I’ve been approved for “compassionate use” of MK-0518 (Raltegravir)!
Merck will provide the drug free of charge for the duration of this access program (which basically expires once the drug receives FDA approval, probably by the end of the year). In exchange, I give Merck access to my medical information and bloodwork and they can use this information to add to the data used in making Raltegravir the most effective drug it can be.
I expect to pick up my MK-0518 as soon as tomorrow or early next week and to immediately begin a combination therapy for the HIV. This will be only the second time I’ve been on a combination therapy since May 2004. (Various toxicities and skin rashes and liver problems and other health issues and a general lack of good alternatives have prevented me from having a stable anti-HIV treatment program in place since then).
I plan to blog my experiences with this therapy as it impacts my mind, body, and spirit. I am currently feeling optimistic and hopeful, but worried, too.
I won’t be taking MK-0518 alone. I’ll also be taking three other drugs: Norvir 100 MG softgel capsules (1 capusle twice per day), Prezista 300MG (2 tablets twice per day), and Epivir (300MG Tablet, once daily).
I’m experienced with the Norvir and Epivir, and it’s a trip down memory lane that I’m not thrilled to be going down. Epivir in particular worries me, but it’s been so long since I was last on the drug I can’t remember exactly what the problem was. It might have been either pancreatitis or peripheral neuropathy (or both). If the side effects from any of the drugs are severe, then I may be forced to stop ALL the drugs so that the doctors can try to pin down which drug is responsible for the side effects. That would be a complex process and any interruption of the drug routine could bode ill for my overall success. Stopping the drugs would increase the possibilities for resistance.
I wish I were certain which side effect Epivir caused, but I know that I have also taken the drug in 1994 and 1995 (back when it was called simply 3TC) without any severe side effects. I’ll mention my concerns to my physicians but they’re not strong enough concerns to make me insist on replacing Epivir with another drug. Still, it’s a worry I wish I didn’t have.
Here are the three background drugs that will be joining MK-0518 in my drug pantheon…
Epivir.According to AIDSmeds.com, Epivir “is in a category of HIV medications called nucleoside reverse transcriptase inhibitors (NRTIs). Epivir prevents HIV from altering the genetic material of healthy T-cells. It works at a stage in the HIV life cycle when the HIV is already inside the T-cell. This prevents the cells from producing new virus and decreases the amount of virus in the body.”
Sounds good, but my virus is already resistant to it. Its presence in the pantheon is to provide a balance. It’s a class of drugs that isn’t otherwise represented, so if there’s any chance that it could be partially effective it’s a good one to include. I like to think of reverse transcriptase inhibitors as sort of like a poison that stops the virus from reproducing itself. Poison for the virus, but reasonably low in toxicity to my body.
1,000 Flowers Visualization: Reverse transcriptase is like a chain, and the Epivir is a gardening shear. It is a strong shear that breaks the chain and stops the viral weed from growing…
Prezista and Norvir. These are two protease inhibitors. I’m experienced and resistant to Norvir, but Prezista is a new one for me. Ideally, Prezista prevents cells infected by HIV from producing new virus, so it works once HIV is already inside a T-cell. The drug was approved for the treatment of HIV by the US FDA on June 23, 2006, so it’s one of the most recent drugs in my pantheon. Combined with Norvir, is only approved for HIV-infected adults who have tried other anti-HIV drug regimens in the past (and done not so well). Norvir helps the Prezista to stay at high levels in the blood, which is important for the drug’s effectiveness. It should be taken with a food.
According to this site, “Some of the patients in the trials already had cross resistance to Prezista when the trial began (due to their extensive resistance to other protease inhibitors), and this resistance got worse as they used the drug — showing the importance of having more than one active antiretroviral, instead of introducing new drugs one by one as they become available, and then often losing them to resistance.” So it’s entirely possible that because I’m resistant to other protease inhibitors my body will be resistant to Prezista from day one. Resistance is also a problem with Prezista, as missing even a single dose or failing to take a dose with food could result in an increase in viral resistance. Maintaining strict adherence to the drug dosing routine is of critical importance in making Prezista as effective as possible for me.
1,000 Flowers Visualization: Protease is like a stringy cynanide-filled poison. Protease inhibitors are like vacuum tubes that just suck out the poison capsules and leave everything else in place.
I’ll blog more on the integrase inhibitor once I have it in my possession and am ready to begin taking the new treatment. In the meantime, let’s see if I can come up with a spontaneous little prayer…
Garden shears, Epivir, may you stay strong and sharp!
Cut, cut, cut the chains that bind the noxious weeds to my garden
Do not stop until all the bonds are broken and the weeds unbound
Do not grow weary overwhelmed, for you are my friend
And together we can restore beauty to the garden of One Thousand Flowers…
What strong suction power you have, Prezista and Norvir,
Suck out the protease like poison and you will slow the growth of the putrid stalks and spears
Do not lose suction, do not give up power. You are smart,
Smarter than the weeds, you can fight back and resist them, in whole not in part,
You are not alone, and you are loved and supported. Have no fears.
Soon there will be a wheel of light in the garden of One Thousand Flowers
And there will be the strength of One Thousand Powers
Note: You can find Joe Perez's new writings on WE Spirituality.