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

[Kirat]

Updating things.

Had an MRI. There was an arachnoid cyst. Went to the neurologist. The neurologist said the cyst is not causing my problems at all and it is an incidental find, I probably had it my entire life, normally it's congenital. They sent me to an eye doctor.

The HIV doctor was waiting what the neurologist would say to know what to do. So, probably now she will switch to darunavir. I'm still waiting for that.

I'm still with the same symptoms. Dry mouth, extremely fatigue. I wake up so weak that it's difficult for me to push the volume buttons on my phone when I wake up. My sleeping is bad. I have dizziness like I said and huge brainfog. Basically, I'm totally dysfunctional and I don't know why. I'll keep updating you guys, have a good week!

[Tonny2]

         ojo.         Hi there!…i guess it’s time to switch meds. Darunavir is a good option…good luck and have please keep us posted…your case is interesting…hugs

[Kirat]

Updating:

Got the prescription for the new combination: Darunavir/Ritonavir + Lamivudine/Tenofovir.

The medication will probably take some days to arrive. So, let's see. Still feeling fatigued, weak, trouble concentrating, etc.

One of my fears is lypodistrophy, but from what some ppl said, this was more common with old PIs, so I hope everything will be fine.

[Kirat]

One thing I forgot to mention is that I think I might be having antiretroviral toxic neuropathy. I read it can cause impaired balance, general weakness and paresthesia. I forgot to mention this symptom, but I indeed  have numbness/tingling sensation on my hands and legs very very often nowadays.

[leatherman]

toxic

ugh. I really wish people wouldn't use that word. Antiretrovirals do nothing but interrupt different points in the HIV life cycle. Of course there is a percentage of patients who experience side effects; but every approved medication does that....simply because everyone's body is a little bit different. Through the last 50 years developing HIV medications, the margin for side effects has decreased with each new medication. Life saving and few, if any, side effects? That's the direct opposite of "toxic".

antiretroviral toxic neuropathy

neuropathy was common 30 years ago from HIV medications. Modern formulations have continued to reduce this side effect also. Neuropathy is rarely caused by medications in the 2020s; however if it is diagnosed, it's usually caused by longer term untreated HIV and/or older age.

One of my fears is lypodistrophy, but from what some ppl said, this was more common with old PI, so I hope everything will be fine.

At your age and having been on medications less than a year, your fears of lipodystrophy, neuropathy, and being dysfunctional from HIV or the meds are really unfounded. Perhaps you should see about getting some counseling (or just talk to your doctor more) about these worries and fears so you're not concerned about things that are unlikely to happen.

[Kirat]

ugh. I really wish people wouldn't use that word. Antiretrovirals do nothing but interrupt different points in the HIV life cycle. Of course there is a percentage of patients who experience side effects; but every approved medication does that....simply because everyone's body is a little bit different. Through the last 50 years developing HIV medications, the margin for side effects has decreased with each new medication. Life saving and few, if any, side effects? That's the direct opposite of "toxic".
neuropathy was common 30 years ago from HIV medications. Modern formulations have continued to reduce this side effect also. Neuropathy is rarely caused by medications in the 2020s; however if it is diagnosed, it's usually caused by longer term untreated HIV and/or older age.
At your age and having been on medications less than a year, your fears of lipodystrophy, neuropathy, and being dysfunctional from HIV or the meds are really unfounded. Perhaps you should see about getting some counseling (or just talk to your doctor more) about these worries and fears so you're not concerned about things that are unlikely to happen.

Yeah,  not a definition I created, but that's the name I found. If there's any other name, that would be great.
And I think my fears are not really unfounded if I'm having all these symptoms I related. But thanks for your answer!

[leatherman]

but that's the name I found. If there's any other name, that would be great.

Ah. Sounds like time for me to start up some advocacy work again. "Antiretroviral Neuropathy" is as good a name as ATN without the misleading word "toxic" as the meds are not poisonous.

I think my fears are not really unfounded if I'm having all these symptoms I related.

I'm not discounting that you are having issues; however, this is only a peer support forum and can only do so much for you. At your age and having been on medications less than a year, yours is a unique case. Make sure to talk to your doctor more about these issues. (write out lists of symptoms, when started, how frequent, etc. Try to give your doctor as much information as possible)

[Jim Allen]

PM sent.

[Kirat]

Started Darunavir today.

[leatherman]

That's good to hear! 

Hopefully this change will help out with some of your issues. That would be great to hear too, and I'm sure it would make your life a lot better.

[Kirat]

That's good to hear! 

Hopefully this change will help out with some of your issues. That would be great to hear too, and I'm sure it would make your life a lot better.

Thanks, mate. I'll keep updating you guys. It might be interesting for other people to know my case as well if I get some cognitive improvements with this switching.

[Kirat]

Can I put the pill in just one bottle to occupy less space?

[leatherman]

sure. you could put them in a single bottle

[Kirat]

Isn't it going to harm the efficacy of the medication if I store them all in one bottle?

[Jim Allen]

Isn't it going to harm the efficacy of the medication if I store them all in one bottle?

The short answer is, no.

However, I was just wondering if a small pill box or a 7-day pill box would work for you? I presume you want to use one bottle because you don't want to carry multiple bottles around with you or at work, so a pill box might work.

[Tonny2]

        ojo.          @kirat…hopefully this new combo so you can go back to live your life again…how many times a day you have to take your meds?…I use a two weeks box pills. I take four pills in the morning and four at night. When i go out at night, i have a key chain that holds my four pills…good luck and please keep us posted.

[Kirat]

I guess a pill box might work, yeah.
I'm taking 3 pills in the morning now, tonny.

[Kirat]

So far, no improvements.

[leatherman]

when people change meds, I tell them you usually have to give it anywhere from 2 to 6 weeks to see the effects of the old med leaving your system completely and the new med settling in. Believe it or not, that's a good thing. The half-life of the old meds running out while the new meds start is what keeps HIV in check during a med change.

Your intro post said that you were taking meds about half a year before you started having issues. If those issues are related to your first meds, then it might take some time to clear those issues when switching to different meds.

[Kirat]

when people change meds, I tell them you usually have to give it anywhere from 2 to 6 weeks to see the effects of the old med leaving your system completely and the new med settling in. Believe it or not, that's a good thing. The half-life of the old meds running out while the new meds start is what keeps HIV in check during a med change.

Your intro post said that you were taking meds about half a year before you started having issues. If those issues are related to your first meds, then it might take some time to clear those issues when switching to different meds.

That's a good point, I guess!


I was reviweing my labs. In march my TSH was 2.9 and T4 was 1.09. In september, the TSH was 4.8 and T4 0.9. And my ferritin in september was at 55. Manual Merck says it's probably a good idea to start some treatment with TSH above 4.5 e symptomatic. The symptoms of hypothyroidism is very similar to what I'm having right now, so, It's a bit concerning. I think I'll talk to some endocrinologist.

Does anyone here had or have any issues with the thyroid after initiating ARVs or getting HIV, anyway?

[Jim Allen]

Does anyone here had or have any issues with the thyroid after initiating ARVs or getting HIV, anyway?

Has anyone, sure, and the same can be said for every medical issue. With ART and people living instead of dying, we now get to experience all kinds of health issues we would have otherwise missed out on.

However, you are only in the first year, so I would expect things and blood work to be out of wack and, for some people, issues to arise. With HIV, when starting treatment, things can get worse before they get better, simply due to HIV itself and the damage, infection and immune system "healing" for lack of a better phrase. Thats to name a few things.

Anyhow, getting back to your TSH levels. Well, thyroid function abnormalities and HIV do seem to have some correlation: HIV itself, IRIS, etc. Your result doesn't necessarily mean there is an issue, but as you are concerned, it might be best to leave the Merck Manual on the shelf, and instead call your HIV healthcare provider, talk to them about your concern and redo the labs.

Take it easy.

https://academic.oup.com/cid/article/45/4/488/426848
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319269/

[Kirat]

27/10/2023 Update

I found out I'm deficient in Iron. My ferritin is 40. It was 172 in Jan. So, now I started to supplement it. Let's see if it's going to reverse my symptoms. Also my thyroid is high(6.17), probably because of this low ferritin, so I had to start Levothyroxine in a low dosage to help the iron absorption.
My next step is to know, with my doctor, what's causing my iron to go down.
Crossed-fingers!

[Kirat]

The iron supplements and levotyroxine helped a bit. I still have lack of air and my nose is always narrow for some reason. I wake up with dry throat and mouth, anxious and tired.
Today I went to the lab to be checked for celiac disease, search for hidden blood in stool and my iron panel again. Forgot to see the TSH. Anyway, no quality of life so far. Let's hope things will get better at some point.

[Tonny2]

         ojo.        Hi there!… i’m sorry that you are still having pronouns. I hope you feel better soon…hugs

[BubbaPat]

The iron supplements and levotyroxine helped a bit.

Howdy kiddo,
I've been prone to migraines and another friend prone to them as well suggested increase of iron intake.  While the supplement did help, finding foods rich in iron helped better. Now instead of lettuce, I use raw spinach as my leafy greens and I also mix it into any salad that I get.
MAYBE... do a quick web search and see what foods are there that you might like.  Maybe getting iron through your food might be better than the supplement.

As for the tests... hope you get good and helpful info.

Bubba hugs!!
Patrick

[Kirat]

Howdy kiddo,
I've been prone to migraines and another friend prone to them as well suggested increase of iron intake.  While the supplement did help, finding foods rich in iron helped better. Now instead of lettuce, I use raw spinach as my leafy greens and I also mix it into any salad that I get.
MAYBE... do a quick web search and see what foods are there that you might like.  Maybe getting iron through your food might be better than the supplement.

As for the tests... hope you get good and helpful info.

Bubba hugs!!
Patrick

Thanks, Yeah, I'm trying to eat foods rich in iron too.


Updates: my last cd4 percentage reduced from 23% to 21%. I'll discuss this with my hiv doctor next week.

[Kirat]

Had a talk to my HIV doc. She said my immune system is fine and we need to figure out why I'm so miserable. She requested me some exams again to see if it's any inflammation or metabolic problem. Like it has been for months by now, I feel shortness of breath, weakness, fatigue, brainfog, blurry vision, anxiety, etc.. no quality of life so far. But...let's be hopeful.

[Jim Allen]

I am glad that your HIV management is going well but sorry to hear you are continuing to struggle, and hope things get better soon.

Have you shared your HIV status with your psychiatrist/therapist? Are you taking any medication for depression?

[Jim Allen]

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.

I reread the thread and found the answer Lexapro.  How is this working for you, and is your psychiatrist aware of your new HIV diagnosis?