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HIV Health and Treatment Issues >> Treatment & Side Effects

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OrkoSnarf74
Newbie

Reged: 01/23/13
Posts: 1
Question about Atripla...
      #270324 - 01/23/13 04:56 PM

Hello I have come here because I really don't have anyone to talk to and I was hoping someone could help me with some thoughts that are bouncing around my head.

I have been HIV+ since 2006 and have been medication free for the whole time. My primary care doctor has always encouraged me to go on meds but I have not. He hasn't pressured me but he really thinks I should. About 8 months ago he filled a month's worth of Atripla for me and I got another months worth the following month. I still have yet to take it as I am terrified to. So it sits in a box under my bed.

Well since then I had a pap smear done and had to see a specialist about HPV... Everything was ok but the specialist basically ripped me apart (she was a little mean) for not taking the meds and told me all the horrible things that will happen to me. I was a little shell-shocked from here barrage.

The next time I saw my primary care doctor he once again encouraged me to go on them (I think the specialist reamed him out too) and went over all the different medicine options with me. He told me he would put me on whatever he wanted - but really was leaning towards the Atripla.

I am already a very lucid dreamer and am also sensitive to neurological things so I am afraid I will go crazy on the Atripla. I looked at Complera but my doc says he doesn't feel as comfortable with 'new things' but will prescribe it if I really want it.

I really need some guidance on this whole issue as I do not know anyone else with HIV on meds. My CD4 is 240 - not sure what my viral load is... I will have to find out.

Also lately I have had ZERO energy. I am not sure if it is depression or not but I have always exercised and now lately I just cant muster up the energy and when I do it feels like my joints are falling apart. Would Atripla give me energy to work out? One fear I have from taking the meds is weight gain - but that seems to be happening anyway so if the Atripla gave me a boost that would be helpful.

Sorry for the long post I just need to find some answers... Part of me just wants to give up but I know that isn't an option.

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xas
Newbie

Reged: 10/21/12
Posts: 8
Loc: BKK
Re: Question about Atripla... new
      #270331 - 01/24/13 06:00 AM

I started Atripla a couple of months ago and my experience has been pretty good. I think the whole visuals / vivid dreams thing is a bit overblown.

I had some visuals the first couple of nights but now I don't notice anything. Your experience may end up being different but don't psyche yourself out.

And if the side effects are too much for you, then you can switch to something else. You're not married to it.

As for the lack of energy, I don't know about that but getting your viral load down and your cd4 count up can only help.

I hope you follow your doctor's recommendation and start Atripla.



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krdillon
Newbie

Reged: 01/26/13
Posts: 3
Loc: Houston, Tx
Re: Question about Atripla... new
      #270361 - 01/26/13 10:08 AM

Hi there,
I was diagnosed in Feb2012 and was placed on Atripla. My ID doc has been a leader on all the research/med developments for the past 20yrs. Atripla was the newest developed -1- pill that replaced a cocktail of several other pills that were previously being being prescribed. If Atripla bothered me, then the dr was going to go back to a 2-3 pill/day situation to see what I could tolerate better. No problems..so far,
Ater 2mths, vload became and has remained undectectable. So it's doing what it's supposed to do, and i have not experienced any of the possible side effects that were listed from the research. I was always a vivid, vivid dreamer, so I haven't experienced any of that as the research revealed that some people experience. Weight gain: nothing abnormal there.
Not sure I would handle the idea of 2,3,4, pill/day situation.

--------------------
-keith-

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1755
Loc: Jersey Shore
Re: Question about Atripla... new
      #270363 - 01/26/13 10:47 AM

When I was first diagnosed , 20 some years ago , I also was concerned about meds. And even then my dr told me if I find that I can't handle them then I can always stop . And that was when you were put on a coctail of 3 meds. Now I have been on atripla for , geeze I think its 4 years, time flys, and I'm still doing well with it. And now I've been on meds for over 18 years. So you see you really have nothing to fear . I would be more afraid of not taking meds . But if you wish to talk more about it you can pm me and I will respond with experienced advice.

--------------------
Look up to the Heavens for the answers to Lifes questions .

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Crickets12
Newbie

Reged: 12/06/12
Posts: 2
Re: Question about Atripla... new
      #270448 - 01/31/13 01:31 PM

I was part of a Phase 3 trial study of Edurant (TMC278) and Truvada (the medications that make up Complera). I've been on this medication for a little over four years now and I'll admit that I have not had one side effect. If your worry about taking medication is because of the side effects, I would try Complera out first and see how it works for you. After six months of taking the medication daily my CD4 count greatly improved and my viral load was--and still is--undetectable. The decision to start medication is a difficult one but studies have shown that the earlier you start, the better it will be for you in the long term. I do hope you find the strength to take back control of your life. When you find yourself back on track you'll look back and realize it wasn't so bad after all. :-)

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Noel54
Newbie

Reged: 01/31/13
Posts: 1
Re: Question about Atripla... new
      #270450 - 01/31/13 02:06 PM

My doctor put me on Atripla 4 years ago, and at that time he also prescribed a sleep aid to stave off the vivid dreams for a month or so. I've done extremely well on Atripla and have experienced no side effects. My CD4 count ranges up around 1000, and in a very short time my viral load was undetectable. Don't deny yourself the right to feel well again. Certainly if the side effects were too severe for you to handle, your physician would prescribe something else. By all mean, take it. Give it some time, and you'll not regret it.

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coqui00623
Newbie

Reged: 01/31/13
Posts: 5
Re: Question about Atripla... new
      #270453 - 01/31/13 02:18 PM

Have been on Atripla since 2006. Have read the other responses and in full agreement with their responses. Having said that let me offer a few common sense tips based on my experiences. (1) Vivid dreams: not a big issue (2) Atripla should be taken at night before you go to bed or whenever your normal sleep cycle begins so that you sleep through any side effects (2) your body will QUICKLY ADJUST in a matter of days to Atripla but I recommend that for at least 72 hours after beginning Atripla you not drive or operate machinery if at all possible. If this is not an option then exercise extreme care when doing so. (3) Mood swings: you may find yourself more easily agitated over insignificant issues ... just remember its the Atripla ... get over it. (4) Be proactive about your own care... keep records of your viral loads and cd4 levels start a ledger and remember to record any significant events such as operations, bouts of illness (ie: flu, etc) which may impact on your viral load. In 2010 I had my gall bladder removed and noticed an elevation in my viral load but QUICKLY lowered to below 100 (5) buy/secure a weekly pill case and take your Atripla about the same time each day. This is helpful because there will be times when you may not remember taking your pill and you can look at your pill case and see whether it is still there... if not there then you took your daily dose. (6) no significant weight gain/reduction... eat smart... consult your primary care doctor about taking a multi-vitamin. Its only one pill a day alot better than taking 3 or 4. (7) if you do need to be hospitalized for any reason be sure to BRING YOUR MEDS WITH YOU for the duration ... this is a speciality drug and hospitals are not required to have it in stock. You need to be proactive about your health. Do not let FEAR stand in your way!

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miamorphos
Newbie

Reged: 01/31/13
Posts: 1
Re: Question about Atripla... new
      #270454 - 01/31/13 03:30 PM

I suggest that you talk to your case worker or look through your insurance or funding to see what counseling resources you have. A counselor to discuss your emotions and the feelings you have about these things would be useful. For all of us, there are all kinds of sadnesses and worries that creep up out of seemingly nowhere -- and we worry "What if I don't start the meds? Will my CD4 drop lower? Will I get sick?" when we're not worried about other things. Find someone to talk these feelings through, and I will cross my fingers for you. I started meds almost a year ago, took several weeks off in case there were side effects, and instead, I found that I had literally no side effects at all (for Reyataz/Norvir/Truvada). Some people have side effects as they adjust to the meds. Just eat well, talk to someone about your emotional life, take care of yourself, and know that you are not alone.

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coqui00623
Newbie

Reged: 01/31/13
Posts: 5
Re: Question about Atripla... new
      #270456 - 01/31/13 04:09 PM

As usual, a few items of concern popped into my mind not covered by others responding to your post. (1) Atripla is a speciality drug and is EXPENSIVE. Check with your health care provider to see if they have a MAIL PRESCRIPTION PROGRAM. If so, it would be to your advantage to utilize it. It would be most cost effective and you should only pay a minimal co--pay for a 90 supply. Talk to your primary care doctor about writing prescriptions for 90 day supplies with multiple refills enough to last the year. This beats running to your pharnacy or clinic every month. If not come November when OPEN SEASON is in session shop around for a health plan provider that does this. I have Blue Cross/Blue Shield. (2) Atripla is a LARGE PILL and you may find it difficult to swallow easily. Here is what I did to overcome this obstacle, (a) using water first swallow a few sips to wet your esophagus (b) be sure you are in a sitting and/or standing position. (c) after making sure your esophagus is moist LAY/POSITION THE PILL IN A VERTICAL POSITION ON YOUR TONGUE remembering that your esophagus is tubular in shape and you wish the pill to fall in the tube (d) fill your mouth with water and swallow. Simultaneously tilting your head upwards may help open your esophagus further. IF THE PILL FALLS SIDEWAYS DO NOT PANIC. Choking on a pill is never pleasant but using your breaths you can spit it back up and remember to CATCH THE PILL IN YOUR HAND not allowing it to fall to the ground or down a drain .... they do not come cheap. Practice makes perfect it took me many months to develop this method. Over the course of time your esophagus WILL WIDEN to facilitate this process and the choking episodes will diminish. Remember that taking your pill failthfully everyday is of paramount importance. I was diagnosed in 2004 and waited until 2006 before I started taking MEDS. It is now 2013 and I am doing just fine AND SO WILL YOU.

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markvin
Newbie

Reged: 02/03/13
Posts: 2
Re: Question about Atripla... new
      #270489 - 02/03/13 05:15 PM

OrkoSnarf74 you are not alone, I am here to help you. First of all you should visit an HIV specialist. Primary physicians are great but a specialist is better. I have been poz since 1999. My first four years my VL was around 200 and my T Cell count was normal. When my VL went above 200 my HIV specialist told me I should go on meds. I did and within a month my VL was undetectable. When Atripla went on the market I immediately switched to that and since then my VL has always been undetectable and my T Cells remain in the 1200 range which is normal. Atripla has virtually no side effects and if it causes stomach upset when you first start ask you doctor for a prescription for Dexilant, a new generation antacid. If you do have any side effects they will go away quickly. The fatigue comes with a low CD4 cell count and yours is very low and you should start the meds immediately before you progress to AIDS. Even with normal counts, fatigue is a side effect of HIV. For example, I work out with heavy weights 5 days a week and I have had to learn to distinguish between fatigue and loss of strength. I am very strong and have learned to "read" my body as far as fatigue goes. Almost everyone with HIV has some sort of fatigue. I usually work through it and still exercise but I can tell if my body is telling me it is time to take a rest and then I rest for a few days. Strength has nothing to do with my fatigue and even when I am fatigued I am still strong at the gym. One side effect I have found with Atripla is occasional short term memory loss. But, it is not anything that is not manageable. I am very concerned that your primary physician has not referred you to an infectious disease specialist. Start the Atripla, see an HIV specialist and get your health to where it should be so you can live a normal life. If you are having constant dreams or are having trouble sleeping, as I have had in the past ask your doctor for a scrip for Trazodone. It is not a "sleeping pill" it is designed to shut your brain down at night so you won't dream or be sleepless. That is my experience and I have no problems whatsoever with Atripla. Hope this helps.

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southsam7
Newbie

Reged: 05/03/12
Posts: 7
Re: Question about Atripla... new
      #270525 - 02/06/13 02:16 AM

I think it is irresponsible and selfish of you to ignore your doctor's, his assistant's and generally accepted recommendations. you are much more likely to transmit HIV to others if you are not on treatment. what do you want us to tell you? you won't listen to professionals so why would you ask your peers? grow up and start taking responsibility for your disease.
Sam

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oksikoko
Member

Reged: 02/26/13
Posts: 25
Loc: NYC
Re: Question about Atripla... new
      #270860 - 02/28/13 12:17 AM

Hi, Orko. Great name! Snarf, snarf.

Listen, all evidence today indicates that going on ART (meds) early will be of benefit to you later. You want to keep your viral load as low as possible as long as possible and you want to keep your CD4 high. It's easier to keep it high than it is to get it high again after it drops.

I share your worry about Atripla (because of the Sustiva), and I won't belittle it. I have some mental issues from the past, and the idea of being on Sustiva scares the bejesus out of me. It won't do you any good to start it, then stop because the effects mess with your life. However, I think it's very important you make this clear to your doctor.

OK, so your doctor is not comfortable with "new things". I think that's a little odd, but let's go with it. If Stribild and Complera are really not options, you do always have the option of taking more than one pill. If I'm ever offered Atripla or Complera (because Stribild stops working or whatever), I'm going to go that route unless there's a new one-a-day by then (there's some interesting stuff in the pipeline!). It isn't pushed much on newbies, because they think we'll have trouble adhering and remembering all the pills. However if the one-a-day is scaring you from taking it, then you're only adherent in name... Ask him about a multi-pill regimen of Truvada plus something else. Atripla is just Truvada plus Sustiva, so if you don't mind taking two pills, it may be in your best interest long term.

My point is: there are options. Please don't just hide or dismiss the problem. Work with your doctor and find a plan that works for you. Complera and Stribild have both been shown to be as effective (if not more) than Atripla and with different side effect profiles, especially Stribild since it uses a completely different class of drugs. The details would go beyond this post, but I'm happy to find some links for you if you'd like.

Please post an update and let us know how you're doing, OK? I worry about people who are similar to me in their fear of Sustiva. I want to know you're OK.

--------------------
I'm sorry. I can't hear you over this popcorn.

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oksikoko
Member

Reged: 02/26/13
Posts: 25
Loc: NYC
Re: Question about Atripla... new
      #270861 - 02/28/13 12:27 AM

Sam, I agree that the OP needs to take her ART as her doctor recommended. But she has legitimate concerns, and frankly, she expressed them to her doctor who (it sounds like) poo-pooed her. To me, that's where this seems to fall apart, though, yes, it shouldn't have gone on this long.

YES, she needs to take the pills. NO, she shouldn't have waited so long to address this. But her doctor should really have listened to her concerns or helped alleviate her fears. HIV is tricky for some people and not everyone has a doctor they can work with. His discomfort with "new stuff" shouldn't keep her from getting a regimen that she can adhere to. Some people really do not tolerate Atripla well. It's a miracle drug for others.

Mostly, I think it's a shame that it went this long since delaying ART can have long-term affects. I hope the OP sorts this soon, and I hope she writes back so we know she's OK.

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I'm sorry. I can't hear you over this popcorn.

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oksikoko
Member

Reged: 02/26/13
Posts: 25
Loc: NYC
Re: Question about Atripla... new
      #270862 - 02/28/13 12:36 AM

Hey, Orko, one more thing I meant to mention. I get caught up in the drug talk. You wrote:

"Also lately I have had ZERO energy. I am not sure if it is depression or not but I have always exercised and now lately I just cant muster up the energy and when I do it feels like my joints are falling apart. Would Atripla give me energy to work out?"

Clearly, I'm no doctor, but you may be experiencing symptomatic HIV illness. If your viral load is high (likely since you've ben positive 6-7 years at least with no meds), then of course you're run down! It's like the never-ending flu!

Many people say that after they start ART and their viral loads go down, they feel much more energetic. If you have a high viral load, the inflammation from the virus alone - forget the immune issues - would make you feel run down. Get yourself on meds like your doctor said! I want to hear that you're back in the gym, ASAP... Don't let HIV steal time from you out of fear of the pills... Please.

Lee

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I'm sorry. I can't hear you over this popcorn.

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