Goodmorning!
Just a brief background about me: I was born 56 years ago with an omphalocele, and most likely contracted the hepatitis B virus during birth. Both of my parents had the virus in the past, as shown by blood tests they had done seven years ago — both have antibodies. I became a chronic carrier.
The virus remained inactive until 2017. It suddenly flared up that year, which was discovered through my routine annual (and later quarterly) check-ups. In 2017, I started treatment with Entecavir, then Tenofovir, and later Vemlidy (Tenofovir alafenamide). From the very beginning of taking the medication, I began to experience joint and muscle pain, which has worsened over time.
Are there more people who have experienced similar side effects? I associate it with the medication, but could it also be due to some residual virus in the blood that remains undetectable? My blood is tested every six months, and the viral load has remained below 10 (therefore undetectable).
Thank you for reading, and hopefully someone recognizes this and has some tips.
Hi @Conny1968,
Welcome to the community, and sorry to hear you have been dealing with such pain. As someone who has lived with chronic pain for several years now, I empathize with you. It is not fun at all.
Some sites list joint pain as a side effect of Vemlidy. I guess this is different for each patient because I took Vemlidy for about 3-4 years and never experienced anything like that. Hepatitis B virus can also cause joint pain. There is some evidence of joint and muscle pain associated with hepatitis B.
Try a hot shower, salt baths using Epsom salt. Add some essential oils such as lavender, eucalyptus, etc., and soak for 15-30 minutes if you can tolerate it. It might provide some relief.
If not, is it possible to switch back to Entecavir or Tenofovir? I am unsure why you changed, but either could be an option if the joint and muscle pain gets worse.
I hope this helps and you feel better. Bansah1
Bonsoir,
Je prends l’entecavir depuis plus de 5 ans et j’ai egalement beaucoup de douleurs articulaires, musculaires, des picotements, brulures diffuses, grosse fatigue et le plus dure pour moi des acouphènes. Les médecins me parlent de fibromyalgie secondaire.
Ce n’est vraiment pas simple de savoir ce qui est lié à l’hépatite, au traitement ou autre chose…
C’est le parcours du combattant pour se faire entendre et surtout comprendre.
Bon courage.
Marie
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Thank you for your response. The pain started almost immediately after beginning tenofovir. For that reason, I switched to entecavir, but that caused my hair to fall out. Entecavir also didn’t improve the symptoms. After that, I tried Vemlidy, but the effect remained the same. That’s why I suspect a possible side effect from the active substance in all three medications.
Thank you for the tips.
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Thank you for your response, and I’m sorry to hear that you’re also experiencing so much discomfort.
Hi @Conny1968,
I’m sorry to hear about that. The active ingredients in Entecavir are different from those in Vemlidy and Viread, which have similarities. Have you seen an arthritis or rheumatism specialist? 9 months after I started antiviral treatment, everything was fine except my lower back, which bothered me. But I woke up one morning in August of 2016 with
bad neck pain, which I attributed at the time to either sleeping funny or a pillow issue. The pain remained, and then it started affecting my shoulders and traps. I tried everything and nothing helped. Sometime in 2018, it was diagnosed as a combination of chronic fatigue and fibromyalgia. In fibromyalgia, one’s pain sensors to the brain are constantly sending signals without stopping. The pain never goes away, but the level does vary. You might want to look into this, especially if the pain started immediately after beginning your treatment. There is some evidence of a link between HBV and this condition. I hope you can get some answers and relief from it. We need the antivirals, but we should not have to suffer from their side effects. Keep us posted. Bansah1
Hi @Marie_David,
I am sorry to hear you have been dealing with this as well. I started experiencing fatigue in 2013, which led to my diagnosis. Then, in 2016, the pain in my neck and shoulders started. Finally, it was diagnosed as fibromyalgia. I agree, it is challenging. I hope that at some point we find solutions to these issues. Let’s take it one day at a time. We have to try and adapt to the situation. Best, Bansah1
Bonjour,
Je continue à travailler a mi-temps et en télétravail mais c’est de plus en plus compliqué. Je souffre et je suis épuisée. Les acouphenes en plus c’est tres difficile…En ce qui concerne la fybromialigie il n’y a aucun traitement. Pour l’hepatite moi je suis obligée de continuer les antiviraux etat donné mon niveau d’antigene hbs élevé. Et pour les acouphènes aucun traitement non plus. J’ai envie de croire que des nouveautés vont arriver pour ses trois pathologies mais cela à l’air compliqué. Avec l’ IA peut-être. Je vis au joir le jour et je ne fais aucun projet. Bon courage à vous.
Marie
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J’ai oublié de vous demandez qu’est ce que votre médecin vous propose par rapport à la fybromialgie ? Est ce que il y a des periodes de calme ? Mon medecin m’a dit que c’était la double peine d’avoir ces deux maladies. Et que peut être guerir de l’hepatite reduirai mes symptomes mais pour l’instant ce n’est pas possible.
Merci à vous pour votre retour.
Marie
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Not really. I have been on some selected pain medications but none was helpful. Because I have HBV I had a limited option of pain medications that can be used. Physical therapy didn’t help either. I currently don’t take anything and I am managing it as best as I can since nothing helps long-term. I have heard that the symptoms quite down at some point, but that has not occurred in my case. Writing, tying or cutting stuff with a knife or just using my hand for an extended time increase the pain. These are simple tasks, but I struggle with it at times.
I am glad you are able to work. I have been unable to work for some years now due to my chronic fatigue and pain. My symptoms are unbearable and challenging to do anything meaningful to earn an income.
I agree, I hope the next round of treatments will help reduce the risk for these extra problems faced by some patients. We don’t need all these extra problems. Thanks, Bansah1