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Author Topic: Feeling pretty bad, my case is a weird one  (Read 1863 times)

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Offline meetmeup1

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  • Posts: 6
Feeling pretty bad, my case is a weird one
« on: May 31, 2012, 07:24:01 PM »
New to this forum, hello to all.

First, I've poz for 29 years, I was asymptomatic till last summer, so I had a good run.  I went to Africa for work, contracted Malaria, almost died from it, my Tcells drop to 3, my viral load through the roof, so heres the dilemma:

I started my first meds therapy dec 3, 2011
Kivexa and Reyataz------3 weeks had to stop side effects were just awful, dr switch me to second cocktail
Truvada, Reyataz, Norvir-----8 days later in hospital, allergic to Reyataz.
Third cocktail
back to Kivexa and Viramune---worst of them all, dr switch me to
fourth cocktail
Atripla------not too bad but affected my memory and rash from hell, so dr switch me to 5th cocktail
Truvada,Norvir, Prezista-----its been 8 days, I passed out 4 times since then, vomit, rash, dizziness, bedridden since then, I am feeling soooo bad that I will not take any meds and discuss what is my options.

It seems that Malaria life long side effects is affecting my HIV, I saw 2 specialist that are puzzled by my reaction, anybody has had malaria and HIV, I guess am lucky to have lived this long...........I must say that if this persist, I would prefer to check out rather than live with this pain any longer.  Any insight???

Offline thunter34

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  • Posts: 7,302
  • His name is Carl.
Re: Feeling pretty bad, my case is a weird one
« Reply #1 on: May 31, 2012, 07:58:03 PM »
I may be completely incorrect, and if I am I am sure someone here will correct me, but it doesn't sound like you've given any of these combos enough time.  As far as I know, they all have the potential to be pretty rough for awhile during the time your body gets adjusted to them.

I would guess this is especially true if you are starting them with only 3 t-cells on the heels of a bout with malaria.  I mean...an allergic reaction is one thing, but to expect you're going to be able to just pick up a combo and go with no nausea or anything is a bit much to expect, don't you think?  A little foggy headed on the Atripla?  Well...yeah.

I'm also wondering, with an immune system that far beaten down, if that "Immune Reconstitution Syndrome" wouldn't also be a possibility here.

AM brainiacs...what do you say?
« Last Edit: May 31, 2012, 08:00:17 PM by thunter34 »
AIDS isn't for sissies.

Offline newt

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  • the one and original newt
Re: Feeling pretty bad, my case is a weird one
« Reply #2 on: May 31, 2012, 08:03:53 PM »
Well hello, and sorry about the rubbish drugs

Rather than give up the ghost now (which is typically painful and longwided if nature takes its course) you might do one of the following:

1. Try something off piste like maraviroc raltegravir, 3TC (or another drug from the same class if it is 3TC or its sister drug contributing to the problems)...if you can take maraviroc and it be effective (there is a test for this called a tropism test).

2. Go old school and try something like Kaletra.

Antimalarial drugs have serious interactions with anti-HIV drugs, so I hope you are not on any antimalarials right now.

But, I note, with great seriousness, starting treatment with a CD4 count of 3 is gonna be a rough ride, and as Tim has said above toughing it out on a combo that's least bad out maybe the best option to save your life, for this outcome is stil entirely possible.

Of the combos listed above Truvada, Norvir, Prezista is probaly the most kind, and it is a fact that at low CD4 counts starting treatment produces (non HIV drug related) symptoms as your immune system reconsitutes itself. It can be a rough ride, soz.

Hope this helps

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

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Feeling pretty bad, my case is a weird one
« Reply #3 on: June 01, 2012, 07:21:12 PM »
Hi,

Welcome to the forum with hopes that you can be a long term member.

It is obviously a tough situation and you will find here good patient experience and sympathy.

This is your first post and one thing missing in the description is wether you have access to expert virologist as well as some important tools such as resistance test , HBLA test (for abacavir), CCR5 tropism test (for maraviroc). In some countries those test are not available.

Resistance test: takes 1 month. the US guidelines suggest that it is done at diagnosis (i.e. ASAP, even if treatment is delayed), and redone before treatment (if time allows). I hope you have had one resistance test performed at least once recently.

HBLA test: takes 3 weeks.
the HLA B*5701 test, is the one that tells you if Abacavir should be avoided.
If negative : you can have it quite safely.
If positive : it is more risky to take Kivexa (bad news...), but much more likely to be a long term non progressor (as you appear to have been)

CCR5 tropism test: there is one method (name forgotten) that can be done if VL > 1000. I think it takes a while to get it done but have no number in mind. The other test (which can be performed even is VL is low) requires 5-6 weeks (I am currently waiting for such results). if you have been POZ 29 years, chances that you are dual tropic (thus not eligible for Maraviroc) may be higher than for people who have been recently diagnosed.

With such a low CD4; starting with a PI based regimen seems to me (from reading, not experience) the most likely successfull route.

I can comment on Kivexa/Viramune (which I take and have studied in depth): this one move stands out as the more likely prone for problems (with High VL, and if HLA B*5701 status unknown). Not surprised by the terrible experience you've had with this

You have been suffering severe adverse side effect, but, have also been under HAART for 6 months now.
How is your VL ? and current CD4 ?

Thinking of checking out ??? I can not find ways to comment diplomatically... IHMO and with all due respect and sympathy: This IS NOT AN OPTION !

What you describe sounds like a worst case scenario which will require a lot of courage (and may be luck) to get out of this.

Recent medicine has achieved wonders, so please keep faith. Good old Kaletra and many newer drugs are still options on the table

And be assured,

WE ARE WITH YOU !

CHEER UP!

Eric

Offline meetmeup1

  • Member
  • Posts: 6
Re: Feeling pretty bad, my case is a weird one
« Reply #4 on: June 01, 2012, 08:23:29 PM »
Hello to all, and thanks for the reply.

There are a few things I did not list. 

I have seen Virologist, specialist in Malaria and HIV combine,  the side effects were not very light, I ended up in hospital with arythmia, one lung collapse, and almost kidney failure, what happened to me was very sudden because of Malaria.

My specialist think that the Malaria (which is no longer in my system) combine with HIV has created a sort of mutation of the virus, or they interacted together, which makes sense to me why am rejecting most combos, and I was taken off by my Dr because it was poisoning my system too dangerously not because I don't want to take meds, just needed to clarify this.  The weird thing is that all the cocktail I've been on had a counter effects, ie, one meds make my tcell go up while my viral load went down and vise versa.

Thanks to you all for the advice above, I will see what my Dr is going to do next week, in the meantime, I will enjoy a few days not being bedridden.

I forgot to mention, some of the drugs you guys mention is under different names here in Canada, I live in Toronto.

Cheers,
J



Today is day 2 of being of meds, I must say that I feel much better, still have a few issues but

Offline meetmeup1

  • Member
  • Posts: 6
Re: Feeling pretty bad, my case is a weird one
« Reply #5 on: June 17, 2012, 05:34:31 PM »
Hello again to all. June 17 2012.

Thanks for the support.  I am off all meds for the last 3 weeks and I feel great and got my groove back.  This won't last long since I have to start another therapy in the next 2 weeks. Don't know what pills yet.

Will keep you all posted of my progress, we'll see where this one goes.

Cheers,
Happy Fathers day for those who are.


Offline eric48

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  • Posts: 1,114
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Feeling pretty bad, my case is a weird one
« Reply #6 on: June 17, 2012, 05:45:51 PM »
Happy Fathers day for those who are.

Thanks! it is 5 minutes to midnight and noone in my family even mentionned it!

You've just saved my day

Eric

Offline meetmeup1

  • Member
  • Posts: 6
Re: Feeling pretty bad, my case is a weird one
« Reply #7 on: June 21, 2012, 12:06:47 AM »
Well, that was fast,

Saw specialist with the help of an expert Pharmacist specializing in HIV and Infectious diseases, I also did a blood test so the result is that I will be trying this  combo which is :

3TC + Viread + Edurant

If anyone is on the above therapy, let me know how it went, althought my system is completely fckedup, I hope that I get a few more tcells out of this one, lol ;)
 

Offline meetmeup1

  • Member
  • Posts: 6
Re: Feeling pretty bad, my case is a weird one
« Reply #8 on: July 21, 2012, 08:43:09 PM »
Hello to all,

First, I feel amazing, started the new meds 3 weeks ago, and am undetectable and have over 300Tcell, now I have my life back and am very grateful that meds finally work.

I have no side effects whatsoever.  So for anyone that have malaria and HIV, I suggest to start with this combo, 3tc Viread Edurant.  I know everyone is different but its worth a try.

Now off to vacation then back to work in September.

Cheers all,
:)

 


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