The Fella I've Been Seeing

[thunter34]

Some of you folks know there's a guy I've been hanging out with for the last month or so.  He's also poz, of course, and things haven't been going so well for him lately.  I just got off the phone with him awhile ago.  Here is his report:

He's had to stop taking his regimen (Viramune and Combivir, I believe) for the last month- and now they want him to stay off of it for the next month while they run some tests to see what is going on with him.  In addition to the Dreaded D that we all typically deal with, he has been getting throw up sick every day (usually hurling first thing in the morning).  He has been taking this combo for about 3 years, and says he has been having this problem pretty consistently throughout...leading (I suspect) to some rather shoddy adherence.  He is also taking Bactrin.  His counts a month ago had his t cells above 300.  His results today had him at 200 even.  So it sounds like he has had a greater than 100 drop in t cells in just over a month.  I do not know the current VL. 

He is also a heavy smoker and just had some polyps removed this summer (he said they were benign).  The docs plan to see him on Monday to run tests- checking down his throat again to determine if there is a cancer issue going on. They have also suggested Atripla as a new possibility; however, he takes Lexapro for depression.  He is unsure about this combo due to the depression history, but otherwise doesn't know what to think.  To put it bluntly:  he is not nearly as "in the know" as many of us here about meds and how regimens work.  He just knows he is scared right now.  Scared of his climbing VL (which he was too scared during the doctor visit to remember precisely, but he said it was "up"), scared of the prospect of cancer and scared of his falling t cell count.   

*sigh*

Not sure why all I am posting all this other than to vent and see if anyone out there in Infection Land has any words on the matter.  He knows I go on and on about this place and all of you, so he asked me to put it out here and see what folks had to say.

I don't know quite what to tell him at the moment, other than to be sure to swallow the Bactrin and keep me posted.  I don't know what to advise about the Atripla, given his history of depression and panic attacks.  I'm worried about the HIV thing, obviously, but I will admit I am currently more concerned about the prospect of cancer.  The boy smokes.

A lot.

Any tips?

[Matty the Damned]

One tip, Timberley.

That boy needs to become adherent or he's gonna die.

MtD

[Dachshund]

Matty's right my friend. Methinks his lack of adherence is fucking up his meds and the real elephant in the room. Still you're worried, then I'm worried.

[David_CA]

He's fortunate to have your 'hand-holding' through this.  I do hope he'll do better in the adherence, but I guess it's hard when one has so many bad side effects.  At least he's taking his Bactrim; he definitely doesn't need to deal with PCP or other nasties.  I hope things work out for him in terms of the cancer checkup and meds change.

David

[allanq]

I think the AZT in Combivir is a likely cause of your friend's nausea. Nausea is a documented side effect of AZT. About 12 years ago I was throwing up six or seven times a day. It was wearing me out, and I was losing more weight than I could afford to. This went on for several months. Finally, I got off AZT and the problem stopped.

Tell him to talk to his doctor and find out if a switch from Combivir to Truvada would be feasible. He should get a genotype done before making any switch.

Allan

[thunter34]

One tip, Timberley.

That boy needs to become adherent or he's gonna die.

MtD

I feel so much better now.    

Yeah.  I'm kinda hung on the whole thing.    He said that the docs told him to expect that he might get admitted to the hospital when he goes in for tests on Monday- to plan for it.  

Like I said, I get the feeling he has never gotten schooled like a lot of us have on regimens and how they work.  I think he's been taking them in a "as often as I can without getting too sick" kind of way- and I don't think he's taken the bull by the horns about the sickness problems and actually tabled them with his doctors in a "we've got to do something about this" fashion.  I think he's been under the impression that if he took them "pretty well'' he could keep the VL at bay and stay in a pretty good spot.  This is all pretty new to me since I have only been around him consistently in the last month or two.  I don't really know (other than the bits and pieces he's shared) what all the medical history really is.  I do know that he lost his Mom a year or so back and went through major, major depression over all that.  She was basically all the family he had, save a sister that he hears from sporadically.  

It's a big ol' mess.  

[milker]

Maybe you can go see the doc with him? You will learn about his exact medication since you are not sure, and like David said you will have to do some hand holding for a while. If he's scared and he's asking for help then that's an excellent thing, it brings hope that he will listen to you and go on to a good recovery.

Chantix gives me very slight nausea sometimes, so I'm not sure it's time to add that to the combo, but the doc will know better than I do.

Milker.

[thunter34]

Thank god that post went through.  I was just about to be majorly miffed- the site went down on me AGAIN.  (Like 6th or 7th time today).


Be it known or clarified that the guy hasn't been deliberately cavalier about his treatments.  I just think he's lost vigilence over the past year or so due to depression and other life issues.  I also really and truly think he has not had a grasp on just the real level of dedication that true "adherence" requires.  I do not know exactly how HIV specific his medical team is and if he got the level of real counciling about the whole process that I have had.

[Iggy]

Can you print him off the Lessons on treatment issues (which cover adherence as well as side effects like nausea)

Not sure if you would feel awkward playing instructor with him on such stuff but if you say he is pretty unaware - it might help get him up to speed.

The only other advice I have is despite fears of cancer, I wouldn't push the stop smoking thing right now...I have a feeling that one would go very badly at this time.

[MOONLIGHT1114]

Timtation~

I'm sorry to hear about your friend.  I agree, that possibly its the AZT that is causing him to throw up, which in turn may have affected his regimen, and perhaps built up some resistance?  It sounds as if you care for this guy, and although I know it would perhaps be an emotional thing, maybe you could be his voice even more?  Maybe go to the doc's with him, or to the hospital, if need be, and help him out?  

I find that with the new guy I am seeing, he is kinda unaware about how to make things easier for himself.  The dreaded D, dehydration, working out in the heat, etc.  All of these things take tolls on our bodies and we have to be ever so careful, wherever we can.  I have taken him under my wing, and I am encouraging him, letting him know that there are always options, always options, thank goodness.

I certainly hope that your friend isn't dealing with cancer, and that perhaps Truvada could be taken to bring the VL back down.  I firmly believe that we all have to stick together, and help our own, so to speak.

Like I said, I'm not sure how close the two of you are, but its at times like these where someone like you could really make a difference in this guy's life.  You're a good person to be posting here about him.  I hope you take it to the next level and look out for him some.  I certainly would.

Love,

Cindy

[thunter34]

No, I would not feel bad about that at all.  Actually, this whole situation has brought it to light to me how different a lot of us are in our level of knowledge about our own care.  Like in this situation, I would have nipped this meds problem right away with my docs- telling them we either had to correct the problems or find a new combo pronto.  

While I recognize that ultimately his care is his own responsibility, I do hope I can be a help to him through these next doctor visits and meds decisions and help make sure he gets properly schooled on how to go about this.  The picture I have been getting is of someone who may not have been getting care from docs extensively trained in HIV / AIDS and who hasn't been particularly well instructed on the disease and being his own self advocate.  

[milker]

I have a feeling that one would go very badly at this time.

Agreed. And I'm wondering if his mindset is something like "well, i'm gonna die of cancer, so what do I care about hiv?". Gotta get the boy back on track, Tim.

Milker.

[thunter34]

I'm honestly thinking the boy may do better on a once a day deal like Atripla- if he can take it with his depression history. 

That and some Chantix eventually.  He may not give up smoking yet, but he surely does need to gear it down some.  I'm guessing he smokes 2 packs a day.  Guessing...but pretty much one every few minutes. 

And I am gonna do what I can to help arm him to help himself on the medical care front.  I want to help educate him to be his own advocate and make informed decisions.  I cannot become solely responsible for his care, though.  Got enough on my plate dealing with my own, don'tcha know.

[milker]

There is a fine line between educating and being annoying. Don't try to do to much at a time. Since he's willing to ask for help from the forum, then jump on the opportunity, show him the responses, maybe? You're not his HIV mentor but you know stuff, so make him ask you questions, make it a bf to bf conversation, not a tutor/student relation.

Milker.

[Buckmark]

The picture I have been getting is of someone who may not have been getting care from docs extensively trained in HIV / AIDS and who hasn't been particularly well instructed on the disease and being his own self advocate. 

From what you describe, I too get the impression that he is not getting care from someone who is an HIV / AIDS specialist.  Of course, we all need to be our own best advocate for our healthcare, and even the most aggressive doctor can only act based on the information we provide them.  It's got to be a partnership.

It sounds like your friend needs a "come to Jesus" talk about how important adherance is, how medications and treatment work, and how to start taking control of his situation.  His depression, however makes this all the more challenging, and you'll have to decide how strong of a tone is appropriate.  One way or another, he needs to know. 

 I think Milker's idea is an excellent suggestion:  it would be great if you could commit the time to go with him when he sees his doctor.  Though you're right that you can't be responsible for his care -- ultimately, his health is his responsibility.  You need to be clear with him about that, but you could help him get started in the right direction.

From personal experience, I know that Sustiva can be tricky to handle if you suffer from depression.  Reyataz and Truvada is another potential once-a-day combo, I believe. 

You're a good friend, Tim, and like Cindy said, you could potentially make a real difference in his life -- as long as he realizes he also has got to start taking some action and making some changes.

Hugs,

Henry

[thunter34]

There is a fine line between educating and being annoying. Don't try to do to much at a time. Since he's willing to ask for help from the forum, then jump on the opportunity, show him the responses, maybe? You're not his HIV mentor but you know stuff, so make him ask you questions, make it a bf to bf conversation, not a tutor/student relation.

Milker.

Except he IS NOT my boyfriend.  Let's clarify that one right there.  He's the fella I've been seeing- not a boyfriend.  And I'm only getting involved to the degree that he asks me and I can perhaps assist in helping him figure it out for himself.

[milker]

Except he IS NOT my boyfriend.  Let's clarify that one right there.  He's the fella I've been seeing- not a boyfriend.  And I'm only getting involved to the degree that he asks me and I can perhaps assist in helping him figure it out for himself.

Read my post as "more than friends" then. Same answer.

Milker.

[Miss Philicia]

No, I would not feel bad about that at all.  Actually, this whole situation has brought it to light to me how different a lot of us are in our level of knowledge about our own care.  Like in this situation, I would have nipped this meds problem right away with my docs- telling them we either had to correct the problems or find a new combo pronto.  

While I recognize that ultimately his care is his own responsibility, I do hope I can be a help to him through these next doctor visits and meds decisions and help make sure he gets properly schooled on how to go about this.  The picture I have been getting is of someone who may not have been getting care from docs extensively trained in HIV / AIDS and who hasn't been particularly well instructed on the disease and being his own self advocate.  

A big problem is that first of all you don't have a very good picture of what is going on with him.

Is his HIV doctor good?
What exactly is adherence like, and what caused it to go off track?
If it's depression what's being done about it?  If he's not seen a therapist regularly about it that's a big red flag.

The first thing I'd do is just cut to the chase and tell him if he wants you to really help him through this you can't waste time and need information -- it's for HIS benefit because things are so time crucial.  He's not going to adhere unless his depression is treated AND he has a more suitable regimen.

Good luck.  Sounds like a very full plate.

[Tempeboy]

Poor love,

It's difficult, nay, impossible to be adherent if side effects are ruining your day.  He may well be adherent, but bringing the bulk of his doses up before they can absorb.  With chronic hyperemesis (over-vomiting) it's very easy to get irritation of the oesophagus and gut, which in turn worsens the problem.  While he is not on treatments it's a great opportunity to address some of the other stuff.  I wonder if it could be helpful to break the issues down.

1. 

Vomitting may have caused gut irritation, malnutrition and dehydration.  Maybe talk to a dietitian about a suitable diet for this time and talk to a doc about antacid medication in tablet form.  Maybe some fortified dietary supplements (ensure etc) and/or a multivitamin would help him get on top of things more quickly.

2. 

Depression/anxiety - even though Lexapro is great, there are other anti-d's that might work more effectively against anxiety for him (mirtazapine for one).  Benzo's can help in the short term during any medication changes.  If he can reduce his anxiety he might want to smoke less.  A state of anxiety canalso increases nausea, vomitting and associated gut irritation.  So reducing anxiety may help indirectly with the other issues.

3. 

Nicotine replacement therapy can help reduce the amount someone smokes.   A doc might be able to advise.  Benzo's in the short term can help people reduce the amount they smoke.  Even though smoking is the enemy here, realistically it might be the last issue he is able to tackle.

Once things improve he should be better able to take on a new combo, and for many of us it's trial and error until we get one that works best.  Now is a good time for him to make some choices in regard to his overall health that will help him when he does need to start a new combo.

Needless to say, all of this intended as suggestions only to a peer.  A thorough medical assessment coupled with good care and sound advice is what he needs.

all the best.

If he is depressed as a result of his current situation (and who wouldn't be) then Sustiva might be worth a go, ie: if it dosn't cause nausea and vomitting for him, and if any other side effects are bearable, and it reduces his viral load to undetectable and keeps it there, then cool.

http://www.plwha.org.au/PLWHA/attachments/FS1_Efavirenz_Run-ons_V2.pdf

warmth, fond regards and a speedy recovery to you and your 'fella'

J x




 

[newt]

Depression .. hmmm

Just to be drug orientated about it, given the nausea, the AZT may well be the cause of the depression (this is well documented).  Therefore a combo without AZT may do the trick.  I believe a 1 x day combo is probably better for mr friend, so I would be reaching for Atripla, or (more my preference because NNRTI after NNRTI with a break has a serious possibility of resistance if the Viramune was stopped just like that,  a resistance test within 4 weeks of stopping should tell you yes or no on this) boosted Reyataz + Truvada. Both have wide margins time wise. As noted, Atripla + depression and/or (especially) anxiety needs caution but can be managed.

Smoking, stopping, yes, but sort out the combo first. An effective, easy (workable) combo with fewer (manageable) side effects is a great motivator.

- matt

Now playing: Chill FM on digital radio, some Massive Attack remix of an oldie by This Mortal Coil

[BT65]

Hey Sweetie:
 
As you know, I just lost my mum on August 10th.  If there's no counseling to help one deal with the loss of someone significant, there's bound to be a great deal of depression that just a pill won't fix.  I don't know if he's seeing a good therapist, but if he's not, I would certainly suggest it.

I think it's a good idea to go to his doctor's appointment with him, if he's comfortable with it.  I think you have to approach things like this with extreme caution.  Some people will only let us stick our noses in so far. 

You're such a good friend to help him with this.  I guess it's something we can all learn a lesson from.
Love ya always-
Betty

[Queen Tokelove]

Poor Thunter Bunny~~

You truly do have a heart of gold. I think it is great that you want to help your friend. Not bf yet but there must be some potential or I don't think you would be as involved as you are. But I feel you on not wanting to call him bf yet, take your time getting to know him. I know I don't have to tell you that. I take it that you guys talk and obviously it seems like he is listening and doesn't mind you trying to help.

I don't know much about depression other than what I have read here. Just from what you are saying I would take small steps with him when doing things since he seems to be a bit overwhelmed at the moment. I'm sure the others will be of more help when it comes to depression. I would advise to keep things in perspective and not to get too caught up in his in turmoil. I'm not saying don't be there and help but don't neglect yourself either. I would like to say more but my head is a bit foggy at the moment since I just woke up not too long ago. Keep your head up.

[thunter34]

Well, I can report that things have gotten drastically better on the depression front with a quickness.  They doubled his dosage of Lexapro- and it was like a whole new person.  I thought that was something that needed to happen (having had depression issues myself) and sure enough.  I can tell the difference right away- and this is true also of the concern and attention he is paying to his HIV care.  It's like he has gotten drastically more focused about it. 

As I said before, I am only getting involved to the degree that he is asking me to- actually less.  I am being cautious about making sure that I don't get overly involved in it so that he remains at the helm of it. 

[Dan J.]

This is one lucky fella to have good friend like you!

No wonder I like you so much.

Dan J.

[thunter34]

This is one lucky fella to have good friend like you!

No wonder I like you so much.

Awww....puddin'!

[Queen Tokelove]

Well Hallelujah...I am glad that the double dose of Lexapro is helping your friend. It seems like it has made all the difference. Now how come you didn't tell your Queen about this new booty? And everytime I look at your avatar, that piggy's ass makes me want some chitlins....

[emeraldize]

 I think Milker's idea is an excellent suggestion:  it would be great if you could commit the time to go with him when he sees his doctor.  Though you're right that you can't be responsible for his care -- ultimately, his health is his responsibility.  You need to be clear with him about that, but you could help him get started in the right direction.

Ditto. Two-fold outcome. He knows you care. You get to hear what's said and how he's handled overall.