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Author Topic: About to start meds and need some advice  (Read 1723 times)

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Offline Ryoma

  • Member
  • Posts: 17
About to start meds and need some advice
« on: January 08, 2010, 07:38:21 PM »
Hi everyone,

First I just want to say thanks for all the amazing advice and information here, it's been a real life saver for me.  I just converted in October 2009, I live overseas and there just isn't the wealth of information available where I live compared to the US.  In terms of treatment they follow all the US recommendations here, so I have access to (almost all of) the same medicines as patients in the US.  My ID doctor speaks English too and is used to a foreigner like me asking billions of questions - standard of course back home but not so much here.

I need some advice on which meds to start with.  I've had diarrhea and fevers/hot flashes pretty constantly since I converted.  I also developed off-and-on loss of sensation is some of my fingers and toes.  And now to top it off, I have some small brown lesions on both arms, back, neck and forehead that I have convinced myself is KS.  My doctor says it doesn't look like it to him but he set me up with a dermatologist next week. (I understand from the ACS website that starting treatment is the best way to control KS - but if it is KS it's one more thing to worry about and treat...)

The doctor has recommended that I start treatment, and I will do so next week.  But I'm stuck as to the meds to start - I have an equal dread of the CNS side effects from Sustiva as I do the potential lipodystrophy side effects of a PI regime.  From a mental perspective, I'm trying to be calm and scientific about what's going on - but realistically I tend to need about a day to calm down from the hysteria that sets in everytime I notice a new symptom - I was a wreck when I found those lesions - though going home to my partner tends to have that calming effect.  From a physical perspective - no problems other than those noted above - I had a genotype test that did not show any resistance to any meds, so I'm ok there.  And all of my blood tests have come back fine.

Based on the symptoms that I've experienced, is there any combination of meds that would be recommended - e.g. begin to reduce the KS lesions (assuming that is what it is) faster than others? 

I don't think I will have any problems adhering to either a Truvada / Sustiva regimen or a Truvada / Reyataz / Norvir one.  I would like to start with Isentress / Truvada due to lack of side of effects from what I can tell but while Isentress is available here I don't think it's been approved for treatment naive patients yet - my doc is checking it out.

Sorry for going on and on, I appreciate any advice and thanks again for all the help and wonderful advice and info.

Ryoma

PS my numbers so far:

Exposed and sero-converted October 2009
November 12 2009  CD4 252 VL 3,000,000
December 3 2009 CD4 297 VL 1,000,000
December 22 2009 CD4 352 (VL not measured, it was a different clinic for a different problem...)
January 7 2010 still waiting results
Exposed and sero-converted October 2009
November 12 2009  CD4 252 VL 3,000,000
December 3 2009 CD4 297 VL 1,000,000
December 22 2009 CD4 352 (VL not measured, it was a different clinic for a different problem...)
January 7 2010 CD4 311 VL50,000
January 15 2010 Start Truvada / Isentress
February 18 2010 CD4 386 VL83
February 25 2010 Switch to Truvada / Reyataz / Norvir
June 23 2010 CD4 387 VL UD!
July 2010 CD4 561 VL UD
Aug 2010 CD4 671 VL UD
Sep 2010 CD4 599 VL <40
Oct 2010 CD4 570 VL UD
Switch to Prezista / Norvir / Isentress
Nov 2010 CD4 738 VL <40
Dec 2010 CD4 773 VL UD
Jan 2010 CD4 570 VL UD

Offline StacheBC

  • Member
  • Posts: 266
  • Hello
Re: About to start meds and need some advice
« Reply #1 on: January 08, 2010, 11:50:57 PM »
I don't think your number look terrible and they have improved. Although if they stay around 350 once you get your next reading... If it was me, I'd start meds.

Meds aren't a one size fits all and if you are lucky not to have any resistance to current treatment, there certainly are a few options you can try.
I'm on Atripla (Truvada / Sustiva) and I must admit it's been a breeze for me... after some dizziness after taking the pill (if I didn't go right away to bed) for the first 4 weeks or so. Now, I can take it and not got to bed right away and I feel fine (empty stomach or not). Plus it's a once a day regime that works for me since I already had a routine of taking another pill before going to bed... so it became second nature right away.

The Truvada / Reyataz / Norvir is also quite popular (also a once a day regime)...
Isentress / Truvada is not a once a day regime, yet, as far as I know... not sure if that is important to you or not.

Personally I like the idea of once a day regime... adherence it probably the main factors once you do start meds... having the luxury of being able to take a once a day regime, reduces the chance to miss doses (IMO).

Just remember if you have all options open... you can give one combo a good try and under doctor supervision change combos.

All the best to you and please keep us updated.

Offline Nashvegas

  • Member
  • Posts: 196
Re: About to start meds and need some advice
« Reply #2 on: January 09, 2010, 10:21:13 AM »
Hey Ryoma -- Like you, I was very concerned about the potential central nervous system side effects of Sustiva/Atripla, as well as the lipodystrophy effects of the PI's, and I opted to go with Viramune + Truvada.  I've had literally no negative side effects from this combo, and have been very happy with it.  Some people develop a rash (which apparently can be quite serious) when they start with Viramune, but if you can get past the initial start-up period without problems, it's a great combo.  However, Isentress HAS been approved for first-line use in the US (in fact, it's now a recommended first-line combo), so that would be worth a look as well.  If I were starting meds for the first time now, I'd be very tempted to go with an Isentress-based combo because of all the good reports about it. 

Keep us posted on what you decide to do and how things go. 

8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline newt

  • Member
  • Posts: 3,878
  • the one and original newt
Re: About to start meds and need some advice
« Reply #3 on: January 09, 2010, 08:44:30 PM »
Well hello

Yes, fears of side effects are reasonable,

About 20% of people discontinue efavirenz, the drug in Atripla that causes CNS side effects. Which means 80% don't

As for lipodystrophy, the modern drugs are much kinder, esp newer PIs.

All ARV combinations may contribute to lipodystrophy, and this includes both PI and non-PI based combos. However, it is fair to say it is not like the mid 1990s. Probably at a slower rate these days, if it happens at all. There is undoubtedly a genetic component to this.

Me, I went for a PI combo, because a clear head I must have (and for various other nerdy reasons too).

There is only one way to find out, and that's take the damn things

- matt
"The object is to be a well patient, not a good patient"

Offline Ryoma

  • Member
  • Posts: 17
Re: About to start meds and need some advice
« Reply #4 on: January 10, 2010, 07:09:38 PM »
Thanks all for the advice, I start my meds on Thursday...still on the fence on which combo to start with but leaning towards a combo I can take in the AM from the start, since I already take my vitamins with my breakfast as it is...  I'll let you know how it goes, thanks again.

Ryoma
Exposed and sero-converted October 2009
November 12 2009  CD4 252 VL 3,000,000
December 3 2009 CD4 297 VL 1,000,000
December 22 2009 CD4 352 (VL not measured, it was a different clinic for a different problem...)
January 7 2010 CD4 311 VL50,000
January 15 2010 Start Truvada / Isentress
February 18 2010 CD4 386 VL83
February 25 2010 Switch to Truvada / Reyataz / Norvir
June 23 2010 CD4 387 VL UD!
July 2010 CD4 561 VL UD
Aug 2010 CD4 671 VL UD
Sep 2010 CD4 599 VL <40
Oct 2010 CD4 570 VL UD
Switch to Prezista / Norvir / Isentress
Nov 2010 CD4 738 VL <40
Dec 2010 CD4 773 VL UD
Jan 2010 CD4 570 VL UD

Offline andrew67

  • member
  • Posts: 2
Re: About to start meds and need some advice
« Reply #5 on: July 16, 2010, 07:44:39 AM »
hi i have just joined the forum, i was looking for info on lipodystrophy when i saw your post, i feel for you right now and hope you are now coping mentally and physically, it is good to here you have a supportive partner(as i do!).  how have you found the new treatments, are they manageable?.  anyway hope all is well keep on being strong

andrew x

 


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