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First Cidofovir Infusion Done!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ema, May 20, 2013.

  1. Tristen

    Tristen Senior Member

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    I'm very interested and hope that you share your progress too. Also, I hope both of you continue to feel free to ask me questions on my experience with this tx.
  2. Tristen

    Tristen Senior Member

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    Thanks rebar :)
  3. SOC

    SOC Back to work (easy, part-time work)

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    :( It's so frustrating when even our specialists won't work with the serious meds that actually work with this illness. Not that long ago it was almost impossible to get Valcyte. I won't say it's easy now, but a lot more of our docs are prescribing it than were 5 years ago.
    snowathlete, vli and heapsreal like this.
  4. vli

    vli

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    I totally agree that we live in very depressing times.
    Gray Lady likes this.
  5. vli

    vli

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    Ema just wondering if u've experienced this/or even ever had this problem in the first place:
    I think i've noticed that my heart stuff (palpitations, shortness of breath, etc) on waking seemed to have gone worse since the infusion. I say I think because i'm not sure if i'd just had it on other days too but gotten too used to it, as i've definitely had this a long time now, and just noticing it more somehow just like i noticed it happening more distinctly while on ampligen last year. Not much I can do i find except to take a few more Klonopin, have never found anything else that can ameliorate this.

    v
  6. Ema

    Ema Senior Member

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    I don't really have those symptoms generally but I do notice more of a pounding heart and feeling a little like I can't get a good breath especially the night after the infusion. It's a little disconcerting but I always hope it means that something is happening that will lead somewhere better.

    Ema
  7. vli

    vli

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    the same for me!!
  8. Ema

    Ema Senior Member

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    Third one done!

    Fewer side effects this time from either the cidofovir or the probenecid. Possibly I'm also less stressed about the trip too now that I know what to expect.

    Also got some good news that I will be able to do every other one in Indy if I can find a local doctor willing to follow the protocol and write the order. I think my LLMD will help but fingers crossed. It would be a BIG help to do them locally!

    Dr Lerner also shared with me that he has received a grant from the state of MI to do a study so that is great news as well. Hopefully that will mean more people will be able to get the treatment if they want to.

    Ema
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  9. SOC

    SOC Back to work (easy, part-time work)

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    Wonderful news, Ema! It will be so much easier to do them locally and not have to make that long drive every other week. Keep us posted on how the cidovir is working for you.

    What infections are being treated with the cidovir and probenecid?

    Oops, never mind, I figured it out, I bet --- cidovir for CMV and probenecid to avoid nephrotoxicity from the cidovir, right?
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Ema, whats the plan when u finish the cidofovir? Will u go on another av like valtrex/famvir to keep viruses supressed?
  11. Ema

    Ema Senior Member

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    I'm taking 4g/day of Valtrex concurrently with the cidofovir so I assume I will stay on that for some period of time.

    Maybe the dosage will be reduced if my viral titers ever decide to come down?

    Ema
    heapsreal likes this.
  12. Ema

    Ema Senior Member

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    I *think* that the cidofovir gets at all 3 viruses - the EBV, CMV and HHV6 but I could be mistaken about that.

    The probenecid somehow protects the kidneys and potentiates the cidofovir in the system so it stays around longer. I'm not sure exactly how this works because those seem like totally opposite functions!

    Ema
    heapsreal and SOC like this.
  13. Tristen

    Tristen Senior Member

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    I don't think the Probenecid protects the kidneys. At least not it's primary function......that's what all the NS and hydration is for. I believe the Probenecid just prevents the kidneys from excreting the Vistide as quickly, and therefore holding blood levels longer. Vistide is metabolized in the kidneys, and this process may be slowed as well. Whatever it's function, it's great that your tolerating it so far. I developed a severe allergy to the Probenecid about 6 months in and just finished out the year with Vistide alone.
  14. Ema

    Ema Senior Member

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    From antimicrobe.org:

    "Probenecid and prehydration helps to provide renal protection. Tubular secretion of cidofovir is blocked by probenecid, leading to less accumulation in renal tubular cells, faster elimination of the drug from the kidney, and overall decreased exposure of the kidney to the drug."
    Tristen likes this.
  15. vli

    vli

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    Just want to say had my third infusion ytd (1 on 11th jun, 1 on 18th jun and 1 on 2nd jul). have felt nothing as yet but welcome questions if anyone has any..
    ukxmrv, Tristen, Sushi and 2 others like this.
  16. vli

    vli

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    Fourth one done. Questions welcome
    ukxmrv likes this.
  17. Ema

    Ema Senior Member

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    I just got back from #5. So far nothing yet but I remain hopeful and happy that my body appears to be dealing with it well enough.

    I heard that the Valtrex was a max of 6-9 months which surprised me. I always thought antivirals were at least a year long proposition.

    Ema
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  18. SOC

    SOC Back to work (easy, part-time work)

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    Do you mean a max of 6-9 months before you see any effect? There's quite a long stretch from when you first start to feel some improvement to when you've get the most improvement you can from the antiviral.

    My guess would be that if you take Valtrex 6-9 months without any effect, it's not going to work for you, but if you do see a positive effect in that time, you might need to take it for many more months to knock down the virus as much as possible.

    Lots of people (relatively speaking), not just ME/CFS patients, take Valtrex for many years to keep herpesviruses suppressed. I don't think there's any 6-9 month safety limit on it, or anything like that.
    heapsreal likes this.
  19. Ema

    Ema Senior Member

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    SOC

    No, Lerner said the max treatment length for Valtrex was 6-9 months. Obviously I'm going to have to ask him about this when I go back in two weeks as it makes no sense.

    Maybe it is just at the 4g/day dose? That is a lot higher than most people take long term.

    Ema
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  20. SOC

    SOC Back to work (easy, part-time work)

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    Maybe max length of treatment for Valcyte is 6-9 months? I know he's done longer Valcyte, but maybe this is a change based on his experience since...?

    I'll be interested to hear was he says.

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