1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Gingergrrl's Journey with Famvir

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Jul 31, 2014.

  1. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    I just started Famvir today and will use this thread to try to track my progress (with the hope that the information can help others.) I will be taking 500 mg 2x/day (each dose 12 hours apart) with the plan to increase the dose in a few weeks if I tolerate this level. I was told that I might feel worse before feeling better and not to really expect to feel better for about six months.

    So far I feel okay except for nausea and a slight headache but both can be attributed to other possible causes so I am not blaming it on the Famvir (yet!) Unless it is absolutely intolerable, I plan to stick this out for the long haul. Just about everything new I try gives me nausea and sometimes I am able to acclimate and overcome it.

    I wanted this to be separate from my general thread re: all anti-virals so people can keep posting their experiences on there re: any a/v experiences (good or bad) and keep this one for my (hopefully positive!) journey with Famvir.

    Wish me luck :nervous:
     
    jeffrez, WillowJ, taniaaust1 and 15 others like this.
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,337
    Likes:
    1,523
    Left Coast
    Why don't you start a blog to track this?
     
  3. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    @minkeygirl I thought about that but wasn't sure how many people read the blogs as opposed to the forums and I thought I would get more feedback over here. I also thought more people might see it over here in case the info is helpful to others down the line. A few people asked me privately to keep an ongoing thread over here so I thought I would try it.
     
  4. AndyPandy

    AndyPandy Making the most of it

    Messages:
    257
    Likes:
    547
    Australia
    WillowJ, justy and Gingergrrl like this.
  5. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    951
    Likes:
    92
    Are you getting this on the NHS?
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,417
    Likes:
    4,814
    australia (brisbane)
    I think the blogs do get missed abit.

    woohoo good luck, smash that ebv.

    cheers!!
     
  7. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    @aquariusgirl I live in the U.S. and got it from a private doctor/insurance.

    @heapsreal Thank you and I thought the blogs section might get missed, too, which is why I put it over here. You have been incredibly helpful on my journey to get properly evaluated and get Famvir and cannot thank you enough. I have the image of smashing the EBV in my mind and hoping my body does the same! My nausea/headache from this morning are gone and I am tolerating the Famvir so far (only one pill- I know it is silly to even report yet!)
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,417
    Likes:
    4,814
    australia (brisbane)
    @Gingergrrl43 i just hope you are a responder. Im sure with the doctor you have, he has narrowed your issues down to ebv. good luck.
     
    Bessie, merylg and Gingergrrl like this.
  9. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    My terrible headache is back and I just checked the bottle of Famvir and there is a warning label at the bottom that says, "May cause headaches." So now I am not sure what to think? I rarely get headaches and had a terrible headache two days ago from trying to increase the Florinef which also causes headaches.

    I am absolutely determined to try Famvir, headaches or not, and am wondering, has anyone else who took it had this side effect? Is it common and does it go away once you get used to it? Whereas I am willing to stop the Florinef as it is only a small dose and not sure that it has ever really helped me.
     
    merylg likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,417
    Likes:
    4,814
    australia (brisbane)

    If symptoms worsen or continue and become hard to live with, talk it over with your doc about dropping the dose to 250mg twice a day. That's the dose I use??

    not uncommon to feel worse at first, like everything? ?
     
    Misfit Toy, maryb and merylg like this.
  11. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    @heapsreal It's interesting w/the dose b/c my Dr initially recommended a much higher dose of 1000 mg 3-4x/day. However he said this would never be approved by insurance as a starting dose and I also felt that my body would never tolerate such a high dose right off the bat, therefore decreasing my chances of success.

    So we decided on 500 mg 2x/day with plan to increase after 2-3 wks (depending how I am tolerating it.) I took some Tylenol and headache gone again and took the 2nd Famvir dose about an hour ago. I can tolerate anything in the short term but if the headaches are daily for the next six months, I will need to try a different med. I will re-evaluate at the end of the first two weeks and see how I feel.

    Oddly enough, I had more energy today and was able to do two loads of laundry, put dishes in the dishwasher, and stuff that would normally cause significant shortness of breath but didn't (but again I feel this cannot possibly be due to Famvir after one day.) I get so impatient and wish I could speed up the process and know what is due to what (as if any of this followed a logical formula!)
     
    WillowJ, AndyPandy, justy and 3 others like this.
  12. Hanna

    Hanna Senior Member

    Messages:
    417
    Likes:
    376
    Jerusalem, Israel
    Good luck @Gingergrrl43 with the famvir. So far so good, except those headaches? That's wonderful you have already had a good reaction (more energy/no shortnessof breath when doing the laundry). That's very encouraging. Hold on!
     
    WillowJ and Gingergrrl like this.
  13. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,714
    Likes:
    10,219
    Amersfoort, Netherlands
    There's a lot less interaction on blogs, so I generally prefer a normal thread. I'll probably copy my updates to my PR blog at some point to create something easy to find and read coherently, but while treatment is ongoing I really like getting suggestions and dialogue.
     
  14. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,612
    Florida
    Good luck @Gingergrrl43

    I was curious about your headache. Is it migraine-ish or located in one area ? I've read that pwcs can have pain at the base of the skull from imflammation and was curious if certain meds might affect this. Not to say that's all that's triggering this.

    I was prescribed Diamox for this about 20 years ago. Of course I can't remember why I stopped taking it. I'm assuming it helped because I have fond memories if it but frankly I was in constant pain from mps and fibro too.

    I've found ice helps this head pain. I typically use an ice pack on my lower spine / tailbone at the same time.

    Ginger tea is good for nausea. I just boil a little ginger.

    Tc .. x
     
    Last edited: Aug 1, 2014
    Gingergrrl likes this.
  15. Iquitos

    Iquitos Senior Member

    Messages:
    394
    Likes:
    594
    Colorado
    I had the worst headache of my life when I started acyclovir, and a fever of 104. A ziplock bag of ice and water helped a lot. The pain was as if an "alien" were trying to burst out of my skull, the base of my skull on the left only. I also took diclofenac with codeine, and cut back on the dose, then slowly built back up. In about 3 months I had a lot of improvement, especially with ataxia which had got so bad I couldn't walk without hanging onto the walls, furniture or someone's arm.

    Cannabis is very good for nausea if you can get it. I tincture mine -- don't care to smoke anything.

    Wishing you a good response!
     
    Misfit Toy and Gingergrrl like this.
  16. NK17

    NK17 Senior Member

    Messages:
    476
    Likes:
    1,086
    Slow and low with Famvir @Gingergrrl43 ;), i hope that day two brings a lifting of the veil in terms of symptoms and of course less or no side effects.
     
    Gingergrrl likes this.
  17. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    Thank you so much to everyone for all your feedback and support, it means the world to me. Today is my second day on Famvir and so far, no headache!!! I am sticking with the 500 mg dose 2x/day as prescribed and feel very hopeful about it. Yesterday I took both doses with food so this morning I tried it without food (since the pharmacist said either way was okay) and both ways do seem to be okay.

    I woke up with more energy today and was able to prepare my own breakfast, unpack part of my suitcase (from trip to OMI) do another load of laundry, and even shaved my legs with no tachycardia or shortness of breath! I know these are not revolutionary events to the normal world but I am very happy about them. I can't imagine it is a placebo affect (b/c I have tried a million other meds & supplements this year with high hopes but no effect) but even if it is, I will take it!

    The one weird new symptom is that I had pain last night and this morning along the nerve on the right side of my face which I have never had before. My husband thinks that maybe the Famvir is working if the EBV, HSV1 and VZV (my active viruses) are hiding in the nerves. I am hoping he is right vs. this being just a weird side effect. I have never had shingles, cold sores, or any outward signs of herpes virus so maybe the viruses are hiding in my nerves?

    I am also continuing to take the maximum dose of Monolaurin (a high potency natural anti-viral) and hoping that it is teaming up with the Famvir to stop the viruses from replicating. I think the Monolaurin is giving me the nausea but at this point, I really don't care!

    The Epicor that I ordered arrived today (which my doctor wants me to take and said it can slowly increase my NK functioning) but he said not to start it until I have been on Famvir at least three days on it's own (in case of side effects- to keep things separate.) I really want to start it today but am going to listen and wait. Patience is not my strong suit LOL.
     
  18. m1she11e

    m1she11e Senior Member

    Messages:
    313
    Likes:
    91
    Florida
    I knocked down HHV6 and CMV on Famvir and kept it down with Acyclovir. Most recent my EBV has shot up although it was only been high once before. It then came down many years ago without any treatment. Now 15 years later it has traded places for the virus in the lead. Its odd how these viruses work! As I have mentioned before I never had one "worse before better" day on Famvir or Acyclovir.

    I really don't feel any different with or without the viruses being high according to blood work. Im thinking of going back to Famvir and considering adding the Celebrex according to the Dr Pridgen protocol. Its strange but I do feel better on Acyclovir than I do on Famvir. It appears that Famvir is the drug of choice though for EBV.

    I will be watching to see how you do Gingergrrl !! Good luck!!
     
    maryb and Gingergrrl like this.
  19. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    @m1she11e Thank you so much and I will keep posting my journey with Famvir. When you said Famvir is the drug of choice for EBV what did you base that on? Right now I tend to agree with you but want to hear your thoughts on it.
     
    nandixon likes this.
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,206
    Likes:
    3,738
    USA
    Just wanted to type how my second day on Famvir turned out before going to bed. The day itself went well but I think I overdid it and did not pace myself or rest enough. It is so hard b/c when we have those days where we have more energy, we want to get things done and I know from experience that this can be a mistake.

    I ended up going to the grocery store with my husband tonight (and I did not overdo it- he drove, he carried things & pushed the cart, etc) but I walked around the entire store and later realized I had barely drank water today and forgot to take my salt tablets & potassium. So tonight, I had an episode with POTS where my HR jumped about 60 bpm when I stood up and then I felt nauseous and had chest pain under my ribs every time I took a breath.

    So I learned my lesson and even though Famvir appears to be giving me more energy (at least the first two days), I need to pace myself better and not overdo it. It is just so hard :aghhh:.
     
    WillowJ, Hanna, NK17 and 2 others like this.

See more popular forum discussions.

Share This Page