Viread vs Vemlidy side effects for me personally

Hello friends,

I wanted to share something I learned about the side effects of Vemlidy vs Viread.

After completing a Gilead drug study which included Viread+ Interferon, bakers yeast (yep) and other proprietary ingredients I was in rough shape but my viral load finally safe and at low levels. Remaining on Viread for a few years post drug study- I had pretty significant osteoporosis with some reduced kidney function as well. So we switched to Vemlidy. I had an adverse reaction to Vemlidy which caused intense spinal migraines, muscle wasting along either side of my spine & a slew of central nervous system problems I hadn’t previously had. It was intolerable enough to cease treatment and go back on Viread thinking I could somehow mitigate the bone loss through healthy diet and supplements but after a short while scans showed my osteoporosis getting too dangerous to remain on Viread. A silver lining here is that my PCP recommended a Reclast infusion which really helped. Like tremendously. They typically last for a year or more and solidify the strong bone you have remaining stopping the damage from worsening. I had two Reclast infusions spread out which helped and enable me to start gently working out with slow hatha yoga. I highly recommend if you’re in a similar position on Viread.

Getting back on Vemlidy the second time wasn’t as bad at first, no initial adverse reaction. However after 6 months of so I started getting the aforementioned neurological symptoms including the migraines but with temporary vision loss and changes in vision and balance. Also peripheral neuropathy and weird tingling in hands and feet and sharp zapping type pains in limps. For a time a thought I had MS because my CNS was so obviously compromised some how. So I went to a Nuero/ MS specialist and had the whole work up. I was then informed that I’m not suffering from MS but nervous system toxicity from treatment meds. She explained further that Vemlidy does cross the BBB and get into the CNS and can cause these exact side effects in some patients. She then explained how long term Vemlidy treatment can have an antioxidant toxicity and over time deplete vital nutrients that your body and CNS need to function properly. They recommended that I supplement Magnesium Oxide and take a B vitamin complex (especially B12 & B2). These are some of what get depleted and historically have helped migraine patients and patients with central nervous system issues.

I’m happy to say that while I still get some unpleasant side effects from Vemlidy, supplementing my Mag OX and my B12 and B2 have significantly cut down on side effects and have made Vemlidy more tolerable than before. Also vitamin D and a good probiotic have seemingly helped overall.

Hope this helps someone

Thanks for everyone who is part of this community I appreciate you all and hope everyone is fighting the good fight

-Ryan

Hi @rpfbanner17,

Thank you so much for sharing your story and experiences. So sorry it has been such a hard journey for you. I’m sure your management of the side-effects will help someone out there.

Thomas

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Thank you so much Thomas…for your kind words and for creating this space for us! I already feel more validated and more seen because of this space.

Many many sincere thanks :folded_hands:t3: Ryan

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Hi @rpfbanner17 , sorry to hear you’ve experienced so many side effects. Have you ever tried entecavir? It is another highly effective first-line treatment for hepatitis B that may be worth a try to see if you have fewer side effects from that one.

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Hello,

We did try Entecavir years ago after my first round of Viread. If my memory serves correctly I think it had tolerable side effects for me but it wasn’t able to keep me “undetectable” <20 viral load back then. Since that was my ultimate goal we tried both of the Tenofovir drugs (Viread & Vemlidy) instead. Both Viread and Vemlidy were predictably effective at viral suppression and I’ve been able to get to “undetectable” <20 viral load a few times. I’m almost back there now battling the remaining 300 or so remaining from my last minor flare up.

Thank you for your encouragement and support I appreciate it. I hope your journey is going well for you as well :slight_smile: