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Increasing Famvir Dose

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, Jun 27, 2011.

  1. RichardII

    RichardII

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    Brisbane and Famvir

    hi Heapsreal
    i am also in Brisbane. do you get your famvir from a doc or just buy it overseas?
    have you found a cheap supply?
    my doc has given me Valtrex but on further reading i don't think it is the right one.
    i am at St Lucia.
    thanks
    Richard
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    reposting this post in this link as i think its more appropriate and helps keep my antiviral journey together. I have deleted this from the other thread so this is a couple of days old even though it says posted today.

    After my last lymphocyte testing(sept) i did have a period where i felt good but it didnt last long. I seem to be plagued by chronic sinus infections and doing rounds of abx which are helping. I recently had another lymph sub set test(dec) done and for the first time have come up while on famvir, my cd8 and cd3 are now just in the high level again, maybe because my immune system is taking a beating from the sinus infections. But my condition does seem to correspond to my cd8 levels because as of late i have been feeling like crap, again. My last nk function test in june/july showed it was still crappy, so its got to be hard keeping all the bugs down when the nk cells are lazy??

    I have had the all clear from my doc on liver and kidney function and have started valcyte at 450mg in the morning and still taking famvir at night, so we will see what happens. After day 1 no weird reactions so far. I only have a 30 day supply of valcyte so im still shopping around for some well price valcyte, 450mg x 40 for $365 is the best i have seen.

    cheers!!!
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    So it has been 3 days on valcyte, i have had some different symptoms but hard to tell if it was from before or after starting valcyte or an overlap maybe but nothing thats really troubling me. I have had a pinched muscle or knotts between my shoulder blades since the day before i started valcyte, it has eased but still there. generally if i get something like this it go's within a day or 2. The constant headaches i have had now for a few weeks have greatly eased but hard to tell if finally the abx are working on my sinus infection, but i have had an increase in general fatigue but again it could be from over doing it coming up to xmas etc. Its early days yet so really hard to tell if its having an impact, although im not expecting anything yet, the good thing is i havent had any bad noticable effects from valcyte. Maybe being on famvir has reduced any die off type reactions i possibly would have had if i went straight to valcyte.

    I managed to find another pharmacy selling generic valcyte/valgan slightly cheaper, http://www dot canadadrugpharmacy dot com/, this company beats other pharmacy's so had to give them a link to the pharmacy i previously had priced from which was $364.99 for 40 tabs(http://www.totaldrugmart.com/drugsearch.asp?strString=Search&txtName=Valgan&submitted=yes) the above company beat them by about $10. So with this order have enough valcyte to keep me going to mid feb, hopefully by then i can find out if my doc can get some type of compassionate authority for cheap/free valcyte from genetech. Hopefully these links can help others who are considering valcyte and if anyone else has any cheaper sources of valcyte, please post here.

    cheers!!!
     
  4. ws6an

    ws6an

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    Hi Heapsreal, has your doctor put you on valcyte because the famvir is not working for you? Have you had your titres checked?
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I just felt like i was going backwards slightly and maybe cmv was lowering my immunity and making me prone to these chronic sinus issues. In stead of being at a constant 40% pre famvir with famvir i have been as high as 90% but crash down to 40-50% depending on activity and sleep at the time, so im just very unstable as far as cfs go's i guess. Famvir seemed to help so far but of late im spinning my wheels and need something stronger to hit it on the head. Also thought that while im still working and can afford to pay for it i should do it now, if later on i get too sick to work i would never be able to afford to pay for valcyte. Plus my last lymphocyte test showed my viral markers going up and the doctor ok'd it for me to give valcyte the GO.

    cheers!!!
     
  6. ws6an

    ws6an

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    Well good luck hope it helps. Though sounds like you might have something else going on there. Have you been tested for allergies? Pretty common with us CFS'ers. I've been plagued with sinus problems with the past few months which have been driving me nuts. Have been on antihistamines for the past couple of weeks and my sinus problems are much much better. I have an appointment with a specialist next week and hoping to get to the bottom of what is causing my allergies.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    interesting you say allergies, i had some immunoglobulin testing done and my ige levels are quite high and from what i have read up on this, they can indicate allergies etc, also iga immunoglobulins are high which can have alot to do with infections in eyes and nose etc. Maybe i have a number of issues going on that i will need to talk over with my doc. but the cd8 being high is consistant with cmv, but i suppose everything is tied to our crappy immune system, needs less of a load on it. Dam sinus problems seem very common in cfs?? I have woken with a sore throat today, dam germs.

    cheers!!!
     
  8. ws6an

    ws6an

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    I think allergies can give the immune system a hammering. As well as sinus problems i also have had some skin allergies as well, itching and eczema, which i have never had before, plus dark circles under my eyes which i have read can be down to allergies as well. Seems that a lot of people develop allergies with this stupid illness!

    Last time i was ill i suddenly developed hayfever, which i had never had before and i have thankfully never had it since.

    I've had some success with Valtrex and reduction in some of my symptoms but think there is other stuff i need to concentrate on as well. Maybe getting the allergies under control will be the missing piece of the puzzle, who knows!
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Ordering valcyte seems to be harder then i expected, the company above that says they are an international pharmacy, has now emailed me saying they dont take international credit cards and also only take prescriptions from a licensed US doctor, how does that work for international customers???? Why are off label prescriptions so dam expensive in australia???

    Any suggestions???

    cheers:(
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have emailed a couple more companies that sell valcyte generic at a reasonable price, but it all seems a no go, mmm. Im going to do this 30 days i have of valcyte and either use higher doses of famvir or take valtrex and famvir together?? My only other option is to see if genetech will supply me valcyte on compassionate grounds but we will see????

    I have been on 2 abx for sinus issues and 2 days ago my son said he had a sore throat, yesterday i woke with a sore throat and today my dam sinus are blocked right up, i feel like crap. I dont know whether to see a doc about more abx or do something else, maybe look into IV vit c ?? Has been a few months since i used cycloferon which i think i need to order and get back on to try and strengthen my nk function.

    feeling like crap,
    cheers!!!
     
  11. ws6an

    ws6an

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    Sorry to hear your feeling crappy. Its hard enough dealing with all the usual symptoms without having to deal with catching other bugs.

    I've seen very few online pharmacies that sell Generic Valcyte, but then i'm not surprised that you've had difficulties sourcing this as it is quite a toxic drug and probably not the sort of thing that is advised to self prescribe. Have you spoken to your doctor about the possibility of getting a private prescription through him?
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes i have a prescrition from my doctor, my problem is they only recognise americanscripts for some reason
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Almost 2 weeks on valcyte. I cant say i have noticed anything but i realise many need to be on this for several months to really notice anything, but also im still having sinus issues so makes it hard to tell if anything would help. Im into my 4th straight week of abx and not really knocking it on the head but has tamed it down some. I have ordered more cycloferon which i havent used for awhile so ordered more and hopefully it helps like it has in the past.

    I have given up on finding any cheap generic valcyte, so my plan after this valcyte(30days) at this stage is to use higher doses of famvir or maybe a famvir valtrex combo and add artesunate. I have read that arsetunate can help lower titres of herpes infections like ebv/cmv/hhv6. Also once sinuses are sorted i will then start using dhea again which did help with energy. I have been sleeping longer and not waking up as much but i think this is more to do with sinus infection running me down as i wake feeling crappy????

    cheers!!!
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Looks like i have another 60 tabs coming to me, this will give me a total of 3 months on with famvir, that sounds like a better treatment trial. Mid march is my next doc appointment and will be getting another lymphocyte test prior to this appointment, so we can see what effects of valcyte has had.The extended treatment length has me abit more positive.

    Sinuses are slowly getting better just, i have 1 more week of abx left so i hope i have this sorted before the end of the week, if not im going to hit my doc up for a ct scan of my sinuses and a swab to find what infections are going on, although recently read a swab of frontal sinuses is almost impossible, so not sure if i can get this done yet.

    cheers!!!
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sinus infection seem to be getting better the constant post nasal drip and sinus headaches, high BP have let up. Now back on low dose dhea has helped some but i wonder if the fatigue and achey legs etc are from valcyte. I do feel more lethargic then normal. Maybe once over this sinus infection completely i will feel better.

    Reading a few stories on people experience with valcyte i notice that im getting similar symptoms from valcyte that others got. My eyes seem alot dryer then normal, and sleep is more irratic then normal. I find i really need more sleep then normal but cant seem to get enough, i have had worse periods of sleep but since valcyte i have been feeling like i need more, although sinus headaches have eased up, i have more a global type headache/brain fog. It is hard to tell if this is just cfs/me, sinuses or valcyte but it does feel different to the past. Hopefully the valcyte is getting to the little buggers. I have cycloferon on the way so hopefully if i get my NK function up as well as dhea levels up things start improving???

    cheeers!!!
     
  16. RichardII

    RichardII

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    Brisbane, Australia
    Heaps on Valcyte?

    hi Heapsreal

    are you on valcyte now? how did you get it and, can i ask, what was the cost.
    i am in Brisbane as well. with CMV, diagnosed recently.
    my daughter also has HHV-6.
    i was looking to try and source it from India but i might go the famvir route.
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its been 4 weeks now on valcyte with famvir, the last week only using valcyte every second day as i was feeling really crappy with increase in ME symptoms, extra lethargy and feeling depressed, dosing every second day has helped but still feel down, so its definately working on something up in my knoggin. I have been using 5htp morning and night more consistantly to try and help. I can understand now when others mention about just resting up while on valcyte, but i just dont have a choice. Hopefully there is light at the end of the tunnel and these symptoms are more tolerable that i know whats causing them ie valcyte effecting these viruses i have ie die off or IRIS etc

    Time will tell, although its a grind at the moment. I have another 60 tablets i have aquired, so dosing them every second day with give me a total time of 5 months on valcyte with famvir. If side effects improve i may go back to 1 tab a day but for now every second day is still doing a number on me.

    cheers!!!
     
  18. Bethinoz

    Bethinoz

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    Hey Heaps

    Are you considering getting sinus surgery it's been the best thing I ever did. My daughter has also just had the same op and adenoidectomy after being sick for almost a year, so waiting for the result. I haven't been sick at all, not a virus or cold since June last year the longest even before I had CFS. And there is all this energy to burn. I wonder if this was the chronic sourse of infection that lead to immune dysfunction. I read your post and wish I could give some energy to you..... working with people is so full on when you are so tired

    Beth
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi beth, i think i have the sinuses sorted for now but keeping an eye on it, i think that my sinus issues are secondary to my crappy immune system???? Had a week of valcyte and think im better then prevalcyte, going to do another four week run of valcyte although i feel crappy on it i feel ots doing something for me, but four weeks is about all i can probably tolerate at the moment. Still using famvir which i hope keeps viral load down from valcyte. Always a work in progress, lol
     
  20. maryb

    maryb iherb code TAK122

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    Hope things start to improve soon for you Heaps - you have really worked at it - are you getting viral levels checked regularly, as well as general bloods?
    Just out of interest do you have a private doc or are you under something like our NHS which covers all citizens?
     

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