POZ Community Forums
Main Forums => Living With HIV => Topic started by: swede_dish on June 01, 2006, 06:38:44 am
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Hm. I have been talking to my doctor for a while and I think I am going to start treatment. I think I'm more afraid of the drugs than I am the virus itself.
Weird huh?
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Jenn,
I know just how you feel because I'm wary of the drugs as well. I was one of those people who had just about every side-effect going when I did the hep C treatment and I can't help but think I'll have a similar experience when it's time for me to start the hiv meds.
What are your numbers like? Do you really need to start now? Because taking these drugs is a big committment and maybe you need some more time to get your head into a good space where they're concerned.
Ann
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I'm terrified of the side effects......
my numbers aren't horrible but they arn't as good as they should be. My doctor is a nice man but he is really pushing these drugs and I just don't know if I should be taking them yet. I guess he knows more about it than I do, but I'm going to get a second opinion maybe. Something just doesnt feel right.
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Jenn,
Don't be scared of the medications. I've taken them. I've had the side effects. I've experienced viral resistance. They're hard to take. They're toxic and unpleasant.
But they're much better than the virus. They save lives. I'd wager that there is more than a score of members here with us today who owe their lives to HAART.
I didn't realise how much scarier the virus is until I developed Kaposi's Sarcoma. Seeing that evil little purple blotch (the "wine dark kiss of the Angel of Death") made me realise what was really at play. Do not be frightened of the pills - sure they're difficult and the outcome of their use is uncertain for all of us, but consider the alternative, it is certain.
That having been said, HAART is a vicious master. It requires great discipline from us. None of us should consider taking HAART until we're sure we're ready to comply with the regime. It's better not to take the damn things at all, than to take them improperly.
MtD
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I think I'm more afraid of the drugs than I am the virus itself.
Weird huh?
Hello Jenn,
Not at all... All the years that I thought I had prepared for taking the meds, I found out how unprepared I really was. As a result, I waited much to long to start on medication. I don't like to see anyone get caught in that position.
The following is a link from the "Lessons section" in when to start treatment, if you haven't read it yet, I suggest that you do. It's quite informative...
http://www.aidsmeds.com/lessons/WhenToStart1.htm
Take care------Ray
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Jenn,
May I ask what your numbers are, exactly, and what trend, if any, have you seen? If we knew the numbers from your last three or more results, we would be better placed to discuss this with you.
And a second opinion is NEVER a bad thing.
Ann
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Jenn, I see Ann has already said it to you, so I just want to reinforce getting a second opinion.
If and when you do at some point begin the meds, it's good to get your concerns addressed as much as possible ahead of time. And you're entitled to that. You seem to have some instinctive doubts and that's always something that deserves to be respected.
Cheers,
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I completely understand your trepidation regarding starting treatment. I felt the same way.
But, as Matty already pointed out, the alternative is very nasty indeed. A few days ago, I visited a young man who waited too long. He didn't get tested, found out he was positive after being hospitalized and now has a host of opportunistic infections I haven't seen in years. It is so bad, he cannot eat solid food because he has Kaposi's Sarcoma lesions covering the inside of his mouth and throat.
Yes, the meds are scary. Yes, they are toxic. Yes, they may - or may not - cause side effects. There are no guarantees.
But there is a guarantee that without treatment, the result is a place you don't want to go.
Just my 2¢ worth.
HUGS,
Mark
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Jenn,
I don't know you, but I DO know HIV.
I want to tell you something that nobody has yet said. Taking the medications is an event/decision, that will follow you for the rest of your life. Your options for taking the medications are "POSSIBLE" Nausea, Diarrhea, Night Sweats, Psychosis, Sleepless Nights, and many other side effects that I don't have right on the tips of my fingers; but to be sure, the meds will arrest the replication of the virus in your body.
If you do not choose to take the medications, this is an honorable, and valid choice. I want you to realize that with that decision comes opportunistic infections that will give you several of the following; Full and uncontrollable vomiting, Weight loss that will appear shocking, Night Sweats that will turn your bed into a swamp, Fevers that will hover in the 104 to 105 region, Cancers that will spread from your skin to your internal organs, Permanent Blindness, Crippling Pain in your extremities, and the list goes on and on and always ends in a very long, painful, and protracted death.
These are your two choices. Most of us here have made the choice to deal with the annoying "little" side effects, and put up with them to give us a shot at a fairly normal existence. Many did not make this decision, and they have already passed to the other side. Their choices were not bad, were not wrong, nor were they choices that should be judged by us who have survived. They made the decision with information and with knowledge, and that is not a bad thing. Just be sure, when you start these medications, there is no stopping them, until you are ready to check out and go to the other side.
I am not trying to influence you in either direction, just a friendly reminder that there are always choices, but we all must live with our own decision about HIV treatment. I encourage you to get at least one more opinion, if not two or three. There is not one shred of harm that can come to you if you remain positive, and questioning, and make sure you have all the information ahead of time. Like Ann and the others have said, "knowledge is power" and you need all the knowledge ahead of making the decision to take the medications at this time.
In Love.
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I'd wager that there is more than a score of members here with us today who owe their lives to HAART.
I didn't realise how much scarier the virus is until I developed Kaposi's Sarcoma. Seeing that evil little purple blotch (the "wine dark kiss of the Angel of Death") made me realise what was really at play. Do not be frightened of the pills - sure they're difficult and the outcome of their use is uncertain for all of us, but consider the alternative, it is certain.
Me, me, me! If it wasn't for HAART, I'd be 6 feet under by now. Prior to meds, I didn't realize the gravity of hiv - until I lost 19 pounds with diarrhea and getting fevers all the damn time. Yes, I'm ashamed to admit: I was a denialist. (Was! Was! Not anymore!) Even when my blood was drawn I told the doctor I was distrustful (and scared) of meds and it was "highly unlikely" I'd take them. soon after he told me my CD4 was at 42 --whereas the normal is 500. I was scared shitless. I started HAART and holistic regimens. I gained back the 19 pounds and even more, diarrhea is now a virtual stranger to me (I'm extremely lucky in that department!), and my health is 10X more stable than in Sept 2005. My CD4 is now 419 (18%) and VL is nearly undetectable at 67. In Sept 2005 the #s were CD4 42 (?%) and VL 100,000 so thank God for hospitals and HAART. If you do get 2nd and 3rd opinions, etc., just beware the denialists!!- what they'll tell you is wrong wrong wrong. speak to real doctors and people who live the reality of hiv
As Moffie said, the drugs will halt the replication of hiv in your body ... Try not to be scared. We're here for you.
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I always cast my vote (or opinion) on starting meds NOW. I would have gave anything if I'd known I had a cd4 of 83 and vl of 500,000 before I had cd4 of 83 and vl of 500,000. I would have started meds asap. What you see with so many here is they very soon become undetectable VL, and their cd4 is like 'frozen" where it is, then starts recovering.
I too had a few small KS purple skin things, and weight loss before I decided it was possible I may have caught this hiv, and finally "finally" got tested. I could not start meds fast enough. And even hated waiting the 3 weeks for the resistance test, my doctor wanted, before getting me on the meds.
Now... 6 months into meds, my few KS spots are GONE! And no new ones. My cd4 is now 438 (or 483 ?) and my VL is still undetectable. I seem to cope with the meds fairly well and I am soooo greatful to have them in this day n age. Too many never had the chance to pop some pills and keep the virus at bay.
Dont know what your cd4 numbers are or %, but I'm all for starting meds right away. This virus doesnt make deals, its out to win the hard way. Please consider if your doctor wants you to start, he probably is someone worth taking advice from. A second opinion isnt going to stop the virus from continuing to do a job on your system.
Sorry if i sound harsh, but I know how remarkable these new meds can be, and I dont want anyone to suffer from this nasty virus if they dont have to.
God bless and keep that chin up. We want to see you stay well and put that virus down. And the meds do just that. Take care!
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I'm the same way, i am more afraid of the meds than the virus....for me, i am trying to hold out for as long as possible.....but i think there is a time for everybody who is poz to start treatment unless they are sorta immune to the virus. Anyway, good luck to you and your decision.
Justin
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Hi S_dish, I think people who had come down with some condition or other due to the virus, might find the virus very scary and would think other wise. I think its a good idea to start meds at the appropriate time.:)
take care,
mark
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OK, here it is, I kind of agree with Moffie on this one. I had PCP and MAC. I spent 4 weeks in the hospital and was basically sent home to die. My CD4 was 22 and my VL off the charts. One year later I am working again, my CD4 is 650ish, my VL is <50 and I will gladly take four pills per day and deal with the occasional side effect, because I am ALIVE and THRIVING. HAART is a WONDERFUL thing. Yes, there are not pleasant aspects of it but the alternative is death and frankly, I am not ready for that!
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I went to the doctors today and we decided to start.
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that thing cut me off. but yes. I am starting. Wish me luck.
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You don't need any luck, you have us to lean on. ;D
In Love and Support.
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Really, the side effects are over-rated as an event. True, sometimes people react very badly, but most people don;t. Sustiva can be a bummer to start, and you'll soon know if it ain;t for you long-term, and the nausea, squits etc from drugs are not good, but the virus having it's wau is truly more horrible. I was hoping for side effects (as leverage over my ex) but apart from a slight tingling on the tonge after the first dose n the odd Norvir nausea day (say 1 in 60) i have none and hand noe worth speaking of - matt
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Hey Swede Dish,
I will both wish you luck and repeat Tim's (Moffie's) comment, you have us to lean on whenever you wish.
Which regimen are you starting? Did you already say and I missed it (or, knowing me, simply read right over it)
Hang in there, we are with you.
HUGS,
Mark
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Hi swede dish,
You are going to do just fine. I started meds for the first time a month and a half ago and my numbers are already much better. Be patient. Keep us posted and since you wanted good luck...GOOD LUCK!!!!!!!!
Duude
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Hang in there love, you'll do fine.
Just get in a routine and stick with it. I'm pretty damn good with my HIV meds, it's the vitamins and stuff I get a little out of whack with. For example, I always take my Sustiva and Truvada after I get home from work at 11:30 pm.
My one piece of advice, is to ALWAYS have a back up dose of meds with you, either in your purse or backpack (or WHEREVER) in case you get delayed someplace. That way you won't feel rushed about either getting home or scared shitless if you miss a dose.
we've all got your back sweetheart,
John