POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: poztraveler2014 on July 24, 2014, 09:47:16 am
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Hi everyone. I moved to Ecuador to start meds because i figured why not. In any case on Saturday of last week i started taking isentress/truvada (generic). I have felt more or less ok, except the last few days I've been feeling really sick kinda feverish but i don't think i have an actual fever. I've felt weaker and more tired then ever before. Today,I'm gonna see if i can see the doctor but I'm not sure. In any case, I'm a little scared as these seemed to be symptoms of something serious. Am i just exaggerating or should i demand to see the doctor and do something about it. thanks
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Hello welcome to the forum.
I doubt anyone here can tell you if its serious or not. Of course if you feel sick you should see a doctor.
Anyhow, how long have you had HIV and what numbers do you have, starting treatment?
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ive had hiv 5 years. i was at 250 tcells and 11k viral load. I did manage to speak to one of the doctors he said to wait a week and if it gets worse tell him or just wait till my doctors appointment in august.
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Thats pretty low CD4. It takes time to adjust to meds. Also maybe you are having a bit of I.R.I.S.
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its possible its just weird. i feel ok for a while and then i feel terrible again. Its a weird sort of cycle whose beginning and end i dont really get
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where did you live before Ecuador?
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the US
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Are you sleeping OK? I felt a lot of what you are complaining of and we finally figured out that severe insomnia was screwing with me. I normally dislike throwing out suggestions like this since not everyone has the same issues with every drug.
wolfie
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well i dont sleep particularly well. The sun gets in my eyes in this place even with a face mask on but more then that i get up earlier then usual from the anxiety of having to take the first pill a day. I think that certainly makes it worse.
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Why did you schedule such an early dose? why not take one pill of isentress around lunch time, and the other and the truvada at bed time?
why are you sleeping in the sun? dont you sleep inside? what about pulling the shades or shutters?
Finally, what about other adjustments that could be stressful on the body? Ecuador probably has quite different food and water, different foods and new bacteria to get used to, no?
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Well i was told to take them exactly 12 hours apart. The isentress and truvada at X point in the morning and the other dosage of truvada 12 hours after that. Ive somewhat tried to adjust it but i like to sleep in and get up late, so idk.
Yea, its the equator sun the is gonna come in unless you have a place with no windows. The shades are simply no match.
Ecuadorian food and drink is different but i was here last year and it didnt take me this long to adjust. Im really kinda upset, i thought getting on pills was gonna make me feel better. I thought i wouldn't be so tired all the time and i might be able to do more things. But so far its worse, i'd like to go out tonight but im not sure i'd have energy to do so. I've been so tired.
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What about 11am and 11 pm? noon and midnight?
Are you overly worried about doing it on the dot, exactly 12 hours?
Me I've been ud for quite awhile. I dont stress at all the timing of my 2 doses but I do space them out as much as possible and get the 2 in me each day. This is ok by my doc. Not sure if its advisable to be super lax when just starting but I don't think you should be losing sleep worried about dosing time. What about noon and midnight?
Do you work? Are you going to work? What is your long-term daily schedule going to be there, not about the HIV drugs, but about your life? Are you looking at some routine?
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Well i was told to take them exactly 12 hours apart. The isentress and truvada at X point in the morning and the other dosage of truvada 12 hours after that. Ive somewhat tried to adjust it but i like to sleep in and get up late, so idk.
Yea, its the equator sun the is gonna come in unless you have a place with no windows. The shades are simply no match.
Ecuadorian food and drink is different but i was here last year and it didnt take me this long to adjust. Im really kinda upset, i thought getting on pills was gonna make me feel better. I thought i wouldn't be so tired all the time and i might be able to do more things. But so far its worse, i'd like to go out tonight but im not sure i'd have energy to do so. I've been so tired.
Truvada is only taken 1 pill a day with your other medication.
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Yeah good catch.
Have you switched the dosage or was that a typo?
Its 2 isentress a day, and 1 truvada. Not the reverse!
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Yea, sorry that was a typo. I've gotten my pills in a little monthly pill box. the pills are too big so ive turned it into a 15 day box in any case that helps keep me organized. The only issue with doing it midnight is that something i might want to sleep earlier then that or i might have to get up early. Sadly, Ecuador is not the kind of place where you can sleep till noon and get anything done. I am gonna work that should start in august but it'll be a mess the week days will be fine but saturday ill have to be up at 6am. So its a mess.
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Its really not a mess. I keep suggesting ways to make it practicable and you are poo pooing them. You said you are stressed about timing of doses so find a solution. It doesn't matter if you wake up at 6 am you can take it later on. If you go to bed a little bit earlier one day, then just take it before you go to bed earlier than usual. You shouldn't be seeing this as a burden, mess, or really difficult to accomplish.
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maybe i shouldnt see it that way but i do. Its a huge pain to me. Someone who liked to live life so untethered and free. The HIV never really bothered me but when the time came to get on pills i avoided it until i could no longer avoid it.
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Hmmm. Well Im glad you joined here. Maybe talking to others will help normalise the whole thing. You started well past the CD4 recommendation in the US. So I can see the avoidance being an issue.
Im curious why you moved to Ecuador to start HAART. I think thats the way you explained it, as going together. If you care to discuss.
Are you a citizen of Ecuador? Or, otherwise, why there?
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The HIV never really bothered me but when the time came to get on pills i avoided it until i could no longer avoid it.
It was slowly and surely destroying your immune system, so not sure what you mean by "bother you" but I suppose you mean psychologically. But, now you know, that was borrowed time and avoidance.
Maybe overall the problem isn't timing of dosages, but a sort of shock of the reality of your situation.
When you take having HIV and its treatment in stride, you'll see pretty normal again to yourself.
Probably the one thing that keeps us treated people on a tether is that we do need a long-term affordable drug supply. And those medical visits to make sure everything is going well.
But before I had HIV, i was "tethered" in all sorts of ways - job most importantly. At least in Switzerland medical care is affordable to all people so there's that. I didn't experience HIV as tethering me more than I already was, as for mobility and finances but yeah somewhat. I don't know your situation, maybe you have been a free spirit and world traveler mostly. So yeah, having to keep steady drug supply needs to be incorporated into your life from here on out.... But change is good, no? You can "travel" in many ways even when staying put... Travel in relationships, intellectually, professionally, creatively, spiritually. Its not just about the body moving around from place to place.
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Why dont you make getting healthy again, rebuilding your immune system, and getting normalised with HIV for the long haul, into a sort of journey.... Also seeing whats up for the future of you in Ecuador - people, job, culture. etc. Thats a lot of the plate to motivate you. Plenty of discoveries coming your way...
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I was in Ecuador when I was diagnoziced, there are good medicals there, but you have to know where to find them, I know some who may help you in Quito. I send your a PM with some more info. I hope you´re getting better.
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Im not really sure how to reply to all the questions. At this point, i feel tired, like i have the flu. And yesterday my sides were hurting. I suppose it could be ISIS. In any case should i just sit tight ?
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I R I S not ISIS
http://www.hivguidelines.org/clinical-guidelines/adults/immune-reconstitution-inflammatory-syndrome-iris-in-hiv-infected-patients/
My opinion is when one doesn't feel well one asks doctors to identify the problem and offer treatment and reassurance.
If you have access to medical care, use it. Thats a basic rule for living well with HIV...
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Ha!... I Googled IRIS and Google corrected it to ISIS and now I'm on a NSA watch list...
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Ha!... I Googled IRIS and Google corrected it to ISIS and now I'm on a NSA watch list...
ojo Sorry to hear that...Immune Reconstitution Syndrome
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Im not really sure how to reply to all the questions. At this point, i feel tired, like i have the flu. And yesterday my sides were hurting. I suppose it could be ISIS. In any case should i just sit tight ?
ojo Hi, maybe you are nervous because of the treatment, just relax, it takes time to get used to it,,,about your debate taking your meds its either askusting yourself to take them, or prepare for a possible treatment failure, nobody said that having hiv/aids was going to be easy,,,,good luck, I hope you feel better
ojo
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i was just told to wait till august 7
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i was just told to wait till august 7
ojo Hi 2014...are you feeling better?..I hope so...it takes time my friend, I'm taking Isentress, no problems for me, hope you feel better ojo
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i still feel really tired, like ive got the flu. So idk.
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i still feel really tired, like ive got the flu. So idk.
ojo...I feel bad you are feeling tired, were you feeling like this before starting treatment?..your cd4 is low,but it could be worse...how old are you?...I hope you feel better soon and maybe would be worth to check your testosterone level, if you keep feeling like this...I know people who is taking the same treatment like you, and they haven't complaint about this symptoms...please hang in there...good luck again ojo
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yes, i felt rather tired but now its terrible. Today i had to get up early, i had to take two naps and one was like 3 hours long and now im super tired again.
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Who is the "they" who are making you wait until Aug 7?
How is your access to medical care there?
Get the referral from the person in this thread, by the way.
Are you going to have a GP in addition to the ID specialist?
If your HIV doc won't see you, go to a GP. Or the hospital.
Maybe you have something else - like the flu.
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the people at the hospital. I honestly have no idea how the medical system works here and its quite hard to figure it out. I just go to the Eugenio Espejo hospital which i suppose is the specialist. I really dont know. I will look into the clinic he recommend but i fear it might be too expensive. I doubt its the flu though or anything common though. I feel bad, then i feel ok again. Its on and off.
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2014 - My overall advice going forward is to be active about your medical care. Remember - the squeaky wheel gets the grease. Its easy to fall through the cracks. Its seems like you let yourself fall through the crack up to this point, as you should have been on treatment sooner.
Its curious to me that you would move to Ecuador to start your treatment but at the same time not know how the medical system works there - generally or for HIV+ people. Why exactly was this choice made? It seems casual to me. But perhaps its because you don't really discuss much.
It might be nice if you were more generous discussing your situation with this forum. Then maybe more people could pipe in with specific advice or experience that may be helpful to you.
Now that you are there and that you are on treatment, I guess the extent of my experience I can suggest is - you got to speak up, research, find resources both medical and any HIV support groups, and actively figure out how to get what you will need there. This applies to any country so Ecuador is surely a place you can set yourself up if you put your mind to it.
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Actually quite the opposite. I put together a lot of effort to get to this point. I had to fight a lot just to be seen in the states. I was always looking and fighting. because i've never had money its always been a pain to be seen in the states too. I have been rather active in my care. I just never wanted pills because i knew the commitment required, something im still not sure is worth it but i got no choice.
As for Ecuador, i lived here as a child and i promised myself id come back to live here once again. Given that i was out of any meaningful options in the states i figured that time was now. I had to pick a point to start so i did.
The issue is i have other minor medical concerns but since i had almost no insurance in the states i could get them seen. I am not sure how to get that worked out here either but the last few weeks ive woken up in the middle of the night unable to breath. I've always had issues with dry mouth and obstructed nasal passages, but when i saw a Dr in the states i was told to just deal with it. So that must undoubtedly be contributing to make things worse. I also suffer from major depression and anxiety. Which i have tried to work on but i have never found an effective treatment.
So overall the minor issues, HIV, the lack of healthcare, etc make it rather hard to do very much.
I would however at least like for you to know that i have made efforts above and beyond most people just to get to where i am now. It has not been easy and I would like at least some positive acknowledgment as i often feel rather lonely either way.
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Well thats good to hear that you are a fighter.
So are you a citizen of Ecuador? And were you also a citizen in the US?
Why did you find no options in the US? If you are a citizen in the us, I would guess you could go though a AIDS service organisation and find some options.
Are there ASOs in Ecuador?
Anyway in the immediate next days, its always going to come down to how sick do you feel. And where you can go if you need a doctor's assessment.
Going forward for the long haul, some things to keep in mind - might reassure you
1) Medicine has effective HIV treatment pretty mastered. There are plenty of drugs and treatment is effective. Its all about dealing with access and affordability and staying adherent. Then of course, all the social, affective, and legal downsides..
2) You'll want to get some mental health treatment. Far as I know, the 2 things that work are talk therapy and/or SSRIs. You didn't find effective treatment yet, but don't believe that its not out there, it is! Anxiety is another issue and there are effective therapies - cognitive - and also pills.
I encourage you to give up whatever resistance you have to pills, overall.
HIV+ people need pills. Sooner or later. No quibbling there. Also mental illness can be treated with pills and therapy.
What about social emotional financial support where you are now? Are you alone?
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The SSRI's simply dont work for me. I've tried them, i've had some minor success with CBT but the hospital's psychologist seems to be more into freud. On thursday when i see him im gonna tell him i'm not interested in talking with him anymore. Although here i feel pressured to continue with him, almost threatened. Ill figure that out though.
Well im in the process of Ecuadorian citizenship but i am a US citizen. I went to a few ASOs but they were all pretty shitty. They would forget things and there treatment was usually very limited in things related too but not directly being HIV. As far as i know theyre are really no ASOs in Ecuador.
As for how i feel, i still feel tired, my body aches, etc. Its driving me nuts, its hard just to get out of bed from the fatigue.
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Forgive me if this has been discussed already but have you been checked out for a parasite or something you may have picked up ? I'm not assuming that the water is dirty or food quality is poor in Ecuador and would be asking the same question no matter where you live .
I had a rough time once with a stomach bug I picked up and it wasn't your normal throwing up and shits kind of thing at the start of it, I felt lousy for a whole month before the worst .
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Good suggestion Jeff.
2014 - so are you alone in Ecuador? How old are you?
It sounds to me like you have a very particular and not easy relationship to medical care - physical and mental. All the ASOs were "pretty shitty" hmm?
Maybe the psychologist wants you to continue because he sees you have some risk... What do you have to lose by continuing? Is it financially hurting you?
Also, the psychologist, in a hospital no less, might be an access point or a reference point to get doctors on the case to figure out why you feel so crappy.
The more you speak, the more it seems like a complex of challenges and also it does read a bit between the lines like you are hurting yourself with too much control over things that you are not a specialist in.... Maybe I am just talking about my own experience - I mean I am not a doctor or medical specialist so when I got HIV, or other serious health challenges in the past, I tried to get doctors to diagnose and treat and I followed their suggestions. If one doc wasn't helping me feel better, I might go to another. But I never walked away saying they are all shitty or feeling that pills were not the answer.... The same with shrinks. I have had therapy a few times when I have been overwhelmed. I had depression and anxiety a few times. The shrinks HELPED me sort it out, and I pretty much followed their expertise.
I mean not blindly, of couse. We are masters of our own experience and destiny. But maybe you are resisting giving up a bit of power and control, and thus not getting some expertise that could benefit you.