am getting retested in June. Maybe they will be able to offer a second opinion.

Thanks again,

Rebecca

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So which drug is the best, Entecavir, viread, or vemlidy? Is it the newest and the most expensive treatment or anti viral drugs that’s been around.

Does it matter? Is it better to start off with the old and move up to newer drugs if tye first line of treatment does not work or is it better to start off with the newest and then move down to the oldest if treatment does work or body won’t tolerate it

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Hi Rebecca and Neptune, so I just finished replying to two folks who were concerned about starting vemlidy because of the cost and what it would mean if they lost their jobs/insurance. So my response included the fact that Vemlidy is the newest drug on the market. It’s very similar to Viread, but only 25 mg rather than 300 mg. This makes the pill much, much smaller! But seriously, in general the feeling is that lower doses of any drug are better as long as they’re effective. So maybe that’s why docs are encouraging Vemlidy. Additionally, Viread is known to accelerate osteoporosis in those inclined to that condition (which is why I was switched to Vemlidy 3 years ago). But in general, all 3 drugs effectively lower the viral load and normalize liver enzymes. And in my experience, I’ve seen patients switched from one drug to another without any problems because they’re all the same class of drugs.

Hopefully Thomas can jump in here (or John Tavis and other experts) to correct me if I’m wrong. But I’m speaking as a layperson and patient, not a health expert. Not sure if this helps, but the bottom line is all 3 drugs have pros/cons and are equally effective in suppressing the hep b viral levels. Always, Joan

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I understand that these are all first-line treatments and that there hasn’t been any convincing evidence to show any real difference in efficacy or health outcomes. As far as I know they are all equal in their ability to suppress HBV at the doses provided.

TT

I agree with Thomas. They are all excellent drugs that are usually well tolerated, and I’ve never seen any evidence that one is superior to the others when starting therapy. As with any powerful drug, they can have side effects such as what Joan described, so it is important to see your doctor regularly even if you are feeling well. Joan’s comment that it is always better to have the lowest amount of drug in the body that has the desired therapeutic effect is very true. That reduces the chances of “off target” side effects, ie, ones that are caused by the drug hitting something other than HBV.

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Hi NeptuneJ:,

The reason for starting any of these oral antiviral therapies is that someone with HBV infection has reached a certain level of disease to warrant treatment according to current guidelines for the use of these medications. This usually means that there are signs that liver disease is progressing, usually detected by elevated levels of the transaminases ALT and AST in your blood (there can also be other factors that guide a physician to start these therapies). The goal of initiating any of these therapies is to reverse the liver dysfunction (normalize transaminases) and prevent any further progression of liver disease.

In this regards, as Thomas mentioned, there is very little to distinguish ETV, TDF and TAF from each other in terms of how well they work to achieve this goal however here is some additional information on each:

ETV (Baraclude)
Drug resistance is very rare except in patients who have developed resistance to an older oral antiviral called lamivudine.

TDF (Viread)
Tenofovir disoproxil fumarate. Also active against the HIV and widely used in combination treatment for HIV and HIV / HBV infections. HBV drug resistance is exceeding rare, even in patients who have developed resistance to older oral antivirals. ETV and TDF are comparable in antiviral response and long term prognosis (preventing the development of fibrosis, cirrhosis and hepatocellular carcinoma). In the general population the incidence of mild bone demineralization and kidney dysfunction is slightly elevated compared to ETV. As Joan said, this can be problematic in patients more at risk for these issues.

TAF (Vemlidy)
Tenofovir alafenamide. A 2nd generation prodrug of tenofovir (TDF is also a prodrug). TAF has a greater residence time in the liver and as such can achieve similar therapeutic levels of tenofovir in the liver with a lower dose of drug than TDF. So 25mg of TAF achieves the same liver concentration of tenofovir as 300mg TDF.
There are no differences in the antiviral responses between TDF and TAF but with TAF, slightly more people normalized their transaminases (45% with TAF vs 36% with TDF). In addition, bone demineralization is signficantly retarded (but not absent) and kidney dysfunction much less prevanent with TAF vs TDF.

For more technical information on TDF vs TAF you can look here.

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@availlant. Thank you for the information! It’s good to know there are options in medication and not having all hopes on the newest and expensive medication

Hi, I am about to start my treatment, and Viread seems to be the only drug my insurance covers, not Vemildy. I’ve read through the threads, so I have following questions:

  1. Will the Gilead copay coupon cover the out-of-pocket if your insurance doesn’t cover the drug?
  2. Can I sign up for the Gilead copay coupon myself, or does it have to be my doctor?
  3. My doctor keeps telling me Viread has no side effects, which is not true, according to my research. I don’t know why she keeps saying there’s no kidney failure or bone loss. What are the chances of those side effects?
  4. If there’s any side effects, how long do some of them persist, such as dizziness? Will they go away eventually?
  5. The doctor I mentioned above is a new doctor I am seeing. My old doctor has left the city, and he referred me to the current one. I am thinking about switching doctors cuz I don’t feel I am heard by her. Since I am about to start treatment, is it better to wait till the transition is over?

Many many thanks!!!

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hi @Joan_Block, my doctor is going to prescribe me Viread, cuz it’s less paperwork for her. She kept saying there is no boss loss side effect. I wonder what your osteoporosis symptoms were, and how it affected your life? I am asking my doctor to prescribe Vemlidy, but she kept saying my insurance won’t cover it, and doesn’t seem to want to try…

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Hi Sarah,

I am no expert but I see that many of your questions are opinion based. Since I deal with/dealt with these types of situations, I am going to give you the opinion of a layperson but one who has had a lot of experience with doctors and side effects and such.

First off, I am going to start with question 5. If you don’t feel comfortable with your doctor, especially with her expertise, listening skills, bedside manner, etc. find someone else if you are able. I suffered with one hepatologist for over 3 years until I finally got fed up enough to switch. So, it’s better to find one that you feel confident in right from the start, if that’s possible.

It’s not just dealing with a doctor that won’t listen to you, it could manifest into worse things later where you have side-effects and they dismiss them. I had one hepatologist that would just prescribe one med after another for side-effects and those meds had even worse side-effects that almost killed me. I would rather have a doctor with good bedside manner, that will listen to me, believe me and advocate for what is best for me but also acknowledge my life needs and treat me as a human and not a number than one that touts himself as high and mighty and knows it all but won’t listen or help with what’s important to YOU.

When it comes to 4, Almost all the doctors I have ever had, say that there are no side-effects or very minor side-effects. Then, when you look that drug up online, you find a whole novel about all the side-effects. I know this is a controversial thing to say but after starting Vemlidy 5 years ago, I had a list of bad reactions. Very serious bad reactions. Reactions that I never had issues with prior to starting Vemlidy. The doctors will mostly answer with, “Correlation isn’t causation.” So I suffered through brain damage so bad that I had to relearn vocabulary, fatigue and feeling so ill that I was bedridden for months, my entire G.I. tract was fried when prior I had an iron stomach, itching and red dots all over my body, and pain… so much pain. Doctors do not want to acknowledge these reactions as side-effects of the treatment even though I have had newer hepatologists that will acknowledge it as “my body having bad reactions to the treatment”, they will not call them side-effects of the treatment. I am not trying to scare you away from taking treatment. It is critical that you do take treatment and probably a large majority of patients have little to no side-effects from any of the 3 treatments. I just want to emphasize that I wish I had a better hepatologist when I first started treatment. I wish I had someone that would truly listen to me and not dismiss all the suffering I went through with another medication and another and another when each new medication would cause even more problems to the point that often times, I thought I was dying or going to die soon.

I’ll let @joan_block answer 1-3 for you as she has posted about these topics many times or anyone else for that matter.

Sorry, if I went in the wrong direction with my reply. My main point is that you advocate for yourself. If you don’t feel confident and comfortable with one doctor then you should probably listen to yourself and find another one as soon as possible. I have a G.P. that I would hope to never lose. She is not an expert in specialties and there are times that she will tell me she doesn’t have the answer. But I know she cares about me as a human being and she listens to me with respect and concern and I TRUST her. I wish I could get that same cohesion with all of my specialists.

I wish you the best Sarah, advocate for yourself, I am sure that any 3 of the treatments would be fine, although, personally I know that as a patient, that I feel a little more confident being on Vemlidy so as not to incur the potential issues with osteopenia/osteoporosis and kidney dysfunction. Hopefully Joan has good news for you to be able to get Vemlidy at a low expense. She has written other posts about it and I believe there is a website or something where you can apply for discount. Also, I don’t know if it’s your current doctor or if it’s truly your insurance provider, but Vemlidy usually isn’t on most accepted medication lists for most insurance companies. Your doctor has to do a pre-authorization evaluation to get the medication accepted. I am not saying this is the case in EVERY situation but I think for most. My insurance doesn’t originally cover Vemlidy. Every year, my hepatologist has to submit a pre-authorization in order for Vemlidy to be covered by insurance.

Hope any of this helps and again I am not trying to scare or even shy you away from treatment. Quite the opposite, I am proponent of starting treatment as soon as is indicated by your physician. I waited too long, until I already had cirrhosis and maybe that had an effect or part to play in how much damage was caused after starting treatment. Any 3 antivirals will most probably do the job and it is necessary that you do so if your doctor has so deemed. The reason I shared how much I suffered, is that I should have listened to my gut and tried to find someone better before starting the treatment, but hindsight is 20-20.

Sincerely,

Paul

Dear Sarah,

I am sorry to hear that you are feeling apprehensive about starting treatment. I would like to suggest that you consider the following:

  1. The fact that you are starting treatment means that the most important priority is your liver disease. This should be brought under control as quickly as possible so give you the best long term effects. Viread is an excellent medication for this.
  2. There has been a lot of discussion in this forum (and correctly so) about the potential side-effects of Viread on the bones and kidneys. However, if these effects do occur (they do not occur in everyone) they are most often mild enough that you do not notice them. Your doctor will monitor you for signs of these problems. Additionally, if signs of these side effects do occur, the frequency of Viread you receive can be reduced to effectively reverse these side effects while still being effective against your HBV infection (you should always start Viread with daily dosing).
  3. You should always assume that your doctor is acting in you best interests (this is usually the case). It may be that your doctor knows that both Viread and Vemlidy are equally effective in controlling your HBV infection, that you cannot afford Vemlidy and that side effects, should they occur, with Viread can be managed. You doctor may simply be encouraging you to start antiviral therapy as soon as possible (which is the most important priority) with the medication you can afford.

Best of luck!

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