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Author Topic: The End of The Rainbow  (Read 2274 times)

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Offline NewYorkKat

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  • Posts: 134
  • Hangin' On Staying Strong
The End of The Rainbow
« on: October 31, 2009, 11:42:21 AM »
2009 has been a wonderful year for me: I finish college with a degree, I go to Europe twice: Germany and Italy, I start making music again, I start to lose weight again with my diet and exercise routine that i find most helpful with dealing with life, I took part in a clinical trial and get a nice check for it. Sounds good, right/?Maybe...

Some three years after the Great Tragedy of 2006, I receive word that I might have to start meds:
VL: 17500
CD4 297 12%

I told my Doctor it could a number of things; from stress, That before I took my most recent blood work, I had a flu shot some 8 days before and that I also had a cold. We both agreed that we should wait and see if the next blood work would show a trend and i hope and pray that it does not.
Even with the thought of taking meds kind of scares me, I know that someday, the rainbow would come to an end.

Any thoughts? Would it look like I would need meds now? Which ones should I take? Atripla? (Sustiva scare me more!)

Hope everyone is fine and yes, i know it been a while!


Offline Buckmark

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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: The End of The Rainbow
« Reply #1 on: October 31, 2009, 12:06:02 PM »
First, congratulations on what sounds like a fun and productive year for you.  Don't lose sight of that just because you may need to start meds.

If your recent test results came after you recently received a flu shot, a re-test is in order.  That said, given the test results you cite above, I think it is time to strongly consider starting meds.  You should work with your doctor to establish the pattern of your test results, and make a decision.  Eventually, for 99% of people, HIV takes its toll on the immune system -- the time that takes can vary widely.

When I was deciding to start meds, I was totally freaked out:  the cost?  the side-effects?  will they be effective?   Looking back 5 years, it was definitely the right thing for me to do, and I wonder why I was so concerned.  (Of course, that's easy for me to say since things have worked out well for me).

There's a good chance meds will work out well for you too, if/when you need to start them.  There are soooooo many more choices in meds these days.  If you're scared of the Sustiva component of Atripla and it's "central nervous system" side-effects, then choose a different med.  If your doctor isn't cooperative, then you need a new doctor.

Only you and your doctor can decide when it's time to start meds.  Though if I were you, I'd be seriously consider it.  You may find that you feel better, both physically and mentally, after starting meds.  That's my experience, all-in-all.  My biggest concern these days continues to be the cost of / access to meds.  I do worry from time-to-time if they'll stop working, but I'm relieved when I think of the many other drug options out there today.



"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Dale Parker

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Re: The End of The Rainbow
« Reply #2 on: October 31, 2009, 12:45:28 PM »
Hey NewYorkKat: Sounds like you had a great year. I can't tell you whether to start meds or not that has to be between you and your doctor. I was put directly on meds and really didn't have a choice of when or what meds. It sounds like you have a little bit of time so you can do some research on the meds and their benefits, sideaffects and costs. I had some slight sideaffects but I waited them out and eventually they went away. Hopefully you have a doctor that you like and can work with.
Just remember that at the end of every rainbow there is a pot of gold.
Best of luck and health

I love your Footprints in the Sand poem. I had that read at my mom's funeral (which was 6 years ago today) and have it framed and beside her ashes.  However, I have noticed that there are a lot more footprints in the sand. Friends, family and the people on this site have all helped carry me in the last 6 months.
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline StacheBC

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  • Posts: 266
  • Hello
Re: The End of The Rainbow
« Reply #3 on: October 31, 2009, 01:37:21 PM »
Hi Kat,

You don't mention your previous numbers so we can have an idea of what your absolute and % of your CD4 have been.
Unless those numbers are a blip in a sea of higher absolute and %s, if they were my numbers I would start treatment. (I'm not a doctor, I just used to pretend I was one when I was a kid  :D, so this is just my own personal opinion).

If you and your doc decide to start treatment in the near future.
As someone that started a Sustiva/Truvada (Atripla) based regiment 3 days ago, keep in mind that it's a very popular combo for treatment naive people (it is for several reason). Like any combo, some people might have problems with it but that can be said about other combos as well. So it's important to work with you doc, since if needed under his/her supervision you can change combos if you need to.
Like you, I was a bit concerned about the Sustiva component of my combo... So far, knock on wood, side effects have been minor (very doable for me). I already used to take an ambien every night prior to going to bed for the last 5 years (never forgot to take my ambien), so for me a regiment I can take prior to going to bed was ideal, since I tie it in with my Ambien habbit.

Kat glad to see you back, you used to be more active in the forums around the time I got diagnosed. Still remember you avatar.

Best of luck to you and please keep us posted.
Big hugs.

Offline NewYorkKat

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  • Posts: 134
  • Hangin' On Staying Strong
Re: The End of The Rainbow
« Reply #4 on: November 01, 2009, 10:38:36 AM »
Thanks for all the replies! Right now, I am on a "wait and see" situation and get another set of blood work done on November 10. I am sure I will be fine but I will keep you posted.

Thanks again!

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: The End of The Rainbow
« Reply #5 on: November 02, 2009, 12:43:29 PM »
Good luck!
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Re: The End of The Rainbow
« Reply #6 on: November 04, 2009, 04:21:08 PM »
...I receive word that I might have to start meds:
VL: 17500
CD4 297 12%...

Any thoughts? Would it look like I would need meds now? Which ones should I take? Atripla? (Sustiva scare me more!)

NY Kat:

Hi! Not an "end of the rainbow." For example, I had an undetectable VL for over a year a bit into a long STI (Scheduled Treatment Interruption). It was great. It ended, as expected. I couldn't help but feel the disappointment. That was years ago. There are many more good days ahead for me, and you too!

Congratulations on your educational achievement and travel experiences!

My meds: Isentress + Truvada

Start when? Get tested monthly now, to check that CD4 level . If it stays around/below 300, please consider starting treatment. You can choose your preferred treatment while you wait. BTW: If you have private insurance, get your chosen meds prescription a little before you start (ie 2-3 weeks) to build a little med stockpile for the future.

I don't share the experience some (without OIs) report of "feeling better" with meds. Not me! So far, I have "felt better" during the cummulative 12 years untreated than during the 7 total treated. I do take meds now---to preserve what's left of my immune system. I am more concerned about what I don't feel than what I do. My current meds are very tolerable. I am grateful.

 8)  -megasept

« Last Edit: November 04, 2009, 04:23:40 PM by megasept »


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