Discussion in 'Active Clinical Studies' started by maryb, Mar 19, 2014.
CFS is not mentioned but CF is, plus a wide range of our symptoms.
I tried Famciclivor about 2 years ago for EBV and I had pretty spectacular results for a number of months. Learned a lot about what I did wrong with my first trial and I am now back on it again (9 days into the treatment).
I get horrendous headaches when I first start up the treatment to the point that I want to give up. Last time I took Tylenol and it took some of the edge off. This time Tylenol barely touched the pain. So I decided to experiment with what works for my migraine headaches, which is Excedrin Migraine. It worked really well, so I did a little research and found that the aspirin in Excedrin is also able to inhibit COX-2 like Celebrex (the downside to aspirin is that it also can block COX-1 and cause gastrointestinal problems).
Excedrin Migraine also includes aspirin, acetaminophin and caffeine. The caffeine is suppose to improve the delivery of the aspirin by 40% and a recent study found that for some people Excedrin was as effective or more effective than prescription migraine drugs. However, it looks like plain Excedrin might be better than Excedrin Migraine, if additional studies show that the ibuprofen in Excedrin Migraine might block some of the effectiveness of the aspirin. (Edit - only Exedrin Migraine and Excedrin Extra Strength contain aspirin and they both also contain acetaminophin.) I realize that some people have problems taking aspirin because of salicylates, but it will be interesting to see if famciclivor and aspirin would be able to achieve some of the same results as Famciclivor/Celebrex (or other COX-2 inhibitors).
See, 1)http://news.bbc.co.uk/2/hi/health/1720040.stm and 2) 2http://news.bbc.co.uk/2/hi/health/1840889.stm and 3) http://www.foxnews.com/health/2014/...ines-may-relieve-severe-migraines-study-says/ and 4) http://www.ncbi.nlm.nih.gov/pubmed/23918470
I selected Famciclivor (Famvir) over Valcyte or Valtrex because I thought Famvir might have less side effects than Valtrex or Valcyte. In addition the virus that shows up for me is EBV and I wanted to see if I could get away from using the big guns of Valcyte since HHV-6 and Cytomeglavirus did not seem to be a problem for me.
I believe that some of the problems with all of these oral anti-viral drugs relates to the dosing schedule and the bioavailability of the drugs. At least for me, it turns out to be critical that I stay right on top of each dose and not miss my 6 hour dosing schedule by more than a few minutes. I found that the amount of the drug and the timing of the doses I have taken has been on target with what has been used by these infectious disease doctors - Lerner, Kogelnik and Montoya. I also believe Dr. Lerner is correct in finding that you need to use the anti-viral that works best against the viruses that they believe you are dealing with and if there are other infections (bacterial and/or fungal), you also need to address those trouble makers. (See, 1) http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf and 2) http://www.treatmentcenterforcfs.com/video/)
If brincidofovir ever makes it out of clinical trials (which is the oral form of cidofovir) it may have a much longer bioavailability than the oral anti-virals currently on the market and perhaps could be taken only twice week. This would make it much easier for the drug to be administered by patients and I assume compliance with drug dosing would be much higher. However, it looks like we may have to stand in line behind the Department of Defense to get a chance to try this drug due to the government's interest in using this drug for ebola, smallpox and other more deadly viruses.
5) http://books.google.com/books?id=oo...onepage&q=brincidofovir CMX001 ME CFS&f=false
8) Politics at play for anti-viral drug manufacturers? - http://www.forbes.com/sites/rickung...g-deal-obama-administrations-next-solyndra/2/ (See also, http://www.upmchealthsecurity.org/our-work/publications/smallpox-fact-sheet)
Weren't the study results actually supposed to be officially published this month?
November 17th. Official conference headed by Pridgen at University of Boston.
Any view on why such bad headaches? Be interesting to know if those in the study also suffered and how they treated them.
do you get your Famvir via your doc, if not can you tell me where from? PM me if that's better.
It was a private Fibromyalgia doctor who prescribed a Celebrex/Valtrex combo for me about 18 months ago. I'd already been taking Valtrex but the Celebrex was new. I'm not sure if he had been in contact with other Rheumatologists or how he stumbled on this idea.
Took months for me to notice any difference but then my pain lessened and my physical functioning increased. My viral symptoms decreased. The two worked best when taken together.
Sadly, I could not afford to keep taking the drugs as I needed to buy them (even as generics from India). Haven't been able to afford to go back to see him either.
The pain I experienced started with a road traffic accident and I had injuries to muscles and a broken hip, a head injury and lots of other problems. The pain didn't calm down after the bruises etc had faded. At times it was worse than directly after the accident and concentrated in "spots".
How this would translate into pain caused by a herpes virus I don't know. Maybe it was just a coincidence for me? or did the accident and the knocks cause a virus buried in my body to flare?
I am not in the Pridgen study, so I don't know the amount/timing of Famciclivor that was taken by patients in the study and if they experienced any headaches from taking either Famciclivor and/or Celebrex. Famciclivor has a bioavailability of about 6 hours and the headaches I experienced were the worst at the midpoint (between hours 3 and 4) when taking the drug. I believe that last time I took this drug the headaches lasted for about a week or two, gradually becoming less intense even without taking any other medication for pain. Headaches are listed as a possible side effect of this drug.
I don't know what it means if you experience headache pain, but I like to think that the drug is having some effect on something that is going on in my brain. Since this drug is an anti-viral, I assume that it is going after a virus. The virus that has been a problem for me is EBV. Famciclivor is known to effect this herpesvirus, so it would make sense to me that the headache may be a side effect of the initial attack on the virus. Since I have cognitive issues related to this illness and these issues show a marked improvement when on this drug, I would think it is possible that the anti-viral is doing something within my brain to lessen some of these problems. I have been pretty ill for the last six months and I have had a lot of trouble writing and reading, but a week into this treatment round is the first time that I have felt like I had the brain power/energy to be able to communicate in writing other than a short response to an occasional e-mail.
When in a severe relapse of symptoms, it has felt like I was being asked to climb a mountain when trying to communicate in writing and it could take me a hours to write more than a few sentences. This is the same result as I had last time on this drug with my level of cognition returning to a point that it was a little frightening (i.e. my brain felt like it was in overdrive and I had long term memory recall and other cognitive processing skills return with a vengeance).
The drug also had a remarkable effect on my energy level (took 10 weeks for this to kick in the first time around) both in mental and physcial levels of energy. This time I have begun to feel some slight improvement (only a few hours) in energy level at day 10, but my cognition seems to be coming back online faster than last time. It will be interesting to see how and if this progresses over time.
Lessened learned from last go round with this drug is that increasing my activity level in response to improvement in my level of fatigue and improved cognitive skills was not a smart move. I was warned to not do this because it could cause a relapse in symptoms and the drug might not be able to work a second time around. However, a reprieve from these symptoms was like being on an oxygen high and I wanted to push the boundaries and live again. So for me, the drug can give you a false sense of wellness and it is important to understand that it is a slow road to trying to lower the level of viral replication and to try to attain a long term remission.
I took Famciclivor (generic Famvir - mfg. by TEVA U.S.A.). If I was going to take the generic form of this drug, my doctor only wanted me on the generic drug made by TEVA in the U.S. The cost of this drug under my insurance plan here in the U.S. is $5.00 per month. I believe that if you don't have insurance the cost of the drug (in the U.S.) at the dose I am taking (4 grams a day) would be around $800 a month, if purchased from a large retailer like Costco. I am not sure what dose patients in the Pridgen study were on or if they were on Famvir (brand name drug) or the generic drug and if the mfg. and location of where the drug was manufactured was a factor for this study.
I have not used Celebrex, so I don't know what the cost of this drug would be with my insurance plan. However, it looks like Celebrex at 200 mg purchased in the U.S. without insurance would cost approx. $200 or more for a one month supply at a daily dose of 200 mg. A generic version of this drug is suppose to become available in the U.S. by the end of this year. See, http://online.wsj.com/articles/SB10001424052702304311204579507381174606954 and http://www.fiercepharma.com/story/t...takedown-pfizers-29b-year-celebrex/2014-06-02.
Very interesting reading your experiences, Wally.
I sympathise with this! It's impossible not to increase our activity levels when feeling slightly better!
After relapsing while on the drug, I had another remission of symptoms after about six to nine months of going off the drug. Very strange, but it is my understanding that the same type of result was experienced with patients on rituximab (I don't know whether this is something that also has been known to happen with anti-virals).
Still not one to learn my lesson, I used my second remission to again take on the world and ended up in another bad relapse. Really hoping that I will be granted a third chance for remission and I will have better impulse control and be a model patient this time around.
We've all been there! We feel ever so slightly better, so we take on the world (relatively speaking!), for a day, and then have to spend the next six months in bed! It's just soooo easy to over-do things when we're feeling slightly better. Best of luck with the treatment Wally. I hope it goes well for you. It would be interesting to hear how it goes for you if you don't mind keeping us up to date occasionally.
That's interesting. There is a technical and expected reason for a delayed reaction with rituximab... The rituximab kills the B-cells but the autoantibodies (which hypothetically cause the symptoms) take a few months to diminish after the b-cells have been eliminated. Perhaps something similar happens after treatment with antivirals? i.e. perhaps viruses and antivirals have an indirect action on the illness, and it's the antibodies to the viruses that cause our symptoms? So, if that was the case then once the virus titres diminish, with antiviral treatment, then the antibodies to those viruses perhaps slowly reduce in number which leads to a reduction in symptoms? Or perhaps some other immune dysfunction is precipitated by the virus. (But, obviously I'm just speculating.)
I would be glad to provide updates on my famciclivor treatment. If others are interested (?) I could put it in a new thread, since this thread relates to the Pridgen study. Any suggestions on the best place to make a new thread and what title I should use?
As to the Pridgen study, it would be interesting to know how 200+mg. of aspirin (with or without the addition of caffeine) would compare to the COX-2 inhibiting properties of Celebrex. Also, it would be interesting to see if mixing aspirin and acetominophin together in a drug like Excedrin Migraine and Excedrin Extra Strength would effect the COX-2 inhibition seen in Celebrex and/or aspirin. Here is some additional information about Excedrin - 1) http://abcnews.go.com/Health/migrai...hs-excedrin-migraine-recall/story?id=16743173 and 2) http://www.drugs.com/mtm/excedrin-extra-strength.html and 3) http://www.drugs.com/mtm/excedrin-migraine.html and 4) https://www.excedrin.com/headache-pain-relievers.shtml
P.S. Autoantibody hypothesis re remission of symptoms after going off of anti-virals or a drug like Rutimixab is very interesting.
Hi Wally, I think the antiviral treatment section of the forum would be best if you'd like to provide updates about your treatment, perhaps with a title along the lines of "My experience with famciclivor"? And perhaps copy what you've posted above in relation to your past treatment experiences, if you decide to start a new thread. I'd definitely be interested to hear how you get on.
Thanks for your suggestion about starting a new thread. I will start this new thread under the treatment section to outline my experience both currently and in the past using Famciclivor (as well as my informal trial with Famciclivor combined with OTC drugs containing aspirin). I will make reference to the discussions that have already taken place in this thread related to my treatment.
hi Wally. I am wondering how high your EBV antibodies were...
I can't remember off of the top of my head what the EBV titers were, but I will try to include this in the thread that I plan to make under the treatment section of the Forum. If I remember correctly, I was told that my titer level would have qualified me to be in the Montoya/Kogelnik study conducted at Stanford. I will also check to see if I was tested for HSV-1, but I don't think this has ever been on the radar screen as something that has raised a flag in my lab tests.
Not sure when I will get the new thread up about my treatment, but I plan to include a pretty comprehensive overview of my health history and results/thoughts about my anti-viral trial(s) because I think the devil (or angel) will be in the details. I will post on this thread to let people know when I make a new post in the treatment section.
P.S. Feel free to PM me if there are any other questions you might like to see covered in my treatment thread.
Thanks, Wally. Congratulations on feeling better!
I am not in the study but I'm on two medications that were utilized in the study. I had been on Celebrex with no real improvement. When Valtrex was added, I had several days of almost normalcy.
The improvement didn't last but I've learned a few things since then. According to a ID doctor evaluating me for Lyme, she stated the Valtex dosage I was taking wasn't high enough for me to be getting the full benefits.
Looking forward to the results of the phase II trials.
Hi - I might be a senior member but haven't posted in ages -- I would be interested in following anyone on Famvir or have experience with this antiviral
Results of Dr. Pridgen's Phase 2 clinical trials were revealed at today's American College of Rheumatology conference today in Boston. I was not in attendance but I was informed that it would be today. From the title below, it appears Famciclovir prevailed over other antivirals tested. Can't wait to hear more about this. Hopefully, a publication or presentation will be forthcoming.
A Combination of Celecoxib and Famciclovir Is Efficacious in the Treatment of Fibromyalgia: Results of a Phase IIa Randomized, Double-Blind, Placebo-Controlled Study
William Pridgen1, Carol Duffy2, Judith Gendreau3 and R Michael Gendreau3, 1Innovative Med Concepts, Tuscaloosa, AL, 2University of Alabama, Tuscaloosa, AL, 3 Gendreau Consulting, LLC, Poway, CA
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