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Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: b3bear on June 21, 2011, 03:06:18 pm

Title: Anyone on Isentress?
Post by: b3bear on June 21, 2011, 03:06:18 pm
Greetings,

I was wondering if anyone has experience with Isentress? Myself and my Dr are starting to think about changing up my regiment due to my issues with statins

Since cholesterol is an issue with PI use, and heart disease is a risk factor in my family, I started using statins to help but the side effects have been an issue. Recently tried Lipitor with very bad results, that after one week, that one is off the table.

I have been on Kaletra/Combivir for 10 years with great results. Been undetectable 6 months after starting that cocktail so the idea of changing really isn't something I want to do. You know if it ain't broke.... right? But I would like to know if any of you have been using Isentress successfully.

Thanks
-Bill
Title: Re: Anyone on Isentress?
Post by: Miss Philicia on June 21, 2011, 03:39:56 pm
I've been on it since the day it was FDA approved, or about 3.5 years. I've had great lab numbers on this, and my lipid panel is within normal range, etc. No side effects.
Title: Re: Anyone on Isentress?
Post by: Billy B on June 21, 2011, 04:19:56 pm
I am going to get out the pompoms with Miss P. Nothing but good things to say about Isentress & Truvada. I was on only on Atripla a short time and lost my mind according to my friends. Switched to I&T and it has been smooth sailing. I do sweat a little more since starting it but some men do like musky armpits.
Peace
Billy
Title: Re: Anyone on Isentress?
Post by: wooffman99 on June 21, 2011, 10:26:05 pm
I just started on Isentress/Truvasa today. Altripa was a four day nightmare. I am praying this works out.
Title: Re: Anyone on Isentress?
Post by: Inchlingblue on June 21, 2011, 11:02:25 pm
I started with Isentress/Truvada in July 2009 and I'm doing great. It's a very good combo.

If you do a search on here for "Isentress" you will see lots of threads and posts about it.
Title: Re: Anyone on Isentress?
Post by: Billy B on June 22, 2011, 12:08:31 am
I just started on Isentress/Truvasa today. Altripa was a four day nightmare. I am praying this works out.

 Four days with Atripla was all I could stand. I was so weak that I could not climb my front steps. My IDS gave me two weeks to get my strength & mind back. The I&T has been wonderful for me.
Billy
Title: Re: Anyone on Isentress?
Post by: Betelgeuse on June 22, 2011, 12:27:20 am
As a treatment-naive patient starting out on Isentress, it was really comforting to me to know there are ARTs out there that do not carry any discernible side effects.

My baseline cholesterol levels are normal so I'll try and pay closer attention to those numbers with future lab results.
Title: Re: Anyone on Isentress?
Post by: TNguy on June 22, 2011, 12:00:51 pm
Hey b3bear,

I'm fairly new here & was reading your post. You didn't mention what issues you have with statins, but i'm on 2 different statins--Crestor for cholesterol & Antara for tryglycerides.

Although they have been working good, cholesterol went from 230 to 216 & triglycerides went from 600 to 181, i was extremely tired all the time as well as being sore alot. After complaining to my dr. so much he suggested that i get a CoQ10 supplement.  Coenzyme Q10  from what i understand is a vital enzyme in helping the cells producing energy, etc.

Looking it up on the net, i see that taking statins can deplete the amount of CoQ10 in the body. I started taking it and within a week or so began feeling much better. I went on Wellbutrin around the same time too so not sure which one is responsible, but i really believe the CoQ10 supplement is the one.

On a side note(& a very happy side note) my ED also stopped happening.  I thought it was a combination of HIV meds & getting older (47) and had gotten used to only getting "semi-hard" but to my ecstatic surprise everything's gotten back "working like it's supposed to." Again, it could've been the welbutrin...but i kinda think it was that maybe my heart muscle was lacking enough CoQ10 and my erections weren't on the top priority of where to be sending blood to, LOL.

Anyhow, just thought that whatever issues you have with statins, you may want to research the CoQ10 info & if you think you may need it ask your doc about it.
Title: Re: Anyone on Isentress?
Post by: wooffman99 on June 23, 2011, 04:42:53 pm
I have itchy hives all over my body. I guess Isentress isn't for me. Anyone have any suggestions?
Title: Re: Anyone on Isentress?
Post by: buginme2 on June 23, 2011, 04:48:12 pm
I have itchy hives all over my body. I guess Isentress isn't for me. Anyone have any suggestions?

Didn't you just start treatment?  You cannot tell if a treatment "isn't for you" after only a few days.  Give it a few weeks to settle down.  Skin issues and rashes are common after initiating treatment and usually settle down.  Try some Benadryl for a few days. 
Title: Re: Anyone on Isentress?
Post by: wooffman99 on June 24, 2011, 07:30:52 pm
Dr. took me off Isentress due to the hives. I don't know what to do. I would have stayed on it to see if it improved but he said no. He took me off everything (Truvada included) for 2 weeks. Start over then with something else. Any suggestions?
Title: Re: Anyone on Isentress?
Post by: buginme2 on June 24, 2011, 08:08:47 pm
Maybe it was more than hives.  When I started meds, I itched from head to toe for weeks.  My doc was very non-challant about it and told me to take Benadryl.  I did and it did get better.  I started on Atripla and a skin rash is common with it though.  From what I understand also is that once you start treatment, its common to experience other skin issues due to some immune reconstitution and they settle down after awhile. 

Why were you only on Atripla for four days?  Did you have a major reaction?  I think with whatever u go on you will experience a period of adjustment. 
Title: Re: Anyone on Isentress?
Post by: Betelgeuse on June 24, 2011, 08:28:24 pm
Isentress is very kind to me.  Not so much as a sneeze, I took it from day 1 without any side effects.  Different strokes for different folks, I guess.
Title: Re: Anyone on Isentress?
Post by: emeraldize on June 24, 2011, 11:27:02 pm
On Isentress/Truvada since 10/10 and have adjusted well. Looking forward to and expecting a steady rise in my CD4s.
Title: Re: Anyone on Isentress?
Post by: Inchlingblue on June 25, 2011, 09:55:51 am
Dr. took me off Isentress due to the hives. I don't know what to do. I would have stayed on it to see if it improved but he said no. He took me off everything (Truvada included) for 2 weeks. Start over then with something else. Any suggestions?

Is your doctor an HIV specialist with lots of experience?

There are other alternatives such as Atripla, Reyataz/Norvir/Truvada, etc
Title: Re: Anyone on Isentress?
Post by: fitguy on June 25, 2011, 01:48:52 pm
I just switched from atripla to isentress and truvada.  So far so good with the exception of some headaches.  Those of you taking isentress, do you take the truvada with your morning dose or evening?  My doctor said that taking the truvada in the morning is just fine.  Let me know what's working well for you.
Title: Re: Anyone on Isentress?
Post by: emeraldize on June 25, 2011, 02:16:19 pm
I was advised by doc and most important, by InchingBlue, to take I/T in the am. Inchling and Miss P have the most experience with I/T and their input factored greatly in my attitude toward and start with the regimen. Nothing like having an advance team!

Historically, have you been super-sensitive to medications of all types?

I do wonder if your doc could consult with another HIV doc regarding your initial sensitivities and whether it's a matter of making you comfortable and waiting it out or, if that is in some way putting you at risk in their opinion.
Title: Re: Anyone on Isentress?
Post by: Miss Philicia on June 25, 2011, 02:27:24 pm
I take it in the morning (truvada) but I see now reason for one way over the other -- if anything you may note that there's a pharmacy sticker on it saying it has the potential to cause dizziness in some people, so if that worries you it would make more sense to take it in the evening. I've never gotten dizzy from it myself. It can also cause nausea in some patients, so if that's happening it might be wise to take it in the PM.

I've been on Truvada for close to six years, and the Viread component of it almost a decade.
Title: Re: Anyone on Isentress?
Post by: wooffman99 on June 25, 2011, 02:40:51 pm
My whole story is, I started on Atripla but I "tripped" for 4 days. I had visuals of geometric designs and could not sleep. When I did nod off, I had dreams of drowning and I would wake up unable to catch my breath (hyperventilating). After 4 nights and days of this, I broke down and begged my Dr. to take me off Atripla.
Three days later he then put me on Truvada and Isentress and it was going fine for 4 days then I broke out in hives all over my body, and I mean all over head to toe. The Dr. told me he thought I could not metabolize Isentress and has taken me off everything for 2 weeks to start fresh at that point.  I am very sad and scared that nothing may work for me.  I don't mean to be a puss but this really sucks! I appreciate all your feedback. It does help to know I'm not only one who has side effects. I am lucky that there are options and my #'s are good. Thanks for letting me vent.
Title: Re: Anyone on Isentress?
Post by: Miss Philicia on June 25, 2011, 02:44:42 pm
I am very sad and scared that nothing may work for me. 

Naw, don't do that. First of all your lab numbers aren't dreadful in the first place, so you have some breathing room. Second, this is why we have so many med regimens available so consider yourself lucky as compared to a decade ago -- you'll find something that doesn't totally whack yourself over the head, most likely with your next regimen selection. Don't let your anxiety about it to get the better of you.
Title: Re: Anyone on Isentress?
Post by: emeraldize on June 27, 2011, 11:23:24 pm
I don't mean to be a puss but this really sucks! I appreciate all your feedback. It does help to know I'm not only one who has side effects. I am lucky that there are options and my #'s are good. Thanks for letting me vent.
You're not being a puss---yes, you are lucky there are options and I hope you don't have to suffer much on finding the right match for you.
Title: Re: Anyone on Isentress?
Post by: larry58 on July 02, 2011, 07:19:02 pm
I was taken off Atripla after 1yr when I couldn't control the hypomania, motormouth, even high blood pressure that I started getting about 9mos into it. We tried various things but eventually we stopped everything for a few months. I was able to restart the Truveda part of Atripla and start taking Isentress twice a day from then on.      After a year on this routine, I miss the hyperactivity and am left coping with fatigue and insomnia but very little else in the way of side effects.   I have a family history of bipolar disorder but have never had a prolonged episode of mania like the time I was on the Atripla. Sustiva was thought to be the culprit. I would have stayed on Atripla if I could have toned down the side effects.  Now I accept that this is my 'baseline' and try to cope without worrying that Isentress is what's causing fatigue, depression or whatever because I need to maintain this path to survival for a while. I'm 58. There are many other variables that I can play with to feel better.  But, this is my first post. I want to climb out of my shell this Independence Day and talk about this some more.l
Title: Re: Anyone on Isentress?
Post by: larry58 on July 02, 2011, 07:33:32 pm
I have itchy hives all over my body. I guess Isentress isn't for me. Anyone have any suggestions?
After starting Atripla for the first time, I developed the head-to-toe rash after the first week. My doctor put me on antihistamines and a Medrol dose pack. I had to take oatmeal baths and take off work but it went away just like my doctor said it would.  You may have started on the Isentress too soon and the Atripla was still around to induce the rash.  You still may be able to take Isentress. 
Title: Re: Anyone on Isentress?
Post by: larry58 on July 02, 2011, 07:51:28 pm
I just switched from atripla to isentress and truvada.  So far so good with the exception of some headaches.  Those of you taking isentress, do you take the truvada with your morning dose or evening?  My doctor said that taking the truvada in the morning is just fine.  Let me know what's working well for you.
When I take the Truvada in the morning, I do notice the dizziness and I'm already a bit spacey. So, I take it at night. The tradeoff for me seems to be that I have insomnia. I take Trazadone an hour before I go to sleep.
Title: Re: Anyone on Isentress?
Post by: Inchlingblue on July 03, 2011, 10:35:49 am
Welcome to the forums, Larry. You makes some very good points, above.