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Author Topic: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"  (Read 3057 times)

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Offline tnboy

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  • Posts: 108
"FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« on: February 22, 2008, 10:29:50 AM »
 :) First The Good News!

  As I have shared over the last few months, I had not been on any HIV meds for almost 3 years because of financial reasons and not qualifying for any assistance programs. As I recently shared , about 6 weeks ago I started taking some Kaletra and Invirase samples that my ID Doctor had given me. I have been dealing with many side effects but have been sticking with it.

  Two weeks ago I saw my ID Doctor, had new labs drawn, and he had another months supply of the Kaletra and Invirase which he gave me at the time and I am now taking.

  I saw my ID Doctor again yesterday for the results and My VL had dropped from 285,000 from the last time it was checked, which was November 2007, to 600. Needless to say He was Very Happy as was I. He did not check my T-cell count, which was 2 in January 2008, because he knew it would still be very low but he did have labs drawn again yesterday to check both VL and T-cell count as well as some other things. I have also went from 108 pounds to 113 since I saw him 2 weeks ago.

  This is the "Good News" that we are finally heading in the right direction it seems.

 The thing I would really appreciate some Honest Feedback on is where my ID Doctor wants to go from here. I know it is my decision I have to make and I am not asking anyone to tell me what to do but I know many of you have had much experience with the meds over the years and I am asking for your opinions but well aware I have to do what I feel is best for me.

  He had two more months supply of the Kaletra, which he gave me yesterday, but does not have anymore of the Invirase and does not forsee getting anymore anytime soon. He wants to replace the Invirase with AZT and Epivir. He had his nurse to call the pharmacy to see how much that would cost me and they have a generic of the AZT called  "Zidovudine" which cost me $7.00 for a month supply and the Epivir cost me $80.00 for a month supply. The cost part is do able for me and that is good.

  My problem is the fear I have of the AZT. I have heard so many horror stories about it and not so much positive. I do realize that "All" the HIV Meds work differently for many of us and that what ones experience is with a particular med may be totally different from anothers but I am asking for your feedback realizing I have to make my own choice.

  I realize my choices are limited but I just do not want to trade a problem for a bigger one but at the same time I realize there is no way to know that until I try it.

  I just know many of you are much more educated about these meds than I am and I have much respect for your knowledge.

I am beginning to feel some better but still very weak and have trouble putting my thoughts into exactly what I am trying to say so I hope I have made reasonable sense of all this but if not feel free to ask any questions you may have and I will do my best to better explain.

  I will add that the case worker there is working with the companies that actually make Kaletra and Invirase to see, what and if they will, assist me in any way but has not heard from them at this time.

  Thanks in advance for any advice or opinions you care to share.
 It is much appreciated,
Mike
 

   

 

Offline Iggy

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  • Posts: 2,435
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #1 on: February 22, 2008, 10:35:03 AM »
Mike,

Most importantly - I am thrilled to hear of the good developments!  I hope it will continue towards such a path for a long time to come.

I have no business giving you any thoughts on the med question as I am not on them and will let others with experience in the matters provide advice.

I just wanted to repeat though that I am heartened to hear that it seems to moving in a different direction for you.

Mark

Offline Robert

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  • Posts: 2,649
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #2 on: February 22, 2008, 11:05:24 AM »
Well, this is certainly turning out to be  good news day!

i can't really help you with the AZT question.  I've never been on it.  My only experience with it is the same as yours...only hearsay.

But you sound really good.    I certainly don't see any "trouble " you're having putting your thoughts down.  You come across clear, concise, happy and healthy.

congratulations.

robert
..........

Offline aztecan

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  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #3 on: February 22, 2008, 11:14:04 AM »
Hey Mike,

Great news on the numbers! Woo Hoo!  ;D

Now about the proposed meds, I know you have heard horror stories about AZT.

I have been on AZT and Epivir for 11 years, 11 months and an odd number of days. It has worked splendidly for me.

Initially, I had stomach/diarrhea issues, but that could have been the Saquinavir or Crixivan as well.

I also have had some lipoatrophy in the face, butt, arms and legs. But, there again, it could be the AZT, the Epivir, the Crixivan, a combination of all three, or the virus itself.

I am not trying to frighten you or dissuade you. Personally, if I were all that concerned about AZT, I probably would have switched years ago.

But it works so very well and it crosses the blood/brain barrier so I may have fewer mental effects from the virus, at least I hope I will.

Epivir is easy. It is probably one of the least offensive meds out there. I have heard of a few people having trouble with it, but very few.

You may not feel this combo is ideal for you, but, it is something that could help you for the time being until some other method of obtaining meds is found.

Anyway, that's my 2Ę worth.

HUGS,

Mark
« Last Edit: February 22, 2008, 01:35:45 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline thunter34

  • Member
  • Posts: 7,318
  • His name is Carl.
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #4 on: February 22, 2008, 11:37:30 AM »
I AM THOWING CONFETTI LIKE RIP TAYLOR OVER HERE !!

H u r r a y !!  I am SO very happy to read that a little bit o' light's coming shining on you, baby!

My opinion?  I've been taking that exact combo for three years with great results HIV-wise.  VL undetectable and CD4 up around 300.  Caution areas:  Cholesterol and, um...potty issues.  Expect Immodium. 

But under the circumstances, honey bear, I think it's worth considering.  For real-real.

Love to you and congrats!
AIDS isn't for sissies.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #5 on: February 22, 2008, 11:42:50 AM »
That's great news on the improvement.  When I was on AZT in the early/mid 90's I guess I had less issues than many others, though admittedly I'm foggy on stuff that long ago.  I recall some periodic bad headaches, and intermittent nausea issues, but nothing that was so bad that I was immobilized or anything.  Some people obviously don't react well to it, but you won't know unless you try it.
"Iíve slept with enough men to know that Iím not gay"

Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #6 on: February 22, 2008, 11:45:20 AM »
Mike,

I'm so glad your numbers are improving!  That's great news.

Perhaps someone in the forums has some Combivir (AZT + 3TC, or zidovudine and lamivudine [epivir]) they could send you.   Have you checked with Lisa?
I don't know how much she might have on hand.

Sometimes, we have to work with the resources we have available.   In other words, you play the hand you are dealt.   The strategy might change at some point, but for now, I think your doctor is giving you good advice.

Let us know what you decide, and how you are doing with it.

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #7 on: February 22, 2008, 12:34:42 PM »
Congrats on the improvement in your numbers. I wish there was something I could do to help with the meds but I don't take what you are on and I don't know anything about AZT other than what I have read here. I agree with Alan to get with Lisa on the what she has available.Wishing you the best, always!!!!
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline BT65

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  • Member
  • Posts: 10,056
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #8 on: February 22, 2008, 01:23:46 PM »
Oh I am so happy to hear about your vl!  And your weight. 

I think like most have said, you never know something until you try it.  And this may sound like a broken record, but sometimes we have to take what we can get.  Please hang in there and keep us posted on how you're doing.  :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline SoSadTooBad

  • Member
  • Posts: 248
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #9 on: February 22, 2008, 08:15:28 PM »
First - GREAT NEWS!! 

Second - I wouldn't sweat the AZT too much - I took AZT for 18 months in Combivir - it made me a little nauseous, but otherwise was fine.  I found eating a little something (like maybe something off the Dollar Menu at McDonalds - LOL) took the nausea away.  Worked great, and I didn't have an issue with Cholesterol or anemia while on it.  I am no longer taking it because I am taking Atripla now.

Third - I have almost two months worth of Combivir -  Shoot me a note, tell me where to send it, and it will go out tomorrow AM - 

Fourth - If your CD4's are still below 200, I have a month's worth of Mepron - I had to take it because I was allergic to Bactrim.  Expensive as hell and looks like yellow paint - but it worked like a charm and did not have any side effects.  I can send that too if you like.

Lemme know...  SSTB
« Last Edit: February 22, 2008, 08:19:24 PM by SoSadTooBad »

Offline AlanBama

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  • Posts: 3,644
  • Alabama: the 'other' 3rd World Country!
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #10 on: February 22, 2008, 08:17:17 PM »
You see?  I love these forums.....our members are fantastic people!

"Ask and ye shall receive."

 ;)
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Online Jeff G

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  • Member
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  • How am I doing Beren ?
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #11 on: February 24, 2008, 09:47:08 PM »
 It great to hear you are better.. I have been positive for 25 years now and I am in better shape now than ever thanks to my meds and the gym. You can do it too if an old dog like me can

Offline Matty the Damned

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  • Posts: 12,239
  • Ninja Please
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #12 on: February 24, 2008, 10:55:27 PM »
Oh Mikey, I'm so glad to hear this is working for you. Now we just need to find a way to get you proper access to HIV medications.

MtD

Offline Ric Wilke

  • Member
  • Posts: 573
  • I joined AIDSmed.com 10/2002.
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #13 on: February 24, 2008, 11:39:24 PM »
Bro,

This is the best news I have heard this new year.  You are responding well and I'm crying.  I'm calling you tomorrow so we can talk.

Love you always, R

Offline Ric Wilke

  • Member
  • Posts: 573
  • I joined AIDSmed.com 10/2002.
Re: "FINALLY" Some Good News to Share "But" Honest Feedback "Wanted"
« Reply #14 on: February 25, 2008, 11:46:00 PM »
Sweetest Mike,

I tried to call you several times tonight and I "spoke" with one man who hung up on me.  All other calls were simply answered and then disconnected.

I'm worried Bro, but I feel that you are doing as well as we all are.

All my love, Ric

 


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