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Author Topic: Feeling miserable with arv  (Read 3683 times)

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Offline xiskza

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Feeling miserable with arv
« on: October 06, 2018, 04:29:16 pm »
Hi guys! So I was diagnosed hiv+ in August (along with hpv), a few days after my birthday. Since then I feel I've been numb to life.
 
This week was the first week of my treatment, have a very high VL of 450,000 and a low CD4 of 140. I must've caught hiv in the last year at max, since my June 2017 results were neg, so I wasnt only shocked that I got hiv, but at how quickly it destroyed my CD4s.

They gave me truvada + tivicay, saying there arent my options for me at my stage. I'm feeling so nauseous, almost to the point of throwing up. I take my pills at 9pm, and sometimes I wake up at night with insomnia and with a sense of trippin somewhere. During the day my nausea comes and goes, but my brain feels fuzzy or "pressured" almost constantly. I'm at the point of thinking of giving up, cant imagine living life every day with these horrid symptoms. Im so hopeless and I live alone so there's nobody to help me out whenever I'm feeling weak. I just dont know what to do. It doesnt help that I'm depressed and suicidal thoughts come and go.
« Last Edit: October 06, 2018, 04:59:39 pm by xiskza »

Offline JimDublin

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Re: Feeling miserable with arv
« Reply #1 on: October 06, 2018, 05:58:54 pm »
Hiya

Sorry to hear about the diagnosis. It can really be hard news to digest at first

Have you let your hiv doctor know about the feeling depressed? Are you in contact with any peer support?

Regarding the meds look other-than perhaps some minor settling weeks/months you should not be expecting any issues and if you do have them at that stage report it to your doctor.

As you having nausea, sleep issues you might want to swith to an AM dosing on empty stomach and drink plenty of water during the day see if that helps you settle in over the next while, of course report it to the doctor if no improvement over time or if its not manageable

Take it easy
Jim


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Offline xiskza

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Re: Feeling miserable with arv
« Reply #2 on: October 06, 2018, 06:14:30 pm »
Hi Jim

I didnt talk to my doctor about depression. I just didnt feel I could tell her everything, in fact I found the whole appointment a bit rushed tbh. She didnt even tell me when to take my meds, what I should or shouldnt do, etc. She only told me not to return there before my next appointment (28th November) unless I have severe symptoms like vomiting constantly or diarrhea for several days. I may not be at that stage, but surely feeling nauseated and foggy throughout the day isnt good.

I decided to take them at night because I felt if I had any side effects it'd be during sleeptime. So far I'd say the nausea is the worst so I'm unsure about switching it to morning - but then, taking them at night doesnt stop me from feeling sick during the day.

Right now I'm also taking Moxifloxacin at lunch to treat an intestinal infection. Its hard to tell what may be the root of the problem but sometimes I feel its too much medicine. I'm also on Atovaquone for my low CD4 count, and i'm taking Broncho Vaxom as a preventative measure because I have chronic tonsilitis - another reason why taking these huge pills is so difficult for me, I choke almost every time. The doctor made sure these medications wouldnt be a problem for me, and I have taken Brocho Vaxom before, and I was fine with Atovaquone before my treatment, so it has to be either Truvada + Tivicay, or  Moxifloxacin.

I feel like I cant wait until the 28th November for something to change, but I guess i'll duke it out and hope it'll go away. Right now I just dont see any light at the end of the tunnel.

Offline JimDublin

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Re: Feeling miserable with arv
« Reply #3 on: October 06, 2018, 06:56:32 pm »
Well the good news is that the antibiotics (Moxifloxacins)  is not for life, so that's good news and given the profile of the drug I would not be surprised if that is causing a lot of the issues.

Quote
I decided to take them at night because I felt if I had any side effects it'd be during sleeptime. So far I'd say the nausea is the worst so I'm unsure about switching it to morning - but then, taking them at night doesnt stop me from feeling sick during the day.
Quote
Right now I just dont see any light at the end of the tunnel.

Its early days and you are still mentally digesting this and physically adjusting, this is next to having to take (temporarily) antibiotics.

Give yourself time and yourself, the meds a chance.

As for the insomnia, if it does not settle down in a few weeks it can't hurt to try AM dosing for the Truvada + Tivicay, its acodotal advice with a touch of evidence.

Quote
I didnt talk to my doctor about depression. I just didnt feel I could tell her everything, in fact I found the whole appointment a bit rushed tbh

Okay yeah know how that is, my appointments are about 3 mins talk time, but that said I have nothing to say to them.

Perhaps write down the key points or questions you have for your next visit and tell the doc from the start of the meeting you have a few things to discuss.

Is your regular primary care doctor (GP) aware of you feeling depressed ? Because you might want to talk to them as well and see if they can offer assistance.

As for HIV you might want to look into if there are any peer support groups in your area. It can really help to speak to peers face to face

Jim
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Offline xiskza

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Re: Feeling miserable with arv
« Reply #4 on: October 06, 2018, 07:36:16 pm »
It was so rushed and quick that I forgot to talk about a lot of things. Including the fact that I probably should be tested again. I had a case of a broken condom about a week before starting treatment, the only intercourse I had since my diagnosis in early August.
I immediately told that guy to get PEP, but then it hit me that I could also get other std's.
I think i'll tell her during the November appointment, it would be so embarassing for our first meeting to be about a broken condom and me having to redo all the tests the docs performed on me in the meantime. I dont want to come across as promiscuous to my doctor who probably thinks I am with my HIV status.
I think me feeling I wont ever have a normal sex life again cause I'm paranoid that I'll get an std because a condom broke, is making me feel depressed too. Having HIV and HPV is enough, I dont need the third incurable one HSV in my life. I'll see if there are any support groups other there, but I'm quite antisocial so its hard for me to do these things. Not sure how an HIV could help me with depression but I guess that's another thing I'll have to mention
« Last Edit: October 06, 2018, 07:39:19 pm by xiskza »

Offline kentfrat1783

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Re: Feeling miserable with arv
« Reply #5 on: October 06, 2018, 10:47:37 pm »
Hi,

As other have said sorry to hear about your Dx but with the propers medication you will live a normal life.

I donít take the Rx you do so I canít talk to that but I will talk about the doctor.

My primary care doctor knows everything and I trust her completely. The infectious disease doctor that is in town and seen me when I was in the hospital wasnít the best for me. He was very short and didnít really give an option to ask questions but had no issues if I made an appointment to come in prior to my next visit.

 After a year I decided I needed another opinion and called Cleveland Clinic. They got me in within a few weeks and my first appointment was over 4 hours. I only expected 30 minutes but even follow up appointments are in total 45 minutes with a doctor.

It is also important to tell your doctors everything. They are checking for other issues and it does all correlate.

My advise, if you are able too, is find a doctor that you are comfortable with. Iíve finally got a good team and it has made things so much better. I now drive 2.5 hours one way for my appointment but Iíd drive it weekly if I had too.

Just hope you can get used to the medication. I take Atripla and Iíve learned what I can and canít eat with it.

But think god it this way, they caught it early. Things will improve.

Kenneth
12/05/2108 - CD4 174 (18%) VL - <20
08/28/2018 - CD4 166 (15%) VL - <20
05/08/2018 - CD4 106 (11%) VL - <20
03/05/2018 - CD4   90 (10%) VL - <20
12/11/2017 - CD4   60 (  8%) VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%) VL  54        (1.70)
05/11/2017 - CD4     2 (  1%) VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline JosephP

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Re: Feeling miserable with arv
« Reply #6 on: October 07, 2018, 12:21:55 am »
"They gave me truvada + tivicay, saying there arent my options for me at my stage." I wonder why not Genvoya? I've seen guys with 850K VL and CD4 4 whose HIV-1 treatment was started (and continue) with Genvoya. I started with Stribild and my VL was 79K. Just wondering, maybe it is not available at your locale!
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline MarkintheDark

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Re: Feeling miserable with arv
« Reply #7 on: October 07, 2018, 02:06:09 am »
Hi Xiskza - I'm sorry you've been having a particularly rough couple of months.  This is a time when you need all the support you can get.

I'll double down on what @kentfrat1783 said about finding a doc you can trust and who has time to listen.  I'm fortunate to have an ID doc who's not rushed and who knows everything that's going on with me physiologically and psychologically.  He respects that I'll sometimes disagree with him and that I'll have a good reason for it.  He doesn't require blind obedience.

Like @JosephP I wonder about "there arent options for me at my stage."  To my old, experienced ears that sounds like complete BS.  Given your VL and CD4, there are plenty of options, but as Joseph pointed out, they may be limited by what's available in your area.  "At your stage" has nothing to do with it.

Since you have a little time before your next "approved" appointment - even that arrogance galls me - perhaps you can pursue some kind of mental health services to help you with the depression and social anxiety.  Those two issues alone will eventually affect the way you approach and respond to your medical treatment.  Yeah, it's all tied together.

I hope I've been able to give you a glimmer of light at the end of the tunnel.
HIV dx - 02/93
AIDS dx - 07/01
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Offline CaveyUK

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Re: Feeling miserable with arv
« Reply #8 on: October 08, 2018, 01:58:26 pm »
Hi - Re-iterate what others have said, but just to say that the combo you are on is one of the highest rated and modern med combo's available, and whilst sleep disturbances are seen in rare cases (and like Jim says, you can try taking in the morning), the other problems you are getting are not widely reported which leads me to think it's one of your other meds - or an undocumented interaction between combinations of them - that are causing your problems.

I'm on that combo and have been since diagnosis. In the first few days I felt a bit light headed and had a headache - a bit like when you are going down with a bug - but it passed on day 4 and since then I have had zero side effects. Now there are others have have, but these do tend to be sleep related rather than feeling sick or exasperating depressive thoughts - side effects like that are more common with some other classes of HIV meds.

The advice is sound though. Talk to your doc about any issues, and if you can't talk to your current doc or they won't talk to you, fire them and get another one. A good doctor should be able to look at all your issues, your medication and lifestyle (without being remotely judgemental) and be able to work with you to help resolve any problems.

These days, for people newly diagnosed HIV is not only a manageable condition - it's an *easily* manageable condition, which should allow you to live a pretty much normal existence bar having to take a pill or two each day. Having to put up with continual side effects such as brain fog, nausea or digestive issues are what used to happen in the earlier days before the drugs were refined. If you have issues like that now, work with your doctor to fix them.

Finally, agree with looking for some help with the mental side of things. It will help the feeling that you are being proactive also, which tends to help instil a more positive mindset anyway.

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Offline harleymc

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Re: Feeling miserable with arv
« Reply #9 on: October 08, 2018, 07:46:24 pm »
Suicidal ideation is a severe symptom in any doctor's books.

Seek and demand help. 
If your own doctor doesn't take that seriously get a new doctor.

In the interim call a suicide prevention line.

Offline xiskza

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Re: Feeling miserable with arv
« Reply #10 on: October 09, 2018, 01:34:35 pm »
Thank you everyone.

Its Day 7 and it has been the worst day so far in terms of nausea and dizzyness. Has anyone ever had to take Avelox? I wonder if its that that is making me nauseous, cause its one of the common side effects. I take it at lunch and it makes my afternoon miserable. I have 4 more days of taking it so I guess I'll see if I get better once I stop taking them.

Really appreciate your support. I will give my doctor another chance in my 2nd appointment and see how it goes

Offline MadDog125

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Re: Feeling miserable with arv
« Reply #11 on: October 10, 2018, 12:19:19 am »
Antibiotics are more likely to cause the nausea. 

Offline xiskza

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Re: Feeling miserable with arv
« Reply #12 on: October 10, 2018, 06:39:49 am »
Does anyone know if its safe to take Omeprazol Mylan in the morning to protect my stomach, or does it interfere with my Truvada + Tivicay intake at night?

Offline JimDublin

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Re: Feeling miserable with arv
« Reply #13 on: October 10, 2018, 08:01:11 am »
I would suggest talking to your doctor or pharmacist before adding more pills, its such a combination of drugs you are taking (Some temporary thankfully) and they would be able to check for you and give you some professional advice.

For myself I check on drugs.com for interactions but I would stress that anyone else does check with a qualified doctor or pharmacist

Jim

 
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Offline xiskza

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Re: Feeling miserable with arv
« Reply #14 on: October 24, 2018, 10:29:56 pm »
Well it seems like it was Avelox that was giving most of the side effects of nausea and brain farts. I still get some nausea with my ARV's but its a lot more tame now.

Depression can be a bitch though, especially cause I keep going on online and reading about life expectancy for people who start treatment with very low CD4 counts (even though its a less than 1 year infection)... it just paints a very grey picture for me. I'd like to reach old age, but probably not gonna happen.
« Last Edit: October 24, 2018, 10:36:45 pm by xiskza »

Offline Tonny2

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Re: Feeling miserable with arv
« Reply #15 on: October 24, 2018, 10:53:27 pm »


       ojo.      Hello there, nobody set the living with HIV he was easy, but it will get better, trust me. For your nausea you can always try rating salty crackers.

Yes depression is a bad, especially when you have a negative approach Taurus your diagnosis. I was diagnosed 23 years ago with cd4=20, and I am still here. My last blood work results indicates a CD4 of 725, a CD4 percentage of 31 and undetectable. I've been taking the same medications for 12 years... All that you had to do if I may, have discipline in taking your medications as order and have a good attitude towards life, because we cannot change the fact that you are hiv-positive now. I invite you to be a fighter and think positively about the future, because if you are disciplined and a good attitude you will be around for a long time... Best of luck, please keep us posted on your progress... hugs.                          ojo

Offline fabio

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Re: Feeling miserable with arv
« Reply #16 on: October 25, 2018, 06:50:35 am »
I can relate a lot to you.  I have a year now that I know my status and,like you,I have an hpv confection. Actually that's how I learned I have hiv as well.
It's hard to digest,and the pills seem like a confusion at the beginning,but it does get better.
People take pills for all sorts of things and are bound to do so. But that doesn't mean you shouldn't live your life normally (work,study,marry),you are beyond just a negative or a positive. There are people in the world who have little to no.means to have a functioning life for all sorts of reasons and yet they live to the fullest. That's what you should do as well.
As for nausea,you can tell your hiv specialist about it so you can get either better meds that suit you,or some other sort of doctory thing (I'm uneducated,lol).

Offline JimDublin

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Re: Feeling miserable with arv
« Reply #17 on: October 25, 2018, 07:14:33 am »
Well it seems like it was Avelox that was giving most of the side effects of nausea and brain farts. I still get some nausea with my ARV's but its a lot more tame now.

Glad to hear that things are a lot better now you are off the Moxifloxacin antibiotics. Give yourself time to heal. If you keep having a bit of nausea you might still want to switch to an AM dosing on empty stomach of course report it to the doctor if no improvement over time or if its not manageable

Quote
I keep going on online and reading about life expectancy for people who start treatment with very low CD4 counts

Sounds like a bit of biased reading .. I mean your looking at a very narrow few publications,  the opposite "Ideal" outcomes / studies are claiming we will outlive out HIV negative peers.

Now I have no doubt that the average life expectancy of population living with HIV+ has dramatically increased, this is a fact nobody is disputing. Just looking at the HIV population from the mid 90's on early treatments that are still here today, and that  even with lower counts or late starting had a 5 year diffidence, its not much and today for anyone starting out its not the 90's in 2018 so we have far more advanced treatment, understanding of treatment, and the management of comorbidities.

That said it does not mean your life expectancy will be 90 years old either, like any group of people some will live to 100 and other just 60, but my take on this is just live your life, manage any comorbidities if you wish to increase your odds of a long life. Stop focusing on bad news of putting yourself down on limited publications about theories that are outside your control.

Simply put before you had HIV nobody could tell you how long you were going to live and, having HIV did not change that, so no point being frustrated/stressed or depressed by it

Jim

Very little Life Expectancy difference at all in some groups. 
https://www.poz.com/article/life-expectancy-24972-2090
Related in full: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0081355

Life expectancy in older people with HIV could EXCEED the average Ė as long as ART keeps working  :) http://www.aidsmap.com/Life-expectancy-in-older-people-with-HIV-could-exceed-the-average-as-long-as-ART-keeps-working/page/2551483/#item2551485


START study shows that people starting HIV treatment earlier have better quality of life
http://www.aidsmap.com/START-study-shows-that-people-starting-HIV-treatment-earlier-have-better-quality-of-life/page/3041727/

http://www.aidsmap.com/Life-expectancy-in-HIV-positive-people-in-the-US-still-lags-13-years-behind-HIV-negative-people/page/3040314/ Now the headline is 13 years however the devil is in the detail as this 1 study is not taking other life factors into account and when they do take this into account could only find found a 5 year difference, not 13 as the the headline and intro says, now they also did not factor in all the risks and reasons, they looked at 1996-97 and 2011. I don't live in the past things change, i can reduce my risks and who is to say i could be hit by a bus in the morning or perhaps not.  So overall its very interesting but something to read and than move on.

https://www.poz.com/article/morning-dosing-tivicay-may-ease-insomnia-side-effect

« Last Edit: October 25, 2018, 07:19:38 am by JimDublin »
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Offline CaveyUK

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Re: Feeling miserable with arv
« Reply #18 on: October 25, 2018, 01:58:06 pm »
Depression can be a bitch though, especially cause I keep going on online and reading about life expectancy for people who start treatment with very low CD4 counts (even though its a less than 1 year infection)... it just paints a very grey picture for me. I'd like to reach old age, but probably not gonna happen.

The depression you need to worry about is the type without any clear reason for it. Becoming miserable about life expectancy due to reading online articles is the sort of cause you can resolve quite easily :)

I did the same thing, as many did. Bottom line is that now you are on treatment, your body will be repairing itself and as long as you stay adherent there is no reason you won't live as long as you would have done if negative. The additional monitoring and health awareness may even mean you live longer!

If it is the case that you caught the infection within the first year, then that's only good news as there has been less time for damage to accumulate. I was diagnosed at 160, but reckon it was a number of years before I found out about it. Right now, I'm UD with CD4 back into normal range and looking forward to a long life. You'll get there too.
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Offline xiskza

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Re: Feeling miserable with arv
« Reply #19 on: October 28, 2018, 04:18:31 pm »
Thanks for the replies. The mind is a powerful beast, and I've struggled with depression I think pretty much since my teenage years. Sometimes it gets better, but the diagnosis and treatment has been hard to deal with and navigate.

I'd like to ask you guys a question, since this topic didnt come up with my doctor (like a lot of things like if I needed to take my meds with food or not  ::)). I take my meds at 9pm. Today, where I live, we began winter time, so the clocks are back one hour. Supposedly I need to take them at 8pm now to make a full 24hr cycle, but I really want to keep the 9pm time during winter too. Can I have a day where I wait 25 hours to take meds? Thanks everyone

Offline beanstalk

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Re: Feeling miserable with arv
« Reply #20 on: October 28, 2018, 05:12:41 pm »
Thanks for the replies. The mind is a powerful beast, and I've struggled with depression I think pretty much since my teenage years. Sometimes it gets better, but the diagnosis and treatment has been hard to deal with and navigate.

I'd like to ask you guys a question, since this topic didnt come up with my doctor (like a lot of things like if I needed to take my meds with food or not  ::)). I take my meds at 9pm. Today, where I live, we began winter time, so the clocks are back one hour. Supposedly I need to take them at 8pm now to make a full 24hr cycle, but I really want to keep the 9pm time during winter too. Can I have a day where I wait 25 hours to take meds? Thanks everyone

Yes. I asked about this to a doctor last week and he said there wouldn't be a problem. He also told me that I didn't need to take them religiously at the same time, if for example I take them before having lunch, I don't necessarily have to have lunch at the exact time, I can just take them whenever I'm finished with it as long as it is in the same 4-hour period. I will still take them at the same time (I use an app to warn me and it will make my phone vibrate every 5 minutes which is annoying) but for the change of the time it will be 100% OK

Offline MarkintheDark

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Re: Feeling miserable with arv
« Reply #21 on: October 31, 2018, 06:34:52 pm »
Hi xiskza.  Glad to hear the side effects of the other med has subsided.  I know that things like that can throw me for a loop sometimes.

A few things that might help with the other issues:

On the depression front, I've used a site https://www.depressionforums.org/forums/forum/12-depression-central/ for a couple years.  They're HIV friendly.  I'm completely out with them.

In a broader sense, I'm still concerned about your OP describing feeling rushed, no getting information on dosing, not feeling you could tell your doc everything, etc.  For me, the anxiety alone would be my impetus to look for a doc elsewhere.  It's not a matter of her being "right."  If she's not meeting your needs - as clinically competent as she might be - she's not right for you.  Perhaps look at it as a way of taking charge of your own care. 

(I had a particularly rough hospital stay this month, was in pain, and had a doc who became defensive, paranoid and condescending when I uttered the phrase "pain management."  As sick as I was, I eventually croaked out I refused to deal with her any longer, would not engage her in an argument, and that I wanted a new physician.  My thinking was that I didn't give a damn about her paranoia or that she was offended.  I WAS THE PATIENT and it was MY CARE.  Best move I made.)

I don't know where you live, but I'd suggest making contact with an HIV agency in your area.  In the States, I'd suggest AHF (AIDS Healthcare Foundation).  They're specifically focused on our care, including medical and psychological.  Nor will they ever blow you off with "I don't want to see you until...."

You'll also have the benefit of a case manager who can help you navigate your needs and advocate for you when there are bumps in the road.  In my case, for example, I hadn't found the right therapist immediately, but with their help I eventually found one that was a good match for my needs.

You've been dealing with a lot medically and psychologically.  Of course you're stressed out.  Of course it's taking its toll.  You've also conquered some demons.  I'll give you a pat on the back if you can't give yourself one right now.

If it helps, post-discharge I was told bedrest for an effin' MONTH...just as it felt everything else I had to manage had gone to hell.  I've hated it.  I've fought it...and discovered I'm in no shape.  And yes, tbh, I've had suicidal thoughts during these past couple of weeks.  I also have a therapist who's done phone sessions b/c I can't get to his office...and I've been able to be completely honest with him.  Just letting those thoughts see daylight has kept them from bouncing around in my head.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline JosephP

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Re: Feeling miserable with arv
« Reply #22 on: November 11, 2018, 12:36:52 am »
Depression can be a bitch though, especially cause I keep going on online and reading about life expectancy for people who start treatment with very low CD4 counts (even though its a less than 1 year infection)... it just paints a very grey picture for me. I'd like to reach old age, but probably not gonna happen.

SAYS WHO? Exactly the opposite of what my ID doc told me during our first appointment!
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline xiskza

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Re: Feeling miserable with arv
« Reply #23 on: November 13, 2018, 08:47:56 pm »
Im gonna see still my doc this 28th and I'll see how it goes. Hopefully the appointment will be less rushed.

In the past few weeks I've noticed my right thumb has this tingling prickly sensation, and its warmer than my other fingers. Its not something painful but its something I notice a lot whenever I touch it. Now I know HIV and anemia can lead to this, but can it be something else? Should it be something I bring up with my doc?

Offline JimDublin

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Re: Feeling miserable with arv
« Reply #24 on: November 13, 2018, 09:10:04 pm »
I can think of half a dozen reasons off the top of my head. None of them we could either dignoise or treat online.
 
To be honest when I'm feeling sick or have an issue I don't wait arround for my next clinic visit I simply go to the GP, same as HIV negative folks would.

Jim
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Offline xiskza

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Re: Feeling miserable with arv
« Reply #25 on: November 28, 2018, 02:12:51 pm »
You may be right Jim. I did have my appointment today, and I forgot to bring it up, maybe because it seems my anemia has finally stabilized.

Here are my updated results:

Viral Load: 750
CD4: 257

I'm happy with where things are heading, my doc says than in January when I get my blood tested again, I should be able to switch to one pill a day. I wonder what that might be? Hopefully not bigger than Truvada.

Thanks for all the messages and PM's, such a nice community here. I'm feeling unusually positive today :)

 


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