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Probably About To Start Meds
#244087 - 01/25/09 11:52 PM
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So I was seeing quacks in some podunk town back in october, and they didn't know what they were doing. My numbers were not good ( cd4 99 VL 88K) but I didn't start meds they put me on antibiotics to prevent PCP but it only made me break out in a horrible full body rash.
Anyway I went to another hospital to seek treatment and I they have done all the bloodwork and ran all the tests ( i'm still praying that I dont have some super-resistant strain) but I wil get my results back this Tuesday and I am pretty sure that they will recommend that I get started on meds.
My concern is that I hear Atripla causes severe emotional issues and weird dreams in some people, and I think I am already emotionally imbalanced and I don't wanna have thoughts of suicide The idea of me thinking about harming myself is scary, but I don't know if this is something that atripla users can avoid.
My ex went on atripla and he was like the epitome of stoicism and now he is on Lexapro and often complains of his chest tightening from stress. I cry in movies and get depressed over sad stories, how will I handle something that will make me chemically imbalanced.
I don't think I can handle a pill that I have to take more than a day and therefore atripla is probably the most convenient.
Also I know you have to take it on an empty stomach are there severe consequences if you take it right after you eat or if you eat soon thereafter?
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Hi southerncharm
As someone with a rocky psychological history who has been using Atripla (or its constituent drugs) for the last three years, I will try to answer your question as fully as I can.
First of all, be assured that all the fears you talk about are perfectly natural. I also urge you to believe the fact that starting medications will almost certainly not be anywhere close to being as traumatic an experience as you are probably imagining right now - there is even a very good chance that you will look back on the whole experience as something of an anticlimax.
Take away the perfectly natural stress about starting medications and all the fears you talk about seem to revolve about the efavirenz (Sustiva) element of Atripla, so - whilst my advice will ultimately be for you to give Atripla a go and see how you get on with it - you probably aren't as restricted in your choices as you imagine.
There are alternatives to efavirenz - alternatives which don't come with the same burden of possible CNS (central nervous system) and psychological side-effects - so, regarding the just taking one pill a day issue: try not to focus too much on that, because ultimately there is little difference between taking one pill once a day, or two pills together once a day. In fact - even when just taking Sustiva and Truvada, which together give you exactly the same constituent drugs as you get in Atripla - the added flexibility that the two-pill option can give you in managing exactly when (if) you experience side-effects can be quite liberating. I will be more than happy to expand on this if you want me to; but, for now, please believe me when I tell you that this isn't as big an issue as you imagine.
You ask if there are severe consequences from not following the empty stomach advice. This all depends on how you define 'severe'; but on balance my advice would be that it would behove you to heed that advice (at least for the first few months, until you have a clearer picture of which side-effects you experience and learn how to manage them).
The issue with food (especially fatty food) is that it increases the level of efavirenz in your blood. You may think this is a good thing - because more of the drug in your blood means more of the drug attacking your HIV - but, even when taken on an empty stomach, there will be more than enough efavirenz circulating for it to achieve full therapeutic levels .. and any excess dramatically increases the likelihood of you experiencing the very side-effects that you are worried about and trying to avoid.
Follow the standard advice on how to take Atripla and the odds are heavily stacked in your favour that you wont experience the controversial, and troubling, psychological side-effects that you most fear.
The Atripla side-effects that you are far more likely to experience (and which are exacerbated by not following the empty stomach advice) are:
- Feeling somewhat stoned when the efavirenz starts hitting your bloodstream (between 45 minutes and an hour after you take the pill). This is a side-effect which you will either love or loathe - if you loathe it, then rest assured that it will almost certainly fade away gradually over a few months .. and if you love it (like I did) just sit back and enjoy it whilst it lasts, because nothing that good lasts for ever.
- Some degree of sleep disturbance and vivid (which doesn't necessarily mean 'bad') dreams. It is less certain that these will fade with time; but, if they don't, then once you have stopped experiencing the stoned thing, there are some very effective measures that you can take to manage them away.
With a little patience and determination, there is every chance that in twelve months time you will be in exactly the same position that I am in today: still taking Atripla, experiencing zero noticeable side-effects and wondering what all the fuss and worry was about.
If you are one of the unfortunate few who experience the troubling psychological side-effects of the efavirenz element of Atripla, then be ready to ask for help. Speak to your doctor about the signs to look out for and accept that going back and asking for help isn't an admission of defeat - there are some people for whom Atripla just isn't the right drug and for whom a change to a more tolerable medication means a return to sanity.
I apologise if that is all a bit verbose, but it is my advice which is there for you to listen to or ignore as you wish. Either way, good luck.
Ruairi x
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There's probably no God. Now stop worrying and enjoy your life.
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Btony
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Hi southercharm. I am sorry to hear that you might have to begin taking meds but there comes a time when it is necessary. I have been on Atripla for a few years now and have not had a bad experience yet. I have not noticed any real change in my moods (I sometimes suffer from depression too). My number are great, I feel good and I am able to be like everyone else. Taking just one pill a day is great. I take mine at night right before bed. All I can say is give it a chance. Maybe your doctor can give you some meds to try before you buy them. That way you can see if you are able to take them and be okay. Keep us posted on it. We are there for you.
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ScotCharles
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The antiobiotic for the PCP I assume was Bactrim. I too had that horrible rash that started while I was in hospital with PCP. Once I returned home I remained on Bactrim as the rash became worse. My doctor at the time said I had a Bacrim sunburn and prescribed Calamine lotion. Bactrim as you know by now makes you very sensitive to sun exposure, which in southern California where I live is nearly impossible to avoid. After a few nights sleeping in the bath tub to alleviate the awful burning, I went to the local urgent care where I was told I had a sufa drug allergy which was severe enough to be life threatening.
That same quack doctor also prescribe Sustiva. I found the resultant dreams disturbing but learned to control them by willing the scary ones to take a more mild turn or waking up if the dreams became really bad. For me the most disturbing side effect of Sustiva was the waking dreams (hallucinations) in which I imagined that people meant to do me a mischief.
Good luck with Sustiva. Resistance to Sustiva arises very easily so you must be certain to take your Atripla every day without fail to avoid resistance.
I have never had good luck with the AIDS meds. Just now I have jaundice caused by Atazanavir (Reyetaz) with a swollen mid belly from an inflammed liver. The Norvir I take with the Atazanavir aggravates my neuropathy which now involves my feet and lower legs. The Truvada I also take has made me lame in both legs as the binder used in Truvada causes muscle wasting.
My numbers are good with a CD4 of 274 and a VL of 3500, so I shall stay with the meds I have. Better the devils you know as is said.
I have been infected with HIV for at least 25 years now, maybe more. The longer I am infected the more HIV related diseases I have. Just now I am battling depression, hallucinations, cognitive loss, osteoarthritis and osteoporosis, all of which are caused by long term infection with HIV. I have begun to wonder if my decreased quality of life is offset by the AIDS meds effects on my immune system.
I sometimes envy those who died early of this awful disease and didn't live to become frail in their early fifties as I have.
ScotCharles
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Life is a river.
Carpe diem.
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Sorry, I forgot about the antibiotics.
Prescribing co-trimoxazole (Septrin/Septra/Bactrim) is a routine thing we need to suffer when our absolute CD4 cell counts fall below 200. Not only does it protect us against PCP, but when our CD4 cell count falls below 100 (as yours did) we will normally be prescribed a higher daily dose to offer a high level of protection against toxoplasmosis and various other potentially devastating bacterial infections.
The rash and sensitivity to sunlight are par for the course. As soon as your CD4 cell count is consistently above 100, you should be able to drop back to taking your antibiotics just three times a week, which will tend to ease those side-effects quite considerably. When your CD4 cell count is consistently above 200, you should be able to stop taking them altogether.
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There's probably no God. Now stop worrying and enjoy your life.
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hopefulone
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you never know unless you try.
i had a teacher in 7th grade tha that had this dot matrix printed banner across the front of the classroom. Above the green chalkboard. It was black and white.
It read, "Be positive and positive things will happen."
Funny I haven't thought about that in a long time. Easier said than done sometimes, without realizing it I have been trying to do that for the past several weeks.
I wish you well.
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hopefulone
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Thank you for sharing so much. Thank you.
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ScotCharles
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Not true, good medicine does not hurt and there are many non-sulfa alternatives to Bactrim, such as Dapsone. Don't suffer needlessly just because your doctor is too lazy to do his/her homework.
ScotCharles
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Life is a river.
Carpe diem.
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What isn't true?
As for the "many" claim - that is nothing more than vacuous and uninformed nonsense. There are a few alternatives, but they certainly aren't plentiful and they definitely aren't as effective.
It is precisely because of the toxic effects that the UK's Department of Health put co-trimoxazole’s on a restricted licence - in most uses trimethoprim alone is just as effective. However, co-trimoxazole remains the most effective and recommended drug for PCP and toxoplasmosis treatment and prophylaxis .. and certainly trimethoprim alone is not at all effective against PCP. For all the side-effects that co-trimoxazole has, they are fewer and generally more manageable than those of the alternatives.
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There's probably no God. Now stop worrying and enjoy your life.
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ScotCharles
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<sigh>
Friend, let's stop here. We do no one good with sniping at one another.
I have been treated for PCP quite effectively with two drugs including Dapsone and one other I cannot remember. There is also a regimen that can be followed to alleviate the allergic reaction to Sulfa, but most doctors have to be "encouraged" to use it.
Pax Vobiscum,
ScotCharles
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Life is a river.
Carpe diem.
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*rolls eyes*
It is prophylaxis - not treatment - that we are talking about. You are also overlooking the fact that most people can easily be desensitised to co-trimoxazole if they seek medical advice (and the doctor knows what they are doing).
As for Dapsone - perhaps you forget that it has an even higher toxic load than co-trimoxazole (so much for good medicines don't hurt). Allergic skin rashes are common as hell. Other very common side-effects include nausea, sensitivity to sunlight and serious blood disorders. Some people even get limb and back pain, crippling headaches and peripheral neuropathy from taking dapsone. So, you see, there are very good reason why it is a second choice drug that is only generally used if others are unbearable.
The other drug you are thinking about is probably atovaquone (Wellvone) - which has fewer side-effects and is good for PCP, but not always toxoplasmosis.
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There's probably no God. Now stop worrying and enjoy your life.
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I started atripla 8 months ago with similar resurvations as you have, it has turned out to be the opposite, I think when you see the results of your numbers changing rapidly with this wonderful drug it will lift you - not depress you, as for the dreams - well I always had weird dreams I just have a few extra ones now and it isn't a problem, starting any drug that you cannot stop once started is a heavy load but you won't get too far without it and that's the reality. Atripla is easy to take - generally easy to tolerate and very few people have isssues with it
good luck and look forward the hearing about those numbers shooting the right direction soon
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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My concern is that I hear Atripla causes severe emotional issues and weird dreams in some people, and I think I am already emotionally imbalanced and I don't wanna have thoughts of suicide.
Hello, SouthernCharm. Efavirenz has been found to cause horrendous mental side-effects in only (roughly) 1 person in 1 thousand. So the thing for you to focus on is that the other 999 people do not experience the same severe side-effects. I, unfortunately, was a "1 in a 1000". Of course, I only learnt this because my brain reacted so badly. If I took Efavirenz late in the day, my sleep was full of horrific dreams that woke me up - and I woke up so full of adrenalin lthat I could not get back to sleep again. Consequently I suffered continual sleep-deprivation and that causes depression - which caused me to see that suicide would be better. On the other hand, when I changed to taking Efavirenz early in the day I was then "high" for half of the day - a quite abnormal and unsatisfactory state to be in, making my interaction with people and things all rather ingenuine and exaggerated - my behaviour became rather like that of a person who indulges in recreational drugs.
So, keep in mind the "1 in a 1000". And if by unlucky chance you are not one of the 999, then just go straight back to your doctor and demand you be changed to a different combination. Don't let them convince you that sooner or later things will settle down. That's what they told me but for us "1 in a 1000" folks that's not the case.
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I don't think I can handle a pill that I have to take more than a day and therefore atripla is probably the most convenient.
SouthernCharm when I "kicked up stink" and created "merry hell" at my clinic after 1 year on Efavirenz they suddenly caved in and said, "No problem. We can easily put you on Neveripine, Lamivudine, and Tenofovir straight away. And you can take them all at the same time once a day - the only thing is we will need to monitor your liver for the first three months!" And, indeed, they monitored my liver for the first three months, all was well, and things have been much better since.
So, give the Atripla a go. You'll probably be one of the lucky 999. But if not, just get switched to Neveripine, Lamivudine, and Tenofovir.
Good luck.
And keep coming back here whenever you have any anxieties. There are a great many good, kind, and wonderful people who visit this Forum. I have made several very good friends here from all over the globe.
BWB.
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Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.
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ScotCharles
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Dearest Ruari,
I said good medicine does not hurt. Anyway treatment/propholaxysis, potato/pohtato, is an unimportant difference. I had many side effects with Dapsone including aggravation of my AIDS related polyneuropathy, but compared to the Bactrim rash, I lived with it until the pain got so bad I couldn't stand it. Unfortunately the other one you mentioned, atava-whatsit, isn't an approved drug on my health insurance formulary. I took it for while when I was relased from hospital after a nasty bout of PCP that went undiagnosed by my doctors for nearly six monts. The cost was so astronomical, I quickly switched to Dapsone. If I get another bout of PCP as bad as the last one, I am a goner, so when necessary I shall take my prophylactic (?) dose of Dapsone.
Warmest regards,
ScotCharles
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Life is a river.
Carpe diem.
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Well I took the dapsone this morning before I went to class because I figured it would be easier to take it since I am up at the same time every morning. About 30 minutes into the class I started getting itchy just like last time. And the rash I have looks like circular bruises and I don't have hives. It looks like I have goosebumps. And I am red all over ( I am african-american so this is quite a feat.) I'm upset because I told the doctors that dapsone gave me a reaction just like the bactrim and they dismissed it. Now what? I'm not taking a medicine that makes me miserable and I know the consequences but I haven't gotten sick yet. This is so frustrating.
I called the doctor's office, but the nurse said I couldn't speak to the doctor I could only leave a message. What a Bitch.
I just want to be unconcious, I'm trying not to scratch and I took an anti-histamine, but it usually never works. Most times I have to just wait until its out of my system.
I don't want to be the incontinent patient, but I don't like being right when its about something that will go wrong
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