I stopped taking my meds friday

[initforlife]

Please forgive me when I type I may make tons of  mistakes.  I stopped talking my meds Friday, due to the fact I know my mental state is fucked up big time.  I didn't tell anyone till yesterday I had done this , He ask me to post in here so y'all can help me I did take my pill today because of him. I do not have a desire to die. I want to live but I want to live with a good mental state of mind not have to worry every time I'm alone I may do something to myself or someone else.  I took my meds today to give my dr a chance to fix me  my numbers are really good and have been since my first dx so I really didn't think it would hurt to stop   . here is my numbers dx was 850 and vl 7,000  at june 12 after one month on complera they were 999 and vl 63  I really never got a chance to think about going on meds my Dr wanted me to go on right away due to the fact I had some very swollen nyph nodes through out my body and at one time in jan they thought I had cancer . so with out questions I started meds  but I'm so bipolar now I can't take it I would prefer to go without meds then feel like this anymore and I don't want another pill to make me happy I hate taking meds and working really hard to get off some of my others anyway yell scream or what ever.  I just need help and have very little like no support other then here! sitting here crying my eyes out as I type

[zach]

(((init))) thank you

[leatherman]

I really never got a chance to think about going on meds my Dr wanted me to go on right away due to the fact I had some very swollen nyph nodes through out my body and at one time in jan they thought I had cancer . so with out questions I started meds

join the crowd! Nearly a third of people who find out they are HIV positive find out when they end up in a hospital. These people rarely if ever get a chance to "think about going on meds". Just like you, they are told to start taking meds right now, so they don't die. (it doesn't sound like that's how you were told to start meds, so try to take some consolation that your illness was caught in time to keep your from being in the hospital.) And don't give HIV too much credit. A whole lot of other people will end up in hospitals today and told they need to start heart, blood pressure, cholesterol, insulin, radiation, chemo, etc today so they don't die.

I would prefer to go without meds then feel like this anymore and I don't want another pill to make me happy I hate taking meds and working really hard to get off some of my others

meds are not your enemies. A lot of people take a lot of medications, and these medications help us be happier, be healthier, enjoy life, be active, etc. Why in the world would you want to "go without meds" if they meds keep you alive or make you feel better about yourself and life? Take some time to re-evaluate just why you think you "hate taking meds" and see if you can't turn that attitude around to be happy about how such little pills can create such great changes in your life.

hang in there, stay on your meds, and talk to your doctor about this issue. Your doctor should be able to help you understand how your meds help you, and also be able to point you to some mental health counseling so you work on having a better attitude about the meds

[Jeff G]

Thank you for trusting in us to be there for you ... you are not alone in what your going through . You have been through so much in so sort of time and I truly believe in my heart that you will heal from this and go on to better days ... I just know it and have faith in you that you will .

There are no magic words to make you feel better but I have seen it many many times on this forum where a little bit of support and a few kind words can make a huge difference .
I want you to know that you have a forum family here and we will not give up on you .

Big Hugs to you . 

[Dachshund]

I have had two poz friends die in the past five years for no other reason than they chose to not take their meds. They didn't have a death wish, just convoluted (and wrong) reasons for not taking meds. The first friend looked "fine" until he ended up in the hospital and died from Histoplasmosis. A disease that hadn't occurred or been diagnosed in our town for over ten years. My second friend died just over a year ago. I saw him just weeks before he ended up in the hospital still clinging to the notion that the drugs are worse than the disease. Unfortunately the disease proved him wrong.

Talk to your Dr and get some counseling.

[mecch]

initforlife -  Is this your reason?  Correct me if I got it wrong...

You are bi-polar, and you think the HIV medicine is making the bipolar mental anguish worse?  So you thought, stop the HIV med. Also - there is something about - you think you can avoid meds for the bipolarity, as long as you don't take HIV meds? 

Is that it?

It sounds to me like you need a good consultation between your psychiatrist and your HIV doctor.   I hardly know the answer as what the interactions might be, between the 2 sets of drugs, and your mind.   It really seems like you need experts on the issue..

Are you in mental health therapy?  If so, what does your therapist say on the matter? If not, why not? 

Maybe you did start before you were ready.  But, going off the medicine like that was a poor choice.  Anyhow, I see that you recognise that. Really the challenge is long-term solutions and compromises you can deal with.  You need help and treatment for 2 challenges - bipolar, and HIV.  NEITHER can be avoided, not in the long run...

Go to your doctor(s) and discuss all this and get a plan. 

Don't go lone cowboy on any of these decisions...

[Jeff G]

I think I read you are on Complera ... that's in the same class as efavirenz a component in Atripla that can cause depression and feelings of hopelessness and it can come on quick too . Please keep taking your meds but if your mental state does not improve its definitely worth looking into a med change, all things to consider when you see your doctor . 

[initforlife]

No I'm not bipolar  or wasn't until the hiv meds.. That's what I'm saying this is messing up my mind big time. I don't like it !  before Jan I was on nothing zip.. had a bad flu right after Christmas. ( which now I know it was when I got hiv)  was sick in bed for five days couldn't work couldn't walk had this god awful flu.  From that I ended up with a dvt(blood clot in leg) and 2 Pe( blood clots in both lungs) was admitted to hospital cat scan showed swollen lymph nodes ( so they thought I had cancer) no it was the hiv found out I was poz in march after my fwb found out he had it from being in hospital in feb with pcp? think that's what you call it anyway now im on blood sugar meds blood thinners high blood pressure and hiv. I hate meds  because I worked in health care for years and have seen what some of this crap does to people  I just don't want another pill to make me happy ,but I know I can't go on like this anymore either.  Thanks for listening  it does help  I know I'm a mess and Im sorry  I don't want to bring anyone else down really

[zach]

don't underestimate the psychological toll the dx has on you, thats the harder pill to swallow. completely unrelated to the meds

you can't fear the meds, that is counterproductive, they are the only thing that will keep you healthy and keep your immune system strong

hold fast, keep taking them, you'll work this out

an you're not bringing us down, we're trying to bring you up

[leatherman]

No I'm not bipolar  or wasn't until the hiv meds.. That's what I'm saying this is messing up my mind big time.

Ah ha! your mental issues could very well be a side effect of the hiv meds. This is not your fault; but a fault of this one kind of medication. Definitely call your doctor today, tell them the problem, and schedule an appointment ASAP. You probably just need a med change You don't need to suffer bad side effects like this when there are other medications (single pill a day and multiple pills a day regimes).

[mecch]

but I'm so bipolar now I can't take it I would prefer to go without meds then feel like this anymore and I don't want another pill to make me happy I hate taking meds and working really hard to get off some of my others anyway yell scream or what ever.  I just need help and have very little like no support other then here! sitting here crying my eyes out as I type

OK my mistake of understanding due to your casual use of the term bipolar.  Bipolar is a real diagnosis and I assumed since you are in health care you used it accurately.

Sounds like you need a simple med change as Leatherman says.  I didn't deal well with efavirenz, myself.  Much better after that was removed.  Good luck. 

[mecch]

As for hating the meds..... Don't hate HIV medicine.  I have seen nothing but wonders, among people recently infected and or recently diagnosed. I have also seen plenty of success stories of long-time infected with the newest medicines improving the quality of life immensely.

[Reggie]

Believe me your not alone with your decision and feelings and emotions. I'm almost a carbon copy, sure enough people replied to know stopping meds completely not good for the long term. Like you I'm having a difficult time with side effects but so many others have had the same problem and had it resolved, often with a change of meds. Something that ultimately have to do with our Doctors. But what a great support group of people we have here, many been through the exact same feelings. Here for you as well, thanks for the support you've shown me as well. Simply put I totally relate to what your feeling, and need to communicate with people who understand. Take care, thinking about you as I can see a lot of others here are as well.
Reggie

[Jmarksto]

  I don't want to bring anyone else down really

Hey Init,

First a big hug!  Please don't worry about bring anyone else down - we are here for you and you will be here for us when the time comes.

I think Jeff is right, it sounds like a switch off of Complera is in order.

You have been through allot in a short period of time - it is going to get better.

Sincerely,
JM

[initforlife]

Thanks Y'all I will be talking to my ID today and see about a med change , this has been going on off and on for about a month. I kept thinking it was meds then thought maybe not. I will keep trying but last Friday I can see now I was not even thinking straight.  Zach and his concern brought me back to clearer thinking I really didn't want to post here I didn't want to scare anyone with what is my side effect. but Y'all are my support I went to bed with a smile last night woke up with one this morning crying as I type this again. but I hope med change I will be me again!  I hope each and everyone on this site know how many lives you might be saving with people coming here about ready to give up and you have had kind words , hugs and just listen to them.  Y'all have a great day i'm off to help someone else today as that brings Joy to me to help others!

[Reggie]

Good to here Initforlife , makes us all stronger when here yours news!!

[wolfter]

There is another excellent thread that address Sustiva and potential issues with it.  If you read through it, you'll see that many of us have been exactly where you're at. 

Take care and best wishes

wolfie

http://forums.poz.com/index.php?topic=47901.100

[stuka]

Hi initforlife, I just saw your thread. It had me worried but looks like you are now consulting your doctor.

I hope it turns out that it was complera causing your issues and nothing else. They have many other choices available nowadays. However, even if its not due to complera please do not rule out other medications to help you with depression and/or anxiety. Stopping ARVs should NEVER be a consideration.

I might be wrong but I sense that you are wondering if you started the treatment too soon - especially, with your high CD4 count. I think you should get this out of your head. Starting ASAP (if you can afford to) is what the medical community is leaning towards.

Like you, I too was wondering if I should wait for bit longer to see if my CD4 counts would fluctuate. However, I happened to come across this article that pretty much nailed the decision for me, i.e. to start without delay.

http://www.aidsmeds.com/articles/hiv_ks_kaposis_1667_19428.shtml

Excerpt:Though the study did not explicitly look at the role of ARV therapy on the rates of diagnoses or on the effect on diagnoses at higher CD4s, the authors do state that there was a suggestion that people at higher CD4s who were on ARV therapy had a lower risk of KS diagnoses than people with high CD4s who were not on HIV medication. This would square with many other studies showing that ARVs significantly minimize the risk of KS and that when KS does strike such individuals, they tend to have a much less aggressive form of the disease.

“Given these trends, determining whether [combination ARV] use at higher CD4 cell counts will reduce the impact of Kaposi’s sarcoma is of clinical importance,” the authors stated. They conclude: “Future studies are needed to determine whether earlier HAART initiation will further decrease the burden of Kaposi’s sarcoma among HIV-infected persons.”

[drewm]

Thanks for posting this and allowing the folks on this forum to respond. HIV is a multi-faceted battle. There is the physical aspect and the mental aspect of being poz, taking meds, monitoring your health and so on. Please, please, please DO NOT STOP YOUR MEDS. The meds are fighting this virus and, in essence, giving you life. If I am reading your post correctly, you may be dealing with some mental issues and the HIV diagnoses is making them worse.

Here's the deal. Fighting this virus and winning takes a concerted effort both physical and mental. Please get some mental health assistance and counseling. The feelings and concerns you describe are not unusual, I suspect we have all had them at one time or another.

When I was first dxd, like during the first month or so, I freaked out over every physical symptom I had. All of them. I thought everything was AIDS. I had horrible insomnia (the grim reaper visited me every night) and I was stressed to the max. My doc told me that this was normal but to remember that not every symptom I have is going to be HIV related. I will still have allergies, headaches or whatever and that is not indicative of anything HIV or AIDS. I got mental health counseling and it really helped.

My diagnoses was 4 years ago. I went from a cd4 count of 8 and a vl of a half million to being UD and a cd4 count in the 300's in 5 or 6 months. I went on fluoxotine for depression and life truly improved for me. My point is that getting my mental house in order was JUST as important as getting my numbers back.

Consult your docs and try not to freak out. It does get better. A lot better.

[initforlife]

Thanks again Y'all my Dr was really concerned when I call the other day. She wanted to start me on something for depression before she could see me today. I declined I will be seeing her later today and we can sit down and decide what are all my option. She too thinks its the meds as she has never known me to be down. Like I said it isn't me at all.  But I do know I shouldn't have stopped my meds. Thanks again to Zach for bringing back to the real world. also all the others who have pm with kind words. This is not easy , It fucks with your mind big time.. anyway wish me luck today. when your down there is only one way to go up, right?

[zach]

reconsider the meds for depression, they are their own challenge to get dialed correctly, but very worth it in the long run

being depressed is nothing to be ashamed of

[eric48]

Hi Init

How are your sollen lymph?

Did that resolved?

[initforlife]

My swollen lymph nodes are were pretty much gone from the looks of my last ct scan a few weeks ago... my lungs still have spots but not changing in size. and no my PE in lungs blood works still show blood clots  . the ringing if my ear is still there so an consult with an ent is next.. Yep you can say I started falling apart in Jan and continue on a fast decline. I added five meds today and dropped one,, we are going with the three pills instead of one.  then added a pill for depression and one  for anxiety . I was bad she did wish I had said something sooner before I got this bad. so if you feel your not right on your meds TALK to you DR right away don't wait! and I have a new found love for Life Savers 

[drewm]

My swollen lymph nodes are were pretty much gone from the looks of my last ct scan a few weeks ago... my lungs still have spots but not changing in size. and no my PE in lungs blood works still show blood clots  . the ringing if my ear is still there so an consult with an ent is next.. Yep you can say I started falling apart in Jan and continue on a fast decline. I added five meds today and dropped one,, we are going with the three pills instead of one.  then added a pill for depression and one  for anxiety . I was bad she did wish I had said something sooner before I got this bad. so if you feel your not right on your meds TALK to you DR right away don't wait! and I have a new found love for Life Savers 

Sounds like you are on the right path. Hang in there and please keep us posted.

[eric48]

1- My swollen lymph nodes are were pretty much gone from the looks of my last ct scan a few weeks ago...

2 - I added five meds today and dropped one,, we are going with the three pills instead of one.

1- that's good to hear ...

2- All-in-one is certainly easier and easier is better (at least looking at patients as a group or population)
Seen from from the one and unique patient perspective, the benefits are modest. Mine is 2 pills but I would not mind go 3-4 generic for cost savings (actually I do already... generic 3 pills and branded 2 pills every other day ) So that is not too bad

What did she put you on ?

I suspect Rilpivirine is out of the picture (for the time being)

Apparently Complera, a usually otherwise well tolerated drugs, may be 'difficult' on some patients   

[initforlife]

prezista.truvanda,norvir   Xanax until my AD celexa kicks in, I'm waiting a few days to start the new combo just because I want to have extra in case.  I  had already built up 14 days ahead on complera so now start all over on these. anyway ID and my nurse both said this shouldn't be so bad on me!

[mecch]

So you did decide to take an antidepressant....

[Reggie]

good luck on your new combo, let us know how it works.

[initforlife]

Yes I was talked into taking the AD.  it was that or I knew I wouldn't be here much longer. I have went all day yesterday without crying so something is working. Got yell at for driving on my new meds. but hey I live alone and I needed food., I had to drive. almost shit myself on way home. think it is the new ad because I haven't even took the new hiv drugs yet...Hate when you try to drive and squeeze your ass together in hopes nothing comes out.  anyway told y'all maybe you can get a good laugh .  Thanks to all your help I can't believe I walked out of there with five more pills lol I do have a phobia of taking meds.. Not no more! I was just to the point I needed something done anything I couldn't live like that anymore.  Please don't anyone else stop taking your meds.. Talk to your DR right away about any and all issue's  If I had sooner I might not have gotten so bad.. Today I woke up for the second day in  a row without a darkness

[drewm]

Yes I was talked into taking the AD.  it was that or I knew I wouldn't be here much longer. I have went all day yesterday without crying so something is working. Got yell at for driving on my new meds. but hey I live alone and I needed food., I had to drive. almost shit myself on way home. think it is the new ad because I haven't even took the new hiv drugs yet...Hate when you try to drive and squeeze your ass together in hopes nothing comes out.  anyway told y'all maybe you can get a good laugh .  Thanks to all your help I can't believe I walked out of there with five more pills lol I do have a phobia of taking meds.. Not no more! I was just to the point I needed something done anything I couldn't live like that anymore.  Please don't anyone else stop taking your meds.. Talk to your DR right away about any and all issue's  If I had sooner I might not have gotten so bad.. Today I woke up for the second day in  a row without a darkness

I always know where the restrooms are, everywhere I go LOL! You never know when it's going to be "time to go." 

[eric48]

Xanax until my AD celexa kicks in, I'm waiting a few days to start the new combo just because I want to have extra in case.

I assume you have started Xanax & celexa already right ?

You should not delay Xanax & celexa as you seem to need them right now.

For me, it kicked in fairly quick but took me long to readjust to 'normal' life, say 6 months

Then I wanted to get off the AD (after 6 months)
The Psy. was not in favor as 6 months of treatment is 'short' compared to the usual 1 y. or +, but she aggree I take half pill
Then after 6 months my doc convinced me to carry on for another 6 months
Then, I have tried to taper out. a 'fast' taper did not work. I had to resort to a 'long' taper (minus 1 mg/day per month) , which is very slow, but I do not want a rebound. (actually that was 1mg/day less for 2 weeks , but for 4 in case I felt like I need that)
Now at 2mg/day (original dosing is 20 mg) moving to 1 mg/day

Of note: None of the doctors told me that AD need to be tappered when stopping (although this is pretty much common knowledge)
None of the doctors explained me how to taper
After I had started my 'slow' taper, my doc explained me how to taper and gave me a fast taper schedule (one pill everyother day) (which I knew would not work , since I had tried that)
I just let him talk...
The slow tapper is something I learned on a patient's forum ... I had no idea this could be so difficult to get out of these ADs
AD medication is not interfering with my ARVs

Anyway, it worked for me, so I hope it will for you too!

Since the most pressing condition you have is the depressive state, that should be addressed first and foremost. The depressive state will hopefully stabilize promptly and AD medication should allow you to get back to your normal self

[Ann]

Eric, why on earth are you talking to init about tapering off her antidepressant meds when she's only just started them? Why confuse her?

Init, ignore Eric about tapering off your antidepressants. As usual he's just obfuscating.

I'm glad you've got your med issues sorted out. Hang in there about the diarrhea (I call it dire-rear when it gets that bad). It's usually due to the Norvir you're taking and it should improve soon, once your body gets used to it. It did that to me for about a week/ten days when I first started taking it.

Ann

[initforlife]

Eric the Xanax  was started thurs as soon as I got home from Dr others were sent thru mail  Xanax is just temp till my ad kicks in only on for 30 days . she had to get me on something to work now! the  celexa can take up to six weeks to build up in your body . I was to bad to wait the six weeks. the new hiv meds I have not started yet  waiting to build up a little supply  I will start them in a week..

[zach]

eschew obfuscation, espouse elucidation

keep things simple... take your meds as directed

[wolfter]

I'm happy to hear that things are getting better.  Stopping meds is a horrible decision and I appreciate that you shared the entire experience so that others might benefit. 

I've only hinted at the fact that I finally started on an AD.  It took about a month before I actually noticed any direct benefit.  I think my dr was being tricky as he has suggested them for quite some time.  I agreed to take one as sleep aid as that seemed more acceptable.  Even with all the chaos in my personal life, my mood has been pretty much stable and I'm in a really neat place.

wishing you continued improvement.

greg

[Reggie]

Just keep patient and listen to your Docs advice, your already in a much better frame of mind , you have your support here, from many people who have had the same emotions and feelings. You've been through a lot in a short time , open up to people you feel good connecting to when you need to, it helps, and I believe you will feel better. I have to say these things to myself as well, your not alone. But I can see there's some pretty special and caring people here who are behind you. Take care, gotta go up after feeling hit rock bottom.... Shit talking to myself as well!!...Lol
Cheers

[initforlife]

Thought I would up date been off complera since last Friday, Haven't started new hiv meds yet trying to wait to build up supply and to get complera completely out of my system.  My new ad meds are helping . I'm happy to say my mood is improving by the day. I also just wanted to say not every one will have  problems with complera . I did but I do with  a lot of meds I have taken over the years.  One reason I'm afraid to take anything. I do have a fear of starting the others but I know my life saver will see that I do start them soon.  He is  good about that!

[initforlife]

Just wanted to say the new meds seem to agree with me , Just had blood work done today post new meds . we will see in two weeks how that goes.  I'm Happy most of the time again, When yall on this site told me you had days you didn't even think about having Hiv I honestly thought y'all were crazy. But You were and are right I went almost a whole week without thinking about it. just took my meds and went on.. To all you who are newly dx it does get better in time.  sure I had to go on anti depression meds but that's ok too. anything to make life easier after the dx that messes with your mind as well as your body . Thanks again to all of my new found friends on here  and of course my life saver..   

[drewm]

Just wanted to say the new meds seem to agree with me , Just had blood work done today post new meds . we will see in two weeks how that goes.  I'm Happy most of the time again, When yall on this site told me you had days you didn't even think about having Hiv I honestly thought y'all were crazy. But You were and are right I went almost a whole week without thinking about it. just took my meds and went on.. To all you who are newly dx it does get better in time.  sure I had to go on anti depression meds but that's ok too. anything to make life easier after the dx that messes with your mind as well as your body . Thanks again to all of my new found friends on here  and of course my life saver..   

Great news! Sounds like things are getting better. Glad you got on the anti-depression meds.

[zach]

glad you're feeling well

they are just pills after all, totally worth it