Valcyte uses 2nd,3rd or 4th courses?

heapsreal

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Finished 3 months of valcyte. This reduced my intensity and duration of my headaches alot. Hard to tell with energy as I have buggered my knee up. Worked first 4 weeks with it and been off work now about 4 weeks. So I cant rate energy.

I will say since I stopped to this current time headaches have been back and intensity worse than when on valcyte. I may see how my bloods look and run valcyte again but ......

Maybe similar to you @Lerner1 and viruses reactivate unless on valcyte????
 
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heapsreal

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Finished 3 months of valcyte. This reduced my intensity and duration of my headaches alot. Hard to tell with energy as I have buggered my knee up. Worked first 4 weeks with it and been off work now about 4 weeks. So I cant rate energy.

I will say since I stopped to this current time headaches have been back and intensity worse than when on valcyte. I may see how my bloods look and run valcyte again but ......

Maybe similar to you @Lerner1 and viruses reactivate unless on valcyte????
I've just reread this post I made at some early time in the morning through the fog and headaches and fixed some of my typing mistakes, it might be easier to understand now. I will also blame my fat fingers typing on my phone too. My sleep is messed up at the moment, more than normal.
 

Learner1

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Finished 3 months of valcyte. This reduced my intensity and duration of my headaches alot. Hard to tell with energy as I have buggered my knee up. Worked first 4 weeks with it and been off work now about 4 weeks. So I cant rate energy.

I will say since I stopped to this current time headaches have been back and intensity worse than when on valcyte. I may see how my bloods look and run valcyte again but ......

Maybe similar to you @Lerner1 and viruses reactivate unless on valcyte????
I just found this - it's Learner1, not Lerner1😉

Yes, I find the viruses return if not on the antiviral. The first time around my doctor kept me on Valcyte until I had 4 successive negative EBV PCR tests. I was off it for 18 months, then a combo of dental surgery and CVD shot reactivated HHV6, so I went back on it. That wasn't enough, so he added Famvir to beat it back Im off the Famvir, still on the Valcyte and just had EBV reactivate.

All I can say is these viruses are persistent, and any hit to your immune system can cause a reactivation. So testing and treating is important. Being on the antivirals has kept me from descending back into fatigue.
 
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Did you ever get igg tested @heapsreal it makes sense to me that those of us suffering from low immunglobulins which isn't a test that ME doctors (to my knowledge) ever run? Could cause you to relapse over and over if the body simply doesn't produce enough antibodies to keep them in check.

But I think you'd have to have defiency for that to be the case.

Just a thought anyway. If I had a checklist of things to try and figure out how to treat my ME, knowing whether I needed igg replacement therapy would be on it. Of course I'm not suggesting everyone's got that or I can't see how Dr chia or Lerners treatments would have ever worked and remissions would have lasted long term.

All the best mate
 

heapsreal

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Did you ever get igg tested @heapsreal it makes sense to me that those of us suffering from low immunglobulins which isn't a test that ME doctors (to my knowledge) ever run? Could cause you to relapse over and over if the body simply doesn't produce enough antibodies to keep them in check
Igg teats done here just say positive or negative. I have had igg subclasses tested and they were normal. In the very start of cfs I was positive to cmv but neg to ebv, 2 months later varicella and a few months later ebv igg positive, so must have picked up ebv not long after varicella. 7 yrs later I was tested again and totally negative to ebv and again 12 months later, it was as if I never had it.

Reading the book 'Oslets web' about the Lake Tahoe cfs outbreaks, it was mentioned in the book that it was a common finding that many pts lost their igg antibodies to ebv after once being igg positive. Never heard much explained about it. Clear as mud.
 

heapsreal

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I just found this - it's Learner1, not Lerner1😉

Yes, I find the viruses return if not on the antiviral. The first time around my doctor kept me on Valcyte until I had 4 successive negative EBV PCR tests. I was off it for 18 months, then a combo of dental surgery and CVD shot reactivated HHV6, so I went back on it. That wasn't enough, so he added Famvir to beat it back Im off the Famvir, still on the Valcyte and just had EBV reactivate.

All I can say is these viruses are persistent, and any hit to your immune system can cause a reactivation. So testing and treating is important. Being on the antivirals has kept me from descending back into fatigue.
I will blame my phone/autocorrect for lerner1 . I did about 18months on valcyte/famvir and then remained on famvir. From memory I stopped making progress after 6 months but remained on them out of fear of regressing. Lymphocyte subset testing I was using I recall had improved significantly.
 

Learner1

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I will blame my phone/autocorrect for lerner1 . I did about 18months on valcyte/famvir and then remained on famvir. From memory I stopped making progress after 6 months but remained on them out of fear of regressing. Lymphocyte subset testing I was using I recall had improved significantly.
Long term Valcyte has kept me well. No liver or kidney issues. Glad I could access it
 

heapsreal

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Long term Valcyte has kept me well. No liver or kidney issues. Glad I could access it
I think generic valgan is $250 a month at 1 tab a day, which id takecwith famvir also. Anything long term is out of my reach but I am waiting on Tenofovir Alafenamide which is less than $50 a month and hopefully 🤞 as effective on herpes virus as is valcyte. Time will tell.

What I call shingles headaches have been bad the last couple of weeks and feel very similar to when I had similar headaches at the end of 2019. I guess it's neuralgia/nerve but who knows.
 

2Cor.12:19

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I can’t remember exactly how long I was on valcyte - CORRECTION: Valtrex- 500 mg twice daily, but it was at least 3 months. Then I switched to famvir and was on that for several months. I discontinued because they didn’t help any symptoms and made my fatigue worse.
 
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Learner1

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I can’t remember exactly how long I was on valcyte 500 mg twice daily, but it was at least 3 months. Then I switched to famvir and was on that for several months. I discontinued because they didn’t help any symptoms and made my fatigue worse.
Wonder how you manage to take 500 mg twice a day? The pills come in 450 mg amounts. My ME/CFS specialist has me taking two 450 mg pills twice a day, And I've been at that dose for about 3 of the last 5 years. Now that the generic is available, it is less expensive, though it's not cheap.

I think one problem is people are on too low a dose and the virus just gets used to that as background noise. You need to hit it hard, and too many people quit because they don't think it works when they just didn't take a high enough dose for long enough.
Tenofovir Alafenamide arrived today. See what happens.
looks like a great drug for gaining weight;

https://www.symtuzahcp.com/dhhs-gui...BqF9F91CKuMhlNlEeKgaAq1KEALw_wcB&gclsrc=aw.ds

Looks like a good drug for chronic EBV. @godlovesatrier

https://www.pnas.org/doi/10.1073/pnas.2002392117

It can help prevent HSV2, But it's not as effective in treating it (see above link):

https://www.researchgate.net/public...tion_of_Herpes_Simplex_Virus_Type_2_Infection

I can't find any info on it's effectiveness on HHV6, CMV or zoster, though.
 

godlovesatrier

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Yes unclear for cmv and hhv-6 which is annoying.

Dr weir and Dr chia can only get it to work in 35% of patients. But that's a massive percentage of you ask me.

@Hip ran some numbers and tenofovir had the highest potency against ebv of most of the antivirals we're aware of.

I'm going to trial some and see how I go. As my ebv reactivates a lot! 4 times this year so far. 1 of which was bad. Valtrex calms it down very quickly tho even if I only take a few doses a week. Took some last night and felt like a new person 3 hours later. Which carried through until morning. And most of today.
 

heapsreal

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Wonder how you manage to take 500 mg twice a day? The pills come in 450 mg amounts. My ME/CFS specialist has me taking two 450 mg pills twice a day, And I've been at that dose for about 3 of the last 5 years. Now that the generic is available, it is less expensive, though it's not cheap.

I think one problem is people are on too low a dose and the virus just gets used to that as background noise. You need to hit it hard, and too many people quit because they don't think it works when they just didn't take a high enough dose for long enough.
looks like a great drug for gaining weight;

https://www.symtuzahcp.com/dhhs-gui...BqF9F91CKuMhlNlEeKgaAq1KEALw_wcB&gclsrc=aw.ds

Looks like a good drug for chronic EBV. @godlovesatrier

https://www.pnas.org/doi/10.1073/pnas.2002392117

It can help prevent HSV2, But it's not as effective in treating it (see above link):

https://www.researchgate.net/public...tion_of_Herpes_Simplex_Virus_Type_2_Infection

I can't find any info on it's effectiveness on HHV6, CMV or zoster, though.
Nothing is clear when it comes to cfsme. It might work by lowering viral loads to hervs or someother retrovirus. But it's a good guess and and a gamble I'm willing to try it hit vzv and cmv if its hit ebv, its very possible just no one has studied it. I will remain on famvir. But hoping it has effects on vzv and cmv.
If we wait for things to come out it studies, we wouldn't have all the anecdotal evidence here at PR. Studies are just a guide and meaningless when it comes to the individual try to get better and probably has drs that won't help, that's 98% of the world.
 

heapsreal

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What virus are you using it for? Only seems effective against EBV.
Honestly can't say other than all of them. They can't test here for chronic active viruses. Cmv and Varicella seem to be an issue. And I have responded well to the older tenofovir.
Ebv could possibly be the main infection but I test totally negative to ebv which means igg negative. Cfs onset and a year or so later I had igg antibodies to ebv and then just stopped producing them. So I could be pumping full of ebv viruses for all I know but like I said ebv igg negative. Which is strange for anyone of my age as they say almost everyone has ebv???
 

2Cor.12:19

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Wonder how you manage to take 500 mg twice a day? The pills come in 450 mg amounts. My ME/CFS specialist has me taking two 450 mg pills twice a day, And I've been at that dose for about 3 of the last 5 years. Now that the generic is available, it is less expensive, though it's not cheap.
@Learner1 I haven't heard about 450 mg valtrex pills. Mine were 500 mg. and I started out taking 3 a day but the side effects were too bad so I reduced to 2 x daily.
Mystery solved! We’re talking about 2 different drugs. I accidentally typed Valcyte - I was on Valtrex. Lol! I also recently took Valtrex - 1000 mg three times a day for 10 days for shingles.

From the patient information leaflet:
Valtrex ® 500 mg Tablets
Valaciclovir ® 500 mg Tablets
(valaciclovir hydrochloride)
 
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Learner1

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Mystery solved! We’re talking about 2 different drugs. I accidentally typed Valcyte - I was on Valtrex
Glad you figured that out. My doctor originally wanted me to try 3g Valtrex daily. Then, my insurance wouldn't approve that and my EBV PCR was positive, in addition to HHV6 and CMV, so that's when he switched me to 1.8g Valcyte daily, which is more effective for that combo of herpesviruses.