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My Famvir Adventure

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by SDSue, Nov 18, 2014.

  1. SDSue

    SDSue Southeast

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    After several months on LDN and inosine, my EBV levels actually went up. Thus, I am beginning Famvir as per my ME/CFS specialist. My dose will be 250mg bid for 2 weeks, and then we will raise the dose depending on how I'm feeling.

    I know this has been discussed to death, but I don't understand the IgG vs IgM (?) argument. My nephrologist looked at my EBV labs today and basically said my ME doc doesn't know what they're doing by putting me on Famvir because there's no way I have EBV (….. everyone has elevated levels, etc). Because Famvir is potentially nephrotoxic, his comments left me confused and scared.

    If anyone could summarize their experiences with Famvir, including dosages, how often you raised your dose, how long before you saw improvements, etc I would appreciate it deeply. Thanks.
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    I started on 250 mgs bid a few months ago. I felt ok, nothing specific, maybe felt a bit better. In August I crashed from stressful dental work. It took me a month to figure out what was going on. I had horrible sore throat, my neck was swollen, I couldn't keep my eyes open. I was just going through the motions.

    I upped my does to 750 mgs total per day and within 2 days my throat was better and I had more energy. That lasted about 2 days so I upped to 1ooo mgs/day and within 2 days all my symptoms were gone and have stayed gone.

    I just lowered back down to 750 mgs so I have some place to go to if I need to.

    What is interesting is since I've been on famvir I have not had a herpes outbreak. I had the same thing with Acyclovir. Who knows.

    But I know this has helped my EBV because I felt like I had mono.

    I also think that Famvir is the least damaging to the kidneys vs. Acyclovir, Valtrex and Valcyte.

    Maybe @heapsreal can add his 2 cents.

    I don't get the IgG IgM stuff but if it makes me feel better who cares?

    I was unable to take 500 mgs at once. I felt really sick and it caused pain so I split it throughout the day.
     
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Ask that doctor what he does for long term suppressive therapy for herpes infections, most docs use famvir or valtrex long term for this and its generally very safe. regular blood work can monitor any potential issues.
     
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  4. SDSue

    SDSue Southeast

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    Wow, @minkeygirl , I'm happy to hear you have such fast responses! I can only hope the same. I'm supposed to go up to 750mg per day in two weeks if all goes well. After that, I don't know how high I'll be asked to go.

    Thanks, @heapsreal . You make a great point - I can count on you for a dose of reality. May I ask how long you've been on Famvir and at what dose? I'm trying to get a feel for what to expect. Thanks.
     
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  5. halcyon

    halcyon Senior Member

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    I don't understand the past vs. reactivated findings either and I wish I did. It's definitely not true that everyone infected with EBV has elevated levels, and I don't think anybody, including your nephrologist, can say with certainty what a certain level means or doesn't mean.

    It seems ridiculous to me that it's so hard to determine past vs. reactivated. It sounds like PCR isn't a good way to tell either. I was just reading about using IgG avidity to differentiate between past and current and it sounds like this method might have some merit. I'd never come across this before but haven't done much research on EBV so pardon me if I'm flogging a dead horse.
     
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  6. halcyon

    halcyon Senior Member

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    Nevermind I read the abstract wrong, IgG avidity is high in past or reactivated infection. Not helpful.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @SDSue

    I am sorry to hear this and wish you the best on Famvir. I am the Queen of getting rare side effects that no one else on earth had gotten from meds and I have had no problems with Famvir.

    My understanding is that IgG represents a past infection but that IgM shows a current infection or re-activation. My understanding is that the "Early antigen test" also shows a current infection or re-activation of EBV. What did your doctor say?

    Can your nephrologist speak with your ME doc? I can't comment about the nephrotoxic part and would assume your nephrologist is knowledgeable about this part. But he may not be up to date on current interpretations of EBV antibody titers in someone with ME/CFS.

    I started at 500 mg 2x/day and after about a month it was increased to 3x/day (which is still my current dose.) I noticed fairly quickly that with Famvir I no longer had the "sickly fatigue" where I felt feverish, freezing/hot, and felt a level of sickness similar to actual mono. Unfortunately the Famvir has not changed my cardiac & autonomic symptoms. My sleep and GI issues are virtually resolved but I did other interventions and can't say for sure how much this was due to Famvir.
     
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  8. JT1024

    JT1024 Senior Member

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    Famvir, in conjunction with Celebrex, has recently been reported by Dr. William Pridgen to be effective in treating fibromyalgia (see below).

    I have not tried Famvir yet but I have been on Valtrex and Celebrex for the last few months. The first several days on Valtrex (I had been on Celebrex) gave me several days of almost complete alleviation of my symptoms. It didn't last completely but I knew something was working for the better.

    I am anxious to change to Famvir if I can handle it.

    http://www.prnewswire.com/news-rele...eatment-shows-promise-in-study-283042331.html

    Novel Fibromyalgia Treatment Shows Promise in StudyPhase II Results Unveiled at 2014 American College of Rheumatology Annual Meeting

    Detailed results of the randomized, double-blinded, placebo-controlled Phase II study, known as PRID-201, were presented today at the 2014 American College of Rheumatology annual meeting in Boston by William L. Pridgen, M.D., FACS, founder and CEO of Innovative Med Concepts.

    According to Daniel J. Clauw, M.D., director of the Chronic Pain & Fatigue Research Center at the University of Michigan (Ann Arbor), commenting on the PRID-201 results, "IMC-1 shows promise as a potentially new treatment for the millions of people who suffer from this debilitating condition."

    Fibromyalgia is a multi-symptom disorder involving widespread pain, fatigue, headaches, sleep problems, mood changes and inability to concentrate. Its causes are unknown. According to the National Fibromyalgia Association, an estimated 3-6 percent of people worldwide suffer from the condition—10 million people in the United States alone.

    The 16-week study evaluated the efficacy and safety of IMC-1, a fixed-dose-combination of famciclovir and celecoxib. 143 FM patients were recruited at 12 U.S. clinics. Patients received either a combination treatment of IMC-1 or a matching placebo.

    According to Dr. Pridgen, chronic tissue-resident herpes virus may be an underlying cause of fibromyalgia. IMC-1 represents a novel treatment by combining an anti-herpes virus nucleoside analog with the anti-herpes virus activity exhibited by a COX-2 inhibitor.

    "Many herpes viruses are known to significantly upregulate COX enzymes in the body, which in turn are important for efficient viral replication," Pridgen said. "In theory, physical or emotional stress in patients can reactivate the virus and result in perpetuation of the symptoms of fibromyalgia. Effectively suppressing latent viruses may significantly improve the pain and related symptoms of FM."

    The PRID-201 clinical study tested this hypothesis using the IMC-1 fixed-dose-combination. Patients in the trial rated their pain over the course of the study using a 0-10 numeric rating scale, with the study's primary endpoint being the reduction in average pain from baseline to week 16. Pain measured on both a 24-hour and seven-day recall basis met statistical significance, with the seven-day recall data achieving high statistical significance (p=0.001). Other therapeutic domains studied that showed statistical significance were Patient Global Impression (PGIC), all three Revised Fibromyalgia Impact Questionnaire (FIQ-R) domains, 30% and 50% Pain reduction responder analysis and the NIH PROMIS fatigue instrument.

    Other noteworthy results from PRID-201: there was a lower discontinuation rate among patients in the IMC-1 arm compared to placebo, with 82.6 percent of patients randomized to IMC-1 completing the full 16 weeks of treatment versus 60.8 percent of patients on placebo. The discontinuation rate due to adverse events was almost three times lower for patients in the IMC-1 group 5.8% than for those on placebo 16.2% (p=0.012). While 41 percent of patients randomized to placebo used rescue medication, only 25 percent of those in the IMC-1 group required rescue medication (p=0.037).

    "Compared to placebo, the relatively high completion rate, improved pain scores and the low rate of discontinuation because of adverse events are consistent with a well-tolerated and effective therapy," Dr. Clauw said.

    About IMC-1IMC-1 is a novel combination oral medicine designed to treat HSV-1, a condition that may be one of the underlying causes of fibromyalgia syndrome. IMC-1 combines the anti-herpes virus nucleoside analog famciclovir with anti-herpes virus activity exhibited by the COX-2 inhibitor celecoxib.

    About Innovative Med ConceptsInnovative Med Concepts, LLC, is a biotech company developing novel treatments for fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), irritable bowel syndrome and other related conditions. On the Web: http://innovativemedconcepts.com.

    Forward-Looking StatementThis IMC press release includes forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995 that are subject to risks, uncertainties and other factors, including the possibility of unfavorable results from future clinical trials involving IMC-1 and future variations of IMC-1. IMC may also experience challenges in enrolling patients in clinical studies, requiring those studies to be modified or delayed. Further, IMC may make a strategic decision to discontinue development of IMC-1 if, for example, IMC believes commercialization of a related fixed dose combination was felt to have a superior potential. As a result, IMC-1 may never be successfully commercialized. These risks, uncertainties and other factors could cause actual results to differ materially from those referred to in the forward-looking statements. The reader is cautioned not to rely on these forward-looking statements. All forward-looking statements are based on information currently available to IMC, and IMC assumes no obligation to update any such forward-looking statements.



    SOURCE Innovative Med Concepts, LLC
     
  9. SDSue

    SDSue Southeast

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    Wow. With your history, I'm amazed you started at 500 bid and had no issues. That's awesome and makes me think I'll do ok since I'm starting lower. For some reason, this feels like a bigger deal than all the other drugs I've been prescribed.
    This is exciting. I'll be eager to hear how you do over time, and hope you achieve long-lasting alleviation of symptoms. I'm hoping I can add Celebrex after some time on Famvir (unless, of course, I'm completely healed with Famvir alone. lol )
    I flog dead horses all the time - and the worst part is I don't remember having flogged them before! Thanks for the avidity info. I hadn't heard that term before.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @SDSue With my history I am shocked as well! I did have some headaches when I first started Famvir and for a few days noticed some pain down the side of my face and under my ribs but it was very manageable. My dr said I could take 1/2 a pain pill which completely alleviated it and then all the pain went away as I adapted to Famvir (and was really minor in the scheme of things.)

    The side effects that I feared the most were 1) tachycardia 2) insomnia 3) nausea and none of these ever occurred from Famvir- not even once.
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    No black and white answer. Igg as just a past infection is old school, some doctors think that once above a certain titre mark that it shows an active infection, igm is said to be a brand new infection.

    A doctor really needs to look at all the clinical symptoms and maybe some other immune tests to come to a conclusion but nothing is confirmed really unless one uses antivirals and improves, then they can say that its most likely that infection. If one doesnt improve than we could say the infection isnt an issue or that there is something else going on.

    I also think the triggering infection can be a guide eg mono, and testing looks likely eg high ebv titres, lymphocytosis, elevated cd8 t cells, low nk function. I think a trial of antivirals is worth a shot. Also look for other ongoing infections and immune disorders.

    I think we always need to be looking for other issues as cfs/me is a neuro-immune disorder, so we need to look out for the neuro side of things like hormones, orthostatic issues etc. Im just not sure there is going to be a silver bullet but maybe a few lead bullets??
     
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  12. SDSue

    SDSue Southeast

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    Holy crap. Just one hour after 250 mg Famvir and I'm sick. Nausea, probably gonna vomit, very dizzy, etc. This is the strongest reaction I've had to a drug yet. Is this normal? More importantly, does it go away with time?

    Will anything ever be easy with ME/CFS. Ugghh.
     
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  13. Valentijn

    Valentijn Senior Member

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    With nausea, dizziness, and an urge to vomit, it might help to just lie down and close your eyes. Doxycycline still causes a couple hours of daily intense motion sickness for me after two months of taking it, and if I try to look at a computer or TV screen for more than a minute or two during that time, I will throw up.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @SDSue I am so sorry to hear that and I did not have any of those issues with Famvir. We are all so different and you are able to tolerate LDN but I couldn't even take 1 mg of it! Can you talk to your CFS doctor b/c maybe you will adapt to it and the nausea will go away with time?
     
  15. SDSue

    SDSue Southeast

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    Thanks, Val and @Gingergrrl . I'm 'computering' in small doses out of desperation. I decided to forgo this evening's dose and try again tomorrow. This time, however, I will take my 250 mg at bedtime and hopefully sleep thru the worst of it. If that's successful, after 2 weeks I'll try twice daily again.
     
  16. SDSue

    SDSue Southeast

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    One week into Famvir:

    After a rough start with 2 days of nausea, headaches, etc, I've settled in at 250 mg twice daily, with no further drug-induced symptoms. In one week, I will raise the dose to 500 mg twice daily.

    I will post here occasionally to remind myself (and others if they want to know!) how this adventure plays out. How I hope I'm a responder. :nervous:
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    @SDSue I am so glad to hear that you are tolerating the Famvir better and no longer having the side effects!

    I hope you will keep posting your progress and journey in this thread and it is helpful to hear your experiences.
     
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  18. SDSue

    SDSue Southeast

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    I have a cold!

    For the first time in several years, I have a cold. My throat is raw with a large nodule (never had that before). I'm stuffy, my chest hurts, and I'm a bit feverish. I'm just hoping it doesn't turn bacterial - the last thing I want is a round of antibiotics when I've fought so hard to get my gut settled.

    Coincidence? Thoughts?
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    @SDSue I am so sorry you are sick and my guess is that it is not related to the Famvir but obviously I don't know! I've been on Famvir for four months but have not gotten a traditional cold or anything like that since Jan 2013 when this all started.

    Hope you feel better soon! What does your doctor think (if you asked them?)
     
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  20. SDSue

    SDSue Southeast

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    I haven't asked. I'm hoping to ride it out without complication and chalk it up to an improving immune system.:ill:
     
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