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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1786
Loc: Jersey Shore
Life with meds years later
      #259604 - 12/25/11 01:09 PM

I'm looking to find info from others that have been on meds for the past 10 - 20 years. I'm curious to see what have been your long term effects on the body. I have been on meds for 15 years now and haven't been able to find any real answers as to the effects. I've been on Atripla for the past 4 - 5 years now and my bones and joints are experiencing fatique. Don't tell me it's just the onset of age cause we know that its not. But what has others been experiencing . Please share your results. This is for men as well as ladies , and the results will be somewhat diferent.

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

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AIDS2HIV
Unregistered

Post deleted by Becky new
      #259614 - 12/26/11 09:28 AM



Edited by AIDS2HIV (12/26/11 09:29 AM)

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mamimilli
Newbie

Reged: 12/28/11
Posts: 2
Loc: tampa florida
Re: Life with meds years later new
      #259658 - 12/28/11 12:54 PM

i have been on meds for 14 years im taking kaletra,Sustiva,and videx my effect mostly are the runs and high chol i also notice that i have that hump on my neck which has been ther for years other then that i have been doing pretty good on them,.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1786
Loc: Jersey Shore
Re: Life with meds years later new
      #259661 - 12/29/11 09:54 AM

Thanks for your feedback.Like many things at many times in our lives we need to re-adjust . Most times I'm ok with lifes adjustments . But then there are those days........ where I just want to fight it tooth and nail. Guess I'm in one of those moments. The most difficult to deal with is the fatique. How much is due to meds and how much is self induced. Winter is also difficult for me. I've never been crazy about cold weather but my meds have caused me to lose just about all my body fat. Sure people see your muscles and think your just sooo fit but thin is thin no matter how you slice it. So I look like a bundled eskimo when it's 50 degrees out . Just got to make sure I pee before i bundle up ! lol Thanks for letting me rant and have my momentary tantrum . Hope all have a great New Year .

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

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Tyguy64
Newbie

Reged: 12/29/11
Posts: 1
Re: Life with meds years later new
      #259675 - 12/29/11 02:45 PM

I've been on meds since AZT came out in about 1989.
Now on Atripla, feeling good but my anti-depressant is helping. I've been through many complications,Wasting,MAC,Lipodystrophy,Lipohypertrophy,buffalo hump, neck fat, no meat on bones,0 cd4 count, millions in viral load. POZ diagnosed since 1988. Heart issues neuropathy much more. I'm still mobile and blessed to be on this earth living with AIDS, HepB and Heart Troubles. Some days I feel like Garbage and then have good days. Blessed to have a Family that supports me and my issues. By the way my wife has AIDS also and we fight together..

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mkaipo1
Newbie

Reged: 08/23/11
Posts: 2
Re: Life with meds years later new
      #259676 - 12/29/11 03:24 PM

After about 18 years of being positive, I've gone through the gamut of the early drugs with all the ugly side effects. About five years ago a previous doctor concluded I'd do better on Atripla. I've found that the reported side effects have been minimal for me, and though I have very 'graphic' dreams, they aren't frightening or really out of the ordinary, and I haven't experienced any bone issues. As a result of the early drugs (and the illness?), I began seeing the effects of facial wasting about eight years ago, but no other significant similar side effects. Thanks to Kaiser (and the Medicare decision) I've had four Sculptra treatments covered by insurance. At this stage I have to say that my life is 'good' and I feel relatively healthy. I've come to realize that along with Atripla, mental health and outlook are the keys to my well being. All the best in New Year and the future.

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hrmrhiannon01
Newbie

Reged: 12/29/11
Posts: 1
Re: Life with meds years later new
      #259677 - 12/29/11 05:47 PM

Oh you found one.. ME .. I have been living with Full blown AIDS for almost 20 years.. and lets just say it's been pure Hell with these meds and the long term damage that it has done to me.. I have tried and tried to get this issue out yet it seems everyone wants to talk about how good life has been and how nice it has been to make changes in ones life.. I have tried my best to cope and deal with this but yet I cant.. no longer I am tired and I just want off these damn meds.. I have to take them of I will get punished by having my pain meds and other meds takin away from me.. No one understands the long term side effects that some of us are going through.. we have NO VOICE as it again seems like every one has such a wonderful life.. BUT I AS A PERSON WITH AIDS AM TIRED OF IT..SOMEONE NEEDS TO SPEAK OUT ABOUT PEOPLE LIKE ME ( US) BUT AS i SAID IT'S NOT GOING TO HAPPEN. BESIDES.. WHO WANTS TO READ ABOUT SOMEONE WHO IS HAVING A DIFFICULT LIFE LIVING WITH THESE MEDS..I AM HAPPY THAT OTHERS ARE ABLE TO COPE BUT DAMNIT TO HELL I AM TIRED OF BEING PUSHED ON THE SIDE ABOUT LONG TERM SIDE EFFECTS OF PERSON WIITH HIV/AIDS. - THANKS RAIN

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1786
Loc: Jersey Shore
Re: Life with meds years later new
      #259678 - 12/29/11 07:01 PM

Thanks for being honest and candid Rain.In most part people on some cocktail regime or even the single dose of Atripla have minimal problems. And even their major is minor compared to those unable to tolerate meds. Even though there have been many new meds coming down the pike not to mention the ones just discovered , we seldom hear of the results of long time usage. I'm sure you have gone through all the geno typing , do they still do that for the newer meds? My heart truly feels your fustration. And I'm sure you've been given sooo many suggestions that you want to scream. But I have to ask you this , have you ever truly prayed over your med before taking them. NOw hold on don't get ready to scream at me, lol , . I mention this only because there were those days when I was taking 27 pills a day for not just the aids but also for opportunistic infections and then top it off with hep c treatment. If it wasn't for my belief in prayer and some mental health counseling I probably would of had a much harder time. Well whether you see this as just another persons attempt to console you , I still felt the need to mention it. Either way my friend I'm here for you , and this is why I put this topic out there. For those that think getting infected is solved with just a pill may they see that it's soooo much more than that .

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

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1786
Loc: Jersey Shore
Re: Life with meds years later new
      #259679 - 12/29/11 07:07 PM

Thank you everyone for your honesty and may all have a good strong new year.

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

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JPalmer
Newbie

Reged: 07/15/09
Posts: 4
Re: Life with meds years later new
      #259682 - 12/29/11 09:08 PM

I;ve been on various drug combos since a month after my diagnosis with AIDS 15 1/2 years ago. I've experienced neuropathy, lipoatrophy, lipodystrophy, diarrhea, had vivid dreams and felt drunk when I took Sustiva, extreme fatigue, muscle spasms in my calves and feet (primarily during my sleep), high blood pressure, high cholestorol, diabetes, some flirtations with kidney issues, and most recently as diagnosed with osteoporosis in my spine and osteopenia in my hips. During the 4 1/2 years I took Fuzeon I developed injection site reactions that eventually made it really uncomfortable to wear shirts because of fabric brushing against the areas of skin where I injected. Thankfully that went away within a couple weeks of stopping Fuzeon. Nausea is much less an issue than it was back in the beginning for me when I often had the urge to spontaneously vomit.

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Pos_in_Thailand
Guardian

Reged: 02/01/11
Posts: 464
Loc: Thailand
Re: Life with meds years later new
      #259685 - 12/29/11 11:42 PM

I've been on the Atripla cocktail for 9 months now and am doing ok. The first few months were hard; crazy dreams, dizziness, etc., but all that has gone away now. I noticed that I do need to go to the bathroom first thing in the morning and that it is a little loose, but not terrible, and it's over with for the day. I notice that I do tend to get fatigued in the afternoons, but if I keep up on my evening work outs and aerobics, it helps a lot. The fatigue is much worse during times of not working out. I have gained a bit of belly fat as my girlfriend has as well. She has had NO other symptoms though. She had some stomach upset while on the Bactrim while we were waiting for her to get out of AIDS, but she did pretty well and things returned to normal once she got off the Bactrim in October.

We take a lot of preventatives to help make sure we will stay healthy. Out doc has us on Samarin to help protect our liver, as well as a good multivitamin with minerals. We also take a Caltrate Plus to help prevent osteo. We take CoQ10 to help protect the cardiovascular system, and I take Jiao Gu Lan to help lessen my blood pressure (it went up a bit because of the Truvada).

So far, the strategy is working well. We are undetectable, my CD4's are in the 900's and my girlfriend's rapidly shot from 67 to over 300 in under 5 months and are expected to keep rising. Our liver and kidney panels look excellent - mine better than before my diagnosis.

It's just under a year for me, so time will tell, but things are ok so-far. We do understand that things may get complicated later, so we know that is a possibility. We'll keep you posted....

Cheers!

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Pos_in_Thailand
Guardian

Reged: 02/01/11
Posts: 464
Loc: Thailand
Re: Life with meds years later new
      #259686 - 12/29/11 11:50 PM

I'm so sorry to hear that the meds are incompatible with you. Yes, it's important that everyone hear you and understand that this situation is not solved and that some people are not being helped. This helps urge further research and technology to be pursued. I am so lucky to be able to tolerate and be helped by the medications, but know that that could change at any time, for anybody. I pray for you and hope that something will come along ASAP that will help you. Please tell us what is happening. It's important that we, as a community, understand that everyone is not fine and that there is much more work to be done.

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LittlePal
Newbie

Reged: 12/29/11
Posts: 1
Re: Life with meds years later new
      #259687 - 12/30/11 12:00 AM

I have been on meds for 12 years. I started during my conversion as I suspected (accurately, it turned out) that I might have been infected. The cocktail has always included Sustiva, which has made for wildly vivid, often disturbing but usually merely entertaining dreams plus some other drugs. I quit Combivir after noticing some gauntness in my face, since corrected with Sculptra. I feel some fatigue but that may be a function of age (60) although I won't admit that. All in all, I have been blessed with few complications other than an embarrassing loss of insurance and reliance on a public plan - and an expensive one at that. Exercise helps a great deal, both cardio and weights. Best to all

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Life with meds years later new
      #259868 - 01/05/12 08:18 AM

Hi RiverPrincess,

I was intrigued to see your posting because I am very concerned about this issue of what is happening to us either as a result of the continuing, though lowered, presence of HIV or as a result of the anti-retrovirals that we are taking.

My concern is that when I report side-effects or physical problems to my HIV specialist or one of his specialist nurses they don't respond with great concern but do write what I say down in the file that they keep on me. However, I don't believe anything at all then happens with those notes. I don't believe they pass that information on so that it is all pooled and analysed by computer at some important medical centre.

And I believe my doctor should be passing my feedback on! Why? Because when combined with the feedback of other patients it will be meaningful and could be valuable!

What actually happens when I report a side-effect or a physical problem is that the doctor and/or nurses just look very sympathetically at me (easy to do) and then they just shrug their shoulders and either say that the problem I'm reporting is:

- just a common result of HIV infection or ARVs
- nothing to do with HIV infection at all
- nothing to do with ARVs at all

So despite the sympathy, each of the above responses just dismisses whatever problem I have reported!

I want to grab them by the shoulders and shake them and ask, "But how do you KNOW?"

Because they should be listening to ME, to US! We are the ones who have the virus and we are the ones who are taking the ARVs!

ARVs started appearing in the mid-90s and all new ARVs are always tested on a group of patients, but it seems that my HIV doctor and HIV nurses have decided that the data stops there! That someone else does the data analysis and that the data analysis has been done, once and for all.

But that is surely so wrong! Why? Because HIV continues to work cumulatively in the body. And the continual use of each ARV has cumulative effects. AND WE are the very people from whom scientists should be taking feedback and analysing it.

But at my clinic they really are NOT interested. It's just about taking our blood, seeing whether we're becoming resistant, and switching us to new drugs if need be. Yes, they patiently write down all the aches, and pains, and side-effects we report . . . but they're only doing that to make us feel "listened to"! They're not passing that information on up the ladder to anyone!

On three or four occasions when my doctor or one of his nurses have told me that one of my conditions is NOT one of the side-effects of my ARVs or HIV I have gone home and done lots of googling and I have found that they were wrong! When I then pass that information to them they either simply say nothing at all (they simply don't respond), or they respond in a defensive way, perhaps by saying that the information is not relevant to most of their patients. In fact, I can tell they really don't like me doing any research at all. They just want to give me the drugs and get rid of me.

Why is this? I put it down to "fatigue". My doctor and nurses have all been working in HIV/AIDS since the 80s. They went through that horrific period when nearly all of their HIV patients died in awful circumstances. That's no longer the case and they think we should now be very grateful and just take the meds and shut up. They're tired. They've been at this game for a long time and they really don't have any energy left either to help find a CURE or to work hard on eliminating the long-term effects of ARVS and HIV.

The worrying thing is that I have observed that my doc and the older nurses are passing their attitude on to new and younger nurses.


--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1786
Loc: Jersey Shore
Re: Life with meds years later new
      #259875 - 01/05/12 09:26 AM

Hey there BWB ( if thats ok )
Sadly you have discribed not only how things are at my clinic but I'm sure how it is at many. I do know that the nurses and doctors do have their " pow wow's" at the end of the patient schedule but where it goes from there I really don't know.Remember when the symptoms of lypo was just emerging? Well I remember how at each appt I would tell them that I was feeling sooo bloated in the mid section and each visit would be another 3 lbs heavier . And I was told that I was just imagining things and perhaps I should see the dietician. Then about 8 months later the realization of what the med Zerit was doing but was told that that was just how things were with side effects. I then was losing soo much muscle mass that I was try steriod injections. And I still wasn't putting on weight , I was losing still. But I wasn't eating right because of the weight gain . A female thing lol . I was going to the Curves gym but in 9 visits there I lost 9 lbs. So I stopped that and then had to fight to hope to continue the steriods. I even had to submit photos of my body shape as documented proof. Talk about humilating embarrassment as I knew the picture was being passed around . And I still wasn't approved for continueing steriod injections. So after that I no longer cared about telling them stuff. Though I did tried to show the nurses how my stomach torso looks like a bunch cellulite but of course they didn't see it. And as for the female aspect , when going through a GYN appt your made to feel dirty because the meds will give all women yeast infection , but not like the " normal " ones that we can get. One female client said to me when the pap couldn't be done because of the infection " Yuck !!! didn't you know you had it !!!" But she came from her appt with the same results. Still didn't make me feel any better . See thats why I posted a topic about women and meds but for some reason women don't want to talk about it probably due to embarassment. But the drs just see it as a woman thing not a meds thing.
Don't get me wrong , I am very thankful and really like the team at the health dept where the clinic is but if one has serious problems they are not equiped to handle it . Other places are but I don't go there . And these doctors are not scientists , though one of ours was a key factor in discovering legionaires desease . But even her, in the biginning , when I ended up in hospital with sever toxo told me I had no morals working in the field that I worked in with being pos. Thankfully 17 years later she sees it differently . But it's been a rough road . A road that the newbies aren't aware of . And I'm sure once the long term effects of med use is truly looked at, that too will be a road with bumps and pot holes. but hopefully they won't be too rough cause my skinny boney butt will need its tushie cushion.

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

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