Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol

HIV Health and Treatment Issues >> Treatment & Side Effects

Pages: 1
bscottmatt
New User

Reged: 03/09/13
Posts: 13
Reyetaz, Norvir and Truvada
      #273367 - 08/09/13 10:39 PM

Hi all. I just wanted to say that I was on this combo for about five years before severe mental torture forced me to stop the meds. I was fine for the first couple years then a slow progression of a mental fog (I can't really even call it a sadness) forced me to be admitted once to a psychiatric ward where I was bounced between almost every antidepressant class on the market. I kept telling my doctor that it was the HIV meds that were causing my mental torture but they wouldn't believe me.

Now I am about a week and a half off the meds and I'm finally feeling like myself again. It took almost a year of pleading and getting a new HIV doctor before someone finally listened. So if you've been on a regimen for a few years and you feel yourself sliding into a dark place and antidepressants aren't working, you might want to consider talking to your doctor about coming off that regimen. I don't even care what the risk of coming off meds has caused. There was no way I could continue living with the extreme dread I felt every minute of every waking hour like I did. I see my new doctor again in two weeks to decide what the next step is.

Good luck to you all.

Post Extras: Remind Me!   Notify Moderator  
BigRiji
Member

Reged: 07/25/13
Posts: 27
Re: Reyetaz, Norvir and Truvada new
      #273390 - 08/11/13 06:00 AM

Good for you!
and don't worry, cART enables many different combinations. Your new doctor will probably prescribe you new meds that will slow the virus just the same and hopefully with less side-effects. Here's a little extra info on the medications used today.Good luck!

--------------------
Here for you
More info on my website

Post Extras: Remind Me!   Notify Moderator  
BrokenWingedBird
Regular

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Reyetaz, Norvir and Truvada new
      #273434 - 08/14/13 06:41 AM

Hi, bscottmatt! I believe you, 100%. I went through something similar. (Read some of my earliest posts on this forum.)

BUT you have GOT to get back on HIV meds as soon as possible!

You just have to make sure you don't go back on the same combination that has caused you so much grief. I had to kick and scream before my doctors would move me to something more suitable. Even then it took my brain some time to settle down from the effects of the first, unsuitable, regime.

Get yourself back to an HIV specialist and quickly. Or consult the experts here on The Body as to what could be a good combination for you, then take that suggestion to your HIV specialist. If you have no faith in your HIV doctor, then get yourself along to a different clinic, a different set of doctors.

Best Wishes.

BWB.


--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

Post Extras: Remind Me!   Notify Moderator  
iam1
Regular

Reged: 06/17/09
Posts: 174
Loc: Georgia
Re: Reyetaz, Norvir and Truvada new
      #273435 - 08/14/13 11:13 AM

Thank you for pointing out what should be extremely obvious to the world - ALL DOCTORS ARE NOT THE SAME!

In this day we have doctors that are more and more specialized. They've gone to school and think they know everything there is to know about whatever it is they're treating. Refusing to hear anybody's opinion but their own. Everything is black and white in their eyes.

But, we get into this small gray area I like to refer to as humanity. There are over 7 billion people on this great planet. Each an individual. So, what works for the first 6.9 billion of us won't work for that last 0.1 billion. And, like it or not someone from that 0.1 billion that things aren't working for is going to go into that doctor's office and be treated like the other 6.9 billion.

Your doctor didn't listen to you. That was and will continue to be his or her major flaw. It doesn't matter in the doctor is the smartest person in the world and the patient is the most ignorant. (NOT saying you are!) Sometimes the patient knows something the doctor doesn't simply because the patient has the 24/7 experience of being the patient.

I don't know your care situation, but for most medium and large city clinics there is an option of a different doctor. ASK/DEMAND to see a different doctor if possible! Explain to your new doctor that you're not trying to be a problem child, but your previous doctor didn't listen to you.

It's important for each of us to express clearly our concerns regarding our treatment. You wouldn't believe how many times a day the doctor goes into the exam room, asks questions, and gets back the exact same response - I'm okay. Then the person will leave the doctor's office and start complaining before they get to the sidewalk/parking lot about how the doctor never listens to them.

It's not as if we're doctor hopping to get better drugs. All the medications being used to treat HIV work basically the same - they stop the virus.

Sit down and face your doctor. Get in his or her face and tell them they're not listening to you. Tell them that 2 years is more than long enough to the side effects to have passed. If they still don't listen try finding a new doctor.

Be sure to communicate with your new doctor. They want to help you. But, they need to hear more than an "I'm okay" to get it done.

And, let us know how you're doing.

Post Extras: Remind Me!   Notify Moderator  
bscottmatt
New User

Reged: 03/09/13
Posts: 13
Re: Reyetaz, Norvir and Truvada new
      #273512 - 08/20/13 06:20 PM

Thank you. And I go to see my HIV doctor tomorrow. It's a new lady who is very great to work with. She's been in HIV for 15 + years. Hoping that I can find a new regimen that doesn't mess with my mind so much!

Post Extras: Remind Me!   Notify Moderator  
Chris07
New User

Reged: 06/08/04
Posts: 3
Loc: Kaneohe, Oahu, Hawaii
Re: Reyetaz, Norvir and Truvada new
      #273535 - 08/22/13 07:09 PM

I just quit taking my meds, Truvada and Isentress. Taking Truvada for a long increases the risk for it's side effects. I started having moderate to severe pain in my hands and feet, which is a side effect of Truvada. Since I quit taking my meds, I have little pain in my hands and much less pain in my feet!!! This was cocktail #9. I started taking meds in 1995. I'm taking an indefinite med holiday, at least 6 months to a year. I'm 61-years-old. I'm fully aware of the consequences of not taking meds. I want to feel physically healthy again!!!

Post Extras: Remind Me!   Notify Moderator  
BrokenWingedBird
Regular

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Reyetaz, Norvir and Truvada new
      #273541 - 08/23/13 06:57 AM

Chris07, I understand how you feel.

Do you know the reason why you've had to have nine different drug combinations in eighteen years, at a rate of one new combination per two years?

Have you always taken all of your HIV medications with discipline, not missing doses?

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

Post Extras: Remind Me!   Notify Moderator  
bscottmatt
New User

Reged: 03/09/13
Posts: 13
Re: Reyetaz, Norvir and Truvada new
      #273599 - 08/27/13 06:44 PM

I am starting to feel the same way! I was feeling great being off meds because of the mental fog which was severe and debilitating. Now I'm on day four of Isentress and Epzicom and I'm starting to lose interest again in things I once found exciting. EVERYTHING I do has become a chore once again. I can't stand it. I don't want my life to end but I do want the mental pain to end. I'm not sure what mechanism of the meds is causing this horrible mental fog (some call it depression) but I don't want another minute of it! I spent almost a year of suffering and NO anti depressant helps. I'm not depressed. I don't even know how to describe how they are making me feel other than terrible.

Post Extras: Remind Me!   Notify Moderator  
BrokenWingedBird
Regular

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Reyetaz, Norvir and Truvada new
      #273621 - 08/28/13 04:48 PM

bscottmatt, I don't suffer from "the fog" as badly as you report you do, but I do suffer from it to some degree and so I understand what you're saying.

You've got to stay on those meds. You say anti-depressants haven't helped. That means you have to find some other way of reducing that fog.

My fog is with me every single morning. I feel like I've woken up in a refrigerator. Everything in the world seems grey and devoid of life. It's pretty miserable.

Here's what I have learnt to do.

I force myself to down some breakfast and a cup of coffee, and then I immediately begin to read aloud a novel of great quality - the kind of novel that requires you to THINK or otherwise you just won't understand what you're reading. The first five to ten minutes of this are difficult. Sometimes I have to repeat sentences several times, aloud, in order to understand them! But by persevering I force my brain THROUGH the mental fog. And I can honestly report to you that after just half an hour's reading aloud, with concentration, the fog has gone, my brain is in the right groove, and I'm ready for my bath and to face the rest of the day.

Give it a try for several weeks! First thing every morning.

The other thing I do is that AFTER my bath, as soon as I've got my underclothes on, I force myself to do a dozen exercises. I do roughly 20 repetitions of each exercise. The first is simple squats: standing with legs a little apart, I go right down, keeping the soles of the feet firmly on the ground, hold near the floor for a few moments, and then rise again to vertical position. This I follow with 20 lunges: lunging first on the left leg and then holding position above the floor for a few moments, before returning to vertical and then lunging forward on the other leg. I won't go through all my exercises, except to say that the last one involves running on the spot, knees as high as possible, until I am absolutely puffed out. All this lasts only 20 minutes and by the end of it I feel so good it's addictive.

Really focus on these two methods, bscottmatt; give them a couple of weeks; and I would be very surprised if they don't help.

Best.
BWB.

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

Post Extras: Remind Me!   Notify Moderator  
bscottmatt
New User

Reged: 03/09/13
Posts: 13
Re: Reyetaz, Norvir and Truvada new
      #273662 - 08/31/13 05:01 PM

I really appreciate you taking the time to reply to my post. Trust me, over the last year or so I have TRIED DESPERATELY to fight through the fog. I was always a very active, out going, spontaneous, joking, witty person but all of that has been lost somewhere. I am not "depressed" or "sad". I am being tortured mentally. That's the only way I can describe it. Everything, and I mean EVERYTHING is a chore. I don't want to shave, take a shower, stop for gas, shop for groceries. I get zero pleasure even when I force myself to exercise. I cannot even enjoy a sip of wine or a beer as I get ZERO pleasure any more.

Off the meds completely I'm a totally different person. However I have gone through an occasional "high" even on the meds but it rarely lasts more than a month before I crash very hard again into this foggy state.

I just had an emergency appointment with my Dr. and a pharmacist. They are running a battery of blood/urine tests to rule out things like Toxoplasmosis, CMV, etc. I am also going to have an MRI done of my brain. I live in a very small town so we do not have a Neurologist who specializes in HIV. I may have to travel to Philadelphia if these tests turn out to be negative. I was also positive for Syphillis (which I spent over a year untreated because my prior physician failed to read the test results. Yes, I went more than a year untreated and was never told of my positive results.) So there's a slight chance I may need a lumbar puncture to rule out Neurosyhpillis.

I'm so desperate for a breakthrough. I'm just glad that I have a new doctor now who is very kind, compassionate, caring and spends more than an hour with me at each visit. She held my hands and said that she will not rest until we get to the bottom of all this. So i at least have that going for me.

Thanks again for all of your advice and take care!



Post Extras: Remind Me!   Notify Moderator  
Pages: 1


What's New at TheBody.com

Additional Information
0 registered and 1 anonymous users are browsing this forum.

Moderator:  bogart, TheBody, crabman, riverprincess 

Permissions
      You cannot start new topics
      You cannot reply to topics
      HTML is enabled
      UBBCode is enabled

Thread views: 2852

 
Jump to

Contact Us | Privacy Statement The Body

*
UBB.threads™ 6.2.3