Antivirals for MLV-related Viruses (CFS type 1 to 4)

Daffodil

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can you get free meds from patient assistance programs if you have insurance? i am not sure. jimbob got RAL free from Merck.

AZT and TDF are available cheap....someone told me that. perhaps they were referring to TDF being ordered from overseas... i will look into it.

sue
xoxo
 
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can you get free meds from patient assistance programs if you have insurance? i am not sure. jimbob got RAL free from Merck.

AZT and TDF are available cheap....someone told me that. perhaps they were referring to TDF being ordered from overseas... i will look into it.

sue
xoxo
Hi Sue, thank you :)

what I learned so far, is that for most of the programs on needymeds, your income has to be 500% below the poverty level. Insane, but true. I am at 193% (Glaxo and Merck, for isentress (Raltegravir) and viread(tenofovir).

And yes, if I have medicare (and I do), I am exempt from receiving them as well. These include Glaxo, and Merck.

It's true, AZT is almost free for me.

I am hoping by the time I get to a doctor that will presribe them for m, that additional options may surface besides Isentress and Viread, that may help as an alternative until medicare/humana gets the generics for isentress and viread.

I so appeciate your input and help.. Thank you!

˙·٠•●♥ ᙬٱٱᙩ ♥●•٠·˙

ps. What I am also considering is to start with a half dosage regiment for the raltegravir. It's the deal breaker for me. Who knows, it could be effective?
 
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I love your idea of half dosage. Would this mean cutting the pill in half because I don't think the dosage comes less than 400mg. It is a coated pill but I don't think it is time release. I wonder if it would hurt the stomach if cut in half.
 

Rrrr

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Rrrr,

I talked to Humana today, and AZT, Tenofovir and raltegravir are covered for me. AZT and Tenofovir are Tier3's and the Raltegravir is a tier4.

I askes her SPecifically if Humana would require a pre-authorization, and/or if my doctor just needed to write the perscriptions. Her answer was: "No" on th epre-authorization. I am confident that all we need to do is have the prescription. EDIT: I just saw this under 'coverage' on humanas web site for Isentress:

"Prior Authorization: Your doctor must obtain approval from Humana before we can cover a prescription that requires "prior authorization."
"

lawls.... so, who really knows.

EDIT: I am confused by what teh web site is telling me vs. what she said. The web site says there is no generics for Viread (Tenofovir) and Isentress (Raltegravir), and uit shows me a price, but I have no idea if the price represents what I will pay, or the price that is covered. arg. She was very very sure I was coverred, so I am thinking I am, but in the meantime, I have the forms from Needymeds.org to apply for coverage if necessary. :worried:

EDIT2: Confirming with Humana/Medicare yet again, there's no way I can afford the brand names Isentress (Raltegravir) and Viread (Tenofovir), and they do not carry the generics.

goodgrief. Here's teh pricing:

Pricing - VIREAD (Tenofovir)
Dose & Form: 300 MG TABLET (edit) Tier: Tier 3
Quantity: 90 for 90 Day supply (edit) Coverage: Covered
Generic: N/A Your Plan: Ind Med MA PD PFFS
Mail Order Pharmacy Drug Days Supply Total Drug Cost Your Cost*
RightSourceRx
Enjoy the convenience of Humana's
prescription home-delivery by mail. VIREAD 90 $1,953.96: my price for 90 days= $200.00'ish
Best Value!

Pricing - ISENTRESS (Raltegravir)
Dose & Form: 400 MG TABLET (edit) Tier: Tier 4 Quantity Limits: 60 for 30 days
Quantity: 180 for 90 Day supply (edit) Coverage: Covered
Generic: N/A Your Plan: Ind Med MA PD PFFS
Mail Order Pharmacy Drug Days Supply Total Drug Cost Your Cost*
RightSourceRx
Enjoy the convenience of Humana's
prescription home-delivery by mail. ISENTRESS 90 $2,840.88 my price for 30 days $1,172.08

Viread is a Tier 3 drug, so the co-pay is $80.00 for 30 days, until I reach a max of $2830 (and go into stage 2).
Isentress is a Tier4, so I pay 33% or about $400.00 for 30 days.

at any rate, I can't even afford he stage 1 price, and would have to have another 4,550 out of pocket for stage 2, until I pay 5% for any tier drug.

Hope this helps others with humana/medicare.

needymeds.org <---- maybe this url can help someone


:sofa:
wait a minute, these are the prices WITH medicare paying for the drug???
 
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wait a minute, these are the prices WITH medicare paying for the drug???
yeah.... it sure is.

Again, the Tier 3 drugs co-pay is $80.00 during phase 1, and in phase 2, it's 100% until you pass through phase 2 (After out of pocket amount of $4550.00), into phase 3, and there you pay just 5% for ANY tier drugs.

Tier 4 (All brands, no generics, and again Humana.medicare do not have the genercis for isentress (Raltegravir), and tenofovir (Viread)) is 33% of total cost until phase 2, then 100% in phase 2, then 5% in phase 3.

The Isentress is a complete deal breaker for me financially, and Sue, the dosage I talked about? It's not a good idea, due to the fact that the lower dosages could potentially not stop the viurs, because it could mutate. That's what I have heard in two places now.

But, don't lose hope. There is a possible answer if your like me and barely outside of all the requirements for discounted or free medications. It's called "Canada". I will find out more here and let you know.

I can handle the $80.00 a month for the tenofovir, and paying that will not push me into phase 2 at any time during the year, and AZT is free. So raltegravir is the one I will seek outside (but still acredited) the US, probably Canada. I am ont out of the woods yet, and still am not sure if humana/medicare will require pre-authorization, but if that is the case, bloodwork coupled with intel about how AZT and tenofovir will help just might be enough for them; if it is not,then it may be Canada for both the tenefovir and raltegravir but again, not sure I could afford them both. I'll be ready to fill prescriptioons in late October, so I have some time to sort it all out.

Also, there's so much we do not know about All teh HIV meds, and how some others may be effective for ME/CS as well. There could be upcoming information about alterenatives that might help. it's early, so keep positive! And if I cannot do this financially, I Will be trying other Generic AVR's I can afford, that can be filled here in the US or in Canada.

Hope this helps you all....

:sofa:
 
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can you get free meds from patient assistance programs if you have insurance? i am not sure. jimbob got RAL free from Merck.

AZT and TDF are available cheap....someone told me that. perhaps they were referring to TDF being ordered from overseas... i will look into it.

sue
xoxo
I heard Canada is very affordable (comparatively), as in roughly 250 a month, iirc (If I recall correctly). That said, I will start researching this today, and post here if/when I find good news.

I will be getting my prescriptions in October, and I am hoping by then, I can either get a good source ooc (out of country) for Raltegravir/Isentress, and/or an alternative. I will also post that information. I know it's a fact tht most I have discussed this with, thinks raltegravir is the bomb, so to speak, but there just might be something else that is not so nwe on he market, that may fill it's shoes, until Humana/medicare covers the generic.

EDIT: There appears to be 2 additional integrase inhibitors besides raltegravir:

Integrase Inhibitors:
Isentress (raltegravir, MK-0518)
GSK-572
Elvitegravir (GS-9137)

Unfortunately, neither the GSK or Elvitegravis are currently on the market, just in phase 3 trials.


Of course, this is all dependent on if they do not ask for pre-authorization, or an HIV diagnosis for the meds. And/or if it 'might' work to use the blood work as the authorization.

We'll see.
 
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NOTE: I am re-posting with information in a better continuity form regarding accessible HIV class combinations if you are using Humana/medicare, and/or not eligible for needymeds.org, and/or rxhope (Thanks again Sue!)

"Doctors have not yet discovered a single combination of HIV medications that's best for everyone. Each combination has its advantages and disadvantages. Unfortunately, researchers can't compare the hundreds of possible combinations of individual medications. Instead, they usually try to compare combinations of classes of medications. Three class combinations are commonly researched and prescribed today for people starting HIV treatment:

-- One NNRTI plus two NRTIs **
-- One "boosted" PI plus two NRTIs ++
-- One integrase inhibitor plus two NRTIs "

Most commonly prescribed HIV Meds that are easily (and/or at least easier) coverred by humana/medicare, and are in the combinations ** and ++ above. I am leaving out the Integrase Inhibitor option that would include Raltegravir/Isentress and it's not affordable for most via Humana/medicare.

I have also approached my doc on this, and asked if there are any MLV+'s using the combinations without Integrase inhibitors. More when/ifI get an answer.



Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs)
Nucleoside reverse transcriptase inhibitors, NRTIs, work by stopping the process of reverse transcription. Reverse transcription is the process by which HIV copies its own RNA into DNA that can alter the behavior of immune system cells. According to an article published in the July 21, 2010, issue of "The Journal of the American Medical Association," current treatment guidelines pecify that HIV medication regimens should contain two drugs from the NRTI class. Tenofovir and emtricitabine are the most ommonly prescribed NRTIs. A fixed-dose combination of these two medications is available under the trade name Truvada.

--- Retrovir (AZT)
--- Tenofovir



NNRTIs
In addition to the two NRTIs, an HIV medication regimen should contain a third drug of a different type. Non-nucleoside reverse transcriptase inhibitors, NNRTIs, also inhibit reverse transcription, but they do this using a different mechanism than the NRTIs, according to the text, "Harrison's Principles of Internal Medicine." Because the mechanisms are different, NNRTIs can be used effectively as a third drug. The most commonly prescribed NNRTI is efavirenz, says "JAMA." Efavirenz, along with tenofovir and emtricitabine, is available as a fixed-dose combination pill under the trade name Atripla.

--- Sustiva is coverred by Humana. $33.00 a month.

PIs
Protease inhibitors, PIs, are another class of medications that can be used as the third drug in an HIV regimen. PIs inhibit HIV from assembling the proteins it needs to replicate itself. PIs have a tendency to cause cholesterol problems, but unlike NNRTIs, they can be given only once a day. So they are sometimes prescribed as a third drug in patients for whom adherence to a medication schedule is a problem. Atazanavir is the most commonly prescribed PI, because it has less potential to cause cholesterol problems than other PIs, according to "JAMA." Like all PIs, atazanavir is more effective when taken with small amount of another PI called ritonavir. Lopinavir is the only PI available as a single pill combined with ritonavir, sold under the trade name Kaletra, so sometimes it is prescribed instead of atazanavir for patients who have difficulty keeping track of multiple medications.

Reyataz -- $33 a month and adding ritonavir ($200.00 for 90 days) is more effective.

Intergrase Inhibitors (But I am not using this as a combination option for the purposes of Humana/medciare drug accessibility and affordabilty)

-- Raltegravir/Isentress


Read more: http://www.livestrong.com/article/186953-most-prescribed-hiv-medications/#ixzz0yxDIcelH
 

August59

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can you get free meds from patient assistance programs if you have insurance? i am not sure. jimbob got RAL free from Merck.

AZT and TDF are available cheap....someone told me that. perhaps they were referring to TDF being ordered from overseas... i will look into it.

sue
xoxo
Has anyone looked into "rxhope.com"?
 

heapsreal

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with intergrase inhibitors it says it stops entry of hiv into cd4 lymphocytes, what i want to know is, does xmrv/mlv infect our cd lymphs, a low cd4 count isnt always occurring in cfs patients, alot of the time all our lymphocytes are elevated. Im thinking that xmrv/mlv may infect nk cells as this is the most common immune abnormality of cfs people, so would intergrase inhibitors stops xmrv entering nk cells, i think maybe what we need is drugs(antiretro) that stop nk cell dysfunction, if this is the case then maybe we just need drugs that stop xmrv/mlv replication.

This is just my thoughts thrown out there.

cheers!!!!
 
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with intergrase inhibitors it says it stops entry of hiv into cd4 lymphocytes, what i want to know is, does xmrv/mlv infect our cd lymphs, a low cd4 count isnt always occurring in cfs patients, alot of the time all our lymphocytes are elevated. Im thinking that xmrv/mlv may infect nk cells as this is the most common immune abnormality of cfs people, so would intergrase inhibitors stops xmrv entering nk cells, i think maybe what we need is drugs(antiretro) that stop nk cell dysfunction, if this is the case then maybe we just need drugs that stop xmrv/mlv replication.

good thoughts! And it is something I plan on learning, or hearing from my doc about. I wonderred about that too, and I wondered hat blood work is being used to track viral loads etc...

This is just my thoughts thrown out there.

cheers!!!!
good thoughts! And I am wondering as well, and plan on hearing about it when I visit my doc. I also am curious what labs they are pulling to check on viral loads (where are they hiding out in MLV's? NK's?). I think there is still work on where he resevoirs of the loads are.

I have asked this of my doc, and will post when I learn anything.

Thanks for this!
 
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Has anyone looked into "rxhope.com"?
oooo Thank you Sue, I had not, and will definantly add it at the top of me 'possible' list after reading teh FAQ's! It works at a lower rate percentage of the state/federal poverty guidelines (So instead of having to be 500% below the poverty levels, it could be less, and it could be just income level guidelines they use. It depends on the pharm they work with given the drug needed.)

"PAP programs are administered differently by manufacturer and sometimes by drugs within the same manufacturer. In most cases the programs are designed around income guidelines. Most often income has to be below or just above the poverty guideline set by the federal government. There are some companies that go as high as 2-3 times the poverty guidelines. Poverty guidelines can be found on the state/federal assistance link on RxHope."

I havent discoverred the "state/federal assistance link " they speak of yet. =p

Thank you so much Sue, this is a much better fit for me than anything I found on needymeds.org!
 
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Sorry but when will he have a reliable test that picks up all the MLVs? Right now we can only test for XMRV, is that correct?
 
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Speculating here....I've recently read gammaretroviruses spend the majority of their lifecycle in the post integrative latent phase. This may be the reason why HAART is not a totally effective treatment.
Could the reason Dr Deckoff-Jones and her daughter are responding well to HAART be due to the fact that the gammaretrovirus is being stimulated out of the postintegrative phase by the use of hormone therapy? I've noticed they both are taking hormones and it is accepted hormones stimulate the activation of XMRV.
 

Hip

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Speculating here....I've recently read gammaretroviruses spend the majority of their lifecycle in the post integrative latent phase. This may be the reason why HAART is not a totally effective treatment.
Could the reason Dr Deckoff-Jones and her daughter are responding well to HAART be due to the fact that the gammaretrovirus is being stimulated out of the postintegrative phase by the use of hormone therapy? I've noticed they both are taking hormones and it is accepted hormones stimulate the activation of XMRV.
An interesting thought.
 

xrayspex

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I wondered why Dr Jamie and her daughter were taking hormones when Mikovitz said they stimulate the virus. Unreal what westozgirl thought of, so many layers and angles of coming at it.

Someone mentioned trying to find out which mlv they have, does anyone know how to do that yet? I just got back after 2 mo.s my xmrv test result from a virus culture, I didnt get serology too. but I would like to know more detail about it of course. I don't even know who I might try to work with or what I want to do,but I am just glad to know for a start.
 

Daffodil

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the VIP serology test currently offered, apparently picks up XMRV and the related MLV's found in the Lo/Alter study.