Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
October 01, 2014, 12:44:25 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 640685
  • Total Topics: 48666
  • Online Today: 205
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 5
Guests: 167
Total: 172

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Brother just started treatment  (Read 10421 times)

0 Members and 1 Guest are viewing this topic.

Offline sisterr

  • Member
  • Posts: 34
Brother just started treatment
« on: July 05, 2010, 08:04:01 AM »
Hello, from South Africa - for almost everyone else we're soccer world cup land at the moment... but I've been experiencing a big dose of reality since June 15, when my brother called to tell me he'd just found out he is positive and that he has pcp pneumonia. thank you everyone for posting and particularly whoever started this website, i am not sure i would be able to string a sentence together here if i couldn't get the info and the support that comes through in the posts even if they are not specifically directed anywhere!

So... his cd 4 is/was 12 and his VL 2.5 million and when i got here (i live in another city) i had to take him to hospital - one night and he was getting worse. the hospital stay helped him to a point, but then he got Stevens Johnson Syndrome from the bactrim. I am really glad we are through that - it was not pretty...

he's on Wellvone now for the pcp and that seems to be clearing up nicely... because of his state of health and then the SJS he only started arvs on Wednesday. i have been feeding him the info and posts i read here... but we are on day 6 of the arvs (Stocrin -Sustiva- and Truvada) and the side effects so far seem to be that he is a little despondant, he's sleeping a lot in the day - but restless at night. I am quite happy that he is sleeping at all - because i don't think he slept at all on the bactrim - even with the sleeping tabs!!! he has been itching marginally, and then last night he started to get a rash on his thighs. the rash is still there this morning and he lost his appetite too. no nausea yet. and he hasn't had any hectic dreams.

so if you have any info you could share with me or just a message for him to hang in there, that he isn't the first or last that will feel this way and get better - i'd appreciate it... and he may even crack a smile.

thanks again to everyone out there

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Brother just started treatment
« Reply #1 on: July 05, 2010, 11:00:23 AM »
It sounds like he's getting the exact care that he needs. A combination of the right medications along with your love and support will get him through this.

Stocrin and Truvada will can get a viral load down very efficiently, which will enable his immune system to rebuild.

It's so great to hear that you are helping him during this difficult time, please keep us posted.

Offline mecch

  • Member
  • Posts: 11,771
  • red pill? or blue pill?
Re: Brother just started treatment
« Reply #2 on: July 05, 2010, 01:33:24 PM »
Hi sisterr,
So touched to hear that he has your love and help!
Wishing you both a speedy recovery for your brother! How old is he, may i ask?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #3 on: July 05, 2010, 02:19:13 PM »
thank you inchling and mecch for your support...

we are having a good night so far... he ate at 6pm, and he is drinking water with a little isotonic cooldrink in it. was a bit uncomfortable but i gave him a bit of a rub and 'finding nemo' is on tv - so we both laughing... arvs at 9pm (it's 8.15pm here now)

mecch:
he is 3 years older - 42 years on the planet

Offline phildinftlaudy

  • Member
  • Posts: 2,965
  • sweet Ann what you think babe...
Re: Brother just started treatment
« Reply #4 on: July 05, 2010, 02:22:41 PM »
Hi sisterr -
It's great that your brother has your support.  He is in the right place and sounds like he is getting great care.  Finding Nemo will definitely go along way towards improving one's mood   :)   I liked the seagulls (I guess that is what they are) continuallly saying "Mine"  "Mine"

Welcome to you and your brother --- I look forward to hearing updates and you all being a part of the Forum Family for a long time to come.

Best to you --- Best to your brother.

Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #5 on: July 05, 2010, 02:54:11 PM »
thank you phil - look forward to being part of the forum family for a long time too - and looking forward to my brother reading all the posts for himself and setting up his own profile... and hopefully learning lots and being able to support other people here too.

the seagulls are cool - i really like the star fish in the tank...

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #6 on: July 06, 2010, 02:39:31 AM »
Stocrin and Truvada Day 7

He didn't sleep - actually he did sleep - but he thinks he didn't
He doesn't want to eat - but i got an apple in,and now i am going to try something else
Then the morning meds (Wellvone and Pullmison/Prednisone and Cytotec, Liver vitamin, Multivitamin)
Rash is there on tops of legs and arms - but not hectic... also coming up on his back... but not hectic.

Anyone know at what point his despondency is a side effect of the treatment? When is the depression clinical?

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #7 on: July 06, 2010, 12:58:31 PM »
having a bad night - it's 6pm (he'll take the stocrin and truvada again at 9pm)... dizziness and nausea and discomfort - he can't really articulate how he is feeling - but he certainly isn't feeling well...

it seems to be coming in waves - which is a change...
then he says he is feeling much better... for 10 minutes
then he starts writhing again... for 10 minutes

is this how it goes? and will this subside?

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #8 on: July 06, 2010, 01:45:23 PM »
so... he is feeling better now - and it's been for 15 minutes... seems he is having anxiety attacks more than anything else. and effects from getting strange sleep. will call the doc in the morning... and hopefully the night will not have too many bumps.

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Brother just started treatment
« Reply #9 on: July 06, 2010, 02:41:27 PM »
I personally have not been sick from PCP or SJS, other members here have and maybe they can chime in with their experience. But I would imagine that what he is going through is perfectly normal during this period that his body is beginning to heal.

The good news is that antiretrovirals work very well, especially the ones we have at our disposal now. I assume they did a resistance test to make sure that he has no resistance to Sustiva or Truvada? This would be the only thing I can think of that could be a complication. Assuming his virus has no resistance to the HIV meds he is taking, his viral load will continue to disappear until he is undetectable.

Make sure once he is better that he understands how important it is to continue with the HIV meds and not to skip doses. This is the only way to keep one's health up.

Your brother's case should serve as a lesson to many others; by getting tested and knowing one's status and with access to health care and HIV meds becoming as sick as he has can be totally avoided.

Please keep us posted and hang in there.


Offline mecch

  • Member
  • Posts: 11,771
  • red pill? or blue pill?
Re: Brother just started treatment
« Reply #10 on: July 06, 2010, 03:11:06 PM »
Can he get a script for some anti-anxiety meds to help him through the next few weeks/months?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #11 on: July 07, 2010, 05:25:28 AM »
Thank you Inchlingblue and mecch.

Fortunately his doctor is an hiv... not sure if specialist is the right word, or if he'd say he is a specialist (it's not on his card, but that may be because even in this country where we have an estimated 5 million children under the age of 16 looking after poz parents, people would probably not keep the card because of those 3 letters - hiv!). Needless to say, this doctor has only been his doctor since June 15... and i am not sure if he did a resistance test, but i have assumed this. i will check this morning - have smsed the doc and he will call me. Reading the posts in these forums - have established we need to understand his labs - and will ask the doc for them and talk to him about them and get my head around the info. For example i don't know what his percentage was/is...

He seems to understand about the meds and not skipping doses. We both know people who are on antiretrovirals, so it is frustrating that we got to this point of the story, before he tested. i know a few other people who have tested, and have not started treatment, and i have already engaged with them to build up their knowledge - like surfing this site and others, finding a doctor that deals with hiv and to really really really exercise all the options we now have to treat this. And to start NOW.

That said...

He managed to sleep last night - not for long. About 4 hours. And then in and out of sleep. My version would be that he slept more than that - although it was interrupted. The side effects do seem to put him into a sort of head funk at night with anxiety, which doesn't look like an experience i'd like to be having. It's like he is having a bad trip. He accomplished sleep by taking the sleeping tablet and the pain pill at the same time, so i have now removed those till i have spoken to the doc to see what he can take! Perhaps he will get an anti anxiety prescription.

To keep me on my toes... he shot out of bed this morning and came to sit on the couch in the lounge for breakfast - which is a first since he got out of hospital!!!!!!! (2 weeks ago) He never had an appetite really - but i got him to eat 2 apples and 2 hard boiled eggs and drink tea and ensure. His multivitamins and the Wellvone. I have been trying to get him out of bed - but he hasn't been interested. And then this morning there he was - suddenly on the couch. So i had to blanket him, because it is winter and his thermostat isn't really working anymore and it is cold here at the moment. He's gone back to bed and is napping. He looks way better than he did last night.

It's interesting for me that he gets most anxious at about 6pm - 3 hours before he takes the Stocrin and Truvada. And then the anxiety escalates - he says because he knows he won't sleep. And i am sure also because he has a lot on his mind besides sleep!

Being pattern seeking... since returning from the hospital and the PCP and Steven's Johnson Syndrome subsiding, he has been steadily improving - though it is baby steps. And it does seem after every really bad day (and i have already started differentiating between good and bad days, which feels like there has been progress out of bad day bad day bad day - or maybe my frame of reference is just more inclusive now!), and what i mean by really bad day is that a really bad day is worse than the day before, which may technically have been a good day - so it isn't really that bad a day (sigh)... after a really bad day, he seems to have a really good day. Which is what's happening today again. Like it's the best good day he has had so far, so each good day gets gooder and gooder! This only 8 days into treatment.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Brother just started treatment
« Reply #12 on: July 07, 2010, 09:33:07 AM »
Hi Sister, I haven't written to you yet, so welcome to the forums.

It sounds like he's becoming anxious before taking the meds because he's probably afraid of possible side-effects, and who can blame him after having SJS. SJS is nasty business. The dreams and sleep-disturbances that can accompany the Stocrin are no bed of roses either.

Well, maybe in a way Stocrin IS a bed of roses - you have the beautiful perfume of what it does to the virus, but you also have the thorns of side-effects.

The sleep disturbances he's been experiencing may well go in time, and it sounds like it's already starting to abate. He should stick with it for a little while longer, but if it doesn't continue to improve, he should find out what else is available. There are other combos he can take, but I don't know what's available in SA.

I'm not sure why you've taken the sleeping tablet and pain-killer from him - if they're helping him get some sleep during this initial adjustment phase, why not take them? If he's only taking one of each and/or not exceeding the prescribed dosage, it's unlikely to do him any harm. He really needs good rest right now.

I'm so glad he's got someone who loves him taking care of him. He must really treasure you. And I'm glad to hear he seems to be having the first good day in a while.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #13 on: July 07, 2010, 10:24:40 AM »
Took the pills away motivated by fear (of SJS, of toxic overload stories and how other medication interacts with the arvs... knee-jerking all the way...), but got hold of the doc today and have anti-anxiety meds and different sleeping tablets.

PLUS -

The good day continues... he asked for KFC for lunch!!!!!!!!!!!! And he has been moving around, AND we had a strange giggly moment just now, which he initiated about the trees blowing outside. i am definitely on the 'stick with it for a little while longer' page. And he has a good doctor, so should he need to change meds - there is a certain level of trust, which helps. He is stronger than he was this time last week... so am hoping that as his sleep gets better, he'll become stronger and stronger

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Brother just started treatment
« Reply #14 on: July 07, 2010, 10:58:23 AM »
He is stronger than he was this time last week... so am hoping that as his sleep gets better, he'll become stronger and stronger

And he very likely will. Hang in there!

Glad to hear he's getting his appetite back. That will go a long way to helping him re-gain his strength too.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Brother just started treatment
« Reply #15 on: July 07, 2010, 11:14:05 AM »
It's so nice to hear about his progress, you're taking such good care of him.

His CD4 percentage is likely to be very low at this point but it would be good to know the number since this is a good barometer of immune health and you will have something to compare as a baseline as it begins to improve. Sometimes if it's taking a little longer for CD4s to improve, the percentage can give a fuller picture of what's going on.

Once a person's CD4s get to such low levels it usually takes a longer time to see a full recovery but there are so many variables involved, including an individual's genetic makeup, that it's hard to predict. I know someone who was down to about 3 CD4s and has recovered to over 500 now, others are not so lucky. Anything above 200 would be good.

I always get photocopies of my lab reports when I go in for my visits but maybe not all doctors are as amenable as mine.

Stay strong and thank you for sharing your story.

Keep us posted!
« Last Edit: July 07, 2010, 11:15:43 AM by Inchlingblue »

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #16 on: July 07, 2010, 11:22:46 AM »
thanks for the support!

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #17 on: July 09, 2010, 02:52:45 AM »
And here we are on day 10! the rash he had on his arms and legs has gone... and nothing on his chest or back... at the moment. he is on anti-anxiety medication and what may have been panic attacks have subsided these past two days. he is also moving around more and talking about working through some emails from work.

where he normally went into fugue at 6pm every night (he takes arvs at 9pm), last night there was only a slight hiccup at about 10.30pm. new sleeping tablet gets him 4 hours of sleep before he wakes - and still not able to sleep again.

he's eating

and side effects currently seem to be getting a bit spacey now and then and that hung over look in the morning.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Brother just started treatment
« Reply #18 on: July 09, 2010, 08:22:15 AM »
Onwards and upwards! At day 30 you'll both probably be wondering what all the fuss was about.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #19 on: July 09, 2010, 04:35:39 PM »
Onwards and upwards definitely - am already feeling sheepish about how ignorant i was about how far the meds have come, and how treatment has progressed... can't wait to wonder about what all the fuss was about. he actually said to me earlier 'i wonder why i went off like that the other night.'

pleasant evening, it's been a good day - he got a bit fuzzy mentally in the middle of it - but other than that he is up and drinking fruit juice straight out of the bottle at the fridge for the first time in about 25 days!

QUESTION: he's getting heartburn - is there any reason he can't use an antacid, like eno sparkling antacid... can't find anything saying he can't on the insert for the arvs... but i seem to remember the doc saying something about antacids - or it might have been about the cytotec that he took after the SJS to help his stomach... there was so much info that day - and i couldn't write quick enough.

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Brother just started treatment
« Reply #20 on: July 09, 2010, 04:48:43 PM »
On the aidsmeds.com page for Atripla (which is the  same as stocrin and Truvada) it says this:

The following medications should not be taken while you are being treated with Atripla:
Antifungals: Vfend (voriconazole)
Antipsychotics: Orap (pimozide)
Acid reflux/heartburn medications: Propulsid (cisapride)
Heart medications: Vascor (bepridil)
Sedatives: Versed (midazolam) and Halcion (triazolam)
Antimigraine medications: Wigraine and Cafergot (ergot medications).
Herbal products: St. John's wort (or products containing St. John's wort.


LINK:

http://www.aidsmeds.com/archive/Atripla_1613.shtml


There's also a section (Check My Meds) where you can put in all the different meds and it will tell you if there are interactions:

LINK:  http://www.aidsmeds.com/cmm/

There was a recent documentary called The Lazarus Effect which you might find informative, it's available for viewing online:

http://www.youtube.com/watch?v=l16YH6xCN4c

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #21 on: July 09, 2010, 05:00:14 PM »
thank you inch - been looking at the check my meds page - that whole wing of info i hadn't found yet!!!

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: Brother just started treatment
« Reply #22 on: July 09, 2010, 05:54:15 PM »
Hi Sisterr, just read the thread and am sending some Midwestern mojo to both of you.  I hope things keep getting better -- the last few posts sound encouraging. 

You're a regular Florence Nightengale.  Thanks for joining us, and keep us updated. 
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #23 on: July 10, 2010, 07:18:10 AM »
yay for the Midwestern mojo! and thank you for the welcome.

we had a protracted battle this morning. he is of course feeling so much better that he wanted to go out for breakfast. i wanted to keep him in the house at least until i could get him a giant oxygenated ball to go out in public in (until his cd4's are over 200 at least, i told him and myself). but then i folded and said okay. so we went out for breakfast and i have to admit i was just slightly offended!  i have been offering him eggs for breakfast but he kept asking for pronutro - and there we were in the restaurant, with him having eggs and bacon with toast and coffee. needless to say i thought he was gonna throw up, but he didn't. so i paid and we came home. he wanted to go to the mall and get a book - which we had another protracted battle about... i don't really do malls, certainly not with the madding crowd. and the crowd is really enormous at the moment with lots of soccer fans fighting over the last still mineral water and Levis in the city. so we came home and he is sleeping the activity off now.

i don't know if i should have cloistered him for longer, but getting back in the saddle is probably his next step, and far be it for me to stop him from getting well again!

this morning he just had that hung over look and mood going... and sometimes he fudges his words. thought he might get anxious going out, he didn't... anxiety seems gone. don't think i would have encouraged him to continue with treatment, or continue encouraging him if i never found this forum, or had his docs support. thank you everyone.

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #24 on: July 10, 2010, 07:56:29 AM »
And thanks Inchling - i finallygot time to view 'The Lazarus Effect' on Youtube.

Here's the link to a South African commercial (Selinah) for one of the organizations here:

http://www.youtube.com/watch?v=tdolrSzXj4A

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Brother just started treatment
« Reply #25 on: July 10, 2010, 10:15:40 AM »
sister,

You really don't need to keep him locked up in the house. He's on antibiotic prophylaxis so stop worrying so much. Outings will be good for him as long as he doesn't over-do it and get too tired out.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Brother just started treatment
« Reply #26 on: July 10, 2010, 11:00:18 AM »
And thanks Inchling - i finallygot time to view 'The Lazarus Effect' on Youtube.

Here's the link to a South African commercial (Selinah) for one of the organizations here:

http://www.youtube.com/watch?v=tdolrSzXj4A

Wow, that commercial was very powerful! Selinah's smile spoke volumes.

 

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #27 on: July 12, 2010, 03:32:40 AM »
DAY 13

He's out of bed and moving around this morning - and his appetite is back. He slept through the night, 8 hours at least! YYYYYYYAAAAAAAAAYYYYYYYYY!!! We went out yesterday and Saturday, and he's itching to go somewhere today - so things are looking up. The side effects seem to be subsiding... and those few hectic days, seem well worth it now, looking at him. He's been surfing the site himself this morning, so i am going to thank everyone for the support this far - and hop on over to 'Someone i care about has HIV' in future.

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Brother just started treatment
« Reply #28 on: July 12, 2010, 10:55:28 AM »
To use your word: YYYYYYYAAAAAAAAAYYYYYYYYY!!!

Remember you can always PM anyone if you like.

It's so nice to hear stories of people caring for each other. Big hug to you, sisterr.

Offline metekrop

  • Member
  • Posts: 354
Re: Brother just started treatment
« Reply #29 on: July 13, 2010, 08:29:22 AM »
 I hope with your help and medication, he would be okay.   I think may be the same thing happen to me too.  But thanks to my wife and the availability of medicine I can fully recover and back to my regular life.  The medicine are also working fine to me.  I have no side effects nor any anxiety issue. CD of 12 and the vl of 2.5 million were very much frustrating numbers.
« Last Edit: July 13, 2010, 08:55:16 AM by metekrop »
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797, UD

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #30 on: July 21, 2010, 05:34:53 PM »
 :) :) :) ;D :) :) :)And just as suddenly he has reached day 22... looking back the first few days just watching the side effects was unpleasant - there were three days of no sleep, muscle pain, headaches, extreme anxiety, the rash - but not hectic (more the possibility of SJS trying to surprise him, but it didn't happen again), the squirts (eeewwww), nausea, and basically a really really bad trip, which i don't think he could articulate in words - or understand.

we ended up back at the doc last week - post nasal drip and thrush came back, plus he started coughing... so got diflucan for the thrush, and after 3 days and just a pill a day the thrush left him Sunday (he last had thrush for 15 days with the diflucan, just out of hospital and before starting sustiva and truvada-two days into treatment, and still on the diflucan the thrush cleared)... antibiotic for the chest - the doc said there was something trying to start up there - and finishes antibiotic tomorrow, cough gone and post nasal almost negligible now.

he still feels incredibly weak - any activity has to be short and sporadic - which is frustrating him. think he thought he would bounce back much quicker - but from where i am sitting he is looking so much better. and his energy is up, but his strength still down... also being more active, i think he sleeps better... although the anxiety meds are also helping, i am sure. he's sleepin right now without a sleeping tablet, taking the anti anxiety this morning and this evening. his skin looks unbelievable. this morning i came up with all sorts of excuses to fuss around next to him, to make sure, before i commented. his skin looks brand new! its been looking much better - but today, it's brand new!!!

he spoke to the doc about the anxiety issue and not sleeping - he definitely felt those side effects - and the doc explained because he is on tb meds, sustiva and truvada are the best option, but once he is off the tb meds they could definitely look at trying another combo if he wasn't happy. and that if it was totally unbearable they could discuss it again in a week. just talking about it and understanding he had options seemed to lift 50% of his stress... also the doc's reaction to the return of the thrush and his cough reassured him - no it's not good that you're getting sick... but it doesn't mean we can't do something about it. he's frustrated by having to take the tb meds, as he didn't test positive for tb... but tb goes hand in hand with hiv here, there are even more people infected with tb... and we have all sorts of mean drug resistant strains... and his low cd4 count and high viral load... could mean it is hiding, plus... he will be exposed to it when he goes out anywhere, it's that prevalent. the tb meds are quite something on their own, but he's got a month left of this lot and then he goes onto the 'lighter' ones.

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: Brother just started treatment
« Reply #31 on: July 21, 2010, 05:58:40 PM »
This is all very good news.  Your brother is improving and the CD4 gain may take a while, but just because it's low doesn't mean he can't be healthy while it's improving.  I'm so glad to hear that he's doing better and I sure hope he appreciates you taking such a keen interest in his health.  Some of us don't have anyone who cares at all much less on the level that you seem to be keeping up with him.

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #32 on: July 22, 2010, 01:54:23 AM »
Thanks Hellraiser, love the good news!

He is improving, and i am trying not to obsess about the numbers, but i am wondering what they look like already - and what they will look like when he does his next lab tests... that test which does his percentages and the cd4 and cd8 and viral load and and and is really expensive here, so will do it after... not sure if the doc said 6 or 8 weeks. but it's written down somewhere.

He definitely appreciates me - although i am going through a learning curve, that ultimately it is his body and that he will continue improving on his terms and not (necessarily totally) on mine... My way (and sometimes i can be Stalin) is far more calorie and easily-accessible-protein dependent, with lots of steamed vegetables and hours of thought-provoking macrobiotic sums and at least one of those protein shakes daily, and probably no refined sugar or even sugar at all - whereas his way leans more to the choc banana double thick and ribs.

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: Brother just started treatment
« Reply #33 on: July 22, 2010, 07:21:44 PM »
I'd start thinking in months and not worry too much about the numbers.

I just had dinner with a friend who started treatment with a CD4 count of 10 more than 10 years go. His immune system is in good shape now and so is he.

- matt
"The object is to be a well patient, not a good patient"

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #34 on: July 23, 2010, 08:23:36 AM »
thanks matt

that's great advice... being at the beginning of this journey we're still thinking in days and almost almost weeks! will breathe a little more and think bigger!

hope you had a fabulous dinner and it's always wonderful to hear good news about friends.

x sisterr

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #35 on: July 29, 2010, 08:58:09 AM »
And just as suddenly one month into Stocrin(Sustiva)/Truvada treatment...

Sustiva side effects subsided - still getting a little dizzy and feeling a bit wobbly, but he has been in bed for 6 weeks!!!

He's been into the office and is managing 2 hours a day there and then working at home. He is fortunate to have a truly supportive work environment. He told some people, didn't tell others... and his boss and his colleagues have been really incredible. The added activity and extra mental work also seems to dampen the side effects of the Sustiva - or it's just the side effects tapering off over time - because he isn't as mentally foggy as he was. Or it's because his viral load has been hammered by the meds... Or... Or... Or... Whichever way i look at it - he is doing way way better, and looks it too!

GOOD LUCK TO EVERYONE WHO DOES DO THE SKY JUMP AND ANYONE WHO WATCHES THEM DO IT - LOVE ALL OF YOU HOOLIGANS.

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Brother just started treatment
« Reply #36 on: July 29, 2010, 09:03:16 AM »
That's so great to hear! It's another example of the "Lazarus Effect."

When does he go in for blood tests to see his new numbers?

Offline metekrop

  • Member
  • Posts: 354
Re: Brother just started treatment
« Reply #37 on: July 29, 2010, 09:14:29 AM »
Great development on the situation of your brother, sisterr.

By the way you need now to invite him into this forum and we will welcome him with big applaud.

 ;D
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797, UD

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #38 on: July 29, 2010, 09:26:31 AM »
Thanks Inchling. New number day is 16 August. It's circled on the calendar.

Thanks metekrop. He'll get here... but I gotta let him get here on his own - He doesn't really take instruction well and I have exhausted him these past few weeks demanding he drinks more water, puts socks on and eats more protein... He already trawls the site guest-like, without posting.

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #39 on: August 08, 2010, 12:48:10 PM »
Hello everyone

My brother is still improving by the day. On Thursday he started getting a rash on his back... which he only showed me yesterday... He wants to wait till Tuesday before we contact the doctor (Monday is a public holiday here - Women's Day).

It looks a bit like shingles - but it's not as virulent as the pics I looked at online, nor is it doing the band around the waist thing, and his stomach is clear. Just really tiny pimples with white heads at this point, and yesterday they were bigger and redder. He doesn't have any other symptoms... Might be some sort of Stocrin and Truvada (Atripla) thing... or perhaps some other IRIS sort of thing? He is into week 5 of treatment, and in retrospect reading about IRIS, perhaps what seemed like side effects of HAART has really been IRIS.

He's been up and about today, and eating like a combine harvester, so we'll wait till Tuesday...

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,850
  • How am I doing Beren ?
Re: Brother just started treatment
« Reply #40 on: August 08, 2010, 01:03:19 PM »
Poor guy , I hope he feels better . I got shingles when I started meds and then again when I started back after a long drug holiday .

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #41 on: August 09, 2010, 05:15:33 AM »
Thanks jg

So difficult to know when to rush to the doctor, and when to just let stuff run its course.

Offline metekrop

  • Member
  • Posts: 354
Re: Brother just started treatment
« Reply #42 on: August 09, 2010, 12:19:45 PM »
I got shingles when I started meds and then again when I started back after a long drug holiday .

Is shingle not a one time occurence?  :o
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797, UD

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Brother just started treatment
« Reply #43 on: August 09, 2010, 04:47:09 PM »
Is shingle not a one time occurence?  :o

ha...I wish.


Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #44 on: August 16, 2010, 01:07:03 PM »
My brother saw the doctor today - twas not shingles... twas Staphylococcal folliculitis... So he is on Klarithran - Clacee for that for 5 days and Merticortone (or something that sounds like that - which is a cortisone tab). The doc said something about his surface immune system reconstituting and finishing off what it couldn't before - a bit too enthusiastically.

He also has an eye thing... which he has eye drops for... His doc said it isn't anything serious or a precursor to anything worse - it's a kind of pink eye/conjunctivitis. He did name it, but there is a lot going on everywhere in my life at the moment, so I didn't retain much...

On Friday, they (his doc and my bro) decided not to check viral load and CD4, but just kidney and liver function... and lymphocytes... these all came back looking fabulous - today. Think his doc decided not to check CD4 and viral load because my brother was stressing out about his rash and he doesn't like needles - so he was a heaving bag of anxiety. He held back showing his doc the rash till today.

It was his process and I think in future he will consult his doctor earlier rather than later.

His next blood test will be kidney and liver function again in October and then in November they'll do HIV immune monitoring.

Other than the rash and his eyes he looks good. He's put 6kg on in the past month!!! His energy is up and he's much stronger. He's eating lots, he's had a headache free week for the first time in 10 years...

Hope you all doing fabulously!

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,850
  • How am I doing Beren ?
Re: Brother just started treatment
« Reply #45 on: August 16, 2010, 01:26:31 PM »
Thanks for the update , that is wonderfull news to share ! .

Your brothers story reminds me of what I experienced years ago . When I began meds for HIV I had a few latent things pop up .

At the time I thought it was the end of the world for me but I was really getting better and stronger every day . 

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #46 on: August 16, 2010, 01:30:04 PM »
At the time I thought it was the end of the world for me but I was really getting better and stronger every day . 

This about sums up the process he is going through - thanks for that jg. x

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #47 on: August 16, 2010, 01:33:53 PM »
Forgot to mention that he's also finished the two month phase of Rifafour (Rifampicin, Isoniazid, Pyrazinamide, Ethambutol) YYYYYYAAAAAAYYYYYYYY! And started Rifinah (Rifampicin, Isoniazid) which he has to continue four months.

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: Brother just started treatment
« Reply #48 on: August 17, 2010, 12:01:53 AM »
Your brother's experience sounds almost identical to mine.  I had a severe rash going once I started meds (Doxycycline and time cleared it up).  I also was having eye infections, but it would basically be the pores that my eyelashes stemmed from would have some sort of infection in them.  This has all passed now (it's been a year since I started meds and I stopped having the issues about 3-4 months ago maybe longer).  Time will heal him.

Offline sisterr

  • Member
  • Posts: 34
Re: Brother just started treatment
« Reply #49 on: August 17, 2010, 08:46:59 AM »
Thanks Hellraiser...

He does have a Doxy prescription for when the Clacee finishes on Saturday... Rash still quite hectic, but eyes much much better.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.