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xmrv+ starting AV's tenofovir and raltegravir

Discussion in 'XMRV Testing, Treatment and Transmission' started by pinkytuscadaro, Jan 27, 2011.

  1. pinkytuscadaro

    pinkytuscadaro

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    Hello everyone:
    I have been ill with CFS for 24 years; I am 47 years old. I have been bed ridden for most of the 24 years.
    I found out last November that I was xmrv+
    I have tried almost every type of alternative treatment that one could imagine over the last 24 years.
    I do not feel that anything that I have tried has really helped me.
    My NP is ordering tenofovir and raltegravir through a mail order pharmacy for me today. We are hoping that there will not be insurance complications.
    I will post as soon as meds arrive.
    I pray that this is the answer.
    Pinky
    My prescribing NP is at www.npjulie.com
    She is in Seattle Washington
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good luck pinky, keep us all posted.
  3. Daffodil

    Daffodil Senior Member

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    welcome aboard, pinky!
  4. illsince1977

    illsince1977 A shadow of my former self

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    Why not AZT, as well?
  5. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Good luck Pinky, I believe I needed tenofovir along with the Ral for it to work better. I still have lots of Ral, If you do well on the combo, I'll try and get my hands on some tenofovir.
  6. pinkytuscadaro

    pinkytuscadaro

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    Thanks everyone.
    The meds will arrive tomorrow.
    Hello 1977, I am not taking AZT because according to Dr. Brewer it does not seem to make a difference wich 2 drugs you are using out of the 3 he adds in the third drug when 2 aren't helping. I am afraid of AZT, I don't know how much I can take; I sure don't think I could go through what Daffodil did. I guess that the drugs can cause depression.
    I have already been through a lot: chemo for aggressive Breast Cancer and I ended up in the hospital while on Valcyte.
    However I looked into Tenofovir and Raltegravir more today and Ralt is actually easier on a person than valcyte, at least that is what this article says. I will post at the end.
    I take a lot of supplements and will watch things closely.
    Jimbo, I read about your experience on Ral back in November. I hope we are on the right track and thanks to you and everyone else for your support.
    Pinky
    2011
    HIV Drug also effective against herpesviruses
    Sept 23, 2010 - Institute for Research in Biomedicine - Barcelona, Spain


    It was discovered that the drug Raltegravir (Isentress) is effective against all herpesviruses through a different mechanism than that of HIV. As it turns out, all Herpesviruses (HHV-1, HHV-2, Eppstein-Barr virus, Cytomegalovirus, HHV-8) contain the UL89 protein, which is responsible for DNA maturation. Without it, the virus cannot leave the cell to continue infection. This discovery will lead to the discovery of a class of safer drugs to treat herpesviral infections. For CFS patients, it provides a one-two punch, knocking out XMRV and Herpesvirus co-infections.


    Previously, certain drugs against herpesviruses were trialled in CFS patients with only small improvements at best. The drawback to the current generation of drugs are that they are fraught with side effects. Foscarnet is extremely nephrotoxic; Ganciclovir and Valganciclovir (Valcyte) causes myelosuppresion, GI symptoms, as well as neurological symptoms; and Valacyclovir and famciclovir lack broad spectrum anti-viral efficacy. Many persons taking Valcyte report horrendous side effects, comparable to AZT. Typically, Valcyte costs $800 a month, and Isentress costs $950 a month. Raltegravir on the other hand has a very favorable side effect profile - when taken alone, it does not cause fat redistribution or raised cholesterol like other classes of HIV medications. It is rather unfortunate that very little research has been devoted to developing new classes of antiherpesvirals with better side effect profiles, since there is evidence that XMRV proliferates in EBV transformed B cells. It is also of note that B cell depletion through Rituximab provides a substantial improvement in CFS patients that lasts 3-4 months, but then returns, which leads to the conclusion that Lymphoblasts may very likely be where the secrets of CFS lie - unfortunately I do not know of any significant ongoing studies that have been conducted using bone marrow aspirations on CFS patients.
    Posted by Fibromyalgia Research at 10:51 PM
  7. pinkytuscadaro

    pinkytuscadaro

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    My Meds arrrived this morning. They are medium in size and not colored like the valtrex I last took: the valtrex was neon blue and huge, the pills themselves looked poisonous.
    I had to quit valtrex and famvir due to an allergic reaction: itching all over my body.
    Before the unbearable itching started both meds gave me a severe upset stomach.
    I have medicare with Regence as my secondary I ordered the meds through a postal pharmacy and after Regence/Medicare paid their portion my out of pocket expense for one month is 330.04. I paid an extra 35.00 to have them overnighted. Not another day to lose :)
    I just read in the indcications for ralt and this part is exciting: this medication may improve immune function!!!!! This may reaveal hidden infections in some patients.
    Oh how I hope it improves my immune function.
    I have had a runny nose for 20 years. I wonder if it will improve that?
    That of course is the least of my problems.
    I will post back later and will try to get the energy to put together a list of my current symptoms,
    Have a great day.
    Pinky
  8. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Is your dose for Ral 400mg twice a day like mine was? I got 5 pretty good weeks on Ral and maybe if I used the other one, it would have kept on going?
  9. pinkytuscadaro

    pinkytuscadaro

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    Jimbo,
    I have to go back and refresh my memory of your ral experiement but I think that 2 drugs is probably important.

    Here is the imfo I got from my NP on Dr. Brewers experience with RV's I received this in November so things may have changed since then:

    XMRV Treatment Comments

    Since I have received so many requests for comments regarding antiretroviral therapy for XMRV, I have put together some generic comments regarding such treatment. Please understand that these comments are simply meant to reflect the current literature and my observations in my own patients at the present time. These comments should not be construed as medical advice or treatment advice for a given patient or group of patients.
    It may be helpful to review the Singh paper (Singh et al, PLoS One, April 2010) which summarizes the in vitro activity of approximately 50 compounds against XMRV – this paper is free on the Internet. They found that three currently available antiretroviral agents were active in vitro. These drugs were zidovudine, tenofovir and raltegravir. The first two are reverse transcriptase inhibitors and the third is an integrase inhibitor. This paper also showed synergy with any two-drug combination of the aforementioned three drugs. There are now other studies that have been published that corroborate the results of the Singh paper.

    I have started several patients on therapy.* It is early.* All are on at least two drugs. Recently I have expanded to all three in a handful of cases. The question of two drugs versus three remains unresolved. Based on the HIV experience (HAART therapy), drug combinations are probably the preferred choice, albeit, XMRV may not replicate as fast as HIV and theoretically may be less prone to rapid mutation. However, I do use at least a two drug combination.
    Patients have been on meds anywhere from 2 weeks to 5 - 6 months.
    The early results have been a very “mixed bag” with some feeling worse from the drugs (usually temporary), some feeling better and some unchanged (again, it is very early).* I have tried all of the various combinations and can’t tell much difference from one combination to the next.* I usually start them sequentially, adding one at a time (interval of 2 weeks before adding the next one). I prefer not to have a patient on a single drug much longer than 2 weeks. The reason for starting slow and “phasing in” the drugs is based on the observation that most of the patients feel worse when the drugs are first initiated (sort of a “Herxheimer” type reaction). This was a bit unexpected since it is not the case with initiation of therapy in HIV patients. *I plan to go 6 months and reassess.
    I discuss the treatment with each case in detail before I start and get a verbal consent.* My personal opinion is that this is not experimental but rather off label use of these drugs for a retrovirus (of which three in vitro studies reflect the drugs are active). Doctors use off label therapies almost every day in a busy practice.
    I follow a CBC / diff, CMP and CK (if on zidovudine) monthly. I stretch that interval out to 2 – 3 months if the patient is doing well. Some lab variances are expected (e.g. macrocytosis with zidovudine). Thus far, we don’t have a “viral load” assay to follow for XMRV but hopefully such testing will be available within the next year. The most common adverse effects are in the package insert for each drug.

    J Brewer
  10. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Thanks for the info, it looks like I might have messed up. Keep us posted on dosage and start times on each if u can. Thanks and good luck
  11. pinkytuscadaro

    pinkytuscadaro

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    Sorry Jimbo,
    I forgot to post the dosage: Viread 300mg 1x a day.
    Isentress 400mg 2x a day
    Took my first dose this morning.
    Pinky
  12. jimbob

    jimbob ME/CFS84-XMRV+

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    Looks like I messed up twice, I was taking Isentress 400mg twice a day. Alright, good luck again.
  13. ukxmrv

    ukxmrv Senior Member

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    Thanks Pinky, We are all hear cheering for you!
  14. anncavan

    anncavan

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    Good luck Pinky!! Look forward to hearing all about your experience. xoxoxo
  15. Daffodil

    Daffodil Senior Member

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    hi pinky...may i ask why you are not taking Isentress twice a day like HIV patients?

    thanks
    sue
  16. illsince1977

    illsince1977 A shadow of my former self

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    Jimbob, I don't think you've messed up. Viread/Tenofovir is once a day, Raltegravir is twice a day to my knowledge as well. Isn't that what you take Daff? Isn't that what Jamie and Ali Deckoff-Jones take as well?

    And Pinky, Brewer says in what you quoted above he starts patients 1 drug at a time for 2 weeks, then adds the next one. You may be in for a world of pain if you get on them too quickly and they're actually working. Then you may need to back off. I'd recommend slowing down.
  17. undcvr

    undcvr Senior Member

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    I think you are supposed to start the 2 together, the virus has less chance to become resistant to the drug this way. I just had a friend who is hiv+ start his RVs as well. He started them all at the same time. It has been almost a month since he has been on it and he says that he has not noticed any side effects and he even feels better since being on the drugs. But that is for hiv.
  18. illsince1977

    illsince1977 A shadow of my former self

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    If Ral by itself helped, Jimbob, why didn't you get on Tenofovir/Viread also (and AZT for that matter?) Why stop short like that?
  19. Tia

    Tia Senior Member

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    Thanks for posting, Pinky! This will be interesting to follow.
  20. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Back then illsince, Ral was the only one I could get assistance for and be able to afford it. That's why I chanced taking it alone. I am going to call on the Viread this week and see if they have any kind of assistance, but I don't think it's going to be as easy as it was getting the Ral.

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