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Author Topic: Supplements Questions from a Newbie  (Read 7250 times)

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Offline JJDF

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Supplements Questions from a Newbie
« on: March 06, 2011, 02:05:33 PM »
Hi Everyone,

Newly diagnosed (Feb 2011) and a newbie poster here (been a guest reader daily since Feb.).  I apologize if this first post is a bit lengthy, but I wanted to provide a bit of information and then ask a couple of questions if I may.

First of all Ė this forum has been a tremendous help to me in the past month.  I was diagnosed while in the hospital for PCP.  I had been a regular tester, with my last test in January 2008 being negative (and past the window), and absolutely no reason to test since then.  So while it was a bit of surprise, I wasnít as shocked as I thought I would be.  I thought about how I really hadnít felt myself in the last year (itching, ďcoldsĒ constantly, digestive issues) and actually need to see this as an opportunity to make some lifestyle changes and feel good again. 

The first thing I did was come to this site (and thebody) and especially the forums.  The information people provide, the compassion on here, the humor, the support Ė I hope all of you realize how important and appreciated it is.  Hopefully, I, too, can become a contributor, but at the moment Iím not even at the apprentice stage!  All about reading and listening for me at this point.

Because of all the information and feedback on here, I met with my doctor and had all my questions ready.  He was very much in favor of Atripla.  From the get go Ė ďItís only one pill.  You might have vivid dreamsĒ  But I read more on here about CNS issues, which tend to be my main side effect of any medication if I have any at all.  I even took him the research someone linked on here about the study of stepping up doses of Sustiva over 2 week to lessen effects.  So, I asked about Isentress/Truvada.  He agreed that would be a fine way to begin.  We agreed to start the medication on March 28 Ė where I can actually take a week off from work to either get used to side effects, or if there are very few Ė just have a week off!  Ha.   So I think there is a plan.

My questions are about supplements.  I asked about supplements and he said really just start with a good multivitamin.  Iím all for less is more in the supplement world, so Iím ok with that.  But reading on here, while people are taking different things for different reasons, a common supplement Iím seeing is a probiotic in some form.  I see the benefits, have used it before, and am wondering if Iíd be wise to use them, and if so, should I start now since I have 3 weeks before starting the medication (and just coming off Bactrim mega doses!)? 

My second question Ė is there anything else I should consider in terms of supplements as essential?

My sincere appreciation for your help. 

JJ
     

Offline surf18

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Re: Supplements Questions from a Newbie
« Reply #1 on: March 06, 2011, 02:59:57 PM »
I Think fish oil is essential for everyone
Poz or neg. Take that. Probotic yep good one. If your on Tuvada take calcium and vit d
Good for bone issues
Also if your starting meds mar 8 get them now. Then reorder a month from today even though you have 3 weeks left,
You always want a stockpile of meds as a just in case.

Offline Inchlingblue

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Re: Supplements Questions from a Newbie
« Reply #2 on: March 07, 2011, 09:56:32 PM »
Probiotics for sure, and not every day. If you take most supplements every other day that's usually fine (and ends up costing less).

I'd take calcium/vitmain D and Omega 3 along with a multi-vitamin.

To be on the safe side, it's best to take supplements a couple of hours apart from meds. I take my supplements at lunch time.

LINK:

http://nybc.wordpress.com/2011/01/07/raltegrivir-isentress-and-antacidsminerals/

And as Surf18 says, order your meds ASAP so you can build up an emergency stash.

Offline JJDF

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Re: Supplements Questions from a Newbie
« Reply #3 on: March 08, 2011, 07:35:44 PM »
Thank you, both for your informative responses.  I was thinking about the timing of supplements and since I will be taking the other medication in the morning and then evening, I'm thinking the lunch supplement timing would be probably the best. 

I have mail ordered the meds and also have a 30 day doctor prescription - which I obtained after reading here. 

Again, thanks!

Offline surf18

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Re: Supplements Questions from a Newbie
« Reply #4 on: March 08, 2011, 08:17:31 PM »
id reccomend you get a pill box. one with the morning and one with pm. fill it once a week, i always do sundays. and take your supps with your hiv meds at around the same time every day. keep a few extra of your night time med in your wallet. just in case your not able to be home in your window of time to take the pill. then when you get home and take your supps put the unused hiv pill in your wallet to take the place of the one you took.

Offline leatherman

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Re: Supplements Questions from a Newbie
« Reply #5 on: March 08, 2011, 08:51:40 PM »
keep a few extra of your night time med in your wallet. just in case your not able to be home in your window of time to take the pill.
wallet, as in billfold? maybe not so much; but many stores sell medication keychain fobs. ;) Make sure to get one big enough to fit your meds into and one strong enough to get banged around some. Once a week, use the meds from the fob and refill.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline sfpvguy41

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Re: Supplements Questions from a Newbie
« Reply #6 on: March 08, 2011, 11:49:09 PM »
Calcium 500mg and vitamin d 400mg 2x/day take with the isentress. New studies say its possible that much of the bone loss we have is early during ARV treatment...so it is important to supplement now.  I wish i had known that.  Hopefully will help you combat that.

http://www.aidsmeds.com/articles/HIV_bone_metabolism_2581_20009.shtml
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline surf18

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Re: Supplements Questions from a Newbie
« Reply #7 on: March 09, 2011, 08:07:04 AM »
i have a wallet  with a zipper area, where the bills are supposed to go,so the pills are tucked in there safe and sound.

Offline Inchlingblue

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Re: Supplements Questions from a Newbie
« Reply #8 on: March 09, 2011, 08:36:14 AM »
Calcium 500mg and vitamin d 400mg 2x/day take with the isentress.  

It's best not to take calcium at the same time as Isentress:

http://nybc.wordpress.com/2011/01/07/raltegrivir-isentress-and-antacidsminerals/

It appears that polyvalent cations (such as magnesium, calcium, and iron) bind integrase inhibitors and interfere with their activity against integrase.

LINK:

http://hivinsite.ucsf.edu/InSite?page=ar-07-01

To be on the safe side,  as mentioned above, I take all supplements during lunch time when I don't have to take any meds.

Offline leatherman

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Re: Supplements Questions from a Newbie
« Reply #9 on: March 09, 2011, 09:41:03 AM »
i have a wallet  with a zipper area, where the bills are supposed to go,so the pills are tucked in there safe and sound.
I've carried my wallet in my back pants pockets so many yrs that it's molded to my ass. ;D There's no room in it for a condom much less pills. LOL If pills in it didn't bother the heck out of me every time I sat down, then I surely would have crushed the pills by sitting on them. Of course too, I was taking the gelcap Norvir for many years and sure never wanted to squish those things open. :D

I also have two daily pills boxes, and sort out a whole month's worth of meds at a time. Every Fri I take the pills in the fob and refill it from the Fri pill container. After 7 or 8 yrs now, this stuff is old hat. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Miss Philicia

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Re: Supplements Questions from a Newbie
« Reply #10 on: March 09, 2011, 10:29:24 AM »
I've taken calcium/Vit D at the same time as Isentress for four years with no ill effect on my lab numbers, nor have I been instructed by my physician to do otherwise.
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: Supplements Questions from a Newbie
« Reply #11 on: March 09, 2011, 10:29:59 AM »
I've carried my wallet in my back pants pockets so many yrs that it's molded to my ass. ;D There's no room in it for a condom much less pills. LOL If pills in it didn't bother the heck out of me every time I sat down, then I surely would have crushed the pills by sitting on them. Of course too, I was taking the gelcap Norvir for many years and sure never wanted to squish those things open. :D

I also have two daily pills boxes, and sort out a whole month's worth of meds at a time. Every Fri I take the pills in the fob and refill it from the Fri pill container. After 7 or 8 yrs now, this stuff is old hat. ;)

Mikie, I always carry a truckers/ bikers wallet in my back pants pocket (with this big ole silver chain attached to one of my belt-loops)  it's big enough to at least fit a condom in there ( if I ever need one) twice a day dosing morning and @ bedtime works for me, so , no real need to carry around meds  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline mbpoz6

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Re: Supplements Questions from a Newbie
« Reply #12 on: March 09, 2011, 02:59:48 PM »
Hi.

I was thinking about starting to take a multi-vitamin or calcium/vitamin D (I dont know which is better, hope someone can tell me) to go with my atripla. I will take my atripla at bedtiem adnmost likly my vitamins at lunch time at work. I'm newly disagnosed and want to stay on top of my game early. I start atripla this week.

I was thinking of only taking the vitamin(s) on weekdays at lunchtime at work, while I will take my Atripla everyday of the week of course at night. Is this a bad Idea? Or is it a must that I take my vitamins everyday?

Thanks,

Offline leatherman

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Re: Supplements Questions from a Newbie
« Reply #13 on: March 09, 2011, 03:31:47 PM »
twice a day dosing morning and @ bedtime works for me, so , no real need to carry around meds  ;)
I finally got to once a day dosing (T/N/R) when the doc switched me to the Truvada just over a yr ago - but I've carried my "dinner" meds with me for years. I can't tell you how many times, I got to go out to eat, I was at a relative's or friend's for dinner, or I was doing the fast-food-drive-thru thing for dinner on the way from here to there. I would have missed so many meds over the years if I hadn't been carrying a dose with me. :D

Its kinda like taking a couple days "extra" when you go on a trip. You never know when the airlines, a snowstorm, a volcano or a good time will delay a trip for a day or two. Or stockpiling meds just in case there's a disaster. If you're living a crazy busy life or around natural disasters alot :D, you never know when something will happen and you'll need some extra meds on you.

will take my atripla at bedtiem adnmost likly my vitamins at lunch time at work.
you might consider just going for the once-a-day-dosing by taking the vitamin with the atripla. it's easier to do, it's easier to carry around and it's easier to remember to take everything at one time.

along with my T/N/R, i take an acyclovir,a multi-vitamin (that the state HIV pharmacy automatically sends with my monthly med refill), and tramadol (time released pain med) for a total of 6 pills at dinner (3 small, 3 large sized). (Sometimes I throw 2 extra strength tylenol in there too.) I can carry all 6 pills in one fob and they fit in one section of the daily pill box effectively quadrupling the morn-lunch-dinner-ed dividers into a month long pill box ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Inchlingblue

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Re: Supplements Questions from a Newbie
« Reply #14 on: March 09, 2011, 07:25:30 PM »
Or is it a must that I take my vitamins everyday?

I eat well so I take my supplements about 3 times a week. I think vitamins and other supplements every day can be excessive especially if a person eats a healthful diet, that's my take on it. Maybe for the first 3 or 4 months you can take calcium/D every day since this is usually when more bone loss occurs.

I've taken calcium/Vit D at the same time as Isentress for four years with no ill effect on my lab numbers, nor have I been instructed by my physician to do otherwise.

You're taking such a panoply of ARVs that even if the calcium lowered your Isentress levels it's probably still fine.

That doesn't mean, given the pharmacological proof showing calcium, magnesium and iron (as well as some antacids) can lower Isentress levels, that it's fine and dandy for everyone who's on Isentress to take them at the same time.

 
« Last Edit: March 09, 2011, 09:09:15 PM by Inchlingblue »

Offline denb45

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Re: Supplements Questions from a Newbie
« Reply #15 on: March 09, 2011, 07:47:50 PM »
I eat well so I take my supplements about 3 times a week. I think vitamins and other supplements every day can be excessive especially if a person eats a healthful diet, that's my take on it. Maybe for the first 3 or 4 months you can take calcium/D every day since this is usually when more bone loss occurs.

I take a Men's over 50 one-day-vitamin every day, I should probably take more  supplements, but, had to give up on the fish-oil , just couldn't stomach it anymore , too many GI-problems  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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Re: Supplements Questions from a Newbie
« Reply #16 on: March 09, 2011, 07:51:29 PM »

That doesn't mean, given the pharmacological proof showing calcium can lower Isentress levels, that it's fine and dandy for everyone who's on Isentress to do.


Odd that there's no warning on the bottles of Isentress then, don't you think?  Is there just that one study saying this or do you know of others?  What's the esteemed Dr. Gallant say on the subject?
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: Supplements Questions from a Newbie
« Reply #17 on: March 09, 2011, 07:54:38 PM »
Odd that there's no warning on the bottles of Isentress then, don't you think?  Is there just that one study saying this or do you know of others?  What's the esteemed Dr. Gallant say on the subject?

My ID Doctor said supplements are fine, as long as don't go over-board with them, some people are taking way too much of them and shouldn't....
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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Re: Supplements Questions from a Newbie
« Reply #18 on: March 09, 2011, 08:15:48 PM »
My ID Doctor said supplements are fine, as long as don't go over-board with them, some people are taking way too much of them and shouldn't....

You're not following the contours of the conversation well tonight, darling.
"Iíve slept with enough men to know that Iím not gay"

Offline JJDF

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Re: Supplements Questions from a Newbie
« Reply #19 on: March 09, 2011, 08:23:23 PM »
Thank you for all the great responses.  I had to buy a daily pill box from all the bacterium and prednisone I was taking for the PCP. And for as long as I know I've  had a pocket pill box.  Lol.  Up until now it had gasX and Tylenol in there!  That's about to change.

I am for sure after reading all this going to do supplements at noon to avoid any interaction issues.

Again many thanks.   

Offline mbpoz6

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Re: Supplements Questions from a Newbie
« Reply #20 on: March 09, 2011, 08:27:06 PM »
Thanks Inch and lethearman for the advice. I think I will take my Atripla and vitamin together at bed time.

Inch, do you think its a good idea to take the calcium/vitamin d over a multi-vitamin like centrium? Since the multi-vitamin has calcium/vit d in it already a plus more?

Offline denb45

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Re: Supplements Questions from a Newbie
« Reply #21 on: March 09, 2011, 08:39:51 PM »
You're not following the contours of the conversation well tonight, darling.

Isentress, when to take muti-vitamins, how many should you take, what to take, what I'm I missing here?
David?
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Inchlingblue

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Re: Supplements Questions from a Newbie
« Reply #22 on: March 09, 2011, 08:41:34 PM »

Inch, do you think its a good idea to take the calcium/vitamin d over a multi-vitamin like centrium? Since the multi-vitamin has calcium/vit d in it already a plus more?

Given that HIV itself can cause bone loss as well as some of the meds, such as Viread, I would take calcium/D in addition to the multi daily for the first 4 months after starting meds. After that, assuming you eat a well-balanced diet, I'd take the supplements 3-4 times a week.  You might also add probiotics and Omega-3.

Since you're not taking Isentress it's probably fine to take the supplements at the same time as meds, although I personally prefer to take the supplements a few hours apart regardless of the meds in question.


Odd that there's no warning on the bottles of Isentress then, don't you think?  Is there just that one study saying this or do you know of others?  What's the esteemed Dr. Gallant say on the subject?

Honey, these are all relatively recent "discoveries," I wouldn't be surprised if Merck decided to add a warning about those polyvalent and divalent cations reactions in the near future.

Why are you being so obstinate? Let it go. Breathe.

On a related note, I think, in general, most of us are probably taking more meds than we need to so it might be fine if the levels are lowered due to a calcium interaction or whatever but because we don't know for sure unless we all undergo TDM (Therapeutic Drug Monitoring) it's not worth taking the risk, especially with a medication like Isentress, which has a low barrier to resistance (just one mutation renders it useless).  As the warning in HIV InSite eloquently states, pending further investigation, antacid medications and other agents with polyvalent cations should be used cautiously with (and taken separately from) raltegravir.
« Last Edit: March 09, 2011, 09:19:13 PM by Inchlingblue »

Offline sfpvguy41

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Re: Supplements Questions from a Newbie
« Reply #23 on: March 10, 2011, 12:19:38 AM »
Funny you should mention that: when i took isentress (october until, thankfully, last saturday) i also took my calcium at the same time. I saw the mentiooned warning, researched it and asked my doc about it, and he said it was no problem (active hiv practice in SF, so they are pretty current). I stayed undetectable on isentress/truvada but dropped it due to other side effects worst was loudly ringing ears (already improving after 6 days).


Www.hivdrug-interactions.org shows no interactions, and when the aidsmeds meds check section was up (seems down now) i also checked that and no warning.  For me taking 2 calcium supps 4 hours off the 2 isentress meant 4 dosings per day, and that was not easy for me.  Honestly, I'm quite happy to be back to once a day with reyataz, but i do need the calcium at night.  I recenty read* that the body can only absorb 500mg of calcium at a time so if you want 1000mg a day, you need 2x for that.

I'd be interested if there are more studies on this topic, 40% is a lot...

In a book called Outwitting Osteoporosis by Ronda Gates.
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline Assurbanipal

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Re: Supplements Questions from a Newbie
« Reply #24 on: March 11, 2011, 10:47:52 PM »
JJDF

As you can tell, there's currently a lot of interest in supplementing with calcium and vitamin D.  That's because quite a few of us wound up with ostepoenia or osteoporosis.

This is one of those emerging areas where the science is not quite settled yet.  There have been papers associating bone density loss with viread (in Truvada) and/or with protease inhibitors, but then there was also a paper last week associating bone density loss with starting any HAART.  The mechanism that causes bone density loss is not entirely clear either, although some papers have associated the meds with a drop in vitamin D levels.  Vitamin D and calcium are generally offered to people with bone density loss.  So a lot of people are thinking about adding vitamin D and calcium as supplements.

But it is possible to get too much calcium and vitamin D.  Calcium, in particular, is easy to overdo and can harm your kidneys.  Before just starting these as supplements, it is important to talk them over with your doctor.  Your doctor can also add tests to your bloodwork to see if you have the right levels of vitamin D (calcium is probably in your routine bloodwork already) if (s)he is concerned.

My own experience is that my gp tested my vitamin D level and put me on extra vitamin D.  When I found out I had osteoporosis the endocrinologist put me on vitamin D and calcium.  But then the kidney specialist decided that it was too much calcium....

So...supplementing may well be a good idea, but definitely let your doctor know what you are thinking and you might want to find out what (s)he can offer for monitoring whether you need to supplement at all.

Best
A




5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

 


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