A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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FAMVIR

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by cb2, Jul 15, 2015.

  1. cb2

    cb2 Senior Member

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    Hi
    thanks to the group here I have switched to Famvir.. i am almost at the end of my first 2 weeks on 500mg. On saturday i will increase to 500mg 2x a day. so far so good.

    I am still considering if i am brave enough to go through with a trial of IV igg.
    my most recent Igenix test came back and it my lyme numbers look worse than they did in 2010.. maybe i got reinfected.

    i started with a new dr for Lyme that takes medicare- and he seems to know about the viruses too. he is a long drive away.. but my only option for lyme at this point. as i can't afford the cash pay LLMD's
    thanks for the support!
    c
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    People would kill to get IVig. I've been fighting for months to get it. If you can do it I would. I'd ask for SCIV Which you can do at home, is less money and less side effects.

    It won't kill bacteria or viruses but it will make your immune system better which is what you want.
     
  3. cb2

    cb2 Senior Member

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    my dr said the sub Q isn't as effective as the IV. .she said she will start me slowly.. i looked at my immune numbers from the last test in 2013 and they are all low.. IGA is 235, igg is 821 and igm is 50.. they have all decreased in one year- i am suspecting i am taking too much HC .. since i started HC in may of 2012 after my first immune test and one year later.. all low.

    the hard part about the ivigg is getting down to stanford for labs again- i can't stand to drive long and in traffic anymore.. and shuttle isn't an option down there- and they only have AM appts.. i just calledf to try to get into ucsf and i have to get another referral.. i could probably write my own but they wont take it of course. ; ) thanks for the support

    also i am a bit nervous because i take a low dose Testosterone and that tends to boost my rbc and i know one risk with iv igg is clots.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    @Ema does the subq. From my understanding you don't get the highs and lows of the IV because you do it weekly or ever other week. So no huge high and no crash week 3. I never heard it was less effective but Im not an expert on this.

    Your supposed to drink a lot before the infusion to lower the chance of clots. And in your case I'd think they'd deal with that so its not a major risk.

    I still wouldn't hesitate because the rewards IMO far outweigh the risks. And if all you can manage is SCIG, it's better than nothing. Driving before and after an infusion would be very hard I think since it can be rough after.
     
  5. Ema

    Ema Senior Member

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    This just flat isn't true. The FDA wouldn't have approved it as an alternative to IVIG if it hadn't been proven to be equally effective.

    Further, the side effects seem to be much less in my experience with weekly or biweekly dosing. And like minkey wrote, you eliminate the peaks and valleys found with one monthly IVIG. And the need for premeds typically.

    The only reason one would choose IVIG over SCIG in my opinion is because one needs a very high dose to treat an autoimmune condition. In these cases, it would simply be physically impossible to infuse the amount of medication into the body subQ.

    Beyond that, you can get IVIG at home now with Medicare.

    The risk of clots is very rare.

    How much HC are you taking?
     
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  6. cb2

    cb2 Senior Member

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    thank you @ Ema and @minkeygirl . it would be sooooo much easier for me to do sub q at home since i dont have a driver to get me to and fro infusion clinic. do you feel comfortable sharing any difference you have notice Ema and how it has helped? I am taking 27.5 mg of HC .. it is just curious to me how much my immune functions dropped in 2 years and HC is the only change.... well maybe i shouldn't go into that just yet and wait to see what my new immune panels looks like.. when i get to the immunologist. oddly also my lyme titers look alot worse than they did in 2010.
     
  7. cb2

    cb2 Senior Member

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    the link looks like it is for IV IGG? am just extra paranoid about clots..they thought i had a TIA 10 years ago..but all the tests proved inconclusive- thank you
     
  8. Ema

    Ema Senior Member

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    The biggest difference I have noticed is a reduction of inflammation and overall sense of well being. I never had a lot of respiratory infections or anything like that though.

    You can do either SCIG by yourself or IVIG at home with a nurse. You no longer have to go to an infusion center with Medicare if your doctor insists on IVIG for some reason.

    I doubt very much that dose of HC would affect your immune system negatively. Any number of factors could cause your numbers to drop.
     
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  9. minkeygirl

    minkeygirl But I Look So Good.

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    @Ema. So with my IgG subset issues, would I need a massive replacement?

    I don't get why the "allergist" insists on IVIG, among other things.
     
  10. Ema

    Ema Senior Member

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    No, just normal doses. It's only for autoimmune conditions where you need the super large doses that are impossible to achieve with SCIG.
     
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  11. cb2

    cb2 Senior Member

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    I love the idea of doing sub Q.. and if that isn't strong enough then i could always switch to IV right?
    I haven' t gotten a big infection in a long time..but i my energy is much lower than it was 2 years ago.. i get about 4 hours on a good day and even then i push with suppliments.

    better sense of well being is always a good thing!.. i printed out some of the medicare info to take to my primary dr tomorrow.. and gonna ask her for a referral to ucsf immunology, although i have an appt with stanford immunology next week.. it is easy to get to ucsf.
     
  12. cb2

    cb2 Senior Member

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    i remember a few years ago i tried IM gamma through the holtrof med group..and i felt horrible after word for a few days.

    @Ema question about coverage.. I have medicare a and B.. but i have express scripts for meds.. if i use the subQ can i jst get an RX for it and not have to go through medicare? or will i need the medicare aspect? does this make sense? thanks.. ps- i might not be back online until tomorrow.
    thanks for your help
     
  13. Ema

    Ema Senior Member

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    SubQ comes through Pt B and not Pt D so you will want to make sure to have some sort of Medigap coverage in place because each months treatment is upwards of 10K dollars.

    It has to come from a specialty pharmacy. I use Accredo.
     
  14. cb2

    cb2 Senior Member

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    Hi @ Ema i have anthem as a secondary.. but they dont do rx as far as i know. would that be a "medigap" ? thanks
     
  15. Ema

    Ema Senior Member

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    If they are the ones that pick up the 20% left after Medicare has paid, then yes. I would call them and ask though.
     
  16. minkeygirl

    minkeygirl But I Look So Good.

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    I suggest getting the financials worked out before you do anything unless you are loaded.

    I know some of the places that make immunoglobulin (not the pharmacies) do not have financial programs if you are in Medicare.

    It may also be different if you are in an HMO. I don't know if you made that clear.
     
  17. cb2

    cb2 Senior Member

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    I called Accredo and they said if the dr fax's a referral they will do the insurance checking and then let me know if it is a go. that sounds nice and easy. it gets confusing because I have express scripts, which i found out accredo is part of.. but need the medicare anthem (ppo) to cover the nurse part i guess.
    yes i definitely need to figure out the finance stuff.. as i am able. because i sure am not loaded. infact if this igg stuff helps then maybe i can stop spending so much on supplements- that would really really help since my rent is going up in october.
    the good news is i have hit my out of pocket max for Rx's for the rest of the year.

    we'll see what dr says today.- she wanted me to go to stanford and get the referral ..thought it would hold more weight.. so i feel like i am bugging her about this- but a trip to stanford with the traffic around here- takes many hours.
     
  18. cb2

    cb2 Senior Member

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    i have been getting more exhausted latly .. since the predinose for poison oak.. but i also started the FAMVIR.. arugh ..this is hard to tell what is causing what.. if the exhaustion and icky feelings like muscle malaise is from the famvir .. or maybe i need more HC? i guess i will know more when i increase the famvir on sat to 500mg 2x a day.
     
  19. minkeygirl

    minkeygirl But I Look So Good.

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    @Ema Is there anything that shows what you said about SCIG vs IVIG? My "allergist" seems to be still insisting on IVIG which I think is entirely unnecessary. Although getting it at home would be better than having to go to in infusion center.

    I'm wondering if doctors insist on IVIG and then the patient has a horrible reaction and they back down to SCIG?
     
  20. cb2

    cb2 Senior Member

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    my dr said she wanted me to try the IVIGG because if i were to have a reaction i would be in a hospital setting.. also she said she wants to get my immune levels up first then we could switch to subQ; i should have asked her how many cfs/lyme patients she has but i never think of these things- she said she has gotten alot of complaints from her cfs patients as they tend to have site and stomach reactions to the subq. i told her i have done alot of subq injections myself and never had an issue. i still have to travel to stanford to get the immunogolist seal of approve for her to get it. so i will do my part... and she is going to africa to work with HIV from aug 9 to 22nd and said she would rather i start when she is in town. i agree.. so it will be after the 22nd. and if stanford runs a panel of tests it may take longer than that.
     

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