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Antivirals - Brand or Generic? Relative Cost?

Discussion in 'Your Living Room' started by JohnL999, Oct 12, 2020.

  1. JohnL999

    JohnL999 Member

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    Tomorrow is my appointment with Dr. Mark Gacek in Mobile (Dr. Gacek's son). I am takng the 2 hour drive over from my home in the New Orleans area. As I explained in my initial post a few weeks ago, I am pretty positive I have cochlear hydrops in my left ear. No vertigo yet. Only had some mild lightheaded/slightly dizzy episodes so far; not sure if that is from the Triamterene actually. But I have pressure (sometimes really bad) and all the other symptoms.

    Anyway, I find this extremely distressing and disorienting. I can't imagine living with this (I'm 44 YO) PLUS vertigo attacks for the rest of my life. Therefore I am hitting this head on with everything I've got. I started JOH 3 weeks ago and have been following it religiously. Already lost 20 pounds from eating much less. Having to take Lysine on an empty stomach actually cuts out a lot of unnecessary snacking! My BP is better from reducing the salt. I have also been following Benny Hill's B vitamin regimen. Will look into upper cervical chiropractor if it comes to that.

    But from what I understand, the "Big Gun", so to speak is the antiviral drugs. I am willing to beg Dr. Gacek to prescribe them to me tomorrow. I have had fever blisters my whole life as well as chicken pox. I even had a mild case of shingles shortly before my first bout of aural fullness happened several years ago.

    Which type of antiviral works best? Is there a specific type to ask for? Is the name brand Valtrex better than the generic? From what I've been reading it seems like the Northstar brand is preferred and Mylan is to be avoided.

    I have United Healthcare. Can anyone fill me in on the relative cost $ of these medications? Is it worth it to pay for the brand name for at least the first high dosage period? I would be willing to pay a pretty penny if it works better!

    Not sure about anyone else's faith, but the distress of this situation has helped me to focus my attention back on what's truly important in life. I have started attending church again after many years, started praying and even started studying the Bible with my grandmother. I pray that God helps me to get through this so that I can be a better person and help others. Money, clothes, cars, etc means nothing when you are miserable and in distress 24 hours a day!
     
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  2. Pa Cowboy

    Pa Cowboy Member

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    Valtrex or the generic valacyclovir is what your looking for in my opinion.
    I've been taking valacyclovir for 18 months with excellent results.
     
  3. IvanA

    IvanA Active Member

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    When I looked for information I did find data that Valtrex worked better than generic valacyclovir and that generic valacyclovir worked better than acyclovir. But it was not high enough evidence and in fact in this forum there are cases of people that acyclovir did not work for them and they switched to valacyclovir and got results and vice versa. There was also a gene that did not work for the generic and the brand name, it sounds to me to have read several users in a thread here saying that acyclovir from a certain laboratory had not worked for any of them and that they had to clearly specify that they wanted the product of another specific laboratory.

    If your health insurance covers it, take Valtrex, the laboratory that has the original commercial patent always offers the best product. Even betahistine here in Europe worked better for me when I switched from generic to SERC brand.
     
  4. IvanA

    IvanA Active Member

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    If I did not have State Health and had to pay 100% of the medications as in the USA, I would first try acyclovir and if it works perfect. In case it does not work before discarding the antivirals completely, I would try Valtrex, even if it would be saving a few months to be able to buy the necessary sims to test it for 9 weeks.
     
  5. JohnL999

    JohnL999 Member

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    Saw Dr. Gacek in Mobile (the son) yesterday. I mentioned that he and his father are 'famous' on the message boards and he chuckled. He mentioned the book that was just published that has been mentioned here. He prescribed 800 mg Acycolvir 3x a day for a month. He will ascertain the dosage after a month to see if I am ready for a decrease or not. I asked whether it was preferable to get the brand name vs generic but he said the generic was fine and he liked to prevent his patients from wasting money unnecessarily. I had them filled at CVS and the brand says Carlsbad Tech. Most of the postings about brand issues seem to deal with valacylovir---not sure if there are issues with acyclovir brands or not. If anyone has experience with that, please let me know.

    I mentioned the horrible pressure I have been experiencing in my left ear and he recommended I come back next week for a myringotomy with a small tube. He stated this alone could help relieve pressure as well as give an easier route to administer steroid into the ear if necessary. He also wants me to have the VNG (I think that's what it's called) test for balance function. Thus far I have not had any issue with vertigo---only some mild light headedness, which could be the effect of the diuretic (it started the day after I began taking the medication).

    The pressure has not been constant and has actually relieved quite a bit over the last several days. Believe it or not, I actually felt 85% normal yesterday when I saw him. I am wondering if I should postpone the tube and only get that if the pressure comes back?

    Took my first acyclovir last night. Woke up this morning to a new lower pitch hum in my left ear I've never had before. Is that a sign this stuff is working already? I recall reading that several people had changes in their tinnitus at first when they started taking the antivirals.

    In a way I'm hopeful, but still very frightened and anxious! Trying to stay positive. Stinks that bedtime is really the only part of the day I look forward to at this point. I almost wish I could just be put to sleep for a month or two and let the antivirals do their job --- wake me up when it's over!
     
    Last edited: Oct 14, 2020
  6. Nathan

    Nathan Well-Known Member

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    Subsurface ocean, Europa
    Sometimes you just gotta do what you just gotta do.
     
  7. JohnL999

    JohnL999 Member

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    Is it normal for the sounds in your ear to change or get worse when starting Antivirals? I am on the 2nd day and woke up with a new sort of low pitched hum that I've never ever had before. Yesterday I was virtually tinnitus free. This is so distressing to me.....having bad thoughts and petrified. Don't know how I can handle this.

    If they do change how long does it last before it gets better?
     
  8. Donamo

    Donamo Active Member

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    There is one more anti-viral in use and that is Famvir, or famciclovir. It is the one I have used back in 2012 and onwards. Back then, a place in California, called House I think, a leading ear problem clinic that some on this board visited, was about to run a real trial, double blind I think, on antiviral therapy for Menieres and their med of choice was Famvir. Unfortunately, they couldn't get enough funding and the trial was cancelled. I do think that they were prescribing Famvir to their Menieres patients. At least that is what I remember.

    However, because that was the one they chose, that is the one I took and it is my opinion that it worked for me. Now that I am again fighting this monster, I will be taking famciclovir again.
     
  9. JohnL999

    JohnL999 Member

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    Well i was prescribed the acyclovir. I asked Dr. Gacek if brand name was preferable and he said the generic was fine. CVS filled it with Carlsbad brand. The first day after taking it was horrible. A new low hum and bad tinnitus. Worst day in a while. But today was almost normal. Just about absolutely now fullness at all and very low tinnitus all day, although this evening it has unfortunately gotten louder/faster. Was hoping to be able to go to sleep without all kinds of drowning out noise, but alas. I can only pray it continues to improve.
     
  10. JohnL999

    JohnL999 Member

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    Update so far - six days in on Acyclovir.

    Took my first pill last Tuesday evening after my appointment. The next day was one of the worst ever. New low tone hum in my left ear and just felt terrible all day. The next few days were much better. Felt best I had since before this mess all started. Almost zero pressure and very little tinnitus.

    On Friday had follow up with regular ENT close to home. Had an audio test that showed some improvement over the prior test. He suggested steroid injection to try to improve the hearing further and help with other symptoms. So we proceeded with the injection. Felt weird but not painful or too bad. The weekend was great! Felt just about normal again. Again no pressure and almost zero tinnitus.

    On Monday still felt pretty good. I think I made a mistake and ate a little too much salty food. I had a few moments of mild lightheadedness and felt a little pressure in the ear. I got very tired in the evening and went to bed early.

    This morning as I was waking up to get ready for work, my ear started ringing loudly. Took half a valium and went back to sleep after emailing my boss. Woke up a few hours later and the ringing is gone although I can tell i don't feel great and still a bit 'off'. There is still a residual tone lingering in my ear.

    I guess maybe I was expecting too much too fast. It definitely seems like the antivirals are working, but I guess a week is certainly not enough time. Hopefully this setback will be minor and short and the improvement will continue. I will definitely be much more careful about the salt.

    Can anyone else that had antiviral success chime in and talk about how their recovery timeline?
     
  11. JohnL999

    JohnL999 Member

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    I know JonBubo you're right probably getting ahead of myself. But it was so amazing to feel 'normal' again! I didn't want that feeling to go away. The hardest part is getting out of bed in the morning, never knowing what the day is going to be like. I don't see how people go to work with this condition, and I have a relatively mild case.
     
  12. Nathan

    Nathan Well-Known Member

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    Subsurface ocean, Europa
    Hmm, mmm, never mind.
     
  13. Pa Cowboy

    Pa Cowboy Member

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    JohnL999, everyone is probably different but here's how it went for me with antivirals.
    At day 3 the fullness in my bad ear was relieved rather dramatically, this allowed my hearing to get better. Was vertigo free for 3 weeks but then it returned. During the next 6 months my vertigo spells slowly got less intense till they finally stopped and my last vertigo episode was on October 1st 2019. During that 6 month period I still had vertigo episodes about every week to 10 days. Been pretty much symptom free for over 1 year now.
    It could just be remission but I continue to feel better every month.
     
  14. Donamo

    Donamo Active Member

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    My results were similar to PA Cowboy, but PA Cowboy, I suggest you don't make the same mistake I did. I thought I was cured and let my guard down. I'm not sure how many really symptom free years I had, maybe 4? But 2020, being the beast of a year that it is, "I'm baaaaack!" :)
     
  15. Pa Cowboy

    Pa Cowboy Member

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    Donamo, after reading stories just like yours I am concerned that MD could return at any time, that's why I continue to take valacyclovir, along with the JOH regime. I've quit coffee, alcohol and the salt shaker forever.
    I'm too scared to stop with any of these and promise to not let my guard down.
     
  16. Donamo

    Donamo Active Member

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    Good stuff Cowboy. Don't forget to stay away from heavy Arginine like most nuts and protein powders. I think it was the nuts and wife baking with Almond Flour etc and stress of some normal family conflict and the anxiety of steering our life around Covid that did me in. For me, it's the adding up of triggers that gets me, one or two is ok, five is MD territory.

    I think I'm getting better now, off of all nuts and derivatives, back on AVs. Family conflict never seems to go away so need to control those triggers that I can, and let the other ones do what they will do.
     
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  17. JohnL999

    JohnL999 Member

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    Day 8 of Acyclovir.

    UGHHHH was pretty much fine all day today. Some mild hissing tinnitus which I've had for years. Actually told my coworker i felt pretty great this afternoon. Looking forward to stringing some good days together maybe. No pressure at all. All of a sudden on the way home from work my ear starts a loud weird ringing making me sound like I'm underwater. This has happened many times to me and usually tapers off after an hour or two or so, but sometimes it makes me have a bad day the day after. Does this happen to anyone else? It is very scary and I hate it more than any other aspect of this crap. The only thing I can do is take a benzo and try to sleep it off. For some reason it usually happens at the end of the day thankfully. I don't know if I've ever seen anyone else describe this phenomenon. At the worst days it was happening up to 3 or 4 times a day. Thankfully that hasn't happened in weeks. I always feel like more damage is being done to my hearing when this happens and its so scary. I HATE IT.

    I do have to say I strung together 4 great days so far on the antiviral and I haven't had much of any bad fullness at all. So why this crap still?

    Maybe this is the virus's last salvo before shutting the f down.
     
  18. JohnL999

    JohnL999 Member

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    I took my valium last night and slept a solid 12 hours.

    Woke up this morning to an hours worth of ringing that finally was subsiding and now a few hours later its happening again..... I know our weather is changing slightly as we've been sunny and dry for a while and there's some rain coming. Perhaps that's causing it.

    One positive thing I can say is that I have had greatly reduced fullness since starting the antivirals. Usually these 'ringing' episodes are associated with a lot of fullness. Also the ringing this morning and that is happening now is not as severe as the one last night that was making my voice sound underwater and making my voice sound almost robotic for a short time.

    I have also noticed since starting the antivirals I have had very little to no regular tinnitus. Yesterday was the first day I had some moderate hissing that wasn't too bad.

    Still trying to be patient but wish I could just go back to working in the office and feel normal. Its like even on days where I feel totally fine all day I don't know if something will come out of nowhere like it did yesterday.

    Still praying to the Lord that these medicines will help to alleviate these horrible symptoms and suppress this virus.
     
  19. tmcmahon2

    tmcmahon2 Member

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    The tinnitus will vary regardless, in my experience. It gets better over time, if what you're taking is working, but some days it's louder and some days it's not. Some days I can't tell it's there and some days I wake up and wonder what the hell is going on.
     
  20. JohnL999

    JohnL999 Member

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    This is absolutely ridiculous....woke up and my ear is still all screwed up. Feel like the 'one hour ringing session' is about to start again and is this going to happen all day again? All this is going on with absolutely no pressure. I'm really wondering if I should forgo the 2nd steroid injection I'm supposed to have today. I seem to remember neither the oral nor the first steroid injections stopped this from happening before. It is very hard to make it through the day like this. So sad and dejected.

    This is not what I would call regular tinnitus.
     

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