POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: el__misantropo on October 24, 2013, 08:53:33 pm
-
Ok so i'm just frustrated because i ultimately feel like I'm being pressured to take a medication just to stay alive. Unfortunately that's the nature of this disease. Take a pill, or die...so they say. Anyhow, I've been on Stribild for about a year now. It was my first drug treatment and over a few months increased my cd4 from 211 to now cd4 453. It worked rather quick...I might add tho, that one doctor was VERY surprised of my low viral load before treatment...7,000 after being poz 2.5 years and no treatment...i was taking oregano oil frequently...guess it works...anyhow...
a year later and i must admit i haven't gained a SINGLE pound since being on Stribild. And to make matters worse, I feel my teeth are now starting to decay...very rapidly. I looked at some online studies that does show that tenofovir is to blame for possible bone issues, even my doctor confessed this. Has anyone else had issues with Stribild after taking it for about a month? I think the drug has only been out a little over a year, so there can't be too many of us.
My doctor says there will be a new drug next year that does NOT have contents that cause bone issues, or at least the effects are very negligible, and I'm thinking of switching to that.
I'm just tired of feeling like a lab rat and would love for these scientists to focus more on natural cures. I don't want to be someone's means to make a quick buck and end up with a fractured skeletal system. I'm also concerned that since taking Stribild my AST and ALT levels have increased quite a bit.
But if there's anyone out there who has been taking Strilbild for a long while and would like to share, please do!
-
There are no supplements that are proven to lower viral loads , only ART can accomplish suppressing the viral loads for those of us with HIV .
Welcome to the forum and hope you come to terms with taking HIV meds , its the only thing going that's going to save your life .
-
I will agree with you that I wish there was something more natural but that unfortunately isn't the case, which is why i've taken so long to talk to my ID doc about meds. My whole life i've not even wanted to take even ibuprophen for example, for a headache. Ive always taken homeopathic and holistic approaches to my wellness, so I know how you're feeling. I'm sure that oregano oil would help your CD4 count on top of ARVs. I was planning on being prescribed stribild as well, but am waiting for the dolutegravir+epzicom once daily pill as my doc is very excited about it and i feel comfortable. Wish you well with your problems.
-
There are no supplements that are proven to lower viral loads , only ART can accomplish suppressing the viral loads for those of us with HIV .
Welcome to the forum and hope you come to terms with taking HIV meds , its the only thing going that's going to save your life .
well i don't know about that....the issue with your statement is that science has deviated so much from natural medicine that now natural cures/remedies are rarely discussed. i'm just finding out dessicated thyroid will help with my potential thyroid issues...simple dried animal thyroid will help with that. no need for pharmaceuticals. i might add i've read many testimonials about oregano oil and coconut oil controlling people's viral load...have they been proven to be cures?...no...but neither has this Stribild which might have me in dentures by the age of 35.
just because the medical industry neglects natural cures/treatment doesnt mean they don't exist. don't fall into the trap bro...keep an open mind.
-
I will agree with you that I wish there was something more natural but that unfortunately isn't the case, which is why i've taken so long to talk to my ID doc about meds. My whole life i've not even wanted to take even ibuprophen for example, for a headache. Ive always taken homeopathic and holistic approaches to my wellness, so I know how you're feeling. I'm sure that oregano oil would help your CD4 count on top of ARVs. I was planning on being prescribed stribild as well, but am waiting for the dolutegravir+epzicom once daily pill as my doc is very excited about it and i feel comfortable. Wish you well with your problems.
i wish i were in your shoes! before starting meds i was always searching for other means of controlling this and knowing what i know now i would've tried harder when i was off meds. it seems like once you start taking them you'd be scolded if you stop. once i stop the stribild i certainly would like to stop for a few months to see if other methods will work.i cant bear the thought of losing my teeth...not to mention the changes in my bloodwork that are indicating my liver is going into overdrive.
-
well i don't know about that....the issue with your statement is that science has deviated so much from natural medicine that now natural cures/remedies are rarely discussed. i'm just finding out dessicated thyroid will help with my potential thyroid issues...simple dried animal thyroid will help with that. no need for pharmaceuticals. i might add i've read many testimonials about oregano oil and coconut oil controlling people's viral load...have they been proven to be cures?...no...but neither has this Stribild which might have me in dentures by the age of 35.
just because the medical industry neglects natural cures/treatment doesnt mean they don't exist. don't fall into the trap bro...keep an open mind.
Let me say this. Early into my diagnosis, I had a shoebox full of supplements, that supposedly were "proven" to strengthen the immune system. What did it get me? A lot less cash, and sliding into the wasting syndrome. So, while science does not regulate these otc, what you think are "cures," there is a reason for that-they don't do what some people claim. I know, I've had firsthand experience. I've been on meds almost as long as I've been diagnosed, and Stribild is a walk in the park compared to the earlier meds.
Now, about the dried animal thyroid. I had hypoactive thyroid and this crazy psychiatrist put me on ground up horse thyroid. It made my thyroid toxic and I ended up in the hospital a couple of times, with my heart throwing PVC's. So, I would be very careful about venturing into the world of "natural" cures. There's a reason the FDA does not regulate them.
I'm all for natural "aides" to healing, such as chicken soup for a sore throat and chest congestion. I do, however, make sure there is a solid line drawn between what I believe actually works (studied medications), and what doesn't (supplements, oils, etc.). Not trying to steer you away from eating and living healthy. I only want you to be sure you are aware of all the risks of abandoning studied meds for homeopathic alternatives that aren't really "proven," (as regards to standards set by science), to do anything.
-
a year later and i must admit i haven't gained a SINGLE pound since being on Stribild.
Lucky. It fattened me up to 165, and I'd give anything for my acute infection weight of 150.
And to make matters worse, I feel my teeth are now starting to decay...very rapidly. I looked at some online studies that does show that tenofovir is to blame for possible bone issues, even my doctor confessed this. Has anyone else had issues with Stribild after taking it for about a month? I think the drug has only been out a little over a year, so there can't be too many of us.
I'm in month 10. My teeth seem fine, though I do horrible things to them. I too worry about bone density loss as I get older.
My doctor says there will be a new drug next year that does NOT have contents that cause bone issues, or at least the effects are very negligible, and I'm thinking of switching to that.
Your doctor was probably talking about the new formulation of tenofovir called TAF. There's already tenofovir (TDF) in your Stribild. You're soaking in it. TAF is as effective as TDF with a smaller dose (thus fewer side effects). I've been told by people who've been through this that one day it will simply appear in our Stribild in place of the current formulation - they'll do a switchover.
I'm just tired of feeling like a lab rat and would love for these scientists to focus more on natural cures. I don't want to be someone's means to make a quick buck and end up with a fractured skeletal system. I'm also concerned that since taking Stribild my AST and ALT levels have increased quite a bit.
The alternative is AIDS. Not fetch. There is no "natural" cure for HIV, no matter how much you may wish it so. Sorry, but HAART is the best we've got.
-
There are drugs available now that avoid tenofovir, the drug tahtvcauses bone loss in some people. Since you trust your own judgement on non prescription meds, why not research the alternatives to Stribild, including perhaps, off label but effective options like boosted Prezista monotherapy? - matt
-
It was my first drug treatment and over a few months increased my cd4 from 211 to now cd4 453. It worked rather quick...I might add tho, that one doctor was VERY surprised of my low viral load before treatment...7,000 after being poz 2.5 years and no treatment...... I think the drug has only been out a little over a year, so there can't be too many of us.
Welcome to the forums and congrats for recovering
Did your doctor by any chance gave you your CD8 numbers as well ? That would be interesting
Also, I have been trying to get a price for Stribild treatment but seems to be priced differently in various countries.
Which insurrance covers the cost, if I may ask ?
Many thanks in advance and thanks for sharing your experience
Eric
-
Welcome to the forums and congrats for recovering
Did your doctor by any chance gave you your CD8 numbers as well ? That would be interesting
Also, I have been trying to get a price for Stribild treatment but seems to be priced differently in various countries.
Which insurrance covers the cost, if I may ask ?
Many thanks in advance and thanks for sharing your experience
Eric
yes, i have my cd8's as well....
strangely enough on my last exams both my cd4s and cd8s went down, but my percentages have improved
july '13
absolute cd4 457
% 33.7
absolute cd8 536
%39.5
cd4/cd8 ration .85
october '13
absolute cd4 434
% 39.7
absolute cd8 373
% 34.1
cd4/cd8 ratio 1.16
i've read online that sometimes the ratio of cd4/cd8 is just as important, if not more important, than the individual numbers. i have to talk to my doc about this next time. things seem to happen so fast during appointments that i really dont feel i have the opportunity to get a thorough explanation of what's happening to my body. but next time i plan to be well prepared with concerns.
i have no idea about pricing. i just know that it's expensive. thankfully i dont have to worry about that and it's taken care of. although it is a possibility that once the medical changes are underway that things may change. my doc has said she's had a hassle getting people to continue certain drugs do to insurance changes. :(
-
Thanks ...
Sorry, but I was meaning cd8 data before taking the meds, when your VL was at 7000 (or even before that..). If you have that... would be nice, because as you said, you case is not very common, but, not unseen.
You may want to talk to a specialist (including an HIV trained dentist) before putting all the blame on TNF. If my recollection is correct, untreated HIV itself may have damaged your teeth.
Tenofovir studies point to a (suspected) bone density issue. A number of posters in this forum have switched away from Tenofovir due to bone or Kidney concerns, but, I have not read anyone complaining about teeth (and TNF). I might be wrong, though...
AST and ALT become a concern when they are 5 or 10 times the range upper limit, so an increase within range may not be considered as a major concern although follow up is required.
Switching out of TNF is doable. People swithching out for bone or kidney concerns usually turn to Epzicom (ABC+3TC), but, you have to take an HBL** ?? test before. Most people are neg. (and can safely try Epzicom, which I take...), but is you are + to it, then it might explain the low initial VL , but, then, unfortunatly Epzicom becomes a risky option.
Insurrance: nice to know that have things covered. Still does not help me much. Here, I will have to change insurance, but, I would hate to have to ask our HR dept, if the new insurrance plan covers Stribild; Which is why I keep asking for insurrance name so that I can put that one (or others) on top of my wish list. Thus far I have been able to acertain which HMO cover Stribild and which will put restrictions on it
Hoping you could help me.
Hoping that my others comments might helps you
Cheers! Eric
-
I been on Stirbild since March.
I had no noticeable sides, although I seem to have put on 10 pounds in the past couple, however I relate that to my eating habits as if late I not been in the gym on a regular basis. Knowing my body I would lean towards poor diet/exercise for my weight gain.
-
misantropo---really glad you are sharing your experiences with Stribild. I think it has only been available since Aug 2012 (unless you were involved in a study.)
So the user feedback is still a smaller pool.
On Stribild for 5 months now and havent had any negatives...yet. Hope the teeth and bone density issues improve for you. Your post made me realize the need for a bone density test, due more to just regular old aging. Ah, another test.
-
just a P.S. misantropo.......
since the edit window seems short.....may sound like a little thing.......but some of the fluoride mouthwashes (I use ACT) really do help. Vigorous rinse a couple times a day has especially kept my gums healthier.
-
Hi Scotty54,
You're right. el__misantropo did not provide info on the financing. I did not expect that trying to figure out how people can cover a $50.000 / year treatment would be that difficult
Apparently , it is ...
Let's wait and be patient
Cheers
Eric
-
Modify time window is very short and preview doesn't seem to work today ...ERic