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Returning to antivirals after remission period

Discussion in 'Your Living Room' started by Irish lady, Jan 12, 2018.

  1. Irish lady

    Irish lady New Member

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    Hi all, I'm interested to know if any of you who have been taking antivirals and found relief have taken a long break from them without symptoms returning?
    7 years ago I found complete relief from vertigo after 2 months of taking Famvir 750mg per day. I continued on this dose for several years before tapering down to 500mg per day. I then went completely medicine free (and vertigo free)for almost a year. My symptoms have started rushing back in quick and fast on the past few weeks so I have just started back on the Famvir 750mg per day.
    My question to you all is; should returning to antivirals after a break take as long to show improvement in symptoms or does your body recognize the drug and respond quicker the second time around? I am hoping it will not take two months to return to normality this time! Have any of you experienced this situation; stopping antivirals and restarting once symptoms resurface?
     
  2. scott tom

    scott tom Active Member

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    Unfortunately, this particular virus can resurface if you stop taking the AVs. Some anecdotal evidence indicates that it can be harder to suppress the second time around, which is why i personally will never stop taking the minimum dose.
     
  3. ckdk

    ckdk Member

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    Jan 8, 2017
    Scott, are still taking 3000mg lysine along with famvir as well? how is your tinnitus & hearing?

    thanks
     
  4. scott tom

    scott tom Active Member

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    Yes, i am. I have no symptoms remaining. Hearing has recovered fully.
     
  5. Irish lady

    Irish lady New Member

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    Dec 18, 2017
    Scott, you are very lucky, incredible that you recovered your hearing aswell! How long did it take before you started noticing improvement in your symptoms when you first started antivirals? What dose of Famvir did you start on and what dose are you on now?
     
  6. June-

    June- Well-Known Member

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    I was lucky to only need to take anti virals for less than a year. It has been almost nine years i have been off them. I was not completely cured after a year but the av’s did cure the distortion, tinnitus, hyoercucsis etc. It took several years for my hearing to be restored. That came in the next few years during which i took allergy treatments. I did take famvir for a month or two when i was havign a setback over those years and things got better.mi was never sure if it was the famvir that ended the setback or if it was timelimited in its own. But yes antivirals can and do restore hearing in many cases. I was told by myndoctor that that often related to how long standing the hearing loss was (mine was about 9months) and what frequency (low pitches come back better than high frequencies). Good luck. Try to do as much as you can to remove all kinds of stresses. They all add up.
     
  7. scott tom

    scott tom Active Member

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    I noticed positive change within weeks. It kept getting better for the past two years.

    I started on Valtrex at the max dose. I switched to Famvir recently and i now take a 500 mg maintenance dose along with 3000 mg of lysine.
     
  8. Pupper

    Pupper Active Member

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    Motion to change Scott's name to Aviator Vic in honor of his knowledge and support for all of us re. AVs.
     
  9. forevergrateful

    forevergrateful Member

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    I second that motion. He has been so very consistent with his involvement. Thank you. Scott.
     
  10. Irish lady

    Irish lady New Member

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    Dec 18, 2017
    Just wanted to leave a little update here for anyone who is interested or finds themselves in this position in the future. This may give you some hope.

    I am now in day 10 of restarting Famvir antivirals after a full year break. 8 years ago I started on antivirals and got complete relief from vertigo, dizziness, balance problems and brain fog. My doctor believes the reason my symptoms resurfaced now and accelerated at such a speed is because I am pregnant and pregnancy automatically lowers your immune system(to prevent your body rejecting the growing embryo). A lowered immune system allows the virus to come back out of its latent state and start replicating again! I had to wait until I was at least twelve weeks pregnant before starting back on my prescription(Famvir 750mg daily, not a very high dose) I do hope that I am not speaking too soon but I do believe my symptoms are already improving and have been since day 5. I have gone from having at least 3 vertigo attacks per week along with hours of daily dizziness to VERY mild dizziness that lasts less than an hour and just one minor attack of slow spinning in the past 6 days. The increased loudness of my tinnitus has not improved yet unfortunately. I do hope this trend continues and I can update you in a few more weeks with a full recovery! My doctor mentioned that often when returning to a medication you have previously used to fight a virus your body will recognize this and respond faster the second time around. I'm not sure if this is the case here but an interesting concept. I will update again in the coming weeks!
     
  11. teesdale

    teesdale Active Member

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    Irish lady, welcome back to the A/V world. Since you found relief with A/Vs initially I'm confident you will again find relief. Hopefully sooner rather than later.

    I started on 3g valacyclovir last June and except for the tinnitus (although much milder now) I have been symptom free since early July. My hearing has even improved. I dropped to 2g a few months ago and hopefully will eventually drop to 1g soon. I am also on 1g of L-Lysine twice daily on an empty stomach.

    I appreciate you sharing your story as it reinforces the fact that with antivirals it must remain a lifetime commitment hopefully at a low maintenance level.

    Good luck and continued good health.
     
  12. Rachel

    Rachel New Member

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    I also will never stop taking an anti-viral. I take 4500 mg of l-lysene. I was not as careful about taking the l-lysene and had two bad attacks. I do not know if my body recognized the pills or not. I haven’t had another attack in several weeks of taking my l-lysene on time and everyday.
     
  13. Irish lady

    Irish lady New Member

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    UPDATE:

    Day 20 of returning to antivirals(Famvir 750mg).
    I'M BACK!!!!!

    - no vertigo in past 13 days
    - no dizziness at all in past 10 days
    - tinnitus slightly reduced
    - hyper sensitive hearing gone(can't remember the name for this)

    I am so so thankful and thrilled to be able to say that antivirals have once again given me my life back. If anything they worked faster this time than when I first started on them 7/8 years ago! Albeit a slight decreases in my already dreadful hearing(in one ear only) I would say I am back to where I was before my symptoms reappeared!

    I intend to stay on a maintenance dose for quite a while!

    My doctor is concerned about drug resistance if I stay on Avs for too long. Has anyone else heard of or had this problem?
     
  14. Bonlyn

    Bonlyn Active Member

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    Miss Irish lady, I am so happy to hear that for you. It gives hope for the rest of us.

    On another note I am just wondering did you ever take betahistamine? I have recently come out of remission myself and just trying to process as many scenarios as I can!
     
  15. Mac

    Mac Active Member

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    This is great question. I am 2 months into full dose antivirals and wondering the same thing. Do they work forever? Or does the virus adjust? Should I alternate from valtrex to famvir every few months?
     
  16. ckdk

    ckdk Member

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    good to hear that.. I also have the same question regarding AV resistance. should we change between valacyclovir, acyclovir, famvir regularly?
     
  17. Lupo

    Lupo New Member

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    I too have the same question. My ENT said that antivirals do not have the same resistance issues seen in antibiotics, but after 2 years on acyclovir I suddenly developed a cold sore a few weeks ago (exact virus acyclovir was developed to fight) which I had never had before. Thankfully at this point no Meniere's symptoms have returned.
     
  18. Irish lady

    Irish lady New Member

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    I had never considered AV resistance until now. It scares me that they may not work forever as they are the only thing that has ever worked for me! I can say that I took the same AV (in a tapered down dose) for about 6 years straight with no reoccurrence of symptoms at all during that time.

    I wonder what is the best way to prevent resistance from happening or at least reduce the chances of this happening. I can tell my doctor really doesn't know a lot about long term AV use so would rather I was just off them completely!
     
  19. June-

    June- Well-Known Member

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    My approach has been that i have had infections in the past and probably will in the future but i do not take antibiotics continuously, i take them when i have a new one. I take antivirals when i have a flare up but not continuously once i got the initial relief. It has worked for me. I know many are different but some may be like me in this regard. Ten years now.
     
  20. Irish lady

    Irish lady New Member

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    Dec 18, 2017
    Yes Bonlyn, I have tried betahistamine(serc) and it made no difference to me whatsoever. I have also tried stemetil, diuretics and acupuncture. I did have a particularly aggressive case when I first started treatment options so I'm sure these work for some people but not in my case! I hope you find what works for you.
     

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