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Valcyte- Feel Terrible

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Warriors61, Jul 18, 2018.

  1. Warriors61

    Warriors61

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    I have been on Valcyte 900 mg/day and Famvir 1000 mg/day for 6 months, and suddenly I developed severe headaches, weakness, sore throat, and swollen glands. I stopped the medications, but 6 weeks later I still feel terrible. My blood chemistry panel is normal. My doctor is more of a Lyme specialist, doesn’t seem to know what to say about it. It would take 6-12 months to see someone at Dr Montoya’s clinic at Stanford. I am losing hope, fear that this might be a CFS/ME relapse as opposed to a temporary Herx.

    1. Have others had a Herx or Iris reaction like this on Valcyte?
    2. Is this a sign that the meds are working?
    3. How long might this last since I stopped the antivirals?
    4. What can I take for severe headaches (Advil doesn’t help)?
    5. What should I take to boost my immune system?
    6. When might it be good to go back on the Valcyte and Famvir?

    Thanks so much for your help!
     
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  2. Forçe e Honra

    Forçe e Honra Senior Member

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    I'm so sorry i don't have much to offer but for severe headaches, Excedrin for Migraines is the only non prescription drug that can help me. Ibuprofen, Acetaminophen, Aspirin - none of those alone can touch them. Excedrin for Migraines is a combo of acetaminophen, aspirin and caffeine. Make sure you don't exceed the dosage and drink a full 8 ounce glass of water. I also find being in a dark room, low or no noise, infrared heating pad on the back of my head/neck/shoulders - and coconut water and even better, Gatorade - these are all crucial for me. You can try rice in a sock, heating in microwave if you don't have a heating pad it provides nice moist heat.

    Also, if you are considering Stanford, have you considered the Center for Complex Diseases or OMI (same area)? You may be able to get in much sooner. I am a patient at the Center for Complex Diseases and can not say enough good things about Dr. Kaufman.
     
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  3. Forçe e Honra

    Forçe e Honra Senior Member

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    Were you getting safety labs done once a month or every 3 weeks while on Valcyte? (it is necessary to monitor for side effects) (I realize you said your blood chemistry was normal but just trying to make sure the specific safety labs that are required were done)
     
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  4. Warriors61

    Warriors61

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    Thanks for your notes! I haven’t tried Excedrin, so I appreciate the suggestion. I was also thinking about Celebrex or Low Dose Naltrexone if I can get a prescription. Do you know about those?

    Also, I will definitely see what the availability is at the Center for Complex Diseases- that’s wonderful to know that there is another option out there.

    I have gotten blood chemistry panel and complete blood count every 4 weeks. Everything has been normal.
     
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  5. Ema

    Ema Senior Member

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    All that sounds like viral reactivation, especially if your labs are all normal. I'm not sure that stopping antivirals is the best course for a viral reactivation. I'd talk to your doctor about starting them back up, I think, and maybe even increase the dose. Lerner had me on Valcyte 1800/day and Famvir 4g/day for some time, so it would seem like there is room to increase if your doctor thinks it is wise.
     
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  6. Warriors61

    Warriors61

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    Did you have a viral reactivation while you were on those meds? How long did it last? How long were you on Valcyte and Famvir, and did they help you?

    Thanks so much!
     
  7. Stretched

    Stretched Senior Member

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    New study supporting use of Advil and Tylenol together yields affectiveness of opioid treatment (see Google and UCLA). I tried your dose of Valcyte twice, for 30 days each time. I ended up with same symptoms as you. I gave up the ghost and switched to the Prigden protocol of Famvir and Celebrex and actually felt better.

    FWIW, I also tried antiretroviral combo and had the same reaction as Valcyte. IMHO, I don’t think these routines are what they’re cracked up to be - more detrimental than
    supportive. I say try to get back to baseline over the next week or so. Good luck, and hang in there. The residual Valcyte will pass out of your system.
     
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  8. Forçe e Honra

    Forçe e Honra Senior Member

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    Just make sure it is the Excedrine for Migraine (different formulation than Excedrine). I hope it helps :) I haven't tried Celebrex, but LDN helps me immensely although I don't think it helps my chronic migraines (but that may be because the cause of my migraines is something no med can fix not sure yet).

    Good that your bloodwork was checked.

    Here is a link for the CCD:
    https://centerforcomplexdiseases.business.site/

    I wish you luck and better health. :)
     
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  9. Forçe e Honra

    Forçe e Honra Senior Member

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    While this was not directed to me, just wanted to share I've been on Valcyte for 6 months, I have had no side effects and it has helped me a lot. I had EBV viremia, which is serious - while already on Valtrex and added Famvir to try to get under control and could not. It was not till Valcyte that we got it down finally though I also have other viral stuff going on.

    But I believe each of us is unique and respond differently to different treatments.
     
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  10. Wonkmonk

    Wonkmonk Senior Member

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    I hope I am not confusing you, but I had a similar experience with Valtrex. After 4 months of high dose according to Dr Lerner's method (6 grams a day), all my symptoms worsened dramatically and I developed new symptoms I never had (moderate to severe back pain and pain in the kidney area with GFR going down to about 60, normal is >90). Most of the symptoms persisted after stopping Valtrex (GFR recovered, though), so I thought it must be something else.

    It took me a while to find out that most of those symptoms were because I had a lot of calcium in my diet (more than recommended per day) and it was getting summer and I was sunbathing a lot and my Vitamin D was getting higher, so the calcium got absorbed even better. I then realized that high calcium intake is making me worse and not the Valtrex. I lowered my calcium intake, stopped all Vitamin D supplements and limited sun exposure and the symptoms were getting better. I could restart Valtrex later, even at a high dose (now I take lower doses).

    I am not saying that this is what is going on in your case (it probably isn't the same thing), but maybe there is another factor that makes you worse and it's not the Valcyte/Famvir.

    After 6 months, it's rather unlikely that it's a herx. According to Dr Lerner, a herx happens in the first 2-6 weeks. And it would also be strange if the Valcyte side effects developed so late in the treatment without anything showing up in the blood tests.

    So maybe it's something else entirely.
     
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  11. Stretched

    Stretched Senior Member

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    I think Gingko Biloba is supposed to help migraines. You might check it out along with
    dosage. “...Also, magnesium and B-6. ...Migraine sufferers have low tissue serotonin (low serotonin syndrome). Low serotonin may cause decreased pain threshold. Positive clinical results are seen with serotonin precursor 5-hydroxytryptophan (5-HTP) (Textbook, “5-Hydroxytryptophan”). Link between low serotonin and headache is the basis of many migraine prescription drugs,” from Clinician’s Handbook of Natural Medicines. ‘Hope this helps,)
     
    Last edited: Jul 18, 2018
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  12. Warriors61

    Warriors61

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    That is really interesting, worth considering that there is a viral reactivation, and that staying on the medications may be wise. But, it is also confusing because I have read on this forum that these terrible symptoms which develop in response to Valcyte may be due to a Herx or IRIS reaction, in which case it is suggested to back off on the medications for a while. How does a person figure out which it is and which direction to go in- stay on the meds or take a break?
     
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  13. Warriors61

    Warriors61

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    Did you have a viral reactivation while you were on those meds? How long did it last? How long were you on Valcyte and Famvir, and did they help you?
     
  14. Forçe e Honra

    Forçe e Honra Senior Member

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    Thanks. My neurologist put me on magnesium to help prevent them. I have to run anything new to take by my specialist as I take a lot of prescribed meds and supplements - and we are just unraveling the underlying causes of my illnesses. This is interesting information and I'll add it to my growing list of resources.
     
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  15. Warriors61

    Warriors61

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    Thanks so much for this idea! I have never tried them together, but it makes sense that it would work better than either one alone. This is similar to the Excedrin for Migraines that someone mentioned earlier, except that product is aspirin and Tylenol, and it also has caffeine.

    Also, thanks for sharing your experience with Valcyte. I have heard about the Pridgen protocol, and I will definitely ask my doctor about it. In the meantime, thanks for the support. I sure hope I feel better soon.
     
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  16. Warriors61

    Warriors61

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    Thanks again! I really appreciate your suggestions, and will definitely follow up on them. Also, thanks for the support- I hope to feel better soon...
     
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  17. Warriors61

    Warriors61

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    Thanks so much for your thoughtful response. It seems like there are so many different reactions that people have to antiviral medications. I have heard that others have had Herx or IRIS type reactions as early as 1 month and as late as 6 months. So, it is really hard to tell if that is what I experienced at 6 months, or if it was a viral reactivation as someone suggested earlier. Of course, it could be something entirely different, as you experienced, but it seems related to the Valcyte and Famvir. I agree that it was too late in the treatment for it to be a medication side effects.
     
  18. Warriors61

    Warriors61

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    Thanks for your suggestions. I do like to try herbs and nutritional supplements, not just rely on medications. I think that my headaches are more tension headaches than migraines, so I wonder if the serotonin idea also applies to tension headaches. Thanks again.
     
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  19. Ema

    Ema Senior Member

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    I did not, I was on them for at least two years. They did not help me as much as I had hoped, but I do not regret trying them.

    I wonder if colchicine would be a good fit in this case, since it helps with inflammation?
     
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  20. Warriors61

    Warriors61

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    Thanks for your reply. I’m sorry to hear that they did not help you!
     
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