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Antiretroviral Raltegravir: Will start soon. What should I keep in mind?

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I'm thinking I will give them 3 months to see if I feel any (subjective) effects. PEM will be the key symptom I'll be 'feeling' for.

Are there any objective tests I should be considering? (I'll try to get a baseline before starting)

I'm already taking ARVs Kivexa and Viramune for HIV (for a dozen yrs; am undetectable) so I'm not super hopeful Raltegravir will do anything for me, but n = 1.

I have CMV and EBV (but not HHV6) so that's what I'm theoretically targeting with the Raltegravir.
 

Butydoc

Senior Member
Messages
790
I'm thinking I will give them 3 months to see if I feel any (subjective) effects. PEM will be the key symptom I'll be 'feeling' for.

Are there any objective tests I should be considering? (I'll try to get a baseline before starting)

I'm already taking ARVs Kivexa and Viramune for HIV (for a dozen yrs; am undetectable) so I'm not super hopeful Raltegravir will do anything for me, but n = 1.

I have CMV and EBV (but not HHV6) so that's what I'm theoretically targeting with the Raltegravir.
Hi ScottTriGuy,

The drug Raltegravir is an antiretroviral medication that probably doesn't work on CMV or EBV. There are other antiviral drugs that specifically target both CMV and EBV. I suggest you talk to your doctor to see if there is a misunderstanding concerning the reason for why you are going to start Raltegravir.

Best,
Gary
 

Hip

Senior Member
Messages
17,824
The drug Raltegravir is an antiretroviral medication that probably doesn't work on CMV or EBV.

Surprisingly, some recent research indicates raltegravir is effective against cytomegalovirus and herpes simplex virus, inhibiting replication by a 30- to 700-fold. Ref: here.

Theoretically, I read raltegravir may be effective against all the herpes family viruses, including HHV-6, EBV, varicella zoster virus. Ref: here. Raltegravir blocks the functioning of an essential protein called terminase needed for the replication of herpes viruses.

This may be why some ME/CFS patients like Dr Jamie Deckoff-Jones have seemingly benefitted from raltegravir (even though they may have initially taken this drug took to fight the retroviruses that have been speculated to be behind ME/CFS).
 

Butydoc

Senior Member
Messages
790
Surprisingly, some recent research indicates raltegravir is effective against cytomegalovirus and herpes simplex virus, inhibiting replication by a 30- to 700-fold. Ref: here.

Theoretically, I read raltegravir may be effective against all the herpes family viruses, including HHV-6, EBV, varicella zoster virus. Ref: here. Raltegravir blocks the functioning of an essential protein called terminase needed for the replication of herpes viruses.

This may be why some ME/CFS patients like Dr Jamie Deckoff-Jones have seemingly benefitted from raltegravir (even though they may have initially taken this drug took to fight the retroviruses that have been speculated to be behind ME/CFS).
Hi Hip,

Very interesting articles you referenced. I hope this stands up in a clinical trial. I still think there are other drugs available that are tested in humans for both CMV and EBV.

Best,
Gary
 

Hip

Senior Member
Messages
17,824
Very interesting articles you referenced. I hope this stands up in a clinical trial. I still think there are other drugs available that are tested in humans for both CMV and EBV.

Yes, certainly the tried and test drugs Valcyte or cidofovir, which target many herpes family viruses including cytomegalovirus and EBV, would be the ones you'd normally go for.

Though in @ScottTriGuy's case, he is on antiretroviral therapy anyway, so I think with the help of his doctor, he is just modifying his antiretroviral cocktail to incorporate raltegravir, which may then also potentially provide some benefits for his ME/CFS symptom, by targeting cytomegalovirus and possibly EBV.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Yes, certainly the tried and test drugs Valcyte or cidofovir, which target many herpes family viruses including cytomegalovirus and EBV, would be the ones you'd normally go for.

Though in @ScottTriGuy's case, he is on antiretroviral therapy anyway, so I think with the help of his doctor, he is just modifying his antiretroviral cocktail to incorporate raltegravir, which may then also potentially provide some benefits for his ME/CFS symptom, by targeting cytomegalovirus and possibly EBV.


Just a thought, any studies shown benefit to using IV acyclovir for ebv/cmv over oral acyclovir/valtrex ?
Guessing higher blood values used IV compared to orally may be an advantage?? Also probenecid could also be used for this purpose.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Yes, certainly the tried and test drugs Valcyte or cidofovir, which target many herpes family viruses including cytomegalovirus and EBV, would be the ones you'd normally go for.

Though in @ScottTriGuy's case, he is on antiretroviral therapy anyway, so I think with the help of his doctor, he is just modifying his antiretroviral cocktail to incorporate raltegravir, which may then also potentially provide some benefits for his ME/CFS symptom, by targeting cytomegalovirus and possibly EBV.

That's my intent / hope. I'm just adding the raltegravir to my existing cocktail, so I'm only changing one thing at a time. If not improvement, I'll drop the raltagravir.

The other factor is that its easier for me to get from my doc (who professes to be 'more open than other allos') ARVs than antivirals.

Thanks for your comments / info @Hip @Butydoc
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I'm still taking it but I still have ME, no impact on PEM - next time I see my HIV doc I'm going to drop 1 of the 4 ARVs I take since I only need 3 - I'd like to keep the raltegravir because its from a different ARV class but will see what she says.

ETA: the only side effect I can attribute to it is better sleep...but its kind of an expensive sleeping aid!
 

Biarritz13

Senior Member
Messages
699
Location
France
I'm still taking it but I still have ME, no impact on PEM - next time I see my HIV doc I'm going to drop 1 of the 4 ARVs I take since I only need 3 - I'd like to keep the raltegravir because its from a different ARV class but will see what she says.

ETA: the only side effect I can attribute to it is better sleep...but its kind of an expensive sleeping aid!

Hi Scott!

Very sorry it didn't impact the PEM.

Will you try Tenofovir/Viread also?