Side effects from Viread

I would like to thank everyone who participates in this community. Sharing information is the most important thing we can do for one another.

I have two questions. First, has anyone experienced terrible side effects from taking Viread (tenofovir disoproxil) and if so, what were they?

Second, has anyone had to quit working (quit their job) because of side effects from taking Viread?

I am about to take this drug and these are critical issues for me.

I would appreciate any answers anyone can give me.

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Hi @Learner,
Those are great questions. To your first question, I was on Viread for a couple of years and it did not take long for my doctor to notice some problems with my kidneys work up. Because of that we had to switch to Vemlidy. I think bone loss, lactic acid build up, and kidney problems have been the major issues associated with Viread.

Regarding your second question, I am yet to hear of anyone do that. I think some of us quit because of other issues and not from side effects of the antivirals. For example, I have been unable to work because I have bad chronic fatigue and muscular pains. Neither is a side effect from the medication but a separate condition/problem. You will be fine. Most of us on antivirals had anxiety and questions about starting treatment, but once you start you realize that it is not a big deal. It is just like taking medicine for other conditions. I was scared and concerned about starting treatment and a few days into it I was like wow this is not bad as I had imagined it was going to be.

Feel free to address any concerns you have with your provider. Beginning anything can be scary and nerve wracking at first but once you start things improves. I hope this is helpful. Best, Bansah1.

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Thank you so much for your answer. You are very kind to respond and I appreciate it very much.

Learner

~WRD0000.jpg

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Don’t mention. We are here to help and support each other. Interferon was used in the past and patients who used that treatment had various bad side effects. Luckily, Interferon is not among the medicines used as first line treatments here in the US. Vemlidy, Viread and Entecavir are the first line of treatment medicines.

Some patients have side effects as noted in my previous post but I don’t think it’s very bad compared to what I have heard from those patients who used Interferon.

While you are treatment, you will still be monitored. Therefore if there are issues your provider will pick it from your labs and also from you (that is if you notice any changes or experiences to report).

For example, I have been on Vemlidy for about 3 years now and I have noticed an uptick in my cholesterol level since then. I was able to see this from my labs since I started Vemlidy. It just kept going up and up till now. This happens to be a side effect of Vemlidy, so my primary care provider is monitoring it and if it persist then maybe I might have to take statins for it. I am unable to switch as I have been on the other 2 already. Other than the uptick in my cholesterol levels, I have not experienced anything negative. Each patients tolerance is going to be different hence the importance of monitoring.

Best, Bansah1.

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I’ve read somewhere that it’s not a side affect of Vemlidy (TAF), but that of Viread (TDF): TDF has a greater off-target effect and not just stops replication, but prevents cholesterol buildup to some extent. So when you switch to TAF, you no longer have that off-target effect and your cholesterol levels rise.

There is some evidence of a lipid-lowering effect of TDF according to the literature related to its use in HIV,24 and the manufacturer attributes these differences in lipid results in the included studies to the fact that TDF has lipid-lowering properties.

On the other hands, the article continues:

Thus, although TDF may lower LDL-C, it is also possible that TAF raises LDL-C. The mechanism for the LDL-lowering ability of TDF has not been elucidated, but it does appear to have an effect on lipids.

I wasn’t able to find a study which compares cholesterol levels in treatment naive patients who started on TDF vs patients starting on TAF.

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Hi @mantana,
Thanks for your message. Per the article you shared, TDF which is Viread has some Lipid-lowering properties but Vemlidy does not. In other words Viread will lower cholesterol (LDL) while TAF (Vemlidy ) will raise or increase it. I am confused about your point? That was exactly what I said in my message, that since I started taking Vemlidy I have seen an increase in my cholesterol (LDL) levels. That is exactly what the article you shared is saying. I was on TDF and could tell my cholesterol levels (LDL) were fine, but since I started Vemlidy, I can graph my lab results on my patient portal and I can see my cholesterol level (LDL) keeps going up with each lab work. Vemlidy will raise your cholesterol (LDL) levels while TDF will lower it. You might have misunderstood my statement. Thanks for the discussion.

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Thank you so much for answering my question. It is very kind of you and I appreciate it very much.

Learner

~WRD0000.jpg

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If I understand correctly, the current consensus is:

  1. According to some studies, switching from TDF to TAF increases cholesterol levels in majority of patients.

  2. However, it’s not clear why cholesterol levels increases after switching from TDF to TAF? Partial explanation is that TDF was suppressing cholesterol levels - so switching to an agent which no longer suppresses cholesterol levels will result in seeing cholesterol increase. However, it is unclear - at least I haven’t found a study - if:

a) TAF is neutral when it comes to cholesterol levels
b) TAF might increase cholesterol levels

I’ve personally started treatment on TAF / Vemlidy and did not have treatment with TDF / Viread before. My cholesterol levels are stable when I look before / during treatment with TAF. But I’m alone just an anecdotal evidence.

Hi @ montana,
Yes, you are correct about the consensus about these 2 medications. On the other hand, it is true that my observation could be considered as anecdotal evidence but I am not the only patient to observe this personally. There is empirical evidence on this. Gilead during their clinical trials observed this in about 6% of the participants.There are other studies that have looked into this and have concluded that yes they see these increases in LDL and triglycerides levels, but don’t understand why or what is leading to this. Lipid Changes After Switch From TDF to TAF in the OPERA Cohort: LDL Cholesterol and Triglycerides

, , , , , ,

Open Forum Infectious Diseases, Volume 9, Issue 1, January 2022, ofab621, https://doi.org/10.1093/ofid/ofab621

Published:

08 December 2021
is a link to one of those:

I was sharing this experience so other patients will be aware that this could happen and they should not panic when it does. If you remember I also stressed on the importance of continued monitoring and saying that patients will react differently to any of these antivirals. Not every patient on Vemlidy will experience this, but some patients will. This seems to be a fact, that some people will and others will not. There is no clear understanding why this is so. I hope this helps clarify things. Glad we both can agree that it is a problem but there is no clear understanding of why or how it is happening. Best, Bansah1.

Note: This has also been discussed back in August last here. Check under here:

No causation with vemlidy and cholesterol level for older women? under General discussion.

@mantana,
Just to add, I had a baseline level before taking both of these medicines. I am able to look back and see the differences over time under each medicine. Thanks, Bansah1

Key word Switch. It doesn’t mean (at least I didn’t see any controlled study - please correct me if there is any) that TAF is causing cholesterol rise. It could well mean that TDF was lowering cholesterol levels - and withdrawing TDF made cholesterol level rise.

Sure, you can read about this on Gilead(the maker of Vemlidy) website. They talk about this issue of cholesterol in their documentation from the clinical trials. This is something they recorded or observed in some patients in the controlled clinical trial studying these 2 antivirals. Thanks, Bansah1.

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Hi all

My Gastro switched me froM Entecavir to Vemlidy about a year ago. My viral load has been undetectable ever since but my cholesterol (especially my LDL) has gone up significantly.

I eat healthy, and workout and I’m worried about the increase in LDL. Are there things that worked for you guys to manage cholesterol while you are on Vemlidy?

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Hi Bhakkd, let me explain a bit about the type of food I eat. I must tell you that I’m from Spain and my diet is 100% Mediterranean.

I also had the same problem: high cholesterol, high triglycerides, and high LDL.

Breakfast: coffee with milk, wholemeal toast with a drizzle of olive oil, and kefir.

Lunches: vegetables with boiled potatoes 3 times a week, either chard, broccoli, or green beans. Although sometimes I also have them in the evening.

Meats: turkey, chicken, and pork, always grilled and generally once a week, although I usually have chicken and turkey twice.

With meals, I always have a good green salad with tomato, asparagus, fresh cheese, and nuts.

I eat nuts every day, raw walnuts and almonds, approximately what fits in the palm of your hand.

Fish: Also 3 times a week or more, always baked or grilled. Usually oily or white fish, or salmon.

Legumes: Also 3 times a week, lentils, chickpeas, or beans.

Desserts: seasonal fruit, whatever is in season: bananas, pears, apples, oranges, pomegranates, plums… but yes, fruit every day.

Dinners: Sometimes vegetables, a plain omelette, and accompanied by a natural yoghurt for dessert without added sugar.

All salads, vegetables, lunches, and dinners are dressed with virgin olive oil.

If I get hungry mid-morning, I usually eat a piece of fruit.

It’s a Mediterranean maintenance diet (because it’s sustainable over time).

It’s precisely why my cholesterol, triglycerides, and LDL have gone down.

It’s not a miracle diet; it’s regularity + quality + years.

Basically, I’m not on a diet; this is just how I eat.

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I will be stopping Vemlidy in a month or so once my prescription runs out. I will switch to Viread. I didn’t know about Vemlidy being a culprit for high cholesterol. When i looked back at my labs, it was a few months after i started on Vemlidy for the first time when i noticed my lipid panels shot up. In the last few years, my PCP and gastro questioned my diet/lifestyle and i told them it really hasnt changed much.

Should i be eating better and working out, sure but the fact of the matter is i didnt eat any worser. At one point my doctor wanted to put me on statin but i refused. I told her to give me 3 months to try and lower my cholesterol through dieting and working out. Well, i had my blood work done and the numbers didnt drop significantly. It was at this point when i learned about Vemlidy and cholestorol.

I plan on switching to Viread in April and getting my six month bloodwork again in June. It will be interesting to see if the numbers improve. I am switching off Vemlidy only because my insurance plan no longer covers it. I am worried about bone loss and potential kidney problem but we will monitor them and adjust accordingly if i experience or see a decline from my blood work result.

Hi @ Bhakkd

From your concerned about increasing in LDL cholesterol after taking Vemlidy(TAF) . I think that is a controversial issue about the side effects of TAF on cardiovascular events due to dyslipidemia.

Recently study about cardiovascular risk in CHB treated with TDF or TAF ( Hong H . et al : Clin Mol Hepatol 2024) showed that there were no clinical significant differences risk of cardiovascular events between patients treated with TDF and TAF.

In general, the risk of atherosclerotic cardiovascular disease (ASCVD) not only depends on LDL cholesterol levels but there are other factors eg. smoking, metabolic syndrome or insulin resistance which are related to increased in small density LDL particles, chronic low grade inflammation (measured by high sensitivity CRP) due to oxidative stress that causes injuries to the vessels wall and promote LDL particles especially small density to penetrate and deposit forming fatty streak or plaque.

Measurement of LDL cholesterol is the measure amount of cholesterol that carrying on low density lipoprotein (LDL) in the circulation and it may not be directly related to the occurrence of heart diseases.The more accurate is to measure numbers of LDL particles or apo B which is related closely to the risk of heart diseases.The higher the amount of apoB , the higher your risk of heart disease.TAF treatment resulting in only a slightly increase in LDL cholesterol levels in blood about 10 mg/dl . If we have healthy physical indexes and metabolic flexibility which assessed by BMI , waist circumference and no risk factors associated with metabolic syndrome eg. hypertension , diabetes, dyslipidemia (high triglycerides and low HDL) , we can then be confident that we have a very low risk of developing heart diseases even if our LDL cholesterol levels are higher than normal due to TAF treatment. Another option is to assess risk of heart disease by doing coronary artery calcium score(CAC score) which can measure amount of calcified plaque and subclinical ASCVD , if the test result is zero, it indicates that we have very low risk of ASCVD and there is no need to take lipid lowering drugs like statins.

Keep your liver and lifestyle healthy by eating healthy diet eg. Mediterranean diet as Luis mentioned, proper aerobic and muscle strength training exercises, good and adequate quality sleep with stress management. I hope this may help you.

chul_chan

Chulapong Chanta. MD. Pediatrics.

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Hi @dotbammer,

Just so you know and maybe this will allay your fears, the majority of people will not experience clinically significant bone loss or kidney issues. And there can be alternatives (e.g. baraclude) that you can switch to if this becomes an issue.

Thomas

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