Severity of ARV side-effects vs severity of CFS

[Sasha]

I was just reading Dr Deckoff-Jones's latest blog post about her and her daughter's success with ARVs.

I've seen a lot of people mention that ARVs have terrible side effects but that HIV+ people take them because the alternative is death.

On the other hand, I've read Dr Nancy Klimas's statement that her HIV patients are hale and hearty on their HIV meds while her CFS patients are terribly ill, and that given the choice, she'd rather have treated HIV than untreated CFS. And as well as Dr D-J, I know of many HIV+ people leading full lives, holding down jobs, etc.

I am completely ignorant of ARVs and what side-effects people with HIV endure. But given that so many people with HIV appear to be doing so well, can anyone provide a picture of how bad the side effects are/what percentage of people on ARVs are affected by which side effects and to what extent? Or shed any further light on these conflicting pictures? Should PWC who are XMRV+ be eagerly anticipating getting ARVs, if the whole XMRV thing pans out, or dreading the dilemma of whether to take them or not?

 

[Mya Symons]

I am completely ignorant of ARVs and what side-effects people with HIV endure. But given that so many people with HIV appear to be doing so well, can anyone provide a picture of how bad the side effects are/what percentage of people on ARVs are affected by which side effects and to what extent? Or shed any further light on these conflicting pictures? Should PWC who are XMRV+ be eagerly anticipating getting ARVs, if the whole XMRV thing pans out, or dreading the dilemma of whether to take them or not?

My doctor just gave me a lecture on this. I wasn't completely listening because I was pissed, but I did hear the part about organ failure. Apparently, these medicines are very hard on the kidneys, liver and heart and many people experience damage to one or more of those organs. She didn't give me the statistics on this, however. I wonder if it is any greater than it would be for any other medicine that has these potential side effects.

Antiretroviral Therapy-Associated Adverse Effects and Management Recommendations: http://img.thebody.com/hivatis/pdfs/table12.pdf
Managing Long-Term Side Effects of HIV Therapy http://www.thebody.com/content/treat/art40471.html

 

[Daffodil]

the affects on the organs of a long standing retroviral infection have to be worse!!

 

[Mya Symons]

the affects on the organs of a long standing retroviral infection have to be worse!!

Isn't CFS connected to Mitral Valve Prolapse and, in some cases, brain damage? If I had to choose between kidney and liver damage vs. brain and heart damage, I would probably choose the kidney and liver damage.

 

[Sasha]

Isn't CFS connected to Mitral Valve Prolapse and, in some cases, brain damage? If I had to choose between kidney and liver damage vs. brain and heart damage, I would probably choose the kidney and liver damage.

I didn't know that. I wonder if one of the difficulties is going to be that there haven't been many (any?) long-term prospective studies of well-defined, representative cohorts of PWC so we might not know the trade-offs.

I also wonder whether it's possible to monitor kidney/liver function as you're taking ARVs so you can at least tell if damage is happening and you have a chance to stop or switch therapies or something.

 

[Daffodil]

my doc says we will know if damage is occurring with regular bloodwork, but even if damage is occurring i dont have a choice anyway - i have to stay on the drugs.

i am hanging on to the hope that there will be safer meds in a few years.

a virologist told me we will have to probably put up with the same downstream sequelae that HIV patients have to put up with......but isnt this virus far less cytotoxic than HIV? i don't hear about most HTLV -1 patients having to deal with that much. i know a small minority get neurodegenerative problems and cancer, but the vast majority seem to live relatively healthy lives, even untreated. they do die earlier, though.

Sue

 

[Mithriel]

It bothers me, all this concern about the nasty effects of antiretrovirals, when doctors dish out antidepressants to patients like sweeties and some patients have even been forced to take them or lose their benefits because they "aren't trying to get better".

The favoured treatment of graded exercise has been shown in every survey to make 50% of patients worse even to the point of become wheelchair bound or bed ridden. And yet antiretrovirals are so bad that papers must be rushed out in case the poor patient is tempted to take them and gets a side effect?

The hypocrisy makes my blood boil.

Mithriel

 

[jenbooks]

I used to get IV drips in NYC at a doctor who had specialized in alternative/complementary therapies for HIV patients (IVIG, nutritional drips, chelation). Two of them had bad heart attacks in their 40's, from the protease inhibitors. There are definitely side effects--it's just not something you can avoid if you have to take the drugs, that's all.

If Ampligen would work, it seems much safer.

 

[BEG]

I'm looking 6:tear: square in the eye like a gun barrel. I can't afford to wait around for a decade??? of tests and trials. What, get my health back at 70? I'm sick of my mush brain, not being able to go anywhere, the pain, losing weight, loss of appetite, exhaustion, etc. I want to get in a trial or get the drugs. My heart isn't too great anyway with the POTS and all. I consider myself not to have been alive the last ten years.

 

[Daffodil]

i dont think AZT, TNF, or RAL are protease inhibitors...

 

[SOC]

I think the answer to this question will come from the specialists who treat HIV routinely. They are the ones who know the facts about current antiretroviral treatment. Most general physicians are going by 1) old info, 2) info they read on the warning labels, 3) what they were told in medical school about these drugs being too dangerous for them to prescribe (it should be left to specialists who have experience and can monitor appropriately).

My PCP freaked out when I asked if he would consider prescribing Valcyte. The warning label scared the pants off him. Add that to the fact that he wouldn't (and shouldn't) prescribe a powerful medication like Valcyte for someone who isn't really sick (that part unspoken, of course), and he wouldn't even think about it, much less read the research.

I've been on Valcyte for more than 6 months and none of the scarey things (neutropenia etc) have happened. Dr Lerner monitors us very carefully so we can avoid the problems (as Daffodil mentioned her doc does with antiretrovirals). I feel A LOT better now than I did when I started. Anyone who wants to take away my Valcyte will have to pry it out of my cold dead hands. I expect many PWCs will feel the same about their anitretrovirals.

The people who are suggesting that antiretrovirals are too dangerous for us are, I think, still thinking of us as "tired people". They're not seeing those of us who are severely limited or developing life-threatening neurological or cardiac conditions. That said, for those who can manage their quality of life, it makes sense to wait a bit to see which antiretrovirals work best.

 

[Sasha]

Anyone who wants to take away my Valcyte will have to pry it out of my cold dead hands. I expect many PWCs will feel the same about their anitretrovirals.

Keep those hands alive, Sickofcfs (oops, nearly called you Sockofcfs there due to a typo - perhaps that could be your new name, once you've socked your CFS? ).

Seriously, that's very encouraging! I just read in some of the press coverage today one of the experts saying that ARVs were "well tolerated". If this is a conflict between out-of-date info from generalists vs up-to-date info from experts, that is maybe part of an explanation for the difference in what's being said. On the other hand, I think even Dr Klimas warned PWC that ARVs were "very toxic" (not sure if that's an exact quote).

I'm glad you are feeling so much better!

 

[jenbooks]

i dont think AZT, TNF, or RAL are protease inhibitors...

Sorry, I don't know if they were on protease inhibitors--I thought those were the new class of HIV drugs in the last five or ten years? I don't know a lot about HIV drugs. In any case, they were on HIV HAART therapy and had heart attacks. One recovered fairly okay though he later died of drug resistance. The other didn't recover well.

 

[BEG]

I've been on Valcyte for more than 6 months and none of the scarey things (neutropenia etc) have happened. Dr Lerner monitors us very carefully so we can avoid the problems (as Daffodil mentioned her doc does with antiretrovirals). I feel A LOT better now than I did when I started. Anyone who wants to take away my Valcyte will have to pry it out of my cold dead hands. I expect many PWCs will feel the same about their anitretrovirals. .

Me, too, Sickofcfs. I'm glad you're feeling better.:Retro smile:

As for your typo, Sasha, I laughed right out loud while speaking to my daughter on the phone.

 

[SOC]

Keep those hands alive, Sickofcfs (oops, nearly called you Sockofcfs there due to a typo - perhaps that could be your new name, once you've socked your CFS? ).

LOL! I like it!

Seriously, that's very encouraging! I just read in some of the press coverage today one of the experts saying that ARVs were "well tolerated". If this is a conflict between out-of-date info from generalists vs up-to-date info from experts, that is maybe part of an explanation for the difference in what's being said. On the other hand, I think even Dr Klimas warned PWC that ARVs were "very toxic" (not sure if that's an exact quote).

Agreed. I didn't mean to imply that ARVs are innocuous, or even that all PWCs should take them now if they could. My tone was perhaps more optimistic than my thoughts. I think it's more a question of knowing the full story and comparing it to the current illness state of the patients. I have no doubt that ARVs are powerful medications with very serious potential side effects. I'm also concerned that some of the ARVs that have been shown to be effective with XMRV are some of the earlier ones which are more toxic than some of the newer ARVs --- don't KNOW, just thinking.

I'm glad you are feeling so much better!

Me, too! It's like heaven! If I thought it was physically wise, I'd spend half my day in a happy dance.

I made a simple dinner and I wanted to email everybody I know, LOL
I went out of the house, at least a bit, every day this week. I feel like there should be headlines. :victory:

I'm still pretty sick (4.5 on Lerner's scale, I think), but it's SO MUCH better that it's a major high.

 

[alice1]

i'll be speaking with dr klimas in a few weeks and i'll try to get the low down on what meds she's going to suggest her patients that are mlv,xmrv, abcd.in one of our conversations she did mention ampligen being 1 option.
those of you who are doing well on the anti-virals that's fantastic.
sue i did read in the papers that because of the possibilities of clusters of viruses this may be the reason why some people had negative blood work to xmrv which can be false negatives.at some point you should test again...when they figure out the clusterf^&k!!

 

[Sasha]

Okay, I'm sharing my wild-@zz guess on MLV treatment for the next year or so -- and I'm planning my daughter's and mine treatment around this guess, so I hope it's somewhere close to right, lol! I'm basing it largely on what we know about early HIV treatment, which may turn out to be completely inappropriate, but hey, ya gotta have a goal.

Since we don't know for sure which ARVs are going to be the safest (least toxic?) and most effective against these MLVs, it makes sense to wait until the science gets a little further along before we start ARVs, if we can manage to. Soooo, it's a good time to start treating "secondary infections" with ABX and antivirals. That's how HIV patients were treated in the pre-ARV days.

We don't have to take ARVs to get better treatment now. Some of us, anyway. Given that there's a VERY HIGH likelihood we have a retrovirus, how does that affect the analysis of our pathogen tests? How would the doctor assess our labwork if we were HIV patients? A high EBV titre may be irrelevant in a healthy person, but would a doctor consider it unimportant in a retrovirus-infected patient? We need to ask these questions.

We can ask for immune function tests. We can ask for referrals to doctors who treat retroviruses. They will be better able to assess our health in the context of a retrovirus.

Let's not forget that most of HIV/AIDS patients' overt symptoms are the result of the secondary infections. The same could be true for us. Treat the secondary infections and you'll feel better. You won't be cured, or recovered, but you'll be better (and doing your body less damage) while you wait for the right ARV treatment.

On the other hand, if you live in that ME/CFS hell called the UK, you may not be able to do any of this given Wessley's stranglehold on everything ME/CFS.

That's a very interesting approach - even in the UK, if we at least get an XMRV diagnosis, we can maybe get referral to an HIV clinic. By the time a sensitive and specific test is availble in the UK, the research will have moved on anyway and we might be much nearer to causation having been proven.

Glad you like your alternative name! It's how I shall always think of you from now on! :Retro smile:

 

[urbantravels]

I think the answer to this question will come from the specialists who treat HIV routinely. They are the ones who know the facts about current antiretroviral treatment. Most general physicians are going by 1) old info, 2) info they read on the warning labels, 3) what they were told in medical school about these drugs being too dangerous for them to prescribe (it should be left to specialists who have experience and can monitor appropriately).

...

The people who are suggesting that antiretrovirals are too dangerous for us are, I think, still thinking of us as "tired people". They're not seeing those of us who are severely limited or developing life-threatening neurological or cardiac conditions. That said, for those who can manage their quality of life, it makes sense to wait a bit to see which antiretrovirals work best.

Very well put. Before they diagnosed me, my HMO sent me through many specialists including an ID doctor. Ironically enough, though he was the doctor I actually liked best - very smart, and didn't talk down to me because he said he could tell I was an "intelligent person" - he was also the only doctor to tell me that he doesn't really believe CFS exists, or at least that he doesn't believe it has an infectious cause.

What I did learn from him is that at my HMO (Kaiser Permanente, a major HMO in many US states) HIV positive patients are assigned to ID doctors as their primary care physicians. So *every* decision about their care is made by a doctor who is expert in treating HIV+ patients, knows the implications of what you do in a 'healthy' person versus what you do with someone with this underlying condition, and is expert in handling the HAART drugs and their side effects. So many advances have been made in HIV drugs, I think it's very true that today's regimes are much better tolerated than the early versions, and patients and doctors have more options than they used to.

I can envision a future in which ME/CFS patients are handled the same way. Can you imagine? - having a PRIMARY CARE doctor who thoroughly understands your condition, how to interpret your test results and symptoms in light of it, and how to manage your drugs and treatments? I know it's a crazy dream, but it sounds like heaven!

 

[leaves]

i'll be speaking with dr klimas in a few weeks and i'll try to get the low down on what meds she's going to suggest her patients that are mlv,xmrv, abcd.in one of our conversations she did mention ampligen being 1 option.
those of you who are doing well on the anti-virals that's fantastic.
sue i did read in the papers that because of the possibilities of clusters of viruses this may be the reason why some people had negative blood work to xmrv which can be false negatives.at some point you should test again...when they figure out the clusterf^&k!!

I will speak to her next week and am xmrv +. I asked Hannah her assistant last week but she said that she currently still does not offer special treatment for xmrv+ folks. Unfortunately

 

[Hope123]

I agree with the posters above who suggest talking to a physician who has a lot of experience treating HIV. Not saying it's easy since many already have a hard time finding a good general physician.

I worked in healthcare before becoming ill and have a little experience working with HIV patients. While there are side effects associated with HAART and long-term effects are still being worked out (this isn't only HAART; there are many drugs outside of HIV where we don't have decades of data yet), there are many people who are HIV+ that are out working and living their lives with treatment. I haven't read it but check out the magazine Poz which is published for HIV+ folks: http://www.poz.com/index.shtml

My doctor, who was recommended to me as a good overall doc and not because of CFS, happens to have a large HIV+ practice and has 2 decades of HIV experience. When we talk about this stuff, although we are both cautious, she doesn't feel it is unreasonable to treat when there is more data out there. In fact, she told me that the newer generation drugs are much less toxic.

I think the question will be, like it was in the early days of HIV, whether one wants to treat now when one might be "less sick" and risk promoting resistant viruses vs. treating later and having better regimens/ drugs in place.