Hi, I'm a new member and I'm confused

[Kirat]

Hi, guys. Thanks for having this forum. I was diagnosed this Jan, when I started taking the meds and by May I was already undetectable. I was feeling fine untill like two months ago. Now I wake up super tired, with nausea/reflux ( although my endoscopy said I have nothing), my load viral is still undetectable. My CD4 was 422 in May and 397 now, with the last result. My doctor said these fluctuations are normal. My concentration is really bad, I have fatigue, like very tired. I'm really confused since I'm undetectable, I should be fine. I ask you people with HIV, is it possible to study and live fine with HIV? I'm afraid I'll be dysfunctional forever now. Thank you!

[Jim Allen]

My concentration is really bad, I have fatigue, like very tired. I'm really confused since I'm undetectable

Not everything in life is going to be related to your HIV status. What meds are you taking and did you have any physical or emotional/mental challenges before starting treatment?

So you are sleeping full night's and feeling tired when waking up?

I ask you people with HIV, is it possible to study and live fine with HIV?

Yeah, HIV isn't a roadblock to living your life

[Tonny2]

           ojo.               Hello there!…. welcome to the forum…. May I know how old you are?. When I was diagnosed, I was 32 years old, and for some reason my testosterone levels were down, making me feel fatigue… good luck, and please keep us posted.

[Kirat]

Not everything in life is going to be related to your HIV status. What meds are you taking and did you have any physical or emotional/mental challenges before starting treatment?

So you are sleeping full night's and feeling tired when waking up?

Yeah, HIV isn't a roadblock to living your life

Well, I've been through the hospital stuff and it was a bit traumatic experience and stuff. But when I dtarted the meds, I started getting better. But now, I've fallen into this sick state where I feel very weak/tired, with a lot of gas(which is probably the cause of my reflux as well). So, I'm thinking I might be having aide effects from the medication. I take Dolutegravir, Lamivudine and Tenofovir.

[Kirat]

           ojo.               Hello there!…. welcome to the forum…. May I know how old you are?. When I was diagnosed, I was 32 years old, and for some reason my testosterone levels were down, making me feel fatigue… good luck, and please keep us posted.

Hi, thanks. I'm 26 now. Yeah, I could test for that but I don't think that's really the issue. It's not just weakness, I have a lot of gas and reflux also, a bit blurry vision too.

[Jim Allen]

Hiya,

Sorry to hear you had some traumatic experiences.

HIV loves the gut, and HIV-causing gut issues can happen, so try eating probiotic yoghurt daily for a week to see if things improve; if it does, then keep eating it.

However, continue working with your doctor and prehaps consider talking to a psychiatrist. I hope things settle down for you soon.

[Jim Allen]

My CD4 was 422 in May and 397 now, with the last result. My doctor said these fluctuations are normal.

Correct. 422 and 397 are no different, as the CD4 count will vary even during the same day. The CD4 count isn't that relevant for you in the future, considering the count has already been above any immediate danger level + it doesn't measure overall health, and your viral load is now suppressed.

[Kirat]

Hiya,

Sorry to hear you had some traumatic experiences.

HIV loves the gut, and HIV-causing gut issues can happen, so try eating probiotic yoghurt daily for a week to see if things improve; if it does, then keep eating it.

However, continue working with your doctor and prehaps consider talking to a psychiatrist. I hope things settle down for you soon.

Well, I already did since I entered a full depressive/suicidal state in the beggining of the year and had to take a leave of abscence from college this year. I'm on lexapro now.

[Jim Allen]

Sorry to hear about the ongoing depression and wish you all the best. Keep working with your psychiatrist if you are seeing one and if not do try to see one.

Best Jim

P.s is your HIV doctor aware of the depression and history? Some HIV meds like DTG can worsen preexisting depression so it's something to keep an eye on

[kentfrat1783]

Hi Kirat,

I'm glad that you have found this group.  This group has helped me and we even started a bi-weekly Peer Support Virtual Call that may be of benefit to you.  https://forums.poz.com/index.php?topic=77329.0

To start, like others have said, we are able to live a normal life even with having HIV.  Yes, we have a daily pill to take and a few more doctor appointments but we can do it.  Yes, it is harder to think that as it took me a few years to understand that but this hasn't affected me, but if anything I know more about my body now then I ever did.

Now I wake up super tired, with nausea/reflux...

Have you talked to your doctor or pharmacist about this?  Are you taking any other medictions (even OTC)?  Some medications say to take with food, others not, take them in the morning or night, etc. I woudl encourage you to check that out first. There could even be an interaction with something.

Do you have an iPhone? I track all of my medications in the Health app and it lets me know if their are interactions and also helps for Doctor appointemts so I know what I am taking.  Just a thought.

For me, as I have aged (now 41) I have learned certain foods gives me acid reflux so I'm learnign to adjust my diet. 

But now, I've fallen into this sick state where I feel very weak/tired...

Once I changed doctors, one of the first things they encouraged me to do was to talk to someone about all that has recently been through.  Depending on your insurance this may or may not be covered but many employers have an Employee Assistance Program that comes with a few free therapy visits so something to look into (if in the US).  It did help me to be able to talk to someone to deal with other issues that I thoguht was related to my HIV but really wasn't. 

I wish you the best.

Kenneth

[Kirat]

Hi Kirat,

I'm glad that you have found this group.  This group has helped me and we even started a bi-weekly Peer Support Virtual Call that may be of benefit to you.  https://forums.poz.com/index.php?topic=77329.0

To start, like others have said, we are able to live a normal life even with having HIV.  Yes, we have a daily pill to take and a few more doctor appointments but we can do it.  Yes, it is harder to think that as it took me a few years to understand that but this hasn't affected me, but if anything I know more about my body now then I ever did.

Have you talked to your doctor or pharmacist about this?  Are you taking any other medictions (even OTC)?  Some medications say to take with food, others not, take them in the morning or night, etc. I woudl encourage you to check that out first. There could even be an interaction with something.

Do you have an iPhone? I track all of my medications in the Health app and it lets me know if their are interactions and also helps for Doctor appointemts so I know what I am taking.  Just a thought.

For me, as I have aged (now 41) I have learned certain foods gives me acid reflux so I'm learnign to adjust my diet. 
 
Once I changed doctors, one of the first things they encouraged me to do was to talk to someone about all that has recently been through.  Depending on your insurance this may or may not be covered but many employers have an Employee Assistance Program that comes with a few free therapy visits so something to look into (if in the US).  It did help me to be able to talk to someone to deal with other issues that I thoguht was related to my HIV but really wasn't. 

I wish you the best.

Kenneth

Hi, Kenneth. Thanks for your reply. I'll take a look on the support group def.
I'm not taking any other medication at the moment, only Lexapro and the arv.
I have an android but probably there are some good appa to see drug interactions, I'll take a look. But from what I've read, Lexapro is not supposed to interact with arv.
Yeah, I talked with my HIV doc and he thinks it's sth else, he precribed me an abdominal ultrassound and MRI for my head but I think it's probably the meds at this point. My endoscopy was fine.

[kentfrat1783]

I have an android but probably there are some good appa to see drug interactions

There is an app for nearly anything we want these days but here is a website for medication interatcation.  There are others but it's what I use most often.

https://www.drugs.com/drug_interactions.html

It also sounds like you are working with your doctor and that is key.

I do wish you the best and even though it's hard to do right now, do things that make you happy.  It's shocking how doing that could take your mind off the HIV and the tests coming up. 

[Kirat]

There is an app for nearly anything we want these days but here is a website for medication interatcation.  There are others but it's what I use most often.

https://www.drugs.com/drug_interactions.html

It also sounds like you are working with your doctor and that is key.

I do wish you the best and even though it's hard to do right now, do things that make you happy.  It's shocking how doing that could take your mind off the HIV and the tests coming up.

Thanks for sending me this website, it will be very helpful.
Yes, I need to work to get the proper meds and deal with these side effects I'm having. I'm actually trying to find a really good HIV doctor around here.

[Kirat]

So, I have been talking to my doctor about switching Dolutegravir to Darunavir, but since Darunavir it's a PI, a fear it can cause lypodistrophy. I would like to know about people that use this drug, what's your experience with it?

[leatherman]

there are a few questions you could answer first that can help you get an answer

what other ARVs are you taking?
why do you want to change meds?
why do you want to change an integrase inhibitor to a PI?

[Kirat]

there are a few questions you could answer first that can help you get an answer

what other ARVs are you taking?
why do you want to change meds?
why do you want to change an integrase inhibitor to a PI?

Hi, the ones I'm taking are in my signature.
Because I'm having some side effects and also I've had depression in the past, and dolutegravir is associated with that.
It's not me that want to change for that, my doctor that proposed it.
Thanks!

[Jim Allen]

Hiya. DTG can for some worsen depression. Switching might be an option, of course keep treating the preexisting depression, anyhow, if it was me I would give it a try and see how things go.

So, I have been talking to my doctor about switching Dolutegravir to Darunavir, but since Darunavir it's a PI, a fear it can cause lypodistrophy.

Extremely unlikely, haven't heard anything major unlike older PI's this one doesn't inhibit ZMPSTE24 etc etc. So far less of the issues than older PIs.

What have they proposed will you be taking with the Darunavir? I think that's perhaps more interesting question.

[Kirat]

Hiya. DTG can for some worsen depression. Switching might be an option, of course keep treating the preexisting depression, anyhow, if it was me I would give it a try and see how things go.

Extremely unlikely, haven't heard anything major unlike older PI's this one doesn't inhibit ZMPSTE24 etc etc. So far less of the issues than older PIs.

What have they proposed will you be taking with the Darunavir? I think that's perhaps more interesting question.

That's nice to know.
You mean, the medication they will give to boost Darunavir? I dont know yet. Ill keep you guys updated.

[Kirat]

Updating myself.

I'm still feeling extremely tired, a bit of nausea and the same symptoms of before.
I went to the HIV doc, she also doesn't know what it is and asked for an abs US and head MRI. The US was fine, I have no problems. The MRI is going to be on this Wed 20th sep. My blood exams were all fine(liver, pancreas, vit B12), only my cholesterol was High(total 266, Ldl 204 and Hdl 36) and Vit D super low 17. I bought a supplement of 50,000 IU to take weekly for some weeks and then I'll retest my vit D. I'm also trying to keep exercising, but it's been really hard with this weakness and tiredneds all the time. My ferritin was 50, which is not that good, but still normal.
Today I went to the lab and asked for Mg, Calcium, Zinc. Just to look if I have any deficiency in these vitamins.
I'LL return to the doc on sep 27th.

[Jim Allen]

Did you change HIV meds or not? Just wondering after your last update

[Kirat]

Did you change HIV meds or not? Just wondering after your last update

I still haven't.  My doc wanted to see the blood tests and the abdomen US and head MRI first. The MRI is tomorrow and next wednesday is my return with her. So then we will see what we will do. She told she will probably change it to Darunavir