POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: MiamiRene on June 07, 2008, 04:41:50 am
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I'm feeling a little overwhelmed with so much info, today was my first day starting meds and my first post, never have in the past. I decided to take part in a research study taking truvada once a day and viramune once a day for the first 2 weeks. After the second week instead of taking the viramune 2x a day as would be the normal process, I will begin taking the double dosage of viramune in one pill. I'm just wondering was this a good idea especially since it's my first time taking meds? Also what has been the side effects any of you have been on the regular combo(1 truvada & 2 viramune a day) ? My cd4 counts were 174 & vl was 15k... Thanx for sharing any thoughts... Rene :)
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This is an unnecessary study. Unless you need to be in the study to access treatment, or want to be in it for the experience, the advantage to you is nil. Viramune 1 x day will work for most people, we already know this.
Hello and welcome btw :)
- matt
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Hi Rene,
Welcome to the forums. I am taking 1truvada and 2 viramune combo. I started them on 18apr08. and have experienced no side effects I can attribute to the combo.
It is difficult at first as there seems to be a compulsion to inform that is always followed by the statement "I know this is all overwhelming, but eventually it will be clear". And this is becoming the case with me.
Instead of trying to take everything all in at once and short circuiting my brain, I am now trying to concentrate on one thing until I get an understanding of it and then move on to learning something else.
Ex: I used to sit and listen to what they were throwing at me until it started just going in one ear and out the other. Then, I started writing it down. I started with keeping track of my blood pressure, CD4, and VL numbers....
When they saw me writing, they would slow down and even write some info for me. I guess, dealing with many patients in varying stages of treatment, they tend to think that we are all on the same page sometimes.
My taking out pen and paper, seems to be a signal to them to ...hey slow down...I'm new to this...
Matt,
I have never heard about only needing one viramune a day. Where would I learn more about this so I can bring it up to the Doc?
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Hello Rene,
http://www.aidsmeds.com/articles/hiv_nevirapine_viramune_2151_13975.shtml
Ray
Ps: I take my viramune twice a day. I tried at one time per doctors instructions to take both pills together, but it didn't work right for me. Did it that way for about a month, and then went back to one viramune every 12 hours.
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Ray,
Thank you for the link. I too, take my viramune every 12 hours. If I read the info correctly, though once a day if effective, it is to my advantage to take the twice a day to arrive at a non detectable VL faster?
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Just to be clear
Viramune is prescribed as 2 tablets a day after the 1st two weeks. Usually this is taken in two separate doses. But sometimes people take it all in one go, hence me saying "Viramune 1 x day" -- I did not mean just 1 tablet!
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This is an unnecessary study. Unless you need to be in the study to access treatment, or want to be in it for the experience, the advantage to you is nil. Viramune 1 x day will work for most people, we already know this.
Hello and welcome btw :)
- matt
I understand, thanks for the clarification.
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I think what MiamiRene is referring to is a new Extended-Release Viramune once-daily pill, not exactly a double dosage. At least, that is the clinical trial I am participating in starting next week. My doc said it is slowly released over a 24 hour period.
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Thanx you Darwin for explaining it better, what I meant was a new study taking Extended-Release Viramune once-daily pill that is released over 24hrs and not a double dosage, 2 pills at one time.
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Hello Rene,
This is from the drug section-( From this site) Just a little more clarification :
"What is known about Viramune?
Taking Viramune is a two-step process. For the first two weeks (14 days) of treatment, the dose is one 200mg tablet once a day. Two weeks after starting treatment, the dose of Viramune is increased to one 200mg tablet twice a day. Following this schedule—which you should do under your doctor's guidance—can reduce the chance of developing a rash or other side effects.
It might be possible to take Viramune only once a day. This would involving taking one 200mg tablet, once a day, for two weeks, followed by two 200mg tablets, also once a day, thereafter. Researchers are now testing the safety and effectiveness of this option—it has not yet recommended by any experts and has not yet been evaluated by the U.S. Food and Drug Administration"
Ray
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a new study taking Extended-Release Viramune once-daily pill that is released over 24hrs
We'll have to stay in touch since we're doing the same trial :) I am doing intake next week and hopeful will start dosing soon after. How fast did the study's lab get your genotype done? I am hoping it doesn't take a month.
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Darwin,
it took about 3 weeks to have everything completed and cleared to start. Definitely lets keep in touch and compare how things go between us. My next doc appt is on June 20th.
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Hey Rene and Darwin --
I'm enrolled in the same clinical trial as you, so we'll all have to compare notes. I'm waiting for my genotype results to come back (they're supposed to be back today, exactly three weeks after blood was drawn). I don't have great insurance coverage -- $1,500 annual cap on prescription coverage -- so having the costs of my meds covered for the first year (and potentially for three years) was a huge incentive for me to participate. But I was drawn to Viramune based on everything I read about it. Let's hope it works well for all of us!
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Very cool, Nash! We'll all have to stay in touch!
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hey Darwin seems likes a group is starting here lol, welcome Nash. Hopefully it will all work out for all of us... ::)
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MR and Dar,
Thanks for doing the study! This was my last combo in 2005 before going off meds, and I had tolerated it well for over a year (first as Viramune+Viread). Just watch the liver enzymes.
Cheers,
David
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Hello to all, I am part of the same study in Germany, as my Doc explain to my,
most people take the two Viramune pills at one of course that is not suggested neither from Boehringer Ingelheim -the producing company- nor from the Doctors.
So they do this study to find out if taking on pill per day with 400mg is better than taking two per day 200mg per pill . Until now I have no side effects 3 weeks after I started.
I did took part because I would have , in the begging at least / better care, I do something very small to help in the developing of drugs and my doctor is greatfull.
The financial aspect is nonexisting because in Germany you take your meds for almost free! I Know that's not the case in the states and with my financial status having been living in the states I would never been able to pay for meds.
take care
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:) Just want to say that, as part of this clinical trial, I started Truvada and Viramune last Tuesday, and have had absolutely no problems thus far. I'm currently taking only a half dose of Viramune, as the dosing guidelines recommend, and I won't be on a full dose until next Tuesday. But so far, so good. Given the minimal side effects of Viramune, I'm not sure why it's not considered as a first line treatment more often. I'll keep y'all posted on how it goes as I go up to the full dosage. Cheers!
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Argh - I failed to get on this study. I don't know why, but I had a sudden period of health. My VL dropped to either undetectable or 400VL naturally! No meds. The study requires 1,000VL at least.
I seriously was trying to think of ways to gain an additional 600VL. Have promiscuous sex? Share some needles? Become blood brothers with the local AIDS support group? *jk*
Alas, in the end, I could not get even 1,000VL. The company was nice enough to retest me thrice, but it wasn't enough. So now I gotta go to plan B for my meds.
Good luck in the clinical trial, everyone!
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got my new stats today and the meds are working so far... good update my viral load went down from 30,500 to 305 and my cd4 went up from 133 to 240 so good improvement and have no side effects from the meds at all feeling great. This was with only 2 weeks into the study & only the hlaf dosage of the viramune my next results with full dosage get back in another 2weeks, will let you guys know how things are. Anyone getting any results in who are on the same study ? let me know & stay in touch. ;)
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Congrats, Rene! Looking forward to even better numbers next time!
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Hey Rene,
Congrats on your latest numbers, and your timing of your post was perfect (for me)
I just had my screening interview today for the same study and barring a miraculous rise in numbers should be getting my first dosages at the end of this month.
Cheers!
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I'm now almost a month into this study, and I'm delighted with the way things are going. After the two week phase-in period (during which I took only a half dose of Viramune), my viral load fell from 9,030 to 133, and my CD4 rose from 166 to 272. And no side effects whatsoever. None. I go in tomorrow to get my four-week labs drawn, and I just hope the positive trends continue. This has been a great combo for me so far, and I encourage others to consider it as well. Cheers!
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I just got the word that I'm undetectable, just one short month after I started participating in this Viramune + Truvada clinical trial. That's the good news. The bad news is that my CD4 count (which had risen from 166 to 272 after the first two weeks on the combo) actually dropped to 217 after four weeks of treatment. I admit, however, that, immediately before my most recent labs were drawn, I spent 10 days on a booze-filled, workout-free, sleep-deprived Atlantis Cruise in Europe, so perhaps that has something to do with my CD4's going down a bit. I'm just hoping that they start heading back up in the right direction when I go back in in a couple of weeks.
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Well I got my new labs last week the good news is that my VL has dropped to 84, but the not so great news is that my CD4's dropped aswell after going up just like you Nashvegas. My new CD4 count went down from 240 to 179, so I am a little worried. My doc told me that if the VL is still going down I shouldn't worry too much but I am and not only b/c my cd count went down again but 2 days after getting those results the doc calls me and tells me I need to go into the office to do some labs again that something in my blood is elevated. I don't know what exactly yet but I will find out tomorrow Tuesday when I see the doc and he explains it all to me. I will keep you guys informed, trying to hope for the best here ..... :-\
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Hey Rene --
I certainly know how you feel. But hang in there, and hopefully your CD4's will start rising again soon. I just had blood drawn for my six-weeks labs, so I'll know in a couple of days whether my t-cells are on an upward trend again. I'll keep you posted.
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So I went to the doctor and have new results not really anything to worry about, I had VERY high ck levels in my blood but we figured out it was most likely caused by working out my muscles. I had just recently started working out that weekend before getting my labs and my muscles were extremely sore for a couple days, which caused my ck levels to rise sharply so everything seems to be ok now. Also my stats changed my with the new labs I'm now at CD4's @ 239 and my VL @ 100 which is a slight rise from my preveious VL of 80. Other then these changes my body feels really great & I have no side effects so hopefully no third eye will grow soon, lol. :o ;D
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Uhm. Miami & Nash, please welcome CLT to the party....It's a three some! :D
Got my results yesterday and I qualified for the study and took my first Viramune/Truvada.
Uhm. Woo Hoo? ::)
Anyway, Glad to have this thread to share experiences while on the study and feedback.
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Oooh! I LOVE threesomes!!!! Sounds hot. ;)
I'll be crossing my fingers for you!
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I just got my 6 week CD4's back, and they're basically where they were two weeks ago. I'm now at 220. So it looks like both Rene and I got a nice initial bump up after the first two weeks, but then we settled back down a bit lower (though still higher than the 166 count I started with). I guess it may take a while to get those suckers up!
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Got my viral load numbers back, and I'm no longer uhndetectable. :( My viral load is now 92, after being less than 48 two weeks ago. Now I'm starting to get worried....
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Hey Nash,
I wouldn't worry too much about the VL blip at this time. It is not uncommon, nor is the VL number you cite particularly worrisome.
Remember that this is a process and it may take your body a while. One good thing however about being in the study is the very frequent blood labs that we done in the beginning to monitor us.
Let's see what happens on the next round.
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Welcome Iggy! :-* & Hello Nash, I wouldn't worry too much about your VL ur still pretty low like Iggy said it takes a while for our bodies to get comfortable with these meds so just give it some time and lets see where it takes us. ;)
Are either of you taking any vitamins if so what?
I know they do help just like working out, maintaining a positive attitude(no pun intended, lol) , keeping a healthy diet and avoiding avoiding alcohol or drugs is very important. Alcohol or illegal drugs causes your body to have many free radicals and HIV just thrives on that so if ur doing any of those things and ur poz its something that we should all stop immediately.
In any case wishing you both well stay in touch blood brothers.... lol ;D
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Are either of you taking any vitamins if so what?
I know they do help just like working out, maintaining a positive attitude(no pun intended, lol) , keeping a healthy diet and avoiding avoiding alcohol or drugs is very important. Alcohol or illegal drugs causes your body to have many free radicals and HIV just thrives on that so if ur doing any of those things and ur poz its something that we should all stop immediately.
I take a generic Costco brand (Kirkland Daily MultiVitamin Pack) and have always prior and since infectioon believed in the importance of them.
It's funny that you bring up alcohol as I had my first sort of ancillary side effect from the meds... I've learned the hard way that my alcohol tolerance has been reduced and my stomach is a little more tempermental after some mimosas at Sunday Brunch and a few scotch and sodas that evening. ::)
Very stupid, I know, but now I know first hand while one is strongly advised to watch the alcohol intake when starting meds.
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Great news. Got my 6 week labs back, and everything looks great. I'm undetectable again after a brief blip at week 4, and my CD4 count is up from 220 to 280. And still no negative side effects. Whew!
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Just updating on this thread that I'll be starting this morning the next phase of the trial with the twice a day Viramune dosages.
I've linked the information from another thread below, but wanted to post here to help make this thread a sort of collection of all info on those in the study.
http://forums.poz.com/index.php?topic=22673.msg288495#msg288495
On that note, Miami & Nash - I hope you guys are doing well so far - and on that note, I just realized that with many of my friends have always called me Brooklyn, so between the three of us in the study, we got the cities covered.
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I guess I got the good stuff in regards to the extended release as my stomach went a major gurgling and I was quite happy to have stocked up on toilet paper at Costco recently. Was up till about 1:00 a.m. in the bathroom reading every magazine we had - and on a related note decided we needed to subscribe to the Journal of Foreign Affairs and the New Yorker.
Some small temporary flushing and flaking in the face that passed within a few hours too.
I know this is all a temporary period of my body getting used to the meds so not very concerned, but just wrote down to get another 24pack of Charmin on the shopping list just in case.
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Hey Iggy --
Sorry to hear about your intestinal distress. Hope it'll calm down for you soon. I have a feeling that I am NOT getting the extended-release formulation, as I didn't have any particlar reaction upon going on the full dose, but I guess only time will tell. Hope those numbers start looking good too!
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Hey Nash -
Thanks for the well wishes, and honestly it may not necessarily be that I have the extended so much as the my body immediately reacted to 200 mg twice a day.
Last night was better, though still some cramping issues, but I'm confident this is going to be a very temporary transitional effect that's not really worrisome.
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Just an update on my numbers:
6/20/08
(pre-entering Trial)
CD4: 293
VL: 116,000
%: 11
7/31/08
(Start of the Trial)
CD4: 266
VL: 20,200
% 14.2
9/08/08
(First results on meds)
CD4: 289
VL: 2,740
%: 14.7
In addition, they I just got the follow up results for the labs taken at my 9/08 appointment
CD4: 291
VL: 498
not sure the percentage - will find that out on Monday.
Also happy to report that any side effects I had were temporary and simply transitional with no side effects at all at this time.
Nash & Rene: any updates from you two?
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Hey Iggy -
Thanks for the update. Been wondering how you were doing on the combo!
It looks like things are heading in the right direction for you, though perhaps a bit more slowly than you would like. My last labs showed that I remained undetectable but that my t-cells were back down to 230. Of course, I'd prefer that my CD$ count would rise a bit faster, but at least I feel fine. No side effects at all, and my energy level has been generally good...
Keeps us posted!
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Hey Nash,
I'm actually quite thrilled with the results so far - I also got my percentage the other day and that rose to 17.2% (from a low of about 11%)
I'm sorry that your cd4's went down, but glad you remain undectable.
I no longer have any side effects either (just those two weeks of digestive type stuff). My energy (minus a 2 week harsh cold) has been good as well.
Thanks for feedback and update on how you are doing.
Keep well!
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Just posting my updates:
Cd4's: 302
%: 21.3
I won't have my VL till my next appointment, which has now finally moved to the monthly stage vs. the bi-monthly.
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That's quite a nice rise in the percent. Congratulations! Feels good to get above 20 doesn't it?
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I am also in this study and things are going pretty well with a few exceptions. I developed a rash which for now I have under control with Prednisone. My biggest issue is sleep. I would really appreciate any feed back if this is an issue for anyone on this trial and what you might have found to work that will not jeopardize remaining in the study group as they seem so particular about what you can and can not do. Getting the Prednisone approved was a major issue with my primary and specialist and he doesn't seem to really give it much thought, the lack of sleep. I on the other hand need some sleep, more than the four or five hours or less that I am getting. Running on empty here. Thank you in advance.
Pre-trial: Sept. 5: CD4: 71 / VL 150000
Sept 23: CD4: 210 / VL 1140
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Hey Ds4146,
Welcome to the trial thread!
I'm sorry for the delay in responding, but has the sleep issues continued? I haven't had sleep issues per se because of the V+T but I had in the past and my doctor does allow me ambien (6.5 mg). Perhpas Since I was already taking the ambien, I never noticed any sleep issues.
As far as the rash. I only had one day when my scalp was extremely sensitive, but happily a regular OTC conditioner worked for me.
I hope all is going well otherwise.
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Thank you for the welcome! Sleep is a little improved, and really I should not complain. The rash looks to be another issue but I will have a better vibe on that in the next couple of days as I come off the Prednisone and switch to Claritan which might help. What is new is that I constantly have this urge to go to the bathroom which is not like me, I could hold it hours before. I will discuss that with my Doctor when I see him next, which is every two weeks. I have posted my latest results, some good, some not so good, but I am hopeful the next will be better. Take care.
Pre-trial: Sept. 5: CD4: 71 / VL 150000
Sept 23: CD4: 210 / VL 1140
Oct 9: CD4: 157 / VL888
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Hey DS,
Glad to see you joined us in this thread and for posting your numbers.
Your CD4's were particularly low at the start of the trial (as was your VL high) so I am not surprise for the rapid rise followed by a small drop in CD4's right after you started treatment though your viral load continues to decrease which is a good sign.
Do you know your %'s? Also are you on the half dosage 200 mg or have you yet started the full 400 mg of Viramune?
Glad to see the improvement in the sleep and hoping the rash clears up. A long time physical technique advocated on the board is to use Neutrogena T-Gel extra strength shampoo as a body wash for regularly occurring dry and itchy areas. Hopefully though the claritin will help as well.
As for the bathroom issues - I noticed that myself for about 1-2 weeks when I switched from the 200 mg to 400 mg dosages of Viramune. It has long since passed though.
I'll be posting my latest results tomorrow which will be my second results as of the full 400 mg dosage.
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Thanks Iggy for the feedback. The rash is still there, it is actually like hives, welts if you will and sometimes they itch and sometimes they don't. They are itching now like crazy which is why I am here and posting at 4 in the morning. I have tried to monitor when they start itching in the hopes of seeing if I am doing something to trigger them on but have come up with zero. I have decided to see my doctor today if they don't improve, he doesn't seem to think it is an issue which is frustrating and I am thinking that he may not be able to see past the numbers and the study. I try to remind myself that the side affects could be worse but I guess I will not be winning an Oscar anytime soon.
Glad to hear that you are doing well and that your side affects have mostly passed. Looking forward to seeing your new numbers. Might be the inspiration I need to stick with this for a bit longer. Take care!
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Hey DS,
I think you are right in seeing your doctor today, and be clear with him that it is an issue to you. I honestly do not know what he can specifically do to alleviate the rash, but I do hope that it is something that will be controllable.
David Evans, from this site, has actually reported on the issue (http://www.poz.com/articles/HIV_Viramune_rash_761_13333.shtml) of the Viramune Rash that seems to be more common and an issue for those on the twice a day dosage of the med. I'm hoping he might be able to pipe in here with any new information (a fat NYC pigeon is going to whisper in his ear btw)
Please let us know what happens after the doctor visit.
Looking forward to seeing your new numbers. Might be the inspiration I need to stick with this for a bit longer.
My latest numbers aren't in the inspirational zone at first glance as they are basically the same as last month's numbers.
Test New #'s Previous #'s
CD4 308 302
% 21.1 21.3
VL 767 498
I was informed following the results that I shouldn't necessarily be worried about the slight rise in VL (I wasn't) though if my next labs come back with a continued rise that we will have to move up the date of my next labs and possibly recheck resistances as a precaution.
Frankly I recognize that my body already had a very healthy reaction to the meds thus far and that I think that the basic maintaining of the low VL in general (particularly after I had a 2-3 week nasty cold that knocked me out) is significant in itself.
I hope if I offer any inspiration with my numbers, it is my reaction to them: it is a process that requires adherence and patience and barring an unforeseen resistance issue that wasn't previously detected, I know I'll get my undetectable VL soon enough.
Hope that helps and please do let us know about the outcome of your doc appointment today.
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Dear DS -
I agree with Iggy that it's very good for you to see your doctor about the rash. We have a lot of information about rash with twice daily Viramune, a little bit of information about rash with once daily Viramune (using the standard 200mg pills), but no information (yet) about the extended release tablets--which is why they're studying it. Because using the older pills once daily results in higher blood levels of the drug, it is not surprising that they found that it was more likely to cause rash than a twice a day schedule. Logically, you'd assume that the extended release formulation would not result in higher blood levels and so shouldn't have more rash than twice-a-day, but we won't know for sure until the clinical trial results are reported.
The basic problem is that some of us have an allergic reaction to Viramune. In most cases, this shows up within a couple of weeks after starting the drug, and typically resolves within about three weeks. From the dates on your posts it sounds like it's been almost three weeks for you and that you are still having significant rash despite being on a pretty heavy duty drug like prednisone? >:(
We're not doctors and can't give out medical advice, but I would certainly make sure that you keep your doctor(s) apprised of what's going on with your rash and also make sure that they are monitoring your liver enzyme levels. There are a small percentage of people that simply can't tolerate Viramune and have to stop taking it. If you and your doctor make the decision together for you to stay on your regimen, there are some simple guidelines that can make the rash easier to tolerate until it goes away. These include:
-Take warm showers or baths, not hot ones - this can inflame the skin and the rash
-Instead, take warm baths with oatmeal
-Try to use a very gentle detergent to wash your skin, like non-scented baby soap or shampoo and don't use any kind of exfoliating scrubbers
-Use a hypoallergenic lotion to keep your skin hydrated (dryness and flaking can increase itchiness)
-Wear loose cotton clothing and stay away from tight artificial fibers
Keep us posted about how it's going.
Sincerely,
David :-*
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First of all, thank you Iggy and David for posting! Decided I had to walk away first and come back to reply as it felt so good to hear that, or read, that someone was out there. Okay enough of that and hopefully the point was made. It has been a long day, up since 4 when I posted to Iggy's response and traveling for work.
Did not get to talk to my Doctor today, I was not in town and he was not available to talk to and I being me did not want to make it seem like an emergency and said I would call back. At any rate I will try again tomorrow as I am closer.
I am feeling kind of stupid at this point because I am in the "blind study" and so I really don't know if I am getting the full dosage of viramune in the am or the pm or a split dosage to meet the mark. I "signed" up for this study after two years of being HIV positive and then falling to a CD of 74 because I wanted to do something, anything to help someone, somewhere down the road. With that said I so badly to not want to quit and feel that maybe with just a little more time all will clear up and I need to quit whining. Things could be worse. I stocked up on Charmin, still sitting there, LOL!
And yes Iggy, your post was inspirational and will get me through! In answer to your question about my %; 19.8. One concern, and I am watching it is the Alk Phos +d100 and the GST +d58, which I had to research what the +d meant, I am slow, and both my doctors brushed it off but means sufficient change but not out of range.
Okay, information overload! But thank you both again for your response and hope you well!