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Author Topic: Newbie and looking for help  (Read 3342 times)

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Offline clogger

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Newbie and looking for help
« on: December 26, 2009, 05:07:57 PM »
Hi everyone

Just want to sat hello from London. I have been reading and taking   comfort and advice from you all but been to scared to reach out. So here goes I have had hiv for 11 years and aids for 10 of these and am now at a stage where I have pretty much built up resistance to the old and new drugs and am at a cross roads to stop or continue with medication? Has anyone else ever felt that it is quality and not quantity at this stage or am I just being selfish?
 

Offline Jody

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Re: Newbie and looking for help
« Reply #1 on: December 26, 2009, 07:56:20 PM »
Hi Clogger.  I don't know a great deal about resistance tp drugs, many of our members can speak on it more informatively.   But with many new meds out, perhaps you can find the right regimen for you.  We are all individauls and react differently.  Keep working with your health care provider and here's hoping the news will be good.
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline pochas2

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Re: Newbie and looking for help
« Reply #2 on: December 26, 2009, 08:32:59 PM »
 :o Hi Clogger, I have AIDS since the last week of november 94, my cd4 20, started treatment in juanary 95, since then no treatment worked for me I got resistance to all of them, I got all kind of infecctions, you nane them, I got all. During the year 2000  I was about to go blind completly when my doctor gave me KALITRA, my cd4 went up to 361 they held up for 5 years, I got pancreatitis from it, so I got to stop it. After stopping that treatment I went back to treatments that did not work for me (reyataz) my cd4 were only 32, when my doctor told me that he was going to give a medication on a compation basis, it was not aproved on those days by de FDA, so I tried, it only took to weeks of taking this new treatment for the virus virus to go on hidding, meaning for the firt time since I was told I had AIDS that I am undetectable and my "soldiers" (cd4) are now 461.
With this I am trying to tell you that there is hope, I know that you will find a good treatment, may be you have not tried mine. Here it is:Issentrs, duranavir,intelence and norvir.
I've been taking this treatment for the las three years, and it is still working, good luck sincerely

Offline clogger

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Re: Newbie and looking for help
« Reply #3 on: December 28, 2009, 07:16:35 AM »
Thank you for the replies. I am on travada,reyataz and norvir at present and have developed jaundice from the reyataz and having liver disease from previous meds am not responding well to this regime. I have tried and failed the drugs you mentioned due to resistance and not being able to handle certain side effects. My CD4 has not gone above 200 for years now and never stay undetectable for longer than 6 months. I have a fantastic hiv specialist here in London but he is now suggesting to try the old regimes again eg. AZT etc as he is at a loss now.I just don't know how much longer I can do this?

Just want to stay just being able to speak to people who understand is fantastic. Thank you again...

Offline minismom

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Re: Newbie and looking for help
« Reply #4 on: December 29, 2009, 06:17:18 AM »
Clogger, have you had a genotyping or phenotyping done?  If so, there are very intelligent folks here (me NOT included) who could help you out if you post the results.  If you haven't had one done yet, it would definately be something to talk to your doctor about.

Best of luck and welcome to the forums!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Inchlingblue

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Re: Newbie and looking for help
« Reply #5 on: December 29, 2009, 10:32:03 AM »
Intelence is a new NNRTI that works even on those who have developed resistance to previous NNRTIs. Isentress is a whole new class (integrase inhibitors) and has worked wonders for many in a similar situation to yours. There are also others. Some of the PIs have a high barrier to resistance and little cross resistance so  drugs such as Prezista and Kaltetra are possibilities.

Sometimes even very experienced HIV doctors ask other doctors for advice in cases where it's difficult to figure out a regimen.

If I were you I'd ask one of the doctors on thebody.com or Dr. Gallant (links below). If you fill them in specifically on your treatment history they should be able to offer you some good advice.

LINKS:

http://www.thebody.com/Forums/AIDS/Meds/index.html

http://www.hopkins-aids.edu/q_a/index.html?categoryId=9352&siteId=7151

LIST OF ALL HIV DRUGS:

http://www.fda.gov/ForConsumers/byAudience/ForPatientAdvocates/HIVandAIDSActivities/ucm118915.htm
« Last Edit: December 29, 2009, 10:41:35 AM by Inchlingblue »

Offline Carly

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Re: Newbie and looking for help
« Reply #6 on: December 29, 2009, 11:56:49 AM »
I have heard of some the LTS people talk about taking "medication holidays" to combat resistance to the drugs.  I think it has something to do with allowing the virus to mutate & become a "wild" virus.  I'm not too sure about all this, I've only read about it on these boards & the body.org.  There are plenty of members here who are very knowledgeable about this sort of thing & I'm sure they'd be happy to help you out & explain things.  Like I said, I'm new to all this, (my boyfriend of 6 years just found out he was positive in November & was then diagnosed with AIDS, I'm still negative thankfully) so I don't know if this option would even be something that would work for you. 

Offline clogger

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Re: Newbie and looking for help
« Reply #7 on: December 29, 2009, 02:40:21 PM »
Taken on board all the suggestions and appreciate all your help. I have tried the integrase inhibitors and P.I.'s so you can see how desperate I am now and my specialist is the top one here in London on resistance and just will not give up but this body can only take so much but talking to such supportive and wonderful people just gives me the lift I need at this time. 

Offline leatherman

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Re: Newbie and looking for help
« Reply #8 on: December 29, 2009, 05:32:07 PM »
I have heard of some the LTS people talk about taking "medication holidays" to combat resistance to the drugs.  I think it has something to do with allowing the virus to mutate & become a "wild" virus.  I'm not too sure about all this, I've only read about it on these boards & the body.org. 
yikes! not strictly taking the meds can allow the virus to mutate, and become resistant to the meds (which means the drugs will no longer work against the virus). You're suggestion is the worst advice and the opposite of what should be done.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Inchlingblue

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Re: Newbie and looking for help
« Reply #9 on: December 29, 2009, 07:23:49 PM »
yikes! not strictly taking the meds can allow the virus to mutate, and become resistant to the meds (which means the drugs will no longer work against the virus). You're suggestion is the worst advice and the opposite of what should be done.

I read something recently about a study that looked at what Carly is saying (i.e. that in heavily treatment-experienced patients who go off meds and have viral rebounds, the new virus population eventually becomes "wild-type" again). I can't find it right now but I'll look for it. It sounds too easy so there may be more to it but what she is saying is not entirely off-base.

Offline minismom

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Re: Newbie and looking for help
« Reply #10 on: December 29, 2009, 08:57:41 PM »
Now that you mention it,  Inch, Mim's EX-pid suggested that Mim take a med holiday for 3 months so that she would develop a viral load.  The reasoning behind it was so that a new genotyping could be done that would include the new meds that have been developed.  Needless to say, we didn't take her up on the offer - hence the EX part.

Mum

edited to add: I put this in the wrong post.  It should be in "Newbie and Looking for advice" by Clogger.  If a moderator wouldn't mind moving it - I'd appreciate it.  I tried reporting it, but got the message that it "didn't make sense" to report myself...lol
« Last Edit: December 29, 2009, 09:15:43 PM by minismom »
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline leatherman

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Re: Newbie and looking for help
« Reply #11 on: December 29, 2009, 09:09:08 PM »
i think I know the thread you were shooting for mom :D,

but to do some (maybe all) resistance testing, a viral load is needed so there's some virus to test the meds against. it's a creepy catch-22. My old doc wanted to do another genotyping on me; but my viral load blips would never blip up high enough. Doh! ::)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Carly

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Re: Newbie and looking for help
« Reply #12 on: December 29, 2009, 10:38:43 PM »
yikes! not strictly taking the meds can allow the virus to mutate, and become resistant to the meds (which means the drugs will no longer work against the virus). You're suggestion is the worst advice and the opposite of what should be done.

I wasn't actually "suggesting" it, as I don't really know too much about it, I'm just saying it's something he might want to get some info about.  When I read about it on The Body, I honestly thought the same thing you're thinking.  But I figured these were people who were positive & had been for a while & seemed to know what they're talking about.  But then again, there are the aids deniers out there who've been positive for a while & I sincerely think some of them are batshit insane, so there you go.  But the people on the forum I was reading seemed to know what they're talking about.  Here's the actual thread (I did a search & found it):

http://www.thebody.com/cgi-bin/bbs/showflat.php?Cat=&Board=living&Number=247681&page=&view=&sb=5&o=&vc=1

But god no, I'm certainly not advocating people stop taking their meds just for shits & giggles or for any other reason for that matter.  The "drug holidays" are just something I've read about & I thought I'd share it.  People can read it & form their own opinions.
« Last Edit: December 29, 2009, 10:41:23 PM by Carly »

Offline Inchlingblue

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Re: Newbie and looking for help
« Reply #13 on: December 29, 2009, 10:58:53 PM »
It seems that even if wild-type virus takes over after a treatment interruption, there would still be the archived resistance that would come back eventually.

Hopefully Clogger can find a combo that works.

By the way, just because you might be yellow due to the Reyataz that in itself is not necessarily a sign of liver damage. Consistently elevated ALT/AST would be of more concern.
« Last Edit: December 30, 2009, 10:22:33 AM by Inchlingblue »

Offline leatherman

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Re: Newbie and looking for help
« Reply #14 on: December 29, 2009, 11:49:48 PM »
that thread you linked to was about people talking about their personal experiences with resistance issues. The only links to any real data were about multi-resistant virus (ie super infections, which is a whole other thread). There was no medical data about taking a drug holiday.

so I don't know if this option would even be something that would work for you. 
even though you couched your comments with a negative, you quite clearly insinuated that taking a "medication holiday" was a possibility; while still carefully pointing out that you don't know if that would work or even be an appropriate option.

Like I said, I'm new to all this, (my boyfriend of 6 years just found out he was positive in November & was then diagnosed with AIDS, I'm still negative thankfully)
Since you're not a doctor, you are not even HIV positive, and your boyfriend has only been diagnosed poz since Nov. I politely suggest you need to learn a lot more about the science of HIV and it's treatment before you go "suggesting" potentially dangerous medical treatments to other people. I appreciate that you are trying to "help" but you really should be trying to learn more about this disease and the treatment to ensure that your boyfriend and you properly treat his HIV to guarantee him better health and you to remain negative - instead of giving out bad medical advice. Hopefully, no one will consider your option to take a drug holiday, develop resistance and run out of medications that they can take to control their HIV.

Aidsmeds offers many excellent "lessons" about HIV/AIDS
here's the one about resistance http://www.aidsmeds.com/articles/Resistance_7509.shtml
and the one about adherence   http://www.aidsmeds.com/articles/Adherence_7420.shtml
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Ann

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Re: Newbie and looking for help
« Reply #15 on: December 30, 2009, 09:07:36 AM »

edited to add: I put this in the wrong post.  It should be in "Newbie and Looking for advice" by Clogger.  If a moderator wouldn't mind moving it - I'd appreciate it.  I tried reporting it, but got the message that it "didn't make sense" to report myself...lol


Dunnit. ;)
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Newbie and looking for help
« Reply #16 on: December 30, 2009, 09:33:53 AM »

I wasn't actually "suggesting" it, as I don't really know too much about it, I'm just saying it's something he might want to get some info about. 


Carly, sorry, but as someone who is not hiv positive, you really should not be posting in this forum as it's for people who are actually living with hiv in their own bodies. I know you mean well, but please don't post in this forum any more. You can post in "Someone" and "Off Topic".

Thank you for your cooperation.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Carly

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Re: Newbie and looking for help
« Reply #17 on: December 30, 2009, 09:45:09 AM »
Carly, sorry, but as someone who is not hiv positive, you really should not be posting in this forum as it's for people who are actually living with hiv in their own bodies. I know you mean well, but please don't post in this forum any more. You can post in "Someone" and "Off Topic".

Thank you for your cooperation.

Ann

Okay, sorry, I didn't know.  Won't do it again.  Execpt for this last post to say sorry. :)


Offline UK_SL

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Re: Newbie and looking for help
« Reply #18 on: December 31, 2009, 11:56:47 AM »
Okay, sorry, I didn't know.  Won't do it again.  Execpt for this last post to say sorry. :)



Well I think you should be able to post where ever you want Carly, you don't have to have the illnes to not be able to give support and advice to others.

Keep posting please Carla, I've not seen no rule book saying that people who are not HIV+ can't use certon forums??
05/10/2009 ~ DIAGNOSED, CD4 = 8
22/10/2009 ~ CD4 = 11/VL = 430,000, STARTED ATRIPLA and SEPTRIN
26/11/2009 ~ CD4 = 121/VL = 840
22/12/2009 ~ CD4 = 184 (6%)/VL = 340
11/03/2010 ~ CD4 = 177 (12%)/VL = 72
01/07/2010 ~ CD4 = 247 (12%) VL = 76
20/01/2011 ~ CD4 = 350 / VL = 29

 


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