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Author Topic: Newly diagnsed and worried about treatment  (Read 3486 times)

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Offline xcodecx

  • Member
  • Posts: 4
Newly diagnsed and worried about treatment
« on: July 26, 2013, 04:37:45 am »
First of all I would like to salute everyone here, I have been viewing lots of similar forums, also Greek as well as foreign ones and I thought this is actually worthy so in some way I feel like glad to be part of this community.

I was diagnosed about a month ago, although there is only a single test about my CD4 it is kind of low (630) -if I m not mistaken that 's the minimum number a healthy/HIV negative person has- despite the fact that I don't know the amount before infection. My next measurement is in September so I 'll be able to have a more clear opinion then of how HIV infects my T-cells. (Viral load is not available yet, as soon as I have the results I 'll post below to my "signature")

In any way -as many of the patients, I guess- I consider starting treatment soon, having in mind that I was infected recently, approximately in March of 2013. I experienced severe symptoms of early infection (BII) such as fever about 39ºC (102º F) during a month, generalized lymphadenopathy, headaches, etc. Having in mind that the majority of HIV patients can keep without medicine sometimes even for 10 years I would still be positive in starting early as most guidelines say, on the other hand I m kind of worried about the long term side effects some drugs may have as definitive data are lacking regarding next generation ART about starting treatmeant with a number of CD4 above 500.

I know that there are lots of topics as well as articles talking about this, I would appreciate your personal opinions though, especially if there is someone else who decided to start early his/her treatment. Just to mention that I am 25yo.

Thank you all in advance for your responses, God bless and take care  :)

S.
June 2013: Tested Positive
(Estimated infection 6 ± 3months  ≈ March 2013)

Lab Tests:
23 June 2013: CD4 630 - V.L.: Not Taken

Offline ad2san

  • Member
  • Posts: 238
Re: Newly diagnsed and worried about treatment
« Reply #1 on: July 26, 2013, 04:54:20 am »
Hello and welcome to the forum. Well, the situation is clear : it is now recommended to start treatment ASAP (600 something CD4 is not outrageously high) ... with the hope to reduce the amount of virus "hidden" in so called "reservoirs" ....
So take care of yourself, go and start a therapy and get well


Cheers
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
Aug 2014 CD4 639 UD 25%
Switched January 2015 to Triumeq
May 2015 CD4 807 UD 31%
Switched Nov 2016 to Genvoya due to gastric problems
November 2016 CD4 847 UD 32%

Offline xcodecx

  • Member
  • Posts: 4
Re: Newly diagnsed and worried about treatment
« Reply #2 on: July 26, 2013, 05:18:06 am »
Thank you @ad2scan for your answer, I was thinking the same, despite guidelines tend to change continuously.
My only consider is, if liver and kidney problems occur as it is very common in such treatments. I used to drink a lot as for my liver status and regarding my right kidney a recent scan showed a small inflammation that is not something to worry about as I was told, although it is usually met at later ages, doctors said. Just wondering if the only reason doctors/WHO recommend early treatment is to reduce viral load in order not to transmit the virus or there is proof that it is more likely to have better progress in such case.
I know some people that have been diagnosed HIV positive and have not started ART even with 500 CD4 for 5 years and so. I m a little confused..
June 2013: Tested Positive
(Estimated infection 6 ± 3months  ≈ March 2013)

Lab Tests:
23 June 2013: CD4 630 - V.L.: Not Taken

Offline ad2san

  • Member
  • Posts: 238
Re: Newly diagnsed and worried about treatment
« Reply #3 on: July 26, 2013, 05:27:57 am »
Hello, well not everyone get liver or kidney problem. Your doc does know what drug are heavier on one or the other ... or on none  ;)

You will be anyway carefully monitored and if something changes without the acceptable boundaries your doc will change the treatment or you will ask him to do so.

a recent study of the French ANRS demonstrates it http://www.natap.org/2013/IAS/IAS_65.htm it is technical  but ....

Well, it is always possible to delay but it seems to be proven that starting early has better outcome ... in general.

Cheers
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
Aug 2014 CD4 639 UD 25%
Switched January 2015 to Triumeq
May 2015 CD4 807 UD 31%
Switched Nov 2016 to Genvoya due to gastric problems
November 2016 CD4 847 UD 32%

Offline ad2san

  • Member
  • Posts: 238
Re: Newly diagnsed and worried about treatment
« Reply #4 on: July 26, 2013, 05:29:27 am »
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
Aug 2014 CD4 639 UD 25%
Switched January 2015 to Triumeq
May 2015 CD4 807 UD 31%
Switched Nov 2016 to Genvoya due to gastric problems
November 2016 CD4 847 UD 32%

Offline xcodecx

  • Member
  • Posts: 4
Re: Newly diagnsed and worried about treatment
« Reply #5 on: July 26, 2013, 05:53:47 am »
Thanks a lot @ad2scan I have read a lot of researches and those you posted links for seem really interesting although I am usually looking for European studies -no offense, I m just Greek   ;)
I talked with my doctor about starting ART when we have the next results but I want to be as much informed as possible till then or even earlier.
In that case I will participate in a trial study that sends data to US Universities. Taking in your own hands the decision to start a serious treatmentlike ART is not easy, at least even a single patient plus could help monitoring the virus which so many scientists are working on and help conclude to healing or reduce the transmition (as well as sign-ups in such HIV forums lol)
June 2013: Tested Positive
(Estimated infection 6 ± 3months  ≈ March 2013)

Lab Tests:
23 June 2013: CD4 630 - V.L.: Not Taken

Offline Ann

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  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Newly diagnsed and worried about treatment
« Reply #6 on: July 26, 2013, 07:56:40 am »
Hi xc, welcome to the forums.

You may find the British-based website http://i-base.info/ useful. They have translated many of their publications into Greek and other European languages and they are available here: http://i-base.info/category/translations/

Unfortunately, the two Greek translations they offer are both old, but the Introduction to Combination Therapy one should at least give you some of the information you need to know about starting meds. You seem to have a good understanding of English, so check out their up-to-date English publications as well.

The British treatment guidelines are pretty much identical to the European ones, by the way.

Another good British (and European) based site is aidsmap.com. They have a world-wide database of hiv/aids organisations you may find useful. To find what's available in Greece, go to www.aidsmap.com/e-atlas

I have a few more links you might find helpful, but I'll have to start another post to give them to you.

Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Newly diagnsed and worried about treatment
« Reply #7 on: July 26, 2013, 08:09:29 am »
NAT (National Aids Trust) is another UK organisation, but the following page has further links to European concerns: http://www.nat.org.uk/Our-thinking/HIV-and-Europe.aspx

http://www.europeanaidsclinicalsociety.org/ - this site has the European treatment guidelines. If you click on the EACS Guidelines link near the top of the right-hand side of the page, it will take you to a new page. On that new page, there is a list of translations in a column down the right-hand side of the page. One of them is in Greek, and is from 2012, so it's up-to-date.

Your CD4 isn't low - it's actually quite respectable. This means that you do have time to adjust to the idea of being poz, and adjust to the idea of taking daily meds. You are in no immediate danger. I went for fifteen years without treatment and I'm doing well (started meds last summer).

Hope you find the links I gave you useful. Please don't hesitate to come back here with more questions, or even just to talk about how you're feeling, both physically and emotionally. We're all in this together! :)

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline xcodecx

  • Member
  • Posts: 4
Re: Newly diagnsed and worried about treatment
« Reply #8 on: July 26, 2013, 09:02:34 am »
Dear Ann,

Thanks a lot for those usefull links, I m going to check them in order to gather as much information as possible although I consider wiser that I should not exceed too much reading and searching than discuss any questions that come up with my doctor.
On the other hand she -my doctor- has already explained a lot so I think that the final decision of starting ART has to do in some point with the emotional fact except for the advantages/desadvantages that someone has to weight. That 's what confuses me a bit when it comes to health issues.

I would also like to know your opinion and what you should "advise" someone recently diagnosed judging from yours and your partner 's experience -not spying, I have read your blog  ;) - generally, about medication speaking (in order not to get off-topic).

In any way, reading this whole forum has helped a lot, especially when I realize that there are lots of people having it in common, as well as reading about their progress gives the motivation to keep up life normally.
I totally appreciate your answers as well as your wonderful will to help/inform others.

Cheers,
S.
June 2013: Tested Positive
(Estimated infection 6 ± 3months  ≈ March 2013)

Lab Tests:
23 June 2013: CD4 630 - V.L.: Not Taken

 


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