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HIV Health and Treatment Issues >> Treatment & Side Effects

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Reged: 01/12/10
Posts: 9
Loc: R.I.
started meds and hate it.
      #251860 - 08/27/10 09:04 PM

I started meds because my vl was too high 100,000 and cd4 dropped to below 500. I don't have any physical issues with meds but I is more emotional. It's a twice daily reminder of it(HIV) that before I could forget about it for a while.

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Reged: 11/27/08
Posts: 1
Re: started meds and hate it. new
      #251902 - 08/31/10 11:41 AM

Yes, and I don't think the feeling will ever go away. Med time is the worst time of day. Sometimes I wonder what will happen if I just take them all at one time and be done with it!

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Reged: 08/31/10
Posts: 1
Re: started meds and hate it. new
      #251908 - 08/31/10 01:02 PM

It never goes away, Frank. You just have to live beside it. 08.00 every day I am reminded, but I take my meds at that time because then my 'normal' day starts and I can forget. I wrote a poem about my feelings around this; can I send it to you? It might help....

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Reged: 08/31/10
Posts: 1
Re: started meds and hate it. new
      #251909 - 08/31/10 01:28 PM

I used to have that problem, especially with Sustiva. At some point you can probably switch to a once a day regimen. When I took mine at night, I would think about it in bed way too much so I switched to morning when I am running out the door to work, now I just don't have the time to dwell on it.

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Reged: 10/08/07
Posts: 4
Re: started meds and hate it. new
      #251914 - 08/31/10 06:23 PM

I had this feeling when I first started meds as well. However, for me, my experience has been slightly different than the other people who have posted so far. For me, while it still is a daily reminder, it has become routine for me and not a reminder that I dread. I don't feel upset about it. I don't feel angry about it. I don't feel depressed about it. In fact, every time I take my meds (once daily at night since I am on Atripla) I am reminded that I got another day and am living a great life. Maybe it is the other parts of my life that help with this - I practice yoga on a regular basis and adopt certain Buddhist principles to be in the moment and live without regrets.
I don't think any of us can tell you how long you will fell this way or if it will ever change. However, what I will suggest is that if you don't like the way you feel about your meds work on changing your perspective.

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Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: started meds and hate it. new
      #251918 - 09/01/10 04:52 AM

Yes, Frank, it was like that for me when I started on the tablets six years ago. But things have moved on. One simply adjusts and gets used to it.

Now I only get the feeling of shock when it comes time for me to fill up my pill-container. (I have a 4"x8" plastic "tackle box" of the sort used by fishermen or dressmakers which I keep my daily meds in.) As I sit on the bed opening up the various bottles and putting the pills into each little compartment for each day, I am reminded of the extraordinary quantity of drugs that are keeping me alive.

The realization is worse though when I take the empty boxes and plastic bottles and drop them in a special sack that I keep in the bottom of the wardrobe. Every so often that great big black sack becomes FULL of empty tablet bottles and the cardboard boxes that the bottles come in. When that sack becomes packed I realise that it signals only a fraction of the vast number of toxic chemicals that I have pushed through my body in the last six years. Then I am seriously reminded!

But there is no choice. Because of those tablets I am here, still. But I do not fool myself into thinking that everything is fine as long as I take them. No, HIV is still having a negative impact on my body and the drugs themselves are having a slow negative impact too. But, as I say, there is absolutely no choice unless I want to develop AIDS and die.

So, Frank, be assured you will get used to your daily reminder, and soon it may become a fortnightly or a monthly reminder. These reminders, however, are very valuable. They remind you of reality, and, if you are sensible, they remind you to absolutely MAKE THE MOST of every day you have! Do that and you will end up having made more of your life than most people who do not have a serious life-threatening condition! Your reminders can be a massively positive thing provided you react to them in a positive and active way.

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

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All Star

Reged: 04/02/09
Posts: 84
Loc: Milwaukee Wisconsin
Re: started meds and hate it. new
      #251921 - 09/01/10 10:15 AM

I thought I was the only one who got that reminder every time I took my meds. Nice to know I am not alone. I also feel much more anxiety when I have to refill my prescriptions, but to be honest I am reminded daily. It has been a year and a half since I found out I was HIV+ and AIDS. It has gotten better along the way, but that 'little voice' comes daily knocking you down a peg or two reminding you of this disease. I was happy to read the post that stated the thought was turned positive by thinking how grateful to have another day because of the meds. I will have to try to adapt that attitude to my daily knock down. I started a blog the day I found out I was HIV+ January 7th, 2009. You can go back all the way to that day and forward at my blog and read, with great honesty, all I have gone through and delt with. The link to my blog is below this posting. I am so grateful to this web sight and all the people I have helped and helped me along this path. I have to admit, I feel healthier today than I did 5 years ago, so the meds must be doing what they are suppose to do. Dave


Edited by DJones (09/01/10 10:16 AM)

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Reged: 06/17/09
Posts: 165
Loc: Georgia
Re: started meds and hate it. new
      #251923 - 09/01/10 12:09 PM

Frank, Frank, Frank (and everyone else) - Where to start???

I think somewhere nearer the beginning....

Many, many years ago (back before the last ice age when dinosaurs still roamed the Earth) there was HIV/AIDS, but there were NO meds. Imagine not having to get out of bed in the morning and be reminded that you had HIV by having to take a couple of pills. No, you just got up and went about your happy life. Not knowing if that was the day you were going to finally die from one of the at-the-time new opportunistic infections - Kaposi's Sarcoma, Pneumocystis Carinii Pneumonia (PCP), or just a common cold. Yes, those were the good days when we could go to the hospital to see more than one friend at a time. Usually in the same ward. Just go room by room. And, the people in the rooms changed fairly regularly. Of course, we were much busier at the time having to go to so many funerals. But, that got to be old hat. You just kept a black suit handy.

Do I feel for you? Let me be succinct in my answer - NO!!!

I think this is a major reason we're seeing an upsurge in HIV cases. It's no longer a death sentance. Now, HIV/AIDS is a longterm managable disease. Yes, it takes some effort on your part to go trudging to your doctor appointments (10 miles uphill through the snow both ways); to go trudging to get your blood labs done (that same 10 miles....); to go trudging to the pharmacy for your meds (WHY is it always those 10 miles?).

The stories some of us old timers could tell you and others if you were willing to sit and listen.

Back when I first tested positive (1988) there was only a blood test. (Women were still told they couldn't have this disease.) You went to the clinic, had the blood drawn, and went back 2 weeks later for your test results. You know what my "counseling" was when I found out? A person sitting there telling me he was sorry to tell me, but.... I in no way harbor any animosity towards those people who worked the clinics of the day. They provided a wonderful service to people most of whom were going to die in years (many more to die in just months or even weeks or days). They were compassionate. They were caring. They knew there was basically nothing else they could do. You found out you were positive you started making plans for who was going to get your pet. If you could find anyone who would live longer.

I now regularly meet with the mothers of some of those people. They would have given anything to be reminded that their son/daughter had HIV. If their child were still alive. Instead we remember the lives of those who have passed and the dates on which they've died.

I'm going to make an assumption here. I'm going to assume that the "74" in your identity is the year you were born. This makes me 10 years older than you. Putting you in your mid-30's. There is currently no reason why you shouldn't live until your 60's if not longer. That "twice daily reminder" is what is going to keep you going. Don't think of it as a reminder that you have HIV. Think of it as a reminder that you're still alive! Yes, you could stop the meds either temporarily or permanantly. But, yes, you could die.

Consider those millions of people who have died from this disease because they had no meds. Take your meds. But, go out and do something constructive with your life. It doesn't have to be anything major. Helping in a soup kitchen. Chairing a support group. Collecting toys for children at Christmas. Calling your parents regularly. We should each do to the best of our ability.

It's been said that no parent should ever have to bury a child. When I became sick and had to go home in 1999 both my parents were still living. The only thing I thought of was that I wanted to live longer than they did to keep this axiom from becomming reality. My parents both passed more than 8 years ago. Thanks to my daily reminders I am healthier now than I was then.

Society as a whole needs to be slapped hard. They/you/we have become too complacent. Donations are way down to HIV support facilities. But, every year there are more and more people who test positive for HIV. I'm not here to pass judgement. We each do that to ourselves. But, I am here to try to get some people awake. And, active.

People who forget the past repeat the past.

This goes for wars and more. Right now it's going for society as a whole. People need to be reminded of what HIV was in the earlier days. The horror stories of people going to the hospital for the latest "treatment" to try to slow the disease. And, often not a local hospital. There may have been only one hospital in your state (if you were lucky) to perform some of those treatments. This meant hours of driving to and from. Groups of friends together for a single person in any given week. All anxious to see if that bariatric chamber/blood boiling/experimental IV was going to show any promise.

My vl has been below 10,000 for just about all the past 10 years. My last cd4 count was above 1100. I am so greatful for that daily reminder that I would get down and kiss the feet of those who have made it possible for me to still be here!

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Reged: 08/27/10
Posts: 7
Loc: Northern Engkand
Re: started meds and hate it. new
      #251943 - 09/03/10 04:09 PM

All of us recently diagnosed or recently on meds people should remind themselves of the horrors of what people 20 hey even 15 years ago had to go through as iam says.

But don't feel bar for mourning, we all need to mourn for the part of our lives that won't be the same. I'm 23 and I have thrown a lot away from a couple of reckless moments. But I have so much more to gain and there are a wealth of inspiring people out their living life to the full.

It's hard for me to think I'll probably not remember not taking meds when i come to the end of my days (if a cure isn't found by then) but what doesn't kill you makes you stronger and HAART certainly doesn't kill you. Think yourself lucky that you have had 13 more med free years than myself and what's more, we should all thank ourselves incredibly lucky that we have access to meds at all. Spare a thought for those in developing nations where being told to put your affairs in order is still a standard part of getting your results.

HIV takes somethings out of our control but that's all the more reason for us to grab the other parts of our lives and make them work for us. Those pills help you do that and I kiss them every night.

Choose Life

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Reged: 01/12/10
Posts: 9
Loc: R.I.
Re: started meds and hate it. new
      #251950 - 09/03/10 09:38 PM

I'm actually getting over the pill blues, manly cause I don't have enough time in the day to get stuff done. Classes are back in secession and I've only got another year and a half to my degree is finished. I had a bad couple of years in general, my father died of cancer both grandmothers and a close friend. So my having HIV is linked to those events cause I found out a week or so before my father cancer diagnosis etc. My mom had passed away 10 years ago and only have a handful of relatives left but they have been cool about it so I am lucky. I pisses me off about how much the pills cost...more could get treatment if they would drop the price...then again some countries don't even have the money to treat cheap ailments or give polio vaccines

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Reged: 07/16/10
Posts: 12
Loc: UK
Re: started meds and hate it. new
      #251973 - 09/07/10 06:29 AM

HI there!
Ive also had a rough start to taking meds 3months ago put the first lot had a server rash reaction 2nd lot given wrong anti sickness tablets with it and made me worse and now I am on Truvada Atazanavir and ritonavir and taking anti sickness drug Domperidone - 'almost 2wks into it doing ok.'
In the months leading up to starting medication when the doctor told me it will be a good idea to start taking medication soon my voice kept reminding me I'm positive several times a day, at times it got me down and be angry with myself and other times I would be thinking what a joy that there is the option available to me to take ARV's to pro long life, As so well put by YOUNGUK.
I was diagnosed at the age of 21 while studying at university this made me think more about my eating habits getting the right foods inside and exercising and I believed that I could keep off taking HIV meds for a few more years because of it.
I kept on at uni, I had faith in my doctor and him telling me they want me to lead a near normal life as to before I even knew I was HIV positive, I had appointments every 6months or so then every 4months then 3months and when I was 26 nearly 27yrs went to 2-1months. I am 27years old and on the right medication now I believe and I don't have too much anxiety over what will happen in a few weeks few months time like I used too.
Also taking 4pills a day along with anti sickness tablets 3x a day made me feel a bit like a pill machine and one tablet Ritonavir large and hard to sallow. I also take Omega3 fish oil and vitamin tablets so I found when I take my meds in evening I would think of them as like taking normal vitamin tablets and that has helped me to break to barrier and anxiety of having HIV.

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Reged: 02/01/11
Posts: 464
Loc: Thailand
Re: started meds and hate it. new
      #254280 - 02/08/11 02:40 AM

VERY true!

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