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Author Topic: ***Have anybody had Problems with Neurophaty when taking Prezista??***  (Read 3477 times)

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Offline OnePapi

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I have a problem with neuropathy ,which i have been recovered after not even being able to walk........

this was about 4-5 years ago...........my new regimen intelence-prezista-isentress+norvir.....i have had to stop takin each at a point to test which one makes me feel bad on my feets......and i proved is the prezista,when i have started taking it right...........is it normal...? anybody with similar experience?

Might Allah Bless You All

Offline Miss Philicia

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Re: ***Have anybody had Problems with Neurophaty when taking Prezista??***
« Reply #1 on: January 03, 2009, 12:02:04 PM »
Please don't take this the wrong way, but seeing the combo that you're currently on would indicate to me that you have had resistance issues in the past -- is that the case?  If so, why would you be switching out all of these medications without consulting a doctor, which I must assume is the case?  Furthermore, reading your past 9 posts on this web forum also tells me that this isn't the first time you've attempted this self-diagnosis, not to mention that you complained of neuropathy in early May on a totally different combo, so why do you now think it's from Prezista?

It's often not a great idea to "play doctor" (though, of course, it's great to be well informed and an active participant with your doctor).  In my experience, and hearing that of others on this board and in local support groups over 15 years, things like neuropathy can be a delayed effect of HIV medication, not an instant one.  And if you've changed regimens several times within 12 months I don't see how you can effectively make the assessments you're making, and in the end you're just going to layer more and more resistance issues on top of the ones you already must have.

Are you happy or unhappy with you doctor's advice, and what exactly has been his advice on this issue?

Going from your old posts it appears that since March 2008 you've cycled through 3 different med combos, is that correct?

1) before March 2008, Kaletra, Truvada
2) March - May 2008, Retrovir, Isentress, Reyataz
3) June - present, Intelence, Prezista, Isentress, Norvir

So basically if you first complained about neuropathy issues in May, how do you know in fact if this was or wasn't caused by something you were actually taking in, say, December 2007?  Or even before that?  How long have you been HIV positive and on HIV medications?  What did you take previous to the Kaletra/Truvada regimen?

Bottom line is that I would recommend not doing this stop/starting of meds on your own until you have this sorted out in a favorable manner, or you will just be asking for even more serious issues down the road.  Are you even taking something like Neurontin for your neuropathy?  If not, why not?
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: ***Have anybody had Problems with Neurophaty when taking Prezista??***
« Reply #2 on: January 03, 2009, 05:00:25 PM »
Not much to add since Philly covered most of what I would have said (although he said it much better than I could). 

The only thing I would mention is that neuropathy can also be caused the HIV infection itself and isn't always related to the HIV medicines you are taking.

Also Dapsone has been known to increase the risks of getting neuropathy when taken in the past with other HIV related meds..  In fact, although rare there is something called dapsone neuropathy caused by the drug itself.

Please consult your doctor before deciding to remove one of your meds.

It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline OnePapi

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Re: ***Have anybody had Problems with Neurophaty when taking Prezista??***
« Reply #3 on: January 04, 2009, 01:07:37 AM »
It is very upsetting and very out of place for anyone coming on to a forum here to ask for advice,to have to deal with someone coming your way to give u a lecture and a whole sicological assesment based on a few lil topics.
I barely even see any indication of answering my question in term for one thing.
You have to understand not everyone out there are such PROS,like some of yall might think,and many might do the wrong thing thinking it migt be good for them or on and on...Now thats the reason many young people feel reluctant to speak with anybody thats gonna come your way and do 'Mommy' job.One reason you might use a 'forum'.
If u cant give advice the right way,then DONT DO IT.! Whats the point on pushing someone out with the type of attitude you bringing my way.....when you obviously make even an effort to go thru my history,just to turn it against me??
In that history you should know ,that all have been attemps of mines to get my health right,ISNT THAT RIGHT?
So doing or being ignorant of many of the issues,is nothing different from hyow us young people are trying to manage this.,

In the part on 'autoprescribing',im gonna tell you,I been reluctant to take medications for the longest,dear 'adviser',it took me a lot of acceptance of a lot of things before i made it there.
I have suffered some consecuences of that,which i have grown mature of and have took action about it,AND U SEEN ME DOING IT THRU MY HISTORY RIGHT?....Im taking action,about it ,after being thru a lot....story be so long for a book....and if you see me now youll never even think i am a positive man....I am a healthry young man....and i have stop meds,start again,and so on,and even with that,here i am.....almost undetectable,even with the erratical way of taking the meds....i guess i could even be better by doing it all the way right......but since i am tracking everything out ,i know what feels good to my body and if a regimen dont feels right,then...
.With the story im trying to say,i have learn my body well enough to know it better than even few doctors i have runned with....YES!
And im not saying that the right thing to do but by being reluctant many years and then started erratically,at this point what would be so terrible about stop prezista take the rest for a week,(taking the rest) and do the same with Intelence after ALL IVE BEEN THRU, and ,since honestly at this point in time,seems like my doctor barely listen to my complaints out of bussiness i guess,and want me to continue a torture,so...
As matter of fact,i almost had to create my own actual combo...literally....

I f you would had read my post with a clear mind of judgement ,you would have seen what i explaned.......Out of everything i went thru,the only complication that i kept suffereng is the neurophaty ..................is been quite 5 years of that....NEVER HAD PAIN,as long as i would take my Neurontin
 I can effectively make the assessments Im making,because i didnt had NO PAIN ,on my feets till changing my regimen adding up the prezista,How bout that?
You CONCLUDED,i have resistance issues.....,..and the matter of fact I DONT with most drugs...Truvada was change to prevent liver damage,and i could even explain the rest,BUT I WONT...

For some reason,i havent developed resistance by m,ost drugs i taken in the past either,How so? Dunno!
Every Body'S  responds different,and lot of us take a lot of time to learn our bodies.
Many times many people have gave me wonderful advice,the right way,and young people need to hear it ,the right way,and to those my appreciations

Offline AndyArrow

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Re: ***Have anybody had Problems with Neurophaty when taking Prezista??***
« Reply #4 on: January 04, 2009, 02:36:18 AM »
It seems like you didn't like the tone of Philly's & my advice -- I'm sorry if you didn't like the tone ... but would say to anyone what I said to you .   

Which was please consult your doctor before deciding to remove any of your meds.  I know for a fact that no skilled health professional told you to stop taking each med for a while and judge how you feel and eliminate the one you don't like. 

Also, Prezista is generally only prescribed by people who have tried other antiretrovirals and they didn't work. 
In addition Philly & I both take Prezista & both have neuropathy  which is completely unrelated to the Prezista.  Mine was from drugs I have taken years ago that generally aren't prescribed anymore for this and other reasons.  I really think you need to talk to you doctor again ... or find one you like and/or trust more.

It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne


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