POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: surf18 on July 28, 2011, 08:14:58 pm
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do you have any side effects? feel relatively good?
we hear about people on the older meds and the sides but i m curious to what the people on the newer meds feel like five years or so.
thanks!
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I think it will depend, in part, on how sick people got before they started.
I feel pretty good; I have some problems with osteoporosis and some cholesterol issues that are probably due to the drugs. But I started very. very late.
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how long from infection to meds do you estimate? and what meds are you on please.thank you
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I'm on Prezista/Norvir and Epzicom now. But I blame the osteoporosis on Truvada (the tenofovir) -- there may be an easy fix though -- more vitamin D and calcium when you start it
I figure the infection dates from late 95 early 96, but who knows maybe later?
Still, for a guy who got infected in his 40's and now is in his 50's -- life is pretty good.
Just remember that you are asking your question of a likely biased sample. Many people do very well on the meds -- but they may be less likely to hang around the forums than those who have unresolved health problems.
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I'm on Prezista/Norvir and Epzicom now.
I'm currently on this also, I've been on 3 separate regimens and once my body gets acclimated to them I feel absolutely fine. No complaints other than had minor probs with kidneys due to Tru, but that was managed fine.
-Will
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thanks guys
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Been on Atripla and Reyataz/Norviir for 5 1/2 years. I'm feeling fine. Still doing what I did before infection -- actually playing more tennis and getting better at it too!
Other than dreams, no real side effects from the drugs -- my cholesterol has actually improved, with HDL going up over 10 points alone since starting. Of course, I've been on statins for at least 15 years.
Mike
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there were some minor adjustments in the beginning but im fine for the most part. my only concern is that damn glinting light. apparently im the only one has has this strange condition.
energy levels increased. im a bit moody in the morning and it is a little worse if i've had fattening food close to dosing time. overall no major noticeable side effects.
been on atripla a few months now...its in my tag line.
best,
d
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do you have any side effects? feel relatively good?
we hear about people on the older meds and the sides but i m curious to what the people on the newer meds feel like five years or so.
thanks!
Infected in Spring 2008, seroconverted, and diagnosed. Started Haart August 2008.
The first combo - sustiva truvada (Atripla) - immediately made me feel much better, living, energy. It was a trippy drug for me. I tripped when I first took it fhe first few days, and I am one of the ones who gets wild dreams. They weren't nightmares. After quite a few months, it probably was making me quite irritable and having mood swings. So I was clearly one of the minority with CNS (central nervous system) issues with Atripla.
By the way, that's not such a new combo of drugs.
Then I went on Prezista and norvir. Yes I got a bit jaundiced. Finally that gave me a rash. I went on Intellence and and that gave me a rash finally too after more than a year I thing. And taking that drug coincided with a foot bone/muscle pain problem that couldn't be linked, lasted for almost a year, but went away well after physical therapy didn't do much and right about the time I switched to my newest - Isentress and Truvada. So that we could call a "new" combo. It's great. Clean sailing and feeling.
They are all pretty much cake walks in comparison to the sinking feeling I had before I started and in comparison to the early med horrors. They are all now quite easy to take. Its more about fine tuning what works best for you.
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I was OK until until my dose of meds went up since then I have not felt at all well. I do have other conditions so am now taking 17 pills a day so not surprised.
I have noticed weird fat lumps developing around my neck since the increase but will have to see what happens with that.
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But I blame the osteoporosis on Truvada (the tenofovir)
IIRC this isn't at all clear, and in fact there have been recent studies blaming it more on advanced HIV infection/low cd4s at diagnosis.
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IIRC this isn't at all clear, and in fact there have been recent studies blaming it more on advanced HIV infection/low cd4s at diagnosis.
Well, I've read those studies too. Most of them cite multiple competing factors including HIV itself, but include tenofovir as one of the siginificant factors. There is an argument that merely starting on meds and becoming healthier diverts resources used for bone building -- but most studies show this is worse with tenofovir (and a recent VA study shows excess problems with kaletra too, which was my other starting drug).
For me, in particular, the month or so after I got out of the hospital and was starting on meds I fell down more than I ever have before (yes, with an oxygen tube attached). I fell down a flight of stone steps, off a 10 foot ladder (twice -- the second time I took half a cherry tree with me), walking along the street... But nothing broke.
6 months after starting the meds though, a relatively minor slip and I had a classic fragility fracture and osteoporosis. So...I tend to think that the meds were what pushed me over the top.
But back to Surf's question -- I think of this as an example that the number and severity of problems people have are likely related to how sick they got and how old they are. HIV itself may well have done a lot of the weakening of my bones. Plus I'll be 55 soon. So don't take this as a prediction of your own health.
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I've been on Atripla for 2 years and everything was coming up roses for a while. However, I'm starting to see some of the more exaggerated anxiety effects attributed to the drug (this may be because I'm working again and so my stress level has risen).
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I started on Atripla and went crazy. Switched to Isentress and Truvada and all is great although some of my friends say I am still crazy but in a good way.
Billy
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its nice to hear none of you are experiencing lipo and facial wasting that many of our bud's on here had to go through with the older meds.
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Is that what you are worried about? Supposedly the risk is slim but there are reports here and there.
Caveat - you do realise that since "we" are only on the drugs a few years, "long term effects" is not yet an applicable category.
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its nice to hear none of you are experiencing lipo and facial wasting that many of our bud's on here had to go through with the older meds.
There was a recent study that said 50+% of people with HIV in 2010 had some form of lypodystrophy, this was a decrease from a similar study done in the late 90's.
http://www.aidsbeacon.com/news/2011/07/27/rates-of-abnormal-fat-distribution-dropping-but-still-high-in-people-with-hiv-aids-ias-2011/
If that is what your concerned about Mech is right your question is a bit...inadequate. Your asking people diagnosed in the past 5 years if they have a side effect usually from long term arv use. Ask us in 10 years I'm sure the answers will be a little different. Just saying
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Ugh!
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I was diagnosed in 2002 went on meds in 2005, but with Truvada, Reyataz and the Norvir boost, which are considered modern meds.
The goods: undetectable since 6 mos after starting, Cd 4s ok and cd 4% is at an all time high now. No probs sleeping, energy, no lipo problems (except when I eat badly and don't excercise). Nadir was about 350, and never had an HIV related disease except low energy before I went on meds. The only side effect was sometimes problems with acid stomach, and slightly elevated cholesterol ( not bad).
The bads: diagnosed with osteporosis in feb after 5 years on meds. After a failed try swapping Isentress for the Reyataz (for other reasons), now I successfully switched to Epzicom instead of Truvada. The weak bone thing freaks me out... I have to avoid twisting movements, worry about falling, and I'm taking all sorts of things now to treat it. One thing for sure, no matter your regimen at a minimum supplement with calcium and vitamin D every day it is thought to help fight this problem. My doc now recommends this to all his patients, I wish I knew...
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I was diagnosed in 2002 went on meds in 2005, but with Truvada, Reyataz and the Norvir boost, which are considered modern meds.
The op asked for input from people dxed within 5 yrs.
Everyone could do better about being more accurate in defining the categories of the population from which they are trying to extrapolate info to their own experience.
This post above obviously does not represent the requested sample.
The op could do even better by asking for new infections within 5 years and then on the Haart.
Course one does not want to get too narrow in the criteria - would limit sample size.
Letis all use some common sense and take into consideration more than one little criteria. Eg, if someone is maybe 10 years poz before the diagnosis - we could guess it's not the same experience.
Considerations like that.
Or 55 yo people posting their issues and 25 yo people not paying attention and getting worried. Considerations like that.
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What a boring post... Eric
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I didn't reply when I first read the criteria but I am wondering why you wouldn't want input from LTS who are also on current meds? At 45, I suddenly feel better than I have in 20+ years.
Edited to add;
I also look better than I have in 20+ years ;D
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My theory is that the OP's intention with this thread was to see how likely it would be to develop lipo issues if you started treatment within the last five years. Not sure why he just didnt ask that straight away.
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Oh, and Miss P's numbers (and not just cd4 stuff) is better than 99% of you "recent five year folks" so you know... like whatevs. ::) :P
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What a boring post... Eric
Well, at least it didn't cause you to write a 15 page reply that made no sense -- that's progress!
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Well, I've read those studies too. Most of them cite multiple competing factors including HIV itself, but include tenofovir as one of the siginificant factors. There is an argument that merely starting on meds and becoming healthier diverts resources used for bone building -- but most studies show this is worse with tenofovir (and a recent VA study shows excess problems with kaletra too, which was my other starting drug).
So basically they don't know, so there's no sense implying that you can blame one med. At least yet. I've been on viread for a decade and my bones are fine.
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Bug-
Lipo was a big thing
But really the whole actual well being I was curious about
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My reason for answering here is simple, so maybe someone else can head off the same problems I had up front. I've also heard the "with today's modern meds you'll be fine" and as far as being undedectable that was true. Then you get told about osteoporosis AFTER ONLY 5 YEARS of treatment and guess what? Breaking vertabre and being in constant pain or breaking bones sounds a lot worse than fat distribution(which had concerned me too).
Latest resarch (I don't have time to link now but search aidsmeds on osteoporosis) says that bone loss has been shown to start in the first weeks of treatment! Shouldn't a newbie like the OP know that it is now recommended to take calcium and vitamin D IMMEDIATELY...a simple thing that can help? Also, have your Vitamin D level tested.
Once you lose bone density and get frail, there's controversy about how well you can rebuild it. So it's best to add this to the list of things all positive people should test for - add DEXA bone density scans and Vitamind D levels to your testing regimen up front, as good HIV docs are doing....but far from all.
Aren't we all about trying to help each other here?
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The bone loss thing is a big deal I agree. My Dr hasnt mentioned a word about it to mr either. Has it been determined how to prevent it? How much vitamin D do you take?
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i am on truvada too. my dr told me that i need to take a calcium supplement and vitamin d. i was already taking vit d so that wasnt a big deal and the calcium i take one with the morning pills and one with the night time pills. personally the vitamin d , i take a 5000 iu or however its measured.
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I've taken vit. D/calcium twice daily for five years -- my doctor had me do it. My test levels for vitamin D are normal. And like I stated earlier, I've been on viread (the bone issue component of Truvada) since it was first FDA approved in 2001, so a decade.
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I too am on Truvada and not willing to take supplements! Wouldn't that mean taking a pill everyday for the rest of my life? OH, wait - never mind. ;D
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My theory is that the OP's intention with this thread was to see how likely it would be to develop lipo issues if you started treatment within the last five years. Not sure why he just didnt ask that straight away.
Sure everyone should help and inform each other. Supplements for bones sounds like a good idea for anyone. My post was just a gentle reminder to newbies looking for input to make sure they take into consideration the exact situation of the person offering input. Lts and the more experienced can always offer this extra context info by anticipating tha a newbie does not know enough to ask.
Fairly often we get newly diagnosed or newly infected or newly treated people really freaked by the liipo threats.
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yes i agree meech ,us newbies are proably most freaked of the lipo issues more than anything.