starting meds

[angelgaby]

im on the fence about starting meds....any body have any good advice???

[BT65]

Hi Angel,

Well, we probably need a bit more to work with.  What are your numbers (lab numbers)?  What has your doctor said?  When did you test positive?  I know, seems like lots of questions, but perhaps we can help you a bit more if we know your current situation in more detail.

Oh, and welcome to the ladie's forum.
  Luv,
Betty

[angelgaby]

good moring,

in april it will be 15 years positive for me...i know it may sound surprising that i just now am thinking about meds...my fear of this meds are off the charts..as far as my numbers they r were low...last t cell count was like 50. my viral load about seven thousand.. these numbers have been like this for a while now..but it looks like im starting to have lit problems here and there. and im always exhausted. my doc has been trying for the longest time to get me to start.  i have had gyn problems, neruopathy and now lit infections that seem harder for my body to fight off.. as i write this i realize meds may not be a choice but the fear of side affects continues to stop me. i dont think it has hepled that my family doesnt get it and cannot help me make this decision.

just a little info on me....im 38 have a 15 year old daughter and raising my 16 year old stepson....my kids really keep me on my toes...

thanks for listening!

[Ann]

Angel,

The meds today are quite different than those available 15 years ago. Many people have no problems with side-effects whatsoever.

With numbers like yours it's only a matter of time before you get really sick with something like PCP. How will you be able to take care of your children when you're in a hospital bed fighting for your life? I hope you start meds as soon as possible for your sake and for the sake of your children. They still need their mom at those ages.

Have a look through some of the posts in the Treatment forum to get an idea of what the meds are like today. There's no reason to be so frightened of side effects you may not even experience that you end up dying unnecessarily. Yes, it's as stark as that when your CD4s are as low as yours.

Ann

[angelgaby]

ann,

thank you so much for the comment...thinking i just need a push from some people who understand where im coming from.  i have read some of the posts in the treatment forum and it has helped. my kids dont know my status and my fear was becoming sick from meds ...although i realize becoming ill is not the answer either. my world is not a place where we discuss my situation, so what ever decisions i make are on my own.  being on this forum is becoming a huge comfort....makes u feel so good that people take the time to respond to you

thank you!

[HollyStar]

Hi Angelgaby,

I haven't been poz as long as you and I didn't let my numbers get so low but I was terrified to start meds. What helped me was all the information on these forums and reading the drug information before I started the meds. I was still scared that I would get every possible and rare side-effect. My first combo wasn't for me (it had Sustiva) and I switched to a new one. All I can say is that this combo is a dream (for me). I feel great and I feel so much better mentally, knowing that I didn't have all that much to fear after all. Yes, it's something that you will have to continue for the rest of your life but I'd rather take these life-giving-saving meds than face the alternative of sickness or death. I don't have physical or mental side-effects from the meds but I do have high cholestoral which can be associated with my specific medications. So, that just means a better diet and more excercise. I'm fine with that, as those are things that I need to do anyway, now I have a really good reason.

Just remember, you and your doctor should be partners and decide together on a combo. There are so many meds today. Take advantage of them. They work. I really hope that you seriously consider starting meds ASAP. You need them and your kids need you to take them. Please let us know how things go. We are here for you and welcome to the forums.

[angelgaby]

this positive feed back is helping so much....i think i will be starting truvada/issentess (i know i spelled that wrong..lol) im hoping to start friday even. this was the week is done, hopefully weekend will go well and kids back to school on mon.  dont want them to notice to much.

Hollystar- so glad ur feeling good and you have the right combo. def think you get where im coming from.  i have the high cholestrol as well along with high blood pressure and a thyroid problem..those i take care of ..lol.  i try really hard to stay positive and sometimes i just end up avoiding reality!

thanks again so much

[BT65]

Angel, I've been diagnosed for almost 21 years, and I can definitely say I like the meds so much more now than what they were years ago.  I was on the high doses of AZT they used to give, plus some of the other ones, that did some damage (3TC, d4T etc.).  I also have neuropathy, but it was started from the earlier meds. 

My opinion is, that with your CD4 count, you should really be leaning towards starting meds as soon as you can.  You mentioned your children-how do you think they would feel if they found out about your poz status, because of you being in the hospital with some horrible infection that couldn't be cleared?  Really, the meds today are like a walk in the park compared to years ago.  I'm on Isentress and Truvada, and I've had no nasty side effects at all, except for the occasional gas from the Truvada.  That's it.  You need your immune system to start recovering, and soon!  It's totally understandable about your body not being able to fight off the infections with the shape it's in.  I really hope you choose life.  Please keep us up to date on what's going on with you.
  LUv,
Betty

[Ann]

Angel, Isentress/Truvada is one of the most easily tolerated combos available. I hope you start soon - good luck and keep us posted.

Have you ever thought about telling your children? I told my daughter when she was about six weeks shy of her fourteenth birthday. (about a month after my diagnosis) I've never regretted telling her. Kids are very perceptive - often a lot more perceptive than we give them credit for. She already knew something was up and was far less worried about things once she had the facts. I also took her to see my doc one time to remove the mystery of my clinic appointments. There's a very good likelihood that your children are already aware that something in your life isn't "quite right".

One of the plus sides of my daughter knowing my status is that she is so much more aware than most young adults that hiv truly does not discriminate and it could happen to anyone who doesn't protect themselves by insisting on condoms. She'll be 23 in late April and is very well adjusted. I have to wonder if she would have been less well-adjusted if she spent her adolescent years living under the shadow of my "big secret" and all the tension that goes along with hiding something as big as hiv. Kids pick up on their parent's tension and worries, even when those tensions and worries aren't spoken about. And they usually blame themselves for their parents problems.

Ann

[angelgaby]

ann,

after reading some of the other post im seeing that combo is ok. im going to start fri (will finish antiboitics first) so im not as freaked out as i was before.....thank you!!

my daughter was only 9 months old when i tested positive. her dad passed when she was 7 from the disease. i decided then not to stress her with the information, since the reality of something happening to me was real. in the last few years i have had some health issues but  i work so hard to keep things "normal"  i have thought about telling her here and there but i feel like i missed that chance and will wait till she is out of high school. i c how cruel kids can be when u discuss aids. my house is the house where all the teenagers hang out, so every chance i get i try so hard to dispelll all the misconceptions. so my hope is that i do well on the meds and can hold off a bit telling her.

it must be such a good feeling to have your daughter know the truth.  just curious when you told her how did she handle the news? were her friends parents aware? im also afraid people willl turn, a few times when i revealed my status it hasnt gone well.

[BT65]

Angel, our stories are a bit similar, in that my daughter was 5 when I tested poz, and 5 when her father died.  I told my daughter pretty much right off the bat.  The ASO (Aids Service Organization) here had some literature about how to discuss HIV/AIDS with children.  And she got educated early about how to take precautions in her own life, and what to not worry about (drinking out of the same glass, stuff like that).  And her friends she had also knew, and weren't scared or worried.  Because I educated them.  I'm not saying you should gather the kids together and tell them, but Ann's right-kids are perceptive. 

It's just to hard for me to live with such a huge "secret."  My whole family knew right from the start, and also got educated.  Maybe you should consider telling your daughter.  I mean, how would she feel if she found out by you having to go to the hospital with some serious illness? Just my thoughts....

[angelgaby]

i have thought about telling my daughter a million times...when i was diagnosed and still to this day i dont have the most supportive family. it took me over a year to tell them and almost 15 years later its still not talked about.  my mother has just refused to learn about the disease. luckily i have some amazing friends! my daughter is a good student and a really good kid so i feel at this point i would just burden her and im sure she will have some anger issues to deal with concerning her dad. not looking forward to that.  having all this wonderful input from the ladies on this forum makes me sorry i was not on here sooner.

[BT65]

Well, I'm glad you're here now, Angel.  Just remember, like I said, how would your daughter feel if something happened to you, and she found out that way?  I'm sure she'd have a lot more anger about not being able to process it when you're healthy.  I mean, I don't like telling people exactly what they should and shouldn't be doing, and you know your situation the best.  Good luck!

[angelgaby]

i started meds this morning, u have all been so helpful.

thank you

[HollyStar]

Yay for Angel!!!!!!!!!!!!!!!!!

I'm so glad for you, really! Let us know how it goes. We are here for you. This is wonderful news and I hope that this is the combo for you. After a while, it will seem like second nature to take your pills.  Good luck and keep us updated.