POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Sweet_C on November 03, 2008, 12:24:07 pm
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I was recently diagnosed and while my labs are still good, I wanted to start treatment early. It seems like there are less side effects with this Isentress than the others so I'm happy about that, even though I was hoping to get on a once-a-day combo. Also, I like that it doesn't have to be taken with food.
I had gone in thinking I was going to go with a combo of Reyataz/Norvir/Truvada but I didn't realize the Norivir had to be refrigerated. I was afraid of leaving it out somewhere or not having access to a fridge. Maybe it wouldn't have been an issue, but I was afraid it might be a hassle.
The only thing I'm worried about with this combo is that it is so new, especially since I hope to have children someday. But since that is probably still some time off, I'll just have to see how that goes. It seems no one really knows the long terms effects of most drugs anyway.
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Hi Sweet,
I am on Isentress and Truvada. I haven't had any side effects ( WOW..I am so amazed!) and I really like the fact that I don't have to take either one with food. I was on Kaletra, Ziagen and Videx for the past 7 years and my cholesterol was out of control, even taking Lipitor.
Since I started the new meds, my cholesterol is back to normal and everything is in check. Best combo I've taken so far.
I hope it works just as well for you...
rich
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I had gone in thinking I was going to go with a combo of Reyataz/Norvir/Truvada but I didn't realize the Norivir had to be refrigerated. I was afraid of leaving it out somewhere or not having access to a fridge. Maybe it wouldn't have been an issue, but I was afraid it might be a hassle.
Incorrect. Norvir only needs to be refrigerated if it's going to stand longer than 30 days. Therefore your normal month supply need not be refrigerated.
Otherwise I've been on Isentress for a year now. No side effects, excellent lab results. It's by far the best HIV med I've taken during 15 years on treatment.
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Incorrect. Norvir only needs to be refrigerated if it's going to stand longer than 30 days. Therefore your normal month supply need not be refrigerated.
Otherwise I've been on Isentress for a year now. No side effects, excellent lab results. It's by far the best HIV med I've taken during 15 years on treatment.
I've been on Isentress, Travada, and Norvir, for well over 3 yrs. No side effects, excellent lab results ;D
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I'm so glad to hear that Isentress is so well tolerated! I hope I get good results with it too.
Philly--Wow...I really like my doc but I'm a little concerned that she would leave a little detail like that out because it was a major reason I chose Isentress over the other combo. I'm still happy with my choice but, man....
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Don't be too hard on your doc, Sweet_C.
Philly is absolutely correct but Abbott the maker of the drug still recommends refrigeration even though it says it isn't required if used within 30days and kept away from light and heat. Still if you get your meds in 90 day supply you do need to refrigerate the Norvir capsules. The liquid form of Norvir doesn't need to be kept cool but it is truly disgusting!
Another consideration of your doctors may have been that Norvir should also be taken with food and Truvada and Isentress don't require food so it might be easier to fit into your lifestyle.
Best of Luck!
AA
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i'm sure you'll find it an easy combo to be on, sweetc, iwth minimal side effects. i always found truvada best taken with some food to reduce GI effects.
i know they just changed guidelines ot include prezista, but i thought isentress hadn't yet been licensed for treatment naive/drug sensitive use? (although it has performed very well in comparison trials with sustiva)
just wondering if your dr explained this to you, & what his reasoning was for prescribing - esp as a) i would guess isentress is a more expensive option than other first line drugs? & b)i htink in other posts you have mentioned wanting to become pregnant in the near future - isentress is a category c drug at the moment
kate
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Technically, Kate you are correct -- Isentress has not been approved yet as a first line treatment in the US, but doctors can at their discretion still prescribe for such as "off label" like they can pretty much anything. The retail cost in the US for Isentress is ~$9,900/yr. But I agree, if you have pregnancy concerns you need to look into using this more as Kate ever so wisely suggests.
Swee_C, I agree and I'd be a bit concerned if my doctor wasn't aware of what they were saying as regards refrigeration of Norvir, as it's a very commonly prescribed HIV medication and used as a booster with so many things. This is not some obscure thing in terms of treatment. Frankly I'd ask the doctor one more time, to make sure you heard him/her correctly, and then direct them to the Abbott web site with the proper information and ask them to explain the discrepancy. Then I'd look for a new doctor. I'm sorry if that sounds harsh or alarmist, because I'm not that type of person (which is why I recommend making sure that what you think you heard is what your doctor actually said), but getting the correct information is indicative of an informed doctor, and as an HIV patient you must always insist on a doctor that is informed. Information changes to quickly with this disease to be complacent with that.
Maybe they made their recommendation based on other things, like that you live in the South where it gets hot during the summer and perhaps they didn't think you run an air conditioner or something. It is true that Norvir is a gel cap that should not be stored in a place that experiences +77°F within that 30-day period. Like the other poster said above, if you were to order a 3-month supply at one time you'd store the excess two months in a fridge until you are ready to use them.
The bottom line is that all this in no way effects your life unless you don't run an A/C in the summer.
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I have been thinking of switching my treatment from Atripla over to Isentress, Travada. My numbers have been very good with Atripla, but I do have some sleep issues with it. I have been on Sustiva/Truvada ie Atripla for 3 1/2 years, and have been concerned that if is switch over to Isentress I could be using up a med that would work if Sustiva failed. So I have been toughing it out. The sleep issue is bothersome at times and I also feel a little spacey when up to long after I take it.
My ID doctor told me to switch over for a month and see how I like it, and said if I wanted to switch back to Atripla I always could. I am just hung up on the idea of using a med that would counteract any resistance if it came about with the sustiva. :-\
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Now I'm really starting to get concerned about my doc. Do you all think I should consider switching treatment options?
My doc went over the pros and cons of each of the treatment options with me. I liked the Truvada/Reyataz/Norvir combo because it was once a day, even though I was a little concerned about my eyes turning yellow. We talked about that a bit and I finally decided I would try it out and if I noticed any yellowing, I could switch to something else.
Then after all that, that's when she mentioned the refrigeration issue. I feel really misled because she even asked me why refrigeration was an issue for me and I told her it's because I'm on the go a lot and didn't think I could guarantee that I would always have access to a fridge at a certain time a day. Then she told me that it was o.k. to leave it out for 24 hour periods, but that I should put it back in the fridge. So I was left thinking it was like leaving milk out on the counter and I told her I couldn't do it.
I do live in GA, so she might have been erring on the side of caution, but I think she really should have given me the whole truth about it. I think she likes to assume that her patients are not going to follow instructions exactly and wants to make it sound like the rules are more strict than they really are.
Because of the refrigeration issue, I said I wanted to go with my second choice option, which I think was Viramune. She had told me that this drug had led to some serious liver issues in some women, but I just didn't feel like I could manage refrigerating the Norivir.
That's when she steered me toward the Isentress. She told me it was new. I didn't realize it wasn't approved for people just starting treatment. She spoke very highly of it because it is tolerated so well by most people.
We also talked about the pregnancy issues and the fact that there's no information about whether it's safe during pregnancy. It will probably be at least a year before I even start trying to get pregnant, so she felt there may be more info about it by that time. She mentioned that a lot of women have healthy babies even while on atripla. So I was left thinking that this was something that can be worked out in the future.
I like her as a doctor because I feel really comfortable with her. I'd like to believe that she just likes to be super cautious about everything, but now the fda approval issue is worrying me.
What do you all think?? I'm supposed to go back to her in two weeks. I haven't had any side effects so far after two days on this combo.
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Sweet c,
If this is your first line of therapy you might want to consider Atripla. I do know that it is one of the recommended first line of therapy's. I have done really well on it, but the only complaint I have is the sleep issue at times. Also I spoke to my ID doctor about Isentress and Truvada and he told me that they are doing a study right now for naive treament patients that will enable them to take Isentress and Truvada with 1 pill per day like Atripla. You might want to check that out as well.
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About Norvir
I live in GA as well, and am aware of the heat and humidity that often exists here. That having been said, Norvir does NOT need refrigeration unless the ambient temperature is going to be well above 75-80 degrees for extended periods of time. My Norvir stays on my kitchen cabinet all month, and I have never had a melt. Then again, I am NOT a warm weather guy, and I keep my place relatively dark and cool (70 is warm for me).
I would not recommend leaving it in your car, or in a purse in your car all day (or even a few hours) because a melted Norvir is relatively useless, and pretty expensive. If your regimen is once a day, then taking it in the morning and then leaving it at home, I honestly don't see the problem.
As for the Reyataz
You DO know that, in the case of eyes turning yellow (which is not a given; only some people experience that effect) it is a temporary side effect that rarely lasts more than a couple of weeks. If your eyes turn yellow, it will most likely pass, and quickly. As far as complications from treatment go, this is VERY mild.
Atripla can be a good choice, provided you react well to the Sustiva portion of the drug, and be monitored for possible liver interactions. As a female, some attention should be paid to your bone density over the long term as well.
And we ARE talking long term here. Years, perhaps decades. During which you Can have a family, pursue a career, and enjoy a life without a decline in your immune system.
It sucks to get HIV, and it sucks to have to choose to take these powerful, potent medications. But here, in 2008, the odds are decidedly in your favor. Temporary weird dreams and temporary yellowing of the eyes is a small price, considering the horrors of a decade ago.
Your options are yours, and your doctor seems sound.
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It seems to me that from Sweet's last post that she went ahead and started this Isentress regimen, so maybe it's a good idea to just stick with it for now.
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Thanks, philly, I had neglected to notice that. Isentress is a great drug, if a bit on the unforgiving side, as far as dosing goes (I am sure that improvements in that direction will be made).
I fully agree that once a decision is made regarding first live therapy, it should be adhered to as long as possible, efficacy and side effect tolerance notwithstanding.
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O.K. I'll stick with the Isentress unless some bad information comes in about it. So far so good. If they get a one pill a day option for it, I'll be in heaven!
Atripla sounds super convenient but my doc won't prescribe it to women who are of childbearing age.
I don't know what I would do without all of you. I had gotten really overwhelmed trying to read up on all different treatment options.
Thanks everyone. I feel so much better now both about the drugs and my doc. After thinking it over, I think if there were a huge concern about this drug, my doc wouldn't prescribe it to me. She seems super cautious.
I was in really good spirits today now that I've started taking these meds. Even though my numbers are still good, I hated thinking about this virus being in my system, multiplying and not doing anything about it. I was on edge everytime someone coughed or sneezed. It's just been a
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Good luck with starting your meds.
I'm glad you feel better about your doctor. Always remember they are working for you and if you aren't sure of something they said ask them to explain it another way. Sometimes it's helpful to write down any questions you might have and bring the list in with you on your visits.
AA
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I haven't felt any side effects at all yet! ;D
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I am thinking about starting this combo because I have been on Truvada/Kaletra for over 2 years and I am starting to see signs of LIPO so I am glad to hear you guys are doing well on it.
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Norvir refrigeration has been a slight pain in the butt, but what I found harder was the coordination of the shipping to intercept the package. However, to ease your fears regarding the refrigeration of the Norvir Capsules, a new tablet is soon to be released. Please read the following:
http://www.aidsmeds.com/articles/hiv_norvir_tablet_2211_15142.shtml
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Hello I am on Truvada and Isentress and I do not have any side effects. i have been on them for a few months now. Before this I was on Atripla and boy where those side effects awful. I puked every morning after taking Atripla. The only good thing about that med is its once a day.
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As dreadful and unforgiving drugs whose long term side effects are still largely unknown go, Isentress is my favorite so far.
Isentress and Truvada, to the best of my ability to asertain, rock. I have tried Kaletra, Sustiva, Crixovan, Viracept, Virammune, any/all incarnations of AZT, and about ten others who escape me. I do get a slight headache from Isentress, but it responds well to ibuprofen or tylenol or sleep or taking it out on a stranger on the internet.
Jonathan
/on Isentress, Truvada, Prezista, Norvir, and associated peripheral drugs to stave off the OIs.
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I am starting this combo tomorrow also. If all goes well: goodbye Kaletra (4 pills a day on top of 2-4 imodium)!!
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I am starting this combo tomorrow also. If all goes well: goodbye Kaletra (4 pills a day on top of 2-4 imodium)!!
I started the Isentress/Truvada combo on friday....so far no side effects....maybe a headache every now and then....but its very minor...But after reading the other posts...I think I did read that Isentress does cause headache's....Good Luck starting......
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I started the Isentress/Truvada combo on friday....so far no side effects....maybe a headache every now and then....but its very minor...But after reading the other posts...I think I did read that Isentress does cause headache's....Good Luck starting......
Good luck and keep us posted.
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I had a few headaches when I began Isentress, but they were very minimal if I keep in mind that I've often gotten headaches when I've begun ANY new HIV combo. As they were minimal aspirin was sufficient, and after 2 months they never recurred.
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I'm fortunate I haven't had any headaches since I've been taking this medication. I've had frequent headaches in the past but so far so good!
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I should say that my headaches were so minimal that there's not really a responsible way for me to connect it with Isentress. Feasible yes, but nothing to write home about.
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I also stated Isentress / Truvada recently as my first meds. My labs have been OK, but I knew it was time to start. My side effects have been minimal, a few headaches that have been addressed with Advil. This forum has been a great resource for me, thanks for sharing.
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I actually am on Sustiva, Viread, and Ziagen for 3 years, which is my first regimen. I am happy with the lab results, but my doctor was concerned with the new Ziagen findings and I am fed up with the Sustiva side effects, especially since I am a graduate student. All these concerns have been addressed as I am switching to Isentress/Truvada. I already picked up the drugs and are waiting to run out of the other pills before I start the new regimen. I am anxious and just want to start already. I have about a week and a half left, but am ready to switch.
I was really concerned about switching, since I feel the regimen ultimately works, but my doctor assures me that I should not develop resistance to Sustiva from switching. I have been 100% compliant in taking my medication, never missing a dose, so hopefully I can keep this up with the twice a day my new regimen will require. I am really looking forward to clearing my head from Sustiva and can't wait. I wish I would just start tomorrow.
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I will probably be switching to Isntress in the near future because I cannot get my lipids under control with the Norvir and Lexiva I now take.
It is probably more the Norvir, but I digress.
While I loathe switching meds, there are times when it is necessary.
HUGS,
Mark
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I've been on this combo for 7 months and can't think of one side effect I've had.
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Been on this combo for the last 3 1/2 yrs...........Good luck with that, you should be fine :D
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I recenty started taking Instress, 2x daily, only side effects I get is tiredness, I was switched to Kaletra 6 pills a day and insentress, your right about the frequent bathroom visits from Kaletra
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Be careful with "not storing" the Norvir in a fridge. I live in a tropical area (PR) and always put my Norvir & Aptivus (both gelcaps) in a small office fridge I bought for my bedroom. Daily temperatures frequently rise above the indicated numbers on the bottles here and they do turn soggy in the heat. A friend from NY came a while back and mentioned that he couldn't store his meds in a fridge while visiting his parents who don't know about his case. I offered my fridge for his days on the island and by the time he brought me his bottle they were very soft almost about to pop. I had never seen them like this. I do know they hold their consistency pretty good but just don't leave them exposed too long in warm temperatures.
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Abbot submitted their new heat resistant formulation of Norvir to the FDA in January, so please keep in mind this should be available soon. Also, Gilead is currently testing a new "Norvir booster replacement" called GS-9350 that neither requires refrigeration, but also shouldn't give your any diarrhea (for those that get it from Norvir like me) and should be better on one's lipid panel. I plan on going on a clinical study for this very soon, but that's also an option to look into. There's also a third booster replacement called SPI-452 being tested by a small company called Sequoia Pharmaceuticals.
http://www.aidsmeds.com/articles/hiv_norvir_ritonavir_1667_16021.shtml
http://blogs.poz.com/peter/archives/2009/02/gilead_plans_to.html
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i am thinking about starting the isentress/truvada combo.
but i am on Acyclovir for herpes supression and shingles suppression.
I searched the web and it says that there could be interactions between acyclovir with truvada or any meds containing tenofovir.
Is there anyone here on this forum that is taking both Acyclovir and a med with Tenofovir?
If so, have you had any side effects?
thanks!
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i am thinking about starting the isentress/truvada combo.
but i am on Acyclovir for herpes supression and shingles suppression.
I searched the web and it says that there could be interactions between acyclovir with truvada or any meds containing tenofovir.
Is there anyone here on this forum that is taking both Acyclovir and a med with Tenofovir?
If so, have you had any side effects?
thanks!
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The only thing I'm worried about with this combo is that it is so new, especially since I hope to have children someday...
Sweet C:
Well, depends on your definition of new. I've successfully taken Isentress + Truvada for 17 months with (expected) great results. My good friend, a "salvage patient" poz a quarter century, has successfully been on the same regimen for about 3 years (Thousands enrolled in clinical trials, long before general "release"). So, I'd say it's not exactly "new" any more.
Good health!
-Steven (aka 8) megasept)
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A couple of people have sent me messages. But i am sorry but i cannot find how to read them.
I have read and read the help section and i have done everything correct and still cannot read my messages. Perhaps it just doesnt' work with this computer. It's public so i can't change settings.
ANYWAYS, I just wanted everyone to know that my doctor said that he has many people on acyclovir who are taking Isentress and Truvada. He has only had 2 people with the kidney interaction side effect on this 3 med combo. He believes i would be safe with it.
However, He is giving me 8 more weeks to try to bring my CD4 counts in line via my perferred natural alternative treatments.
Will keep posted. Thanks. Love, GreggTenn
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ok, now i see my messages. thanks.