OK, Tested Positive...now what

[RedBear]

Wow, Seems like a lot of people tested poz in Oct./Nov. of this past year.  Wound up in the hospital for 21 days from PCP.  Wouldn't have been so bad but I was allergic to the meds and it caused a severe reaction which brought me to the brink of death.  Thought I had been lucky enough to miss the 80's and 90's rounds of diagnosis when I saw many friends die, including my hemophiliac brother.  On top of that I was a social worker for many years at the beginning of the crisis and knew how to avoid this.  Admittedly I took more risks than I should have with clients, i.e. helping with their personal hygiene etc. when their families were afraid to assist them with their personal care.  As a 46 yr old man, you can imagine my surprise
when things took a turn.   I'm not angry or any of those things.  The doctors seem to be shocked that I took it so well.  Of course they are all young and weren't around at the time of the initial crisis so they don't understand that as gay men from 20 years ago basically accepted the fact that they were either already infected or may soon become so.  I guess with myself I had already prepared myself mentally as to this and so it really didn't take as big a toll as they expected.  They did say with my numbers being as they are, I have probably been poz for awhile, just totally asymptomatic.  Had no illnesses and so on, so no real concern. 
  That said, my biggest concerns now are related to taking the meds.  I have been fortunate that I recovered from the PCP and got into the local clinic with top notch ID docs who got me on a regime quickly.  However, the meds and the side effects are rough and am hoping for some feedback from others.  I suddenly gained about 17 lbs.  I've always tried to keep at about 165 lbs, but this sudden weight gain has thrown me for a loop.  Is this something permanent?  Same goes for the tiredness...
some swelling in my legs.  I'm hoping to hear that these symptoms will subside with time, but am a realist and want to know others experiences with it.  Also, does anyone know the long term effect of the PCP.  Everything I read seems to be outdated and gives one little hope of survival beyond a year..know that this must be incorrect, at least hoping.  Still have some pain on deep breaths and little tolerance for second hand smoke.  It takes days to recover from exposure to a roomful of smokers. 
    Well enough rambling, again, any feedback will be appreciated.  Am sure that more questions will pop up as time goes on.    Thanks for the support.  Already have learned a great deal from reading the forums, am very happy to have found it.   

[pozniceguy]

Hey Red  welcome  even though that is a somewhat twisted sentiment as far as being POZ is concerned...Many of us have been exactly where you are...for me it was Jan 1994..deathly ill, hospital for 3 weeks with PCP, MAC and a few other miscellaneous bugs...I am still here...at the time had a count of 2 ( yup 2)  the VL thing was just starting to be discovered..probably infected in early 80s......well Here I am been through wasting, Lypodystrophy ( still have that) various fevers, and several med changes....been undetectable now for many years...cd4s hang in around 400.... live pretty much typical life of  guy over 60....  you have an excellent chance to do even better since you start with better education about HIV and better treatments..  feel free to PM if you want  any specific experiences..

Nick 

[Inchlingblue]

RedBear:

I was wondering, since you asked for opinions on the meds and side effects: what meds are you on?

[aztecan]

Hey Red,

Welcome aboard, though sorry for the reason you have joined us.

You said,

That said, my biggest concerns now are related to taking the meds.  I have been fortunate that I recovered from the PCP and got into the local clinic with top notch ID docs who got me on a regime quickly.  However, the meds and the side effects are rough and am hoping for some feedback from others.  I suddenly gained about 17 lbs.  I've always tried to keep at about 165 lbs, but this sudden weight gain has thrown me for a loop.  Is this something permanent?  Same goes for the tiredness...
some swelling in my legs.  I'm hoping to hear that these symptoms will subside with time, but am a realist and want to know others experiences with it.  Also, does anyone know the long term effect of the PCP.  Everything I read seems to be outdated and gives one little hope of survival beyond a year..know that this must be incorrect, at least hoping.  Still have some pain on deep breaths and little tolerance for second hand smoke.  It takes days to recover from exposure to a roomful of smokers. 

The fact you have recovered from PCP and gained weight is a positive sign, pardon the expression.

I take it, because of your run in with PCP, your CD4s were in the tank when you were diagnosed. How are they doing now?

The fatigue you mentioned could be a result of your still convalescing from PCP. It takes a while to get over that. To answer your question, many people here had PCP, have come back from it and have lived many happy, healthy years since.

But it does take time. Don't rush it.  I mentioned your CD4s above. Many people find themselves fatigued when then have low CD4s as well. Not everyone, but some do.

I really can't comment on your side effects from starting meds because I don't know what side effects you're experiencing or what meds you are taking.

But, in general, most initial side effects subside or at least lessen in two to 12 weeks. I myself have a standing rule of giving meds at least two months to see some improvement in side effects.

Anyway, glad you are here and I hope to hear more from you.

HUGS,

Mark

[RedBear]

Thanks for the responses.  Encouraging news always helpful.  To answer some questions: cd4 50,  vl 450,000, meds include Truvada 1 daily and Kaletra 2 2x's daily  and of course bactim&azithromycin for the pneumonia.  I've heard about the lipo thing, but haven't heard any timelines for that ie how long before it shows up?  Is it associated with a specific med or all the med's?  I don't have new numbers yet as I just started the mess in december of '08.  I have follow up appt.  on the 19th to get an update.   And so it goes .... 

[Andy Velez]

Hello, Red.

You obviously know a lot from years of prior experience that will serve you well. You will also be getting the benefit of how more effective treatments have evolved and continue to improve.

Something that I always suggest is that in anticipating a doctor's appointment, write down things that you want to ask so you don't have to depend on remembering them all. In the too-short time with a doctor it's easy to let things slip by.

It sounds like you're making a good recovery from that bad bout you went through. Hopefully the meds are going to work for you without side effects that a too intolerable. Here again varying the meds may prove better for you. You're always welcome here to talk about what's on your mind, to ask questions and to just hang out. As you have already begun to find out, members are generous with sharing their experience and support.

Good luck with your combo. I hope those symptoms begin to ease up soon.

Cheers. 

[aztecan]

Hey Redbear,

Regarding your meds. Truvada is pretty easy to take, It could cause some diarrhea or nausea at first, but if you take it with something to eat, that may help reduce or even alleviate that.

Kaletra is a good PI (protease inhibitor) that comes with its own boost of Norvir. Diarrhea is the most common side effect - sometimes a lot of diarrhea.

Imodium is your friend. It can help reduce the squirts and make adjusting to the meds a bit easier.

Andy's suggestion of making a list of what you want to talk to the doctor about is a good one. I still do that because I always manage to forget something,

HUGS,

Mark

[RedBear]

Hi all.  Recently got new numbers and they are encouraging.  Cd4 four jumped from 50 to 354 and VL from 450,000 to a mere 2,000.  Dr's were pleased as am I .  Most side effects seemed to have tapered off with the exception of Gastric Reflux.  My question is, is it safe take OTC Zantac with Truvada and Kaletra?  This Gastric Reflux is a new thing so I didn't need to ask the Doc on my last visit.  I don't see again for a month.  Any guidance greatly appreciated.  David

[positivmat]

Hey,
I had ARS all throught DEC 08.  I didn't have PCP, but i was diagnosed with pneumonia on 1/14 and then with HIV on 1/30/09.  My lungs seem to have taken a while to recover from the pneumonia.  I started Atripla on 2/25/09 (v/l 800k and cd4 325) and that has been with minimal side effects which seem to dramatically decrease over time.  I had some dizziness for a couple of days and still have vivid dreams.  I don't know if the atripla is effecting my tendency toward depression.  It sounds like you are really handling the diagnosis part very well.  I am 42 and we are very lucky to have been infected in 2008 instead of 1984.  I still struggle with the diagnosis but i am trying to remain positive minded and look at this as a wake up call for the rest of my life.  Good luck to you and contact me if you would like to talk
Matt

[Inchlingblue]

Hi all.  Recently got new numbers and they are encouraging.  Cd4 four jumped from 50 to 354 and VL from 450,000 to a mere 2,000.  Dr's were pleased as am I .  Most side effects seemed to have tapered off with the exception of Gastric Reflux.  My question is, is it safe take OTC Zantac with Truvada and Kaletra?  This Gastric Reflux is a new thing so I didn't need to ask the Doc on my last visit.  I don't see again for a month.  Any guidance greatly appreciated.  David

sounds like you're doing really well.....congratulations.....as far as OTC Zantac with your meds, what I would do if I were you is go on the other part of this site, aidsmeds.com.....there you can look up truvada and kaletra and you'll find a lot of info on each, including possible interactions with other drugs.........

[anniebc]

Hi Redbear

It only mentions one Acid reflux/heartburn medications.... Propulsid (cisapride), in the Drug section here, not sure if that is a prescription med or not, maybe it would be wise to just phone your Doc to make sure.

I know that OTC meds for heartburn and acid indigestion only contain Calcium, Magnesium, Sucrose and Saccharin Sodium and as far as I know are all harmless ingredients and don't interact with our HIV meds...but please check it out first.

Hugs
Jan

[mecch]

Well I posted something and thought better to send it to you as PM.
Best wishes, glad to see your new labs are reassuring!

[decayingsinner]

Those are great lab results. Very encouraging.  My cd4 level has only been increasing minimally. Good luck to you.

[Peter Staley]

Redbear -- you should also enter ALL your meds in our site's drug interactions checker, Check My Meds.  It will tell you if there are any possible interactions:

http://www.aidsmeds.com/cmm/