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Author Topic: Question for the ladies on meds  (Read 5183 times)

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Offline confusedme

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  • Posts: 74
  • wishing away reality
Question for the ladies on meds
« on: April 09, 2008, 04:00:42 AM »
Did any of you feel generally bad prior to having to start medication? Lately I have been feeling nauseous, light-headed and generally weak. I am worried that I will have to start meds. I just started a new job and would hate for side effects to interfere with my attendance or performance at work.
08/13/07 - Diagnosis confirmed
08/30/07 - T-cells 400, VL 6,500 (Baseline)
11/30/07 - T-cells 428, VL 9,950

Offline Dragonette

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Re: Question for the ladies on meds
« Reply #1 on: April 09, 2008, 05:57:36 AM »
Hey there Confused, been a while!

yes, I felt horrible, a few days before diagnosis actually I have the inexcplicable feeling that I was slipping away into another dimension, either losing my mind or dying, but I didnt know why so I just ignored it. I got started on meds even before the western blot (confirmation test) cos my CD4s were pretty low.

but it doesnt mean this is the reason you feel bad, could be anything, stomach bug, allergies, changing weather, stress, hormones... check with your doctor & your CD4s too, I guess you will soon cos you talk about getting on meds.
Anyway, I never felt really bad on meds (touch wood), in fact I was astonished how my overall health and stamina improved when the virus was supressed. I do have occasional stomach issues now but this is my 3rd regimen (more than 2 years so far), and when on sustiva I had some mental sides but they took a while coming so the first months were quite bearable. What I'm trying to say is, given the right combo and a bit of luck, you would hopefully feel better on meds, not worse, esp after the first days.  :)
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline BT65

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Re: Question for the ladies on meds
« Reply #2 on: April 09, 2008, 07:32:36 AM »
Confused, it sure is good to hear from you.  To tell you the truth, I can't remember how I felt before starting meds, as I have been on meds for so many years.  But I imagine I felt bad.  Please keep in touch this time, mkay?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline ubotts

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Re: Question for the ladies on meds
« Reply #3 on: April 09, 2008, 11:05:56 AM »
Yes I remember I felt like crap,,Tired and dragging myself to do things..
It was Christmastime, and I ususallly love to shop for friends and family, but I just
couldnt do it..I just wanted to go home and stay in bed..

I felt light headed and very weak....So I went to my doctor and low and behold,
my tcells were down to 27..

Thats when I knew I had to start treatment..

I put it off for 16yrs and did pretty good, but when that time comes,
you need the meds...

I know your starting a new job, but I wouldnt worry about the side effects
at work, I would worry that your starting a new job and your light headed
scared and confused...

My advise is to see your doctor and find out where you stand with your tcells
and VL...

Good luck to you....Hang in there.
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline Blessed1974

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Re: Question for the ladies on meds
« Reply #4 on: April 09, 2008, 12:00:54 PM »
Hi Confused,

I'm with Betty, its been so long I can't remember.  Sorry I can't be any help :(

Offline wishful

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Re: Question for the ladies on meds
« Reply #5 on: April 09, 2008, 12:34:27 PM »
Hi, confused...I had to start meds cus i was preg, and that was also when i was dg...so any sickness i may have thought i was feeling...i prolly attributed to morning sickness....im with drag...chk with your doc..and have him run your numbers....
Live life to the fullest...

Offline Veritee

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    • Post Natal Illness Support
Re: Question for the ladies on meds
« Reply #6 on: April 10, 2008, 12:11:49 PM »
Hi Confused

I do not know whether my input will help you at all - as I am basically in the same position as you. And it is all very new to me.

So everything I say is just my opinion based on what I have learned so far from my own very new experience

I have only recently been diagnosed - not on meds as yet, but I should be on meds because my CD4 count is under 200 now and falling - but I have delayed starting meds  for about 2 months due to my commitments but know i have to start soon.

And I feel awful - every day

I feel nauseous most days, light headed to and dizzy at times, tired, no energy, I have episodes of diarrhea, thrush and often have other bugs.

Thankfully I have not yet had any AIDs defining illness like PCP etc that my husband went down with and only just escaped dying from - but I just do not feel 'right' at all!!

And this is not how I normally feel as I am 55 years old and have usually, my whole life, had very good physical health.
However I knew something was wrong about a year or so ago as i just did not feel right - what Dragonette said
'slipping away into another dimension either losing my mind or dying'

This is exactly right - this is exactly how I started to feel last year and feel right now

And I guess this feeling is right - we are dying if we do not take HIV meds!!!!
i.e quite slowly but basically death is the only end result if we do not - so there is no option really about taking them - the only option is when you start taking them!!

I guess we do know when we are very ill, even if the symptoms are subtle. I once nearly died form peritonitis and felt like this then ''slipping away into another dimension either losing my mind or dying' and I feel the same now.

I went to see my HIv doctor yesterday about starting meds - and basically this was what was explained and very clearly

That I have no option about taking HIV meds if I am to live - and neither do you!! Or any of us with HIV I guess?

I do have a choice to delay this a bit longer until the time is right for me or I am ready. And I so understand why you may want to if you have just started a new job.

But the reality is that to survive - you have to take them eventually.

I am sorry if it may appear I do not have any right/experience/ knowledge to say this as I was only diagnosed myself just under 3 months ago.  but I have probably had HIV without knowing for up to 10 years already  - and I have known people with HIV for many years before this

And I do know that we do have to take medication and sooner rather than later and that to delay will not be a good thing in the long run in terms of survival


It is unfortunate that you are feeling as you are just when you have taken on a new job

 - as if you had not I would have suggested you take a couple of weeks holiday from your job or any other commitments ( if you are not due any holiday perhaps you can say you have a family problem you have to deal with and take the time off unpaid) and use this time to start and adjust to the HIV meds.

But if you have just started a new job you can not do this - What are your CD4 counts like? maybe if they are higher than 250 you can work a month or so and then ask for time off for medical or family reasons?

In my unqualified opinion, think the way you describe yourself as feeling means that you may need to start meds - but what do i know - and also you have not said what your CD4 count is ? As this is a better indication as to whether it is urgent you start meds right now

You must know your CD4 count - what is it?

Anyway it is not a good time for me to start meds either - but I am probably going to have to next week - there is no real choice if i am to survive - before these meds HIV was fatal and will be for anyone who does not take them once their CD4 has dropped to the level they have to start the medication

So from someone new to this too....... I wish you luck and hope I  can support your through your first weeks of meds when you decide to take them or in your decisions as to when to take them - on a mutual basis as maybe we can support each other

Veritee XX
« Last Edit: April 10, 2008, 12:29:59 PM by Veritee »
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline positively_me

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Re: Question for the ladies on meds
« Reply #7 on: April 10, 2008, 10:30:34 PM »
Hi Confused!

I've been positive for going on 8 years and frequently have nausea, fatigue and light-headedness.  I went four years from diagnosis without having to be on meds and felt this way on and off.  I started meds that didn't work for me for various reasons, and was on them for about a year and half....I still felt this way.  I took a two year break from meds but still had bouts with nausea and fatigue.  I've been on Atripla 4 months now and just recently started having bouts so bad that it's interfering with my life.  My doctors not sure why and they're checking my end organ functions to make sure everything is ok.  I think it is...I just think this is how my body deals with it. Crappy, yes I know.   :P
Great minds discuss ideas; Average minds discuss events; Small minds discuss people.  - Eleanor Roosevelt

Offline confusedme

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  • wishing away reality
Re: Question for the ladies on meds
« Reply #8 on: April 11, 2008, 12:17:19 AM »
Thank you for all of your advise, wishes and experiences. They help more than you could imagine.  I did see my doc today. She felt like my general "feeling bad" was more stress related than HIV. My VL and CD4 were taken. I should have them back in a week. I'll be sure to check in and share the results. Since talking to her and reading all of your responses, I'm starting to feel like maybe I was having more of a panicky over  reaction...especially since my last CD4 count in November was 428.

For those of you who remembered me from a few months back, I stay so preoccupied that I rarely have time to check the dating thread. Maybe one day life will slow down enough for me to catch up and hang out with everyone again. Until then, thank you so much for being so supportive.
08/13/07 - Diagnosis confirmed
08/30/07 - T-cells 400, VL 6,500 (Baseline)
11/30/07 - T-cells 428, VL 9,950

Offline stella8940

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  • Posts: 14
Re: Question for the ladies on meds
« Reply #9 on: April 16, 2008, 09:28:32 PM »
 :) Hi Confused, I can understand where you are coming from. Meds can be hard to start, and I fought it for a long time cuz I was stubborn and scared, it was like turning a corner in my disease that I did not want to acknowledge. But putting off meds because it will interfere with your life is not a choice you have for very long.
Your life, at some point will depend on those meds, to prolong your life, not interfere with it.
When I started it was AZT, ugh was I sick. I thought if this made me sicker than how I felt off the meds, then the hell with the AZT!!
There are a lot of meds out there. I have started new cocktails a few times and my Dr. Prescribed this other medicine to help with the side effects of the HIV meds. It is a medicine that was created for chemotherapy patients who had what they call "Medicine induced nasuea" it is AWESOME!! So if you start a new HIV cocktail regimen, and it makes you feel like CRAP Dizzy, nausea, etc ask your Dr. for KYTRIL 1MG it is made by Roche.
If you have insurance it may need a preauthorization, but it is worth it. It is the one thing that helped me survive those first weeks of a new cocktail.
Take care O' you,  and remember...
Yesterday is History, Tommorow is a Mystery, Today is a GIFT, thats why its called the "Present"
Stella  ;)

Offline Veritee

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Re: Question for the ladies on meds
« Reply #10 on: April 17, 2008, 01:08:19 PM »
Yes although I am not on meds yet I agree - that meds can only prolong your life and if your doctors say it is time to start, then please consider it?
I am not on meds because I was only diagnosed in Jan and while my CD4 counts were quite low -they were not low enough to make it critical and I had no obvious infections like my husband so I choose to delay meds until my husband, for whom it was critical as he was very ill,  had started his and was established on them.

I start next week - I have them here with me now and am starting on Monday now.

I did of course have problems coming to terms with taking the meds but most of the reason I delayed it were practical - my husband was very ill and I did not want to be suffering side effects when he was so critical in case I had  to make a dash with him to drive him the 20 miles or so to the hospital while dealing with my own first side effects  -  if I was to get them - from the meds. And I have a job of sorts and a household to run and my husband was so ill I was nursing him - but now he is better I am going to start them

I was told that their really is no health benefit in delaying them once your CD4 counts get below 400.  But I can see that if you are hovering around this level you may not want to start as yet. Mine are around 200, sometimes up but sometimes down,  so there seems no point in delaying it any more.

You probably can at least until you are established in your new job - but I do not know as I am no expert so I would go by what your doctors say.

But even with higher CD4 counts, HIV damages your body and your brain too ( well my doctors told me that it does anyway - I am very new to this so can only tell you what I have been told)
But as Stella says, there are lots of newer drugs that are well tolerated.

But of course anyone of us may be the exception and have bad side effects even on the newer meds - I will let you know next week after I start how I get on.

But my husband did not have any side effects he recognised at all and just in case they gave him a drug created for chemotherapy patients too. He left it off after a few days and found he did not need it.
They are giving me the same drug to take with my meds, I hope I do not need it either, but if I do, at least it exists and works for most

I will let you know

I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline yasoza

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  • Posts: 22
Re: Question for the ladies on meds
« Reply #11 on: April 18, 2008, 01:45:06 PM »
Hey confused
 I started my med in january but been HIV+ since 1993, yes when i started them it was really crap in the morning as i only take them at nite and once aday, to make matter worse, am also on antibiotics to avoid any infection as my CD counts were  160 when i started my med,i have few side effects,like skin red rush in my arms coursed by antibiotics. Before i starting them i was feeling week, everytime i go shopping i felt my legs worn out but since on medics , am all feeling good :D. You just have to live with it and get used to it as your day to day normal life


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