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Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: emeraldize on June 07, 2010, 04:48:01 pm

Title: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 07, 2010, 04:48:01 pm
I gotta admit, I'm wincing a bit.

The first thing I wanted to do when I hit the sidewalk after getting my numbers this a.m. was go have a cry in the woods somewhere. But, that doesn't cut it on a day of work, no nearby woods and more things to do once I get home after work.

Then, there were half a dozen people I wanted to write to here and say Dammit!! I'm there. I've opted for Isentress/Truvada---what do you think? But, it comes down to what do I think? What the hell do I think about the choice, the reality, the commitment, the slight sadness I feel about this shift in play.

For seven years, I've tried to maintain a realistic attitude that this day could come and I needed to be ready. I've been involved in research as an LTNP---and, now, it doesn't fit as a moniker for me given the modified treatment guidelines. The erosion of the CD4 cliff to 313, although the Viral Waves continue to be super low at 4,400, is demanding my attention.

And, I've been exhausted recently--deeply exhausted. Not sure that is the reason why, but it could be. It could also just be increased stress,anxiety and not enough exercise, meditation, etc. The problem parfaits we all must eat now and again contribute to such deterioration. Where's a Harry Potter wand when you really need one...Virusonus Explodus!

So, after the appointment, I read a few posts by some of you who seem to be okay, even for a couple of years running, with Isentress/Truvada. I had to consider the side effects, most of all, of the available options. Although it's twice daily dosing, I can't afford certain side effects that accompany once daily dosing and I will learn to be dutiful about dosing. I have to figure it out.

If any of you reading this are on this combination, I'd like to hear from you. I start tomorrow evening. No matter what your experiences have been, I'd like to have some fresh reading material from people who are taking it. Good, bad, neutral. The input is welcome.

Thanks so much.
Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: megasept on June 07, 2010, 05:19:11 pm
Hi, Em!

I also had to adjust to being on meds from enjoying years without any---7 year STI in my case. The flip-side of doing so well for so long without meds is the harder psychological and social adjustment to returning to meds.

18 months of Isentress + Truvada. I have only the slightest doubts this is the best therapy choice available (not to all, globally) and am reasonably confident I won't regret this ARV therapy some years later. Side effects are mild, but present, in my case. They also improve. To state the obvious, adding over 200 to my CD4s and maintaining undetectable VL is about what I expected. I am pleased with these ARVs.

Do exercise and get back to the woods and meditation. For me anyway, exercise seems to lessen some of the unpleasant gastrointestinal side effects. Have some fun too!

Good Health!
-Steven (aka   8)  megasept)

Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: HowYouDoin on June 07, 2010, 05:50:09 pm
Hey Em!!!

I know how you must be feeling right now and when I started HAART for the first time three years ago I felt the same way you did except I was in a bit more of a worse position because I was diagnosed with a number below 200, had resistance to certain meds and did not know much about HIV/AIDS and had to make the adjustment in a two month span so it all went so fast.

You have the advantage to have more knowledge about the meds you are about to take and I can honestly tell you that you will be OK. Of course it is a major step and decision in your life but the side-effects SHOULD not interfere with your daily activities with the newer meds and I am taking Isentress/Truvada at the moment as well and have had a good experience with minimal side-effects. The best advice I can give you is to RELAX and have faith in the meds. Having a positive outlook will help you alot more than you think.  You are not alone my friend....

Al
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 07, 2010, 05:51:00 pm
Hi Steven,

Thanks for your quick reply and advice. What's the STI reference you used? (I only know STI as sexually-transmitted infection).

And, of course, I want to know the correlation between exercise and the particular GI side effects. Constipation? Frankly, I don't know a friendship between diarrhea and exercise unless I opt to live the rest of my life in the woods.

I greatly appreciate that you are 18 months in and not regretting the treatment. Any impact on your sleep, quality/quantity, or alertness?

Thank you.
Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 07, 2010, 06:00:45 pm
Hey Em!!!

I know how you must be feeling right now and when I started HAART for the first time three years ago I felt the same way you did except I was in a bit more of a worse position because I was diagnosed with a number below 200, had resistance to certain meds and did not know much about HIV/AIDS and had to make the adjustment in a two month span so it all went so fast.

You have the advantage to have more knowledge about the meds you are about to take and I can honestly tell you that you will be OK. Of course it is a major step and decision in your life but the side-effects SHOULD not interfere with your daily activities with the newer meds and I am taking Isentress/Truvada at the moment as well and have had a good experience with minimal side-effects. The best advice I can give you is to RELAX and have faith in the meds. Having a positive outlook will help you alot more than you think.  You are not alone my friend....

Al

Thanks so much, Al. Relax is probably the advice I need most as I feel at moments like my emotions resemble the panicked cat in your avatar without the facial expression. Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on June 07, 2010, 06:10:51 pm

What's the STI reference you used?


Structured Treatment Interruption.

Good luck, Em. I know the day will come for me too and I honestly don't think it will bother me when it does. Of course, that's easy to say now. Who knows, I might freak out. Won't know until I cross that bridge.

My current combo of choice would be Reyataz/Norvir/Truvada because it's once a day. That would change to Isentress/Truvada when it becomes once a day. But, I'm hoping to hold out for a new combo in the pipeline - Elvitegravir/Cobicistat/Truvada.

Good luck - hope this takes care of the fatigue issues for you.

Ann
xxx
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: veritas on June 07, 2010, 07:05:08 pm

Em,

You'll be on one of the best combo's out there. Few, if any side-effects (truvada sometimes causes sleep problems until your body gets use to it, which shouldn't take too long). I'm on truvada/isentress and to boot prezista-norvir. I exercise daily (run 2-3 miles plus weight training). You'll have no problem.
Watch your cd4s climb and vl load go for cover ---- you'll love the feeling of energy returning to your body.

Go for it, with gusto!!

v
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 07, 2010, 07:25:41 pm
Structured Treatment Interruption.

Good luck, Em. I know the day will come for me too and I honestly don't think it will bother me when it does. Of course, that's easy to say now. Who knows, I might freak out. Won't know until I cross that bridge.

My current combo of choice would be Reyataz/Norvir/Truvada because it's once a day. That would change to Isentress/Truvada when it becomes once a day. But, I'm hoping to hold out for a new combo in the pipeline - Elvitegravir/Cobicistat/Truvada.

Good luck - hope this takes care of the fatigue issues for you.

Ann
xxx

Thanks much, Ann. I'm not keen on twice a day, but the whole package of aspects of it helped me make the decision. I didn't know today was going to be decision day---so, I'm just easing into accepting initiation and-the pharmacy will have it ready tomorrow night. I sure appreciate the wish for luck and I, too, hope the fatigue is knocked back by this. My doc reports others who've felt more energetic after startign it. Thanks for the STI definition---I guess I was looking for STI -- Sympathetic Therapeutic Insight---by starting this thread.
I hope you have a while longer. You're in the ten-year range aren't you? Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on June 07, 2010, 07:42:32 pm

I hope you have a while longer. You're in the ten-year range aren't you? Em


It was thirteen years ago in May when I seroconverted. My last few CD4s were 399, 561, 576 and 392. Knowing me, they'll be back up in the 500s again when I get my results back from a few weeks ago.

My doc is so confident I'm not going to start progressing any time soon that he tried to get me to go six months between blood tests, but no way am I agreeing to that. We compromised at four months and I'm not terribly excited about that either. Oh well. ~shrug~
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 07, 2010, 10:09:20 pm
Thirteen years, that's great, Ann. Mine have popped around in the same range as yours, but they've been trending down and for the first time my percentage took a slight dip. So, I think it's probably best to start building the CD4 reservoir earlier rather than later cuz I ain't no spring chicken so age will work against me, too.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Hellraiser on June 07, 2010, 10:10:26 pm
Good luck Emmie!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on June 07, 2010, 10:11:35 pm
I started Isentress/Truvada in July 2009 with CD4s around 330 and VL around 9K.

Went undetectable very fast (about a week or so) since the VL was so low. CD4s are now close to 700.

I'm not experiencing any side effects to speak of. Initially I was very exact about the timing and I set two alarms on my cell phone (8AM and 8PM); now I'm used to it and I just remember. The timing doesn't have to be that exact especially after reaching UD.

I recommend the transparent weekly pill box thingees so you can see what doses you have or have not taken. I fill up two of them at a time so I don't have to do it every week.

I like the fact that there are no food restrictions with this combo, you can eat or not eat and it doesn't matter either way. It will very likely be approved for once a day, some people already take it that way and are fine.

Isentress is very potent but it has a low barrier to resistance so just make sure you don't miss doses. Also make sure that you're initial dose, whether it's at night or daytime includes both Isentress and Truvada since you would not want just Isentress in your system for those first 12 or so hours.

The pharmacist recommended I take the Truvada as part of the daytime dose, he said some people have sleep issues. I'm not sure how accurate that is but I take it in the AM just in case.

I'm not sure if you are on other meds, another member here, madbrain, recently started on this combo and had some issues with drug interactions which he resolved in part by taking I/T in one dose (he had a whole thread about it).

This is really an easy peasy combo for most people; chances are you will be just fine, Em. ;)

Keep us posted on your progress.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Assurbanipal on June 07, 2010, 10:17:33 pm
Em

I wanted to wish you well as you start.  

Isentress Truvada is a great combo for a lot of people -- they didn't work out for me in the end,  but I found them easy to take.  

With Isentress you don't need to take it with food, so the twice a day dosing was really pretty easy once you get used to it.  You just put one in your pocket/purse and set an alarm on your phone as a reminder (if you need even that).  And they aren't very temperature sensitive, so its easy to stash a few where you'll have access if you are out at night and might forget.

I'm hoping everthing is easy (and we get a celebratory limerick)

A
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: aztecan on June 07, 2010, 10:43:18 pm
Hey Em,

I have been on Isentress/Truvada for about a year now, more or less. Never had an easier regimen.

I think you will be fine.

By the way, I went 11 years prior to starting meds, so I understand how you're feeling.

Let us know how things go tomorrow.

HUGS,

Mark
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 08, 2010, 12:18:28 am
Thank you, each and every one of you, for sharing your experiences, whether present or past. I'll report in after I have some salvos down the hatch. And as soon as I feel motivated, I'll put a limerick together.

Ah hell, with the mere mention,Assurbanipal, I feel a pre-med ditty comin' on. The power of suggestion.

There once was a woman named Emmie
Who faced her CD4 dilemmie
And to prevent an immune mess
She chose Isentress
And Truvada as her ARV Armada!

Inch -- I think my regimen is supposed to be Truvada am then Isentress/Truvada pm (to be confirmed tomorrow night) and Assurbanipal, of course, you now have me wondering why it didn't work out for you. And Mark, I'm sure you do understand--it's a strange blend of surrender, sadness, optimism, sliver of anger, and topped with an appreciation that I have access to meds.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: megasept on June 08, 2010, 01:04:02 am
Hi, Em!

Treatment Side effects? Some "runs", belching/bloating. Constipation? Not that I recall.

Mental side effects? asleep or awake: absolutely no effect that I am aware of. Sleep like a baby.

-Steven (aka  8) megasept)

Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on June 08, 2010, 01:14:14 am

Inch -- I think my regimen is supposed to be Truvada am then Isentress/Truvada pm (to be confirmed tomorrow night) 

That doesn't sound right.

Maybe you meant to say: Isentress/Truvada AM and then Isentress PM
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 08, 2010, 07:59:05 am
That doesn't sound right.

Maybe you meant to say: Isentress/Truvada AM and then Isentress PM

You're probably right. I didn't write it down. Uncharacteristic of me, reflects the mood, I suppose.
I'll have a confirmation in hand later today. Thanks for noting it.
Em,

You'll be on one of the best combo's out there. Few, if any side-effects (truvada sometimes causes sleep problems until your body gets use to it, which shouldn't take too long). I'm on truvada/isentress and to boot prezista-norvir. I exercise daily (run 2-3 miles plus weight training). You'll have no problem.
Watch your cd4s climb and vl load go for cover ---- you'll love the feeling of energy returning to your body.

Go for it, with gusto!!

v

Thanks for the info, v. I look forward to the energy return. My VL is very low so it should be suppressed quickly. And, I hope to follow your lead with exercise to build up my stamina once I have some energy back.


I'm heartened by the comments and good experiences. Thanks all. Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Assurbanipal on June 08, 2010, 02:15:33 pm

Thank you, each and every one of you, for sharing your experiences, whether present or past. I'll report in after I have some salvos down the hatch. And as soon as I feel motivated, I'll put a limerick together.

Ah hell, with the mere mention,Assurbanipal, I feel a pre-med ditty comin' on. The power of suggestion.

There once was a woman named Emmie
Who faced her CD4 dilemmie
And to prevent an immune mess
She chose Isentress
And Truvada as her ARV Armada!

Inch -- I think my regimen is supposed to be Truvada am then Isentress/Truvada pm (to be confirmed tomorrow night) and Assurbanipal, of course, you now have me wondering why it didn't work out for you. And Mark, I'm sure you do understand--it's a strange blend of surrender, sadness, optimism, sliver of anger, and topped with an appreciation that I have access to meds.

Nice limerick!

I do think it is usually Truvada once and Isentress twice a day.
 

Why they weren't for me?  Well, Truvada it was a bone health issue.  HIV and aging both weaken the bones and the viread in Truvada can be an additional hit when you first start... so I wound up with osteoporosis and a broken bone.  You might want to talk to your doctor about how to monitor your bone health and whether extra vitamin D and calcium would be a good idea.

Isentress, there's a few percent who get muscle problems and lab abnomalities and I drew the lucky straw.  So far, I think I'm the only one on the forums to have this particular problem, so wouldn't put a lot of emphasis on it -- just tell your doctor if you have any unusual achiness and s/he can do a special blood test for CPK levels to see if that is the issue.

But again, not to worry, most people love this combo and any problems seem to take a while to matter.   Just be present and take notes on how you feel and talk to the doctor if there is anything unusual.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on June 08, 2010, 02:47:47 pm
  You might want to talk to your doctor about how to monitor your bone health and whether extra vitamin D and calcium would be a good idea.
 

That's an excellent suggestion. Apparently all ARVs but also HIV itself affect bone density. Truvada in particular has been linked to bone density loss. According to Dr. Gallant this happens within the first few months of taking meds and then it levels off.

I think it's a great idea to take a calcium/vitamin D supplement (the D helps calcium absorb better which is why they package them together, many people have low D levels too). I eat an overall good diet so I don't take mine daily. I take it about 3-4 times a week

A good friend with HIV who is doing great on his meds (Reyataz/Epzicom/Norvir) recently had a very slight fall, it really was minor and yet he broke a bone. He's allergic to dairy products and doesn't take calcium supplements so it would not be a stretch to assume it could have been due to low calcium and HIV and HIV meds leading to some bone density loss.

It's also a good idea to take the HIV meds alone and take any supplements a few hours apart.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Assurbanipal on June 08, 2010, 02:53:39 pm
A good friend with HIV who is doing great on his meds (Reyataz/Epzicom/Norvir) recently had a very slight fall, it really was minor and yet he broke a bone. He's allergic to dairy products and doesn't take calcium supplements so it would not be a stretch to assume it could have been due to low calcium and HIV and HIV meds leading to some bone density loss.

Em -- I seem to recall that you are a fan of the occasional ice cream?  Note that even if you love dairy products you can still get osteoporosis from HIV (I'm a case in point).  So you might want to talk to the doc about bone health regardless of your diet.

It's also a good idea to take the HIV meds alone and take any supplements a few hours apart.

Inchling
Do you have something to back this up?  I thought in a prior thread there was no real backup for this?  And there's a lot to be said for keeping it as simple as you can.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: kevykev110 on June 08, 2010, 03:28:13 pm
Go for it. I cant speak for truvada since i am taking atripla and im only on my 2nd day. I cant deal with the double dose. So atripla works for me. The hardest thing was swallowing that first pill. Once u ingest that first pill u good to go.

Good luck!.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Miss Philicia on June 08, 2010, 03:36:31 pm


It's also a good idea to take the HIV meds alone and take any supplements a few hours apart.

I've had five HIV/ID doctors over 17 years and not one has said this.  Surely this is internet BS.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on June 08, 2010, 03:39:35 pm

I cant speak for truvada since i am taking atripla


Atripla is composed of 2/3 Truvada. Sustiva forms the other 1/3.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Matty the Damned on June 08, 2010, 03:50:10 pm
Good luck Em!

MtD
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on June 08, 2010, 03:54:29 pm
Inchling
Do you have something to back this up?  I thought in a prior thread there was no real backup for this?  And there's a lot to be said for keeping it as simple as you can.

There are so many possible interactions between so many different types of drugs and supplements that the suggestion to take them a couple of hours apart does simplify matters for anyone taking supplements along with Rx medications. It removes the guessing game of what might possibly interact with what.

The suggestion was made to me by a pharmacist and I've taken it to HAART (pun intended) because it just made sense to me. I also came across a doctor online recommending it and will try to find it and link it.

Here are some examples off the top of my head because I can't Google and link right now but feel free to Google these and you'll find backup:


*Calcium has been shown to interact with several other agents such as thyroid meds.

*Iron has been shown to have significant interactions with several Rx meds (thyroid, ACE inhibitors, tetracycline, etc).

*Norvir has been shown to boost not only HIV drugs but other meds and supplements as well.

*Fiber in supplement form and in certain amounts when taken alongside meds has been shown to possibly affect absorption of meds in general.

*vitamin E interacts with many Rx meds, including AZT

Precisely because not enough has been studied it's actually easier and safer to just take supplements separate from Rx meds.

I take my HIV meds in the morning and at night (Isentress is twice a day) so I take my supplements during lunch. It's simple and I don't worry about possible absorption issues or side effects.

I think madbrain's recent issues with side effects when he started HIV meds arose from timing the HIV meds along with his other Rx meds and supplements (some interactions were happening that caused him side effects and it was difficult to pin it down). He was able to solve it by taking Isentress/Truvada once a day, with his doctor's blessing. This allowed him to space out the pill popping accordingly.

The excerpt below refers to iron supplements only but it makes sense to me to do the same with all supplements, taking them a couple hours apart from the Rx meds:

Iron may interfere with the absorption of many different medications. For this reason, it is best to take iron supplements at least 2 hours before or 2 hours after taking medications.

LINK:

http://www.umm.edu/altmed/articles/iron-000964.htm
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Miss Philicia on June 08, 2010, 05:45:04 pm
jebus, pass the sedatives
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Hellraiser on June 08, 2010, 07:57:28 pm
jebus, pass the sedatives

This thread hasn't put you to sleep all by itself?
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 08, 2010, 11:34:23 pm
Well, perhaps it will put me to sleep...shortly. Slightly funny feeling in the head and my ears are ringing--a significant loud high pitch. Anyone's ears ring with Isentress or Truvada?

And yes, Inch, it's Isentress 2x Truvada 1x. You were right.

Thanks for the well wishing, and the supplements advice--particularly of interest as the last scan I had (pre-dx) showed osteopenia--so it's something I'll figure out next lest I break a bone while opening a pill bottle. I will definitely look into the combination of D and calcium.

Managed to let some transitional saline loose after picking up my stash from the pharmacist. Loaded the pill box and lucky timing, an old friend called. So, we were on the phone as 9 arrived and I downed my first dose. Here's hoping we're a good match for each other.



Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on June 08, 2010, 11:49:34 pm


Managed to let some transitional saline loose after picking up my stash from the pharmacist. Loaded the pill box and lucky timing, an old friend called. So, we were on the phone as 9 arrived and I downed my first dose. Here's hoping we're a good match for each other.


So, Em, you took one Isentress and one Truvada as your first dose, right?

That means you're doing your once a day Truvada dose as part of your PM dose?
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 12:11:13 am
Yes. Got a suggestion to do otherwise? Better to do the Truvada in the a.m.?
The pharmacist said it was my choice. If you suggest Truvada a.m. and can tell me why, I'm interested in learning more. Thanks!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on June 09, 2010, 12:17:52 am
Yes. Got a suggestion to do otherwise? Better to do the Truvada in the a.m.?
The pharmacist said it was my choice. If you suggest Truvada a.m. and can tell me why, I'm interested in learning more. Thanks!

If you already took it then it's fine.

I had mentioned above that the pharmacist recommended that I take the Truvada as part of the AM dose b/c he said some people have sleep issues taking it at night. I'm not sure how prevalent that particular side effect is so it's hard to say.

Chances are it will be fine but if you end up having sleep issues then you might want to switch to Truvada in the AM.

It's important that your first dose have both meds in it.

Keep us posted on your progress ;)

hugs
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 07:04:34 am
Thanks much, Inch. Sorry I missed the advice to take Truvada in the a.m. If sleep is problematic, then I'll have to switch. I got to sleep around midnight, but was awakened shortly after 5 by nausea, which persisted until two sessions of dry heaves, about an hour apart, alleviated the discomfort. Ick. Of course I hope this phase passes quickly. Ears still ringing...maybe I'm picking up an intergalactic transmission. Over.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: HowYouDoin on June 09, 2010, 08:31:19 am
Hi Em,

I am sorry to hear you have had nausea and ringing of the ears on your for couple of days on meds. I had that experience as well but it lasted a day but it was on Kaletra/Truvada. Are you having Diarrhea? I have found to sleep less on Isentress on my first week. When the ringing on ears occurred to me I was a little concerned but immediately kept myself busy and paid no mind to it. Nausea usually occurred for me when I didn't eat a nice portion meal.

I take my Truvada in the A.M. along with my other pill and have had no issues. I take my second Isentress pill right b4 I go to bed but haven't had my regular normal sleep so I am going to try to take it a couple of hours before I go to bed to see if my sleeping pattern improves.

Keep us posted.

AL
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: veritas on June 09, 2010, 09:16:17 am

Em,

Everything you wanted to know about Isentress is here:

http://www.ema.europa.eu/humandocs/PDFs/EPAR/isentress/emea-combined-h860en.pdf (scroll down)

Dizziness can be a side effect. Your body has to get use to the medication. Hopefully, these things should resolve themselves. Good idea to take the meds a couple of hours before going to bed.

Hang in!

v
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 12:14:59 pm
Thank you, all. This sucks, thus far, as in sucks everything out of my stomach. Can't fathom eating, but imagine a year when I will. Head is pounding from the heave-o-matic action. Will read the europa link, v, thanks. I took the first dose at 9p.m. and second dose today 9 a.m. 1/2 hour after being sick again. Ick. Just noticed the time stamp on this post--it's actually 12:15 where I am.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on June 09, 2010, 12:25:47 pm
I assume since you eat ice cream that you aren't lactose intolerant but wanted to point this out just in case (although they mention "galactose" intolerant and say nothing about "lactose" intolerant):

ISENTRESS contains lactose. Patients with rare hereditary problems of galactose intolerance, the
Lapp lactase deficiency or glucose-galactose malabsorption should not take this medicine.

It's from v's link.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 12:43:28 pm
Thanks, Inch. Not that I'm aware of. I'm heading to that link momentarily. Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: skeebo1969 on June 09, 2010, 12:50:04 pm

   Em,

      So sorry I missed this thread!!  If I was near ya I'd give you a big hug sweet girl.  You've always been one of my favorite people here and I always thought you were one of those other people that didn't have to take meds, sorry things went South for you though.

      I don't really have any advice on the combo, I sure wish I did.  If this combo does not work out for you just know there are other options out there that might be a better fit.  Take for instance when I switched in January from Atripla to Truvada and Viramune, I am a totally different person now.   I was always tired and suffered from constant nausea, and now I have absolutely no physical side effects.  

      Anyways, sorry for the quick post...  I gotta run!!

      (((HUGS)))

     Thomas
    
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Billy B on June 09, 2010, 01:18:25 pm
Thank you, all. This sucks, thus far, as in sucks everything out of my stomach. Can't fathom eating, but imagine a year when I will. Head is pounding from the heave-o-matic action. Will read the europa link, v, thanks. I took the first dose at 9p.m. and second dose today 9 a.m. 1/2 hour after being sick again. Ick. Just noticed the time stamp on this post--it's actually 12:15 where I am.


emeraldize- Are you "lactose" intolerant" by chance? I am and have not had dairy for many years because of stomach problems. My IDS warned me about milk products causing gas, nausea and bloating when taking meds. I take my meds (I&T) when I first get up with a glass of water which speeds them out of my stomach and into my gut. I eat after I SS&S. I take the evening dose when I am doing charts, so I usually take it water or apple juice but again it's on an empty stomach. I know you are aware that the inserts say that (I&T) can be taken with or with out food but I have had great success with consumption on an empty stomach.
Peace,
Billy
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 01:27:50 pm
  Em,

      So sorry I missed this thread!!  If I was near ya I'd give you a big hug sweet girl.  You've always been one of my favorite people here and I always thought you were one of those other people that didn't have to take meds, sorry things went South for you though.

      I don't really have any advice on the combo, I sure wish I did.  If this combo does not work out for you just know there are other options out there that might be a better fit.  Take for instance when I switched in January from Atripla to Truvada and Viramune, I am a totally different person now.   I was always tired and suffered from constant nausea, and now I have absolutely no physical side effects.  

      Anyways, sorry for the quick post...  I gotta run!!

      (((HUGS)))

     Thomas
    

Hey, thanks Skeebo. I could use a hug and a lessening of heaves. I hope this phase passes quickly. I probably read as if weakling. Thanks for posting. Hugs back. E
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 01:31:34 pm

emeraldize- Are you "lactose" intolerant" by chance? I am and have not had dairy for many years because of stomach problems. My IDS warned me about milk products causing gas, nausea and bloating when taking meds. I take my meds (I&T) when I first get up with a glass of water which speeds them out of my stomach and into my gut. I eat after I SS&S. I take the evening dose when I am doing charts, so I usually take it water or apple juice but again it's on an empty stomach. I know you are aware that the inserts say that (I&T) can be taken with or with out food but I have had great success with consumption on an empty stomach.
Peace,
Billy
Hi Billy,
If I am I am unaware of it and I think, hope, I would at this late year in life. I had some soup and couple of cookies yesterday, but haven't had dairy products recently at all. I haven't had anything to eat today as I'm too nauseous. Thanks for the tips and I look forward to implementing them. If you have any suggestions for calming the gut, I'm game.
Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on June 09, 2010, 01:49:49 pm

I probably read as if weakling.


You don't. You read as someone whose body is having a difficult adjustment period. It happens to some people. Sorry it's happening to you. Hope you feel better soon.

I think I've read here that some people experience a bit of nausea relief by cutting slices from a lemon and sniffing them. Try it if you have one in the fridge. Ginger tea can help as well.

Hugs,
Ann
xxx
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Billy B on June 09, 2010, 01:54:59 pm
Ann is correct about the Ginger Tea. I have a friend on chemo and she uses it along with a little "Weed" to calm her rolling gut.
Peace,
Billy
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 02:27:21 pm
Thanks Ann and Billy. I have neither on deck and no one I can enlist for such an errand. It will have to wait. I know ginger has this calming quality. I have a ginger root in the fridge. I'll investigate making my own brew with a few slices. Will let you know the outcome, er, result, reads better.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on June 09, 2010, 02:30:57 pm
You can grate the ginger root to make tea - grating is much better than slicing. Brew it up and put it through a fine-mesh sieve before drinking. Hope it helps!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 02:38:14 pm
Thanks Ann. I was chirping to fellow nausea bird Hippie Lady. So, meanwhile, you've saved me a trip to the Google Tea Making Store. Going to do it. Now.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: HippieLady on June 09, 2010, 02:43:28 pm
I hope you feel better.  Let me know how that ginger tea works out for you...I may have to get some for myself.

This nausea and vomiting really sucks!

~Hippie
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on June 09, 2010, 02:54:32 pm
Em, sorry, but I forgot to mention - peel the ginger first. The skin can make it a bit bitter. Hope you see this before you brew!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 03:36:58 pm
Hi Ann and HL: Tea seems to be working. Had some toast, too, and a chat with the doc. We're rescheduling this initiation for a time when I can have a long weekend. Now that I know a little bit, I can enlist help, have a clear schedule and adjust---I hope as the profile of the regimen still appeals. This is being monitored, so I don't want anyone reading this to think it's optimal or my idea.

So no more tales of wailing and woofing near-term. My thanks to all of you. I'll re-enliven the thread when the new start date is determined. Em

BTW: Ann, I grated the ginger and put it in a metal mesh tea bob...worked well!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on June 09, 2010, 03:43:46 pm
Glad to hear it worked, Em. Nothing worse than nausea and puking. (I had the winter vomiting virus a few times this winter - ~shudder~ - so I totally sympathise!)

Also glad to hear you got your doc's advice and you can try again when it's a more convenient time for you. 
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on June 09, 2010, 05:35:11 pm
Thank you, Ann.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on October 16, 2010, 05:35:08 pm
With Isentress curtains you can roll right down, in case there's a change in the wea--ther...


Despite the fact that I've not posted in this thread for at least sixty days, I'm using it for simplicity's sake and in case anyone were to search for Isentress use, came up with this thread and wondered what ever happened.

I did restart the regimen last week and must report Inchling and JK were quite helpful in PMs about a variety of things. I'm most thankful for their input. Inchling's experiences with Isentress and reading I did made me feel more and more certain that I had an very unusual first time.

Things are going quite well thus far. I do take an anti-nausea pill in the morning because I was nauseous Day 2 and wanted to get to work. I should clarify I now think I had a bug when I first tried in June. I wanted to blame the med, but it was just terrifically uncanny and crappy timing.

In a few weeks I'll have a blood draw and we'll see how things are going. Except for feeling just slightly odd the first couple of days, the only thing I've noticed is needing to zonk out for a nap at times, but that could be anything from change of weather to sleep cycle to aging, etc.

I plan to drop the anti-nausea med soon to see how things go.  Meanwhile, ...ain't no finer rig I'm a-thinkin'!

Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Ann on October 17, 2010, 02:47:29 am
Good to hear it's going better for you this time around, Em. Keep us posted.

Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on October 17, 2010, 11:40:11 am
Thanks, Ann. I will.
Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: jkinatl2 on October 17, 2010, 03:45:42 pm
yay! i am glad to have been of some help... but am even gladder that you are doing okay. I personally have little if any excuse not to be adherent on my combo. and at least oen other Jonathan in the multiverse is, indeed, that disciplined, or at least is far less messed up int he head than me.

Isentress headaches suck, but for me, an advil and/or a good nap usually get rid of/wait them out. I just have to be careful not to take meds within an hour or so of a known stressful activity. In Atlanta, this includes driving or shopping.

The runs is a rock and hard place situation. If I don't take my meds, I get diarrhea from the HIV thriving in my gut. When I do take meds, the Norvir makes for an unwelcome friend for a few hours (at least). So ya know, damned if you do ...

This site is incredible. It really does save lives and make it possible to have a healthy HIV existence for a lot of people. That's worth the hassle, easily.

Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on October 18, 2010, 09:49:05 am
So great to hear how things are progressing, Em!

Please continue to keep us posted (not indefinitely of course, but until you're more sure it's "the one.")

Are you taking it twice a day or did you decide to go for once a day dosing?

jkinatl2: How distressing that you're getting headaches. In my particular case, as I think I mentioned somewhere else, I was getting horrible headaches before starting meds and once I started Isentress /Truvada the headaches completely went away. I like to think teh virus was frolicking away in my brain until it was stopped in its tracks.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on October 18, 2010, 10:56:35 am
Thanks so much, Inchling.

I'm being dutiful with the dosing box and going with twice-a-day.  You know for the first time, since diagnosis, I'm looking forward to seeing my next set of numbers.

Does anyone know how rapidly and to what extent CD4 counts can rise? That's my next literature search pursuit, but if anyone can weigh in on this, I would appreciate it.

Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Miss Philicia on October 18, 2010, 11:20:01 am

Does anyone know how rapidly and to what extent CD4 counts can rise? That's my next literature search pursuit, but if anyone can weigh in on this, I would appreciate it.

Em

When I switched to Isentress my CD4 count went up about 150 (in 1 month), and then another 200 (3 months later), and my % during that same four month period up 5% which is a very healthy increase in that small amount of time.

However, compared to others I know (locally, not on these forums) I had a larger, quicker increase than most.

edit: Oh, but of course I wasn't treatment naive either so not sure how much my little tale is worth for you
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on October 18, 2010, 11:22:53 am
WOW! Strange thing is my percentage has been holding high (30%) while CD was trending down. Thanks so much for posting this---I can only hope. Your addendum about treatment naivete might be something worth asking the doc. I hadn't thought of that...duh, cuz I'm naive!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Inchlingblue on October 18, 2010, 11:27:24 am


Does anyone know how rapidly and to what extent CD4 counts can rise? That's my next literature search pursuit, but if anyone can weigh in on this, I would appreciate it.


I think that can vary wildly.

In my case I started when I was at about 350. The next reading about 2 weeks later, I was in the 500s and undetectable (I started with a low viral load of about 9K-12K).

The CD4s slowly kept rising and about one year later they were in the 800s.

Isentress (and integrase inhibitors in general) has been shown to be among the fastest meds at lowering viral load.

Since it inhibits integrase, it doesn't allow the virus to integrate into DNA to begin with.

On a separate but related (and hopefully interesting) note, there are scientists working on a cure using peptides that do the opposite of Isentress, i.e. boost viral integration, causing a kind of "overload" in which the cell dies taking the virus with it.

LINK:

http://forums.poz.com/index.php?topic=34037.0
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on October 18, 2010, 05:27:58 pm
I can imagine the variance is great, but just wondered if there's any sort of average. Between you and Miss P, the average is 150 in a month or less. I would be quite content with that. I wish I knew what my pre-dx CD4 count was -- as I've always wondered if it was always sort of low-ish. My WBC is always well below normal, but it's "our family's normal" and was so before dx also.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on October 28, 2010, 05:11:54 pm
I posted something to Skeebo's thread about his new numbers and realized I should update this thread with my experience to date with the Isentress.

Since starting meds, I've not felt this good, this energetic, this productive in MANY years. And the only thing that changed was meds. If I'd known I would feel this good, I'd have gone on meds earlier. Now, once the numbers come in, we'll see if it is my imagination.

Em
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: surf18 on October 28, 2010, 10:24:37 pm
i actually received an email from the rapid ceo , one doing a peptide study. the peptide thing is fascinating and maybe the key to the end of this as well. he told me to sit tight and with patience comes preserverance.
i had asked him to get me in his study.
the peptides look to be another non toxic treatment....
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on November 16, 2010, 05:20:04 pm
Update: got labs today and my VL is undetectable and CD4 have increased by 10---all in 30 days.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: ElZorro on November 16, 2010, 05:23:34 pm
Update: got labs today and my VL is undetectable and CD4 have increased by 10---all in 30 days.

Congrats, Em! I'm very happy for you!   ;)
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: Assurbanipal on November 16, 2010, 06:45:11 pm
Congratulations on the great results!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on November 16, 2010, 07:17:57 pm
Thanks El Zorro and Assurbanipal!!
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: emeraldize on November 23, 2010, 05:45:55 pm
One new item, turns out my percentage went from 26% to 34% . Thanksgiving time, for sure.
Title: Re: Made the Decision Today--Meds Start Tomorrow
Post by: ElZorro on November 23, 2010, 06:10:54 pm
Yea!  ;)