How can I get the treatment here in Nigeria?
Dear Sirbay,
I am based in Australia so it is difficult for me to know the situation in Nigeria. But, it is generally best if you go to a specialist liver doctor: they can tell you if antivirals can help you in your specific situation and which one is the best one based on your needs. It is also best to get regular monitoring so that you can see if your situation changes over time.
All the best,
Thomas
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Hi Sirbay, there are several groups working in Nigeria on hep B testing and education. If you email info@hepb.org one of the staff at the Hepatitis B Foundation can direct you to some of the groups in Nigeria. Unfortunately, I canāt tell you now where to go since I donāt have the information. Once you get information and hopefully get in touch with a group in Nigeria, please share that with us again on this forum so others can learn from your experience. Best wishes and come back!! Thanks, Joan
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Resistance to entecavir is very uncommon in people who have not previously received antiviral treatment for hepatitis B. In the big clinical trials it was seen in about 3% of patients. However in people who have previously failed treatment with older antivirals (e.g. lamivudine, telbivudine) the rate of resistance to entecavir is much higher (up to 50% or so). In that case an alternative treatment like tenofovir is recommended. Your specialist can guide you with that.
Resistance to tenofovir is extremely rare and essentially is not seen in clinical practice. It can be generated in the lab but I am aware of only one case report of tenofovir resistance in a human.
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How do you guys on treatment get you meds in quantity wise. 30 days, 60 days, 90 days? Seems like of risky of running out getting 30 day supply every months, 12 times a year, betting the pharmacy does not run out or shipping is not delayed. 60 and 90 days seems to make sense.
Also does that mean you have to see your doctor more to get prescriptions. Like every 30 to 90 days?
Just curious.
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Hi Neptune, I think you said youāre in the US? If so, then the amount of drug dispensed depends on what kind of insurance you have. My husbandās health and Rx plan includes a 90-day mail order pharmacy. Unfortunately my TAF is still āon patent,ā meaning itās not available as a generic drug (which are cheaper and easier to get). So I have to ārequestā it every 30 days, which is a drag. My husband gets his lipitor every 90 days like clockwork. No problems! Our old 90-day mail order prescription plan was a mess and often I would run out 4 or 5 days before the end of the month, and would have to take my drug every other day. So Iām glad to have a new plan where the only thing is that I have to respond to a text message asking me to confirm delivery of TAF. But still itās only 30 days!
I only see my hepatologist every 6 months (havenāt seen them yet for a year, though because of the pandemic!), and normally they send in a refill request after I see them. This year, I had to send an email to my hepatologist requesting a refill. Fortunately she answered immediately.
Hope this helps. Would be glad to hear about other peopleās experiences? Thanks, Joan
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Iām on Tenofovir (TDF) and get 2 months supply at a time. I always like to have at least 1 monthsā worth in reserve when I go order more to limit any stress regarding any shortage. It has worked out well so far.
TT
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Thanks guys for the info.
Itās stressful stuff.
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Hi Johnny,
I was on Vemlidy (TAF) and currently on Entecavir. Both prescriptions require my hepatologist to do a special authorization request from my insurance. The special authorization lasts 6 months or a year before they have to do it again. The doctor does a renewal for however many months the authorization is for. The pills are dispensed in 30ās. But I have it shipped each month from a Specialty pharmacy because for some reason thatās the process and I canāt get specialty prescriptions from a regular pharmacy.
On another note, I have a question. I was recently prescribed Xifaxin (Rifaximin) for hepatic encephalopathy. I was reading that it is an antibiotic and that the FDA has only approved it for IBS-D but it is used for a couple of other conditions.
The dosage is usually no more than 3 pills a day for 2 weeks. That is when used for IBS-D. Yet, my hepatologist did the prescription for a year.
My questions:
-
Does this antibiotic work differently in that you can take it continually?
-
Are there tests that should be done prior to being prescribed it?
-
If it doesnāt cure hepatic encephalopathy, is it safe to take it continuously if it doesnāt help what it was prescribed for?
Just wondering if anyone else has had experience with this drug, especially if it was prescribed for hepatic encephalopathy.
Thanks,
-Paul
Hi all,
It is upcoming important decision in my life. My story- I have acute Hep b-29 years ago. Then become - chronic carrier. I have been keeping the viral load under 26 for so many years. Last year -Sep HBV DNA- 13 400 UI/ml. December -6 400, Mid February- 7 200. ALAT/ASAT- always - normal in a range 15-17 U/l. Fibroscan- F0-1. Since my viral load is fluctuating and above 2000, I am measuring in a 3 month along with transaminases. We know that Fibroscan it is not so accurate in a low stage of fibrosis. Is there any who have been in my situation- I am not sure if I am taking the right decision and postponing the liver biopsy? Even if my viral load goes down with the time so who can guarantee me that during the increase of HBV DNA the virus did not start attacking the liver. I have red that people with normal enzymes are in a stage of cirrhosis. yes, when you do not have hepatocytes you cannot have inflammation. Do I playing in Russian roulette?
Second point- in Bulgaria will not be available TAF due to commercial issue. So my option is only tenofovir - Tenofovir disoproxil. For how long I can take this drug without any side effects.
And last I want to ask how you are dealing with deficits and medicaments. My Vit D is lower which is very common. My cholesterol level is raised a bit. I have thyreoidids of Hashimoto- autoimmune disease for which I am taking Euthyrox since 12 years.
Is anyone taking some supplements that can help detox of the liver or any supplements/ medications should be escape.
Maybe when you are in treatment then you can allowed yourself to take any additional medications. Just if anyone can share I would be grateful.
BR
Lili
Hi Lilli thank you for sharing your situation and history with us. Iāll start with the disclaimer that I am not a medical doctor. However, I am a knowledgeable nurse and patient who was diagnosed with chronic hepatitis B more than 30 years ago, so have become pretty informed about the related blood tests and fibroscan. There are some doctors who respond, so hopefully one of them will confirm and/or add further clarification to what Iām going to write.
So first of all, itās good that your liver enzymes are within the normal range, which generally means that your liver is not severely inflamed by the hep b virus. The higher your liver enzymes, the more active the virus is, thereby, causing inflammation. Not sure how long you have been taking tenofovir? Has it only been a few months? If itās itās been for a year, then Iām surprised your viral load is not below 2,000? And in regards to the fibroscan, if you had cirrhosis, then your score would be much higher than it currently is!! What a fibroscan might not be able to detect is the severity of cirrhosis, but it can certainly indicate if a patient has moved from mild fibrosis to cirrhosis. Also, Iām wondering why does your doctor want you to have a liver biopsy? There doesnāt seem to any indication from your blood tests or your fibroscan that you need one? Here in the U.S. liver biopsies are rare - most liver specialists us fibroscans, blood tests and ultrasound imaging to follow hep b patients.
As you probably know already, tenofovir can accelerate bone loss in women over 50 years, resulting in worsening osteoporosis. But I was on tenofovir for almost 10 years without any problems. Lots of other patients are fine with it as well. I only switched 2 years ago because I was developing severe osteoporosis. Fortunately, switching to TAF stopped the bone loss and my osteoporosis significantly reversed to a less severe level. Iām also taking calcium and vitamin D supplements to help with my bones and overall health. Most people are vitamin D deficient, so if youāre able to take them, then it would be helpful (I take vitamin D3 with a dose of 1000IU per day).
Finally, there are really no proven supplements or alternative therapies to detox the liver or improve liver health. There are lots of companies that try to make fake claims about their products, so you have to be very careful. If you do decide to take an herbal remedy or alternative therapy, however, then be sure to let your doctor know to avoid any complications with your prescribed drugs for hep b and hashimoto thyroid disease. There may be other folks on this forum who have had good experiences with alternative meds, so I donāt want to say you should never try them. You just want to be very careful and always let your doctor know if you take anything. Thanks for sharing your concerns and questions since we all learn from each other!! Always, Joan
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Hi all, just read this article from āContagion Liveā (March 29, 2021), which confirms what Iāve experienced since switching from tenofovir disoproxil (Tenofovir or TDF) to tenofovir alfenamide (TAF). Even though itās talking about HIV, the lab results can still apply to HBV.
Tenofovir Disoproxil Fumarate Linked to Less HIV Metabolic, BMI Risk than Tenofovir Alafenamide ā https://www.contagionlive.com/view/tenofovir-disoproxil-fumarate-less-hiv-metabolic-bmi-risk-tenofovir-alafenamide
Earlier there was a string of emails about fatty liver disease and chronic hep b. Since switching 2 years ago, Iāve been diagnosed with āmildā fatty liver disease even though Iām not obese or diabetic. Today, my cholesterol has increased above 220 and my triglycerides are through the roof (300). And my hepatologist (liver specialist) wants to put me on a statin drug to reduce my risk of a heart attack and stroke as a result of these elevated lab results. Ugh! So I switched from TDF because it was accelerating my osteoporosis. After 2 years on TAF, my bone mineral density scans show significant improvement, which is great. But now I have fatty liver disease. So itās a trade-off. Just wondering what experiences folks have had with statins and hep b?? Thanks and looking forward to any advice besides losing weight!! Iām trying since the pandemic, but itās not so easy. Always, Joan
The statistics were significant, but the actual changes were small, 1.7 kg increase for those on TAF versus 0.7 kg increase for those who stayed on TDF. Do both versions of Tenofovir cause weight gain, or was there something else going on?
I just switched to Vemlidy (TAF, correct?) from Viread (TDF?) about a month ago, right after getting excellent blood test results in terms of cholesterol (and all the liver enzymes and everything, yea!). I guess I can be my own guinea pig.
It is not fun, but helpful to know that there are trade offs. I am wondering why the study did not look at bone density loss, because that is what was scaring the beejeezies out of me with the Viread.
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Iāve been on Vemlidy since January 2018. In June 2020, my liver ultrasound report stated I had a mild fatty infiltration, which was something new. The ultrasounds of the years prior showed no fatty infiltration. My last lipid panel (Dec. 2020) showed an increase of cholesterol from 169 mg/dL to 198 mg/dL; my LDL has also increased: 64 mg/dL to 78mg/dL. My triglycerides is 44 mg/dL, which is within the range since 2018. Iāve written before about the increased score of steatosis of my Fibroscan, from 186 dB/m to 240 (2020 -2021), but my GI doctor didnāt say that I have the fatty liver disease probably because I was on the cusp. I havenāt gained any weight, which undulates between 103 lb and 106 lb. I thought the higher cholesterol level and CAP had to do with diet. But I didnāt eat any differently than in my pre-Vemlidy days, and everything else being equal. So the report sounds chillingly logical to me.
Has anybody observed similar outcomes with Vemlidy?
Thanks,
TM
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Hi Mark,
Welcome to the community, great to see you here.
Re: your questions, they are hard to answer as I cannot access the original paper. What probably has happened regarding your question about bone density loss is that this was likely something to do with more practical issues.
As bone density measurements arenāt really part of regular monitoring, clinicians would have had a harder time recruiting and convincing people to get multiple x-rays to participate in the trial. Here, blood tests (which are part of regular monitoring) were used, so didnāt require anything extra from patients. This makes it a lot easier (practically speaking) and cheaper to do the research for over 4000 participants.
Science in general (particularly in Hep B) is underfunded and scientists often have to make study design decisions based on cost rather than gaining the greatest amount of knowledgeā¦
Cheers,
Thomas
Hi TM,
Just to expand on Joanās post, there does seem to be a increase in serum lipids when changing from TDF to TAF. But importantly, there has not been a connection seen with increased rates of fatty liver disease yet. We simply donāt know.
There could be different reasons why there is this change:
- Maybe TAF affects absorption of fats
- Maybe TAF increases the secretion of LDLs, Cholesterol, etc out into the blood from the liver (meaning thereās less fat in the liver)
- Maybe TAF changes how the liver processes fats and sugars
- Maybe TAF is better at suppressing the virus, leaving more energy for the body to store away as fats (we know that people with Hep B are less likely to get fatty liver, so maybe if you suppress the virus well, you remove the reduction in fatty liver)
Basically, we donāt really know without further research. Itās a complex topic, but I think something that is worth pursuing.
Cheers,
Thomas
This is in response to Joanās post on TAF increasing LDLs and cholesterol. The article āTenofovir Disoproxil Fumarate Linked to Less HIV Metabolic, BMI Risk than Tenofovir Alafenamideā interests me a great deal, so I started reading up on the connection. Most articles I read confirm the causal connection. The good news is the increase is reversible (https://www.aidsmap.com/news/dec-2019/lipid-increases-after-switching-tdf-taf-are-reversible-when-treatment-changed-back). The not-so good news: who wants to go back to TDF? You asked about statins. This article https://www.aidsmap.com/news/may-2020/people-switching-tdf-taf-experience-rising-cholesterol-levels says, āIf [patients] were already on statins, however, this association totally disappeared: in fact, statin use seemed protective of any clinical worsening of lipid levels; people already on them were nearly 80% less likely to experience worsening lipids.ā My guess is if one goes on a statin, then the levels would drop. But will another drug be needed to reduce the side effects of the statin? So it goes. By the way, Gilead denies the causal link.
I have an appointment with my hepatologist in two weeks. Will find out about my lipid panel, which, alas, has increased after being on TAF for 18 months.
Best,
tm
Hi paul
What about if entacavir is just 10usd.
I was only on Entecavir about 3 months before my hepatologist switched me over to TDF(Tenofovir). I was having side-effects from Entecavir and the Xifaxin she put me on made me bed-ridden. So stopped the Xifaxin within a month. I think during the time I was on Entecavir, I remember the cost being around $10-$30 per month.
For some crazy reason, I have really bad reactions to all 3 liver meds and many other medications cause really bad side-effects. My body just canāt seem to handle many types of meds, yet others are tolerated. Wish they could figure out whatās going on.
After reading some recent posts, I donāt know if I should ask my hepatologist to keep me on TDF or switch me back to TAF. I am thinking TAF as I was on that for about 3 years and I didnāt have issues with cholesterol. I think I fear the bone density loss and kidney issues more. So I think I will go back to TAF. Would you agree Joan? If I keep an eye on the cholesterol levels; have them test for that every few months, if it stays down, then it would be the better option of TDF vs. TAF?
-Paul
Hi Joan, I saw your post about the statins medication and would like to share my experience with the group. I am taking statins med(10 mg) for two years now. Back to 2019, my cholesterol was 280, and triglycerides were very high; my endocrinologist suggested statins to reduce cholesterol/triglycerides to prevent heart attack. I was on 20 mg of stains for the first two months, and the cholesterol immediately drops to 180, then I was switched to 10mg of statins every other day. So far, so good.
I also had the Bone loss issue back to 2015; I thought it was due to entecavir medication. However, it was one of the parathyroids was out of wack. After removed it and I took Fosamax for two years. My osteoporosis reversed to osteopenia. I started weight-bearing exercise, do more walking, all it helps so far. I continue to take entecavir; this is year 11, I have no issue so far. However, my GI doctor looked at my ultrasound report last year and said I developed ācirrhosis.ā I was shock and depressed. I did not understand how can that be because all my lab is good. My ALT maintains low (14), undetectable DNA, fibroscan result is good. I decide to seek 2nd opinion and went to a famous Teaching hospital that has a Hepatitis specialist. The doctor ordered a CT scan of my liver and confirmed there is no ācirrhosis.ā what a relief. I will do another fibroscan this coming June and hope the result is within expectations. Take care,
Jo