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HIV Life >> Living With HIV

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Anonymous
Unregistered

Does anyone feel good on meds??
      #190875 - 05/11/06 03:26 PM

I found out I was HIV pos last year. Doing well, feeling great, normal CD4 and percentages and VL less than 1500 on three tests. No meds needed yet per my HIV doc.
Reading the posts here and letters to the experts it seems everyone is having problems with the meds. Either they feel awful, don't get over the side effects, or have kidney, liver or lipo problems.

I know I will need meds eventually and am really scared. I only know two other guys who take meds and both suffer side effects. Is that the way it is for everybody and the "experts" just want to encourage us? Is it just the unfortunate few having problems and those are the one's I hear about and everyone else is doing OK?

How are the majority of folks on meds really doing?

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Does anyone feel good on meds?? new
      #190897 - 05/11/06 04:11 PM

Great question and it will be different almost everytime you ask someone. You must also realize to whom you are speaking and or asking questions. Are you talking to someone who started off on monotherapies such as AZT? Or are you talking to someone who has been on meds the past 5 years? Are you talking to someone who is abusing his/her body and is not adherant? Are you talking to someone with a resistant or multiple strain virus? Thats some of the reasons why you get different answers..

I am on my first line regimen with just some loose stools but thats because of my fucked up diet plan... I have to have icecream every once in awhile. Other than that, no problems yet......

My friend David who just started (he is on these boards) had a ruff start as he was hypersentive to one med. But there are plenty to pick from. Everyone reacts a bit differently and with the drug discovery pipeline as strong as it is right now, by the time you go on meds, it will be even better....

Be sure you have a ID DOc that is specialized in HIV. The science changes every six months! Plus, with all the trials/studies coming back with data, all the more reasons to have a specialist who is up to date/current..

Dont get to discouraged.. You have some time to get prepared for that eventuality.. As I saw it, I had really no choice in the matter and I made the best out of the situation. Trust in your doctor I always say and be careful what you read.....

Love

Edited by EricCO (05/11/06 04:45 PM)

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franfrog
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Reged: 01/05/06
Posts: 1342
Loc: NJ
Re: Does anyone feel good on meds?? new
      #190907 - 05/11/06 04:54 PM

Like Eric said, everyone reacts different. I started off on Trizivir and combivir and also was on bactum but I was having a reaction to one of the meds so they had to stop them all. I could not start back up on the trizivir for whatever reason and was having the reaction to the bactrum. I had to then go to combivir and sustiva. The combivir is fine, the first night on sustiva was crazy.
I would not say I have bad reactions to the meds. I do have weird dreams from the sustiva and sometimes a little fatigued but nothing I can not handle. I think my regiman is working great and hope not to have to change it for a long time. I went from a cd4 of 52 and vl off the charts to a cd4 count of over 400 and vl undetectable in less then 8 months. (knock on wood)


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Anonymous
Unregistered

Re: Does anyone feel good on meds?? new
      #190965 - 05/11/06 09:36 PM

Sounds like as benign as they make it sound the current truvada/sustiva combo which is supposed to be an "easier" regimen is still a problem for most folks, especially sustiva...nightmares...feeling "high" etc. I need to be alert for my job and can't really miss work. Sometimes I have to go in in the middle of the night. That's the part that I'm worried about, having side effects that knock me out of work for awhile, or make it obvious (jaundice etc. ) that I'm taking meds. I have an HIV specialist, and a great PA but I think they make it sound easier to take these meds than it is.

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tuffnftl
Regular

Reged: 05/03/06
Posts: 26
Loc: florida,fort laud
Re: Does anyone feel good on meds?? new
      #190995 - 05/12/06 10:02 AM

well hate to tell ya these meds are kinda toxic, look at the side effects on the bottle, i started meds 2 mos ago, bad head aches, nausea and diarrhea every other day, trying to eat right, work its ruff and stress's you out, but you have to think this is for the marathon, not a short sprint, yes i ve had a ruff time so far gettinng ready to ask to try something else, good luck , if anyone knows a way to make meds easier im listening

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Survivor
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Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Does anyone feel good on meds?? new
      #191001 - 05/12/06 10:29 AM

I guess I would say - Make the best out of your situation. Quit playing the mental games and face the facts that what option do you have? Live or Die. Take "toxic" meds or die? I see you have no options available.....



Make the best out of it and ENJOY YOUR LIFE!



Edited by EricCO (05/12/06 10:32 AM)

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nwdoug
Regular

Reged: 04/18/06
Posts: 31
Re: Does anyone feel good on meds?? new
      #191006 - 05/12/06 11:22 AM

Before I started on meds, I had the same concerns you did about how I would feel, side effects etc. Well, it's been 1 month since I started (Sustiva/Truvada) and to date I've had no side effects, althought I was kinda looking forward to the Sustiva dreams, they never manifested themselves. I guess I'll have use my own imagination to come up with something to dream about!!

I do have a Dr appt today to give blood to see how my counts look. I've hoping for the best. But so far, I feel fine.

Doug

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ny10001
Grand Master

Reged: 07/08/05
Posts: 199
Loc: New York
Re: Does anyone feel good on meds?? new
      #191011 - 05/12/06 12:12 PM

The vast majority of people who take meds do not have difficulty with them. Few side effects if any. Everyone seems to love throwing around the word "toxic" these days. No, the current medications are not toxic...except to the virus.

Truvada, for example, has one of the lowest mitochondrial toxicities of any medication out there (and not just for HIV...for any type of medication). Ibuprofen has more toxicity than Truvada.

Sustiva gives a few people initial side effects, but for every person you hear about with side effects, there's probably 100 who experience no to little side effects.

The biggest key is to be open and honest with your doctor. if you are having issues such as sleeplessness or diahhrea, then it's time to talk to your doctor and change your regimen to something which you can tolerate. Do not suffer in silence.

Example: Some people have gastrointestinal issues with kaletra, and some don't. If you do, then tell you doctor and change the meds. Same thing with Sustiva if you get the crazy dreams. There are many choices out there, and several combinations will be right for you.

Some of the more common first line regimens are Sustiva and Truvada (which will soon be available in a single pill taken once per day).

Kaletra and Truvada or Kaletra and Epzicom are common.

Reyataz, Truvada, and Norvir are also common (although Reyataz is sometimes held for later treatment but can be used if you don't find a suitable first line).

Just be sure to be communicative with your doctor. You're in this for the long haul as a partnership. This is not a case where you can just deal with a little gas or bloating until the anti-biotics run out after 10 days (like some short-term illnesses)....this is for the long run. So if you're having irregular bowel movements, for example, you're going to have to be honest and open about it; otherwise, your doctor can't do anything about it. Admittedly, it means you'll have to become comfortable talking about bodily functions that you normally didn't discuss with anyone...but it's important. You'll be glad you did once you are on a regimen that has little to no impact on your life other than remembering to take the pills each day.

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Anonymous
Unregistered

Re: Does anyone feel good on meds?? new
      #191076 - 05/12/06 04:28 PM

The one great thing about the meds these days is that there are so many to choose from. If one med has side-effects you can't live with, you can go to another. My current regimen seems OK, with few side-effects other than the effect of the expense of them on the fatness of wallet.

I've taken meds in the past that had some awful side-effects, but I was on AZT mono-therapy for years back in the early 90's, and sadly I am now paying for it.

My advice is if it hurts to take the meds, you need to have them changed.

DDI (Videx) used to come as communion-wafer sized pill that you either chewed or crushed into juice. I couldn't abide chewing it as if made my mouth feel as if it was full of razor blades, so I crushed it into grapefruit juice. As we know now the combination of DDI and grapefruit juice causes a toxic overload condition in the liver. Later after a years long drug holiday, I began to take Videx and soon after I developed debilitating pancreatitis and liver problems, which haunt me to this day.

Who knew? Work with a knowledgeable doctor who listens to you, and if he or she doesn't listen to you get in their face and demand attention. We are after all partners with our doctors, not pieces of meat.

Cheers,

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Does anyone feel good on meds?? new
      #191101 - 05/12/06 06:10 PM

Sorry that was me that posted above, my computer at work ever so often dumps cookies, and then I forget to sign on and well......

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Does anyone feel good on meds?? new
      #191103 - 05/12/06 06:15 PM

I thought so Chuck... You have that spinach in your writing that cannot go un-noticed.


bear i ment food!

Edited by EricCO (05/12/06 10:09 PM)

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Anonymous
Unregistered

Re: Does anyone feel good on meds?? new
      #191131 - 05/12/06 10:22 PM

Doug,
I am afraid to say, you seem to be the exception that proves the rule. You are the only person I have talked to who has had no problems with meds. Read the rest of these posts and my fears are probably true. The doctors make us newbies think that when the time comes and meds are needed most of us won't have problems but just about everyone apparently does. I just need to be prepared now.

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Anonymous
Unregistered

Re: Does anyone feel good on meds?? new
      #191132 - 05/12/06 10:26 PM

Not playing mental games, just asking for information. This is one of the few places where I can get information from other HIV pos folks who have experience with HAART. I thought that's what these forums were for?

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Anonymous
Unregistered

Re: Does anyone feel good on meds?? new
      #191134 - 05/12/06 10:33 PM

Believe me I have no problems discussing ANYTHING with my doctor. Hell, If I was able to tell HER how I became infected I can discuss anything.
Thanks for the information, it's encouraging.

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AIDS2HIV
Unregistered

Post deleted by Becky new
      #191153 - 05/13/06 08:40 AM



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