Time for a med change?

[mitch777]

OK, changed meds last March from Atripla to Isentress and Truvada due to the build up of cognitive issues.

Got a big bounce in clearer thinking for awhile but I was one of the 5% that had the unfortunate side effect of insomnia from Isentress. To make a long story short(er), Trazodone got me to sleep at night. 100mg. (50mg didn't work)

After being on this combo for 10 months I've noticed some changes that drive me crazy once again. Please keep in mind that the combo includes the Trazodone as I'm not sure what has been the cause.

1) I used to need an afternoon nap while on Atripla. It was pretty much daily and it ranged from 45 minutes to 2 hours during the final 3 years on it. Crazy right? I'm old but I'm not THAT old.

Anyway, since the med change I can't recall that I've taken a nap since, even though I often felt the need. Just too antsy and thought at first that it was all about getting off of Atripla. (Sustiva specifically)

2) I used to read quite a bit. No go since the med change. Concentration issues.

3) I used to be able to focus on TV shows. A huge struggle now. I keep deleting my recordings because I can't even come close to keeping up. (understatement)

4) On the plus side... I seem to have a bit more energy but it feels like it's drug induced. (well, maybe not so much a plus)

So, what do I do now?

I don't think I have any resistant issues.

My doc wanted to avoid Norvir when I changed meds because (if I'm remembering this right) I can no longer take any meds for my cholesterol problem. (long story)

My blood counts are pretty good with the major exception of a high red blood cell # due to testosterone therapy which has honestly been a major boost. (another long story)

So, I'm wondering what suggestions you all may have. As far as I know I have no resistance to any meds but/and I've been UD (with the exception of 2 minor blips) since 1997.

Going nuts once again, just in a completely different way. Maybe it's early onset Alzheimer's for all I know. Not to be too much of a hypochondriac but it runs in the family on my dad's side. (not this early)

Actually can relate to Wolfie's experience. The difference being that Trazodone worked for my at night. It didn't for him.

Ahhh.... so many meds, what causes what? lol.

5 brownie points if you got this far.

[tednlou2]

I get a brownie.  But, of course, I ain't smart with the meds, so others will have to do that.  Just wanted you to know I am thinking about ya and wishing you the best. 

[buginme2]

 Hey  Mitch I switched from Atripla to Complera.   For me, Complera  had had zero side effects other than an errant fart.

 Of course your experience may very. 

 Since your doc is hesitant with norvir he is probably hesitant with cobisistat so that would take Stribild off the table.

 That leaves Tivicay. 

 Do you have any requests

[darryaz]

1) I used to need an afternoon nap while on Atripla. It was pretty much daily and it ranged from 45 minutes to 2 hours during the final 3 years on it. Crazy right? I'm old but I'm not THAT old.

Interesting.  I take a nap in the afternoon 3-4 days per week.  I had chalked it up to old age and boredom, but maybe it's not.

[Miss Philicia]

I generally have had to take hour naps in the afternoon for the past several years which I chalk up to my increasing arthritis and muscle weakness in my legs.

Just my opinion Mark, but you are on so much stuff and always switching things around lately isn't it getting difficult for both you and your doctor to separate out what is going on and what is causing what, much less what "normal" really is in your present situation?

The two days I spent with you in December you seemed more "normal" to me than myself, and you are six years older than I am. In fact, I certainly did not get any signs of cognitive issues talking to you for three days, but maybe you've just become adept at managing them publicly. If you are sleeping well, even with the use of a sleep aid, then as far as I am concerned that is success.

Don't you also see a prescribing psychiatrist as well as therapist? What do they say about your concentration issues?

[wolfter]

I saw nothing unusual about your behavior, but then again, I enjoyed roaming aimlessly with you.    Only we couldn't find that big ole lake.  lol

I also recognize that we all differ in our experiences.  For me, Isentress was not nice nor easy.  I hope you figure it all out and get some much needed relief. 

hugs and luvs
wolfie

[RapidRod]

mitch777, I was on Sustiva and Truvada when I was first put on meds and then as soon as Atripla came out I started it until this past year and was switched to Complera. I had problems with feelings of being drunk and bouncing off the walls walking to the restroom and getting sick at my stomach every night and sleeping about 3-4 hrs and then being up for about that many hours before I could go back to sleep. I thought everyone did that and didn't say anything to by ID doctor until this past year and she said heavens no, you weren't suppose to feel like that. Started the Complera and I worried about it not working because I had no side effects and it was no different than taking my aspirin every night and I'm still undetectable and my CD4s are still increasing. I still have some sleep issues but no where near the issues I had with Atripla. I was diagnosed with CFS after five years of going to the ID doctor and they put me on Ritalin 30mg a day, 2 in the morning and 1 at noon, which helped tremendously it works as a stimulant in adults. I also take AndroGel and in the winter I take Vit D. I can go all day without the need to take a nap. Hope you get your concerns worked out.

[mitch777]

@Ted- You get brownie points Ted. lol. Thanks.

@Bugs- I'm not sure what options my doc would work well for me due to the untreated cholesterol, high red blood cell count, and depression and anxiety issues. I certainly have no problems taking more than one pill a day. I think he did rule out Stribild and I think he didn't want to have me try Tivicay because it was too new at the time.

@darry- Not sure what to say. I didn't seem to need the naps during the first half of the time taking Atripla but I was on it (and it's separate components) for at least 12 years. After about 6 years I took short naps but by year 9 the naps were 1 1/2-2 hours.

@David- I often wonder what my new normal should look like. This lack of focus in reading and watching TV coinsided  exactly at the point of changing meds. I guess I was so thrilled not to have to take a long nap every day and was so busy with mom's move, teeth issues galore, AMG, etc. that I kind of ignored it until now.

Appearances can be deceiving. (this goes to Greg's comment as well) Neither of you knew me 10 years ago so you have nothing to compare. Things like having difficulty reading or watching TV are not easily detected by anyone but yourself. There are other "internal" issues as well. Sometimes, as you said, I can manage them publicly, sometimes not so much. And David, I didn't get many words in edgewise during my visit. lol.

If it were simply the sleep issue I could tolerate that.

I have a Psychiatrist who also does talk therapy. I've talked to her about it at my last appointment. She seems to think it could be the meds but isn't sure.

As for the other (non-HIV) meds. The only new ones were the blood pressure med fiasco and an antidepressant that I've reduced to 2- 10mg pills per week because they drove me nuts but helped my headaches a bit. Still unsure if this tiny dose is helping with the headaches. Too early to tell. Also, I didn't start taking it for months after the HIV med change so I know that was not the culprit but at the higher dose it seemed to add to the focus issue.

@Gregg- See above.^ And yes, that lake was pretty elusive. lol. Thanks.

@Rapidrod- I remember you mentioning the Ritalin before. I mentioned it to my Psychiatrist. She didn't think it was wise for me due to my anxiety issues. She also thought it would not be a good mix seeing as though I'm taking a drug that gives me insomnia. Makes sense to me. No need for a stimulant although it might have worked well when I was on Atripla and sleeping all the time. Glad your med change worked out well for you.


I thank you all! Guess I'll see what the doc thinks. Just trying to be a bit prepared.

m.

[wolfter]

For all who is curious, Mark and I left a department store and decided to walk to Lake Michigan.  We stood there dumbfounded for a while before deciding on a direction, any direction.  An hour later, we found the lake that was right behind the store we started at.    COGNITION BE DAMNED. 

[Jeff G]

I so wish you guys could have heard the conversation on the phone with Mitch last night about meds .

It was clear both of us have a few short term memory problems . I have been on 3 combos in the last year and we spent 20 minutes sorting out which order I took them in and it would change every time we tried to repeat them in order, finally we gave up and talked about something else and I cant remember what that was either . 

[Miss Philicia]

Naw, you fags are just typical dizzy queens that's all -- stop trying to blame your butt-fucked AIDS diagnosis for every damn hang nail you get.

Seriously, you guys always seem OK to me when I talk to you but then I'm not living in your heads, that's all I was trying to say earlier. I admit to some short term memory lapses but I swear they're a side-effect of benzo use, that's kinda common with those.

[wolfter]

Naw, you fags are just typical dizzy queens that's all -- stop trying to blame your butt-fucked AIDS diagnosis for every damn hang nail you get.

Seriously, you guys always seem OK to me when I talk to you but then I'm not living in your heads, that's all I was trying to say earlier. I admit to some short term memory lapses but I swear they're a side-effect of benzo use, that's kinda common with those.

you're not right.

[mitch777]

I so wish you guys could have heard the conversation on the phone with Mitch last night about meds .

It was clear both of us have a few short term memory problems . I have been on 3 combos in the last year and we spent 20 minutes sorting out which order I took them in and it would change every time we tried to repeat them in order, finally we gave up and talked about something else and I cant remember what that was either .

Thanks. It was funny though. Short term memory sucks but it's easier to deal with when you know the other person has the same issue. What were we talking about? lol.

[Miss Philicia]

I think a lot of all these issues we are all having are simply what happens when you pass the two decades point of HIV infection (on average) and not connected to meds, or if it is connected to meds it's from stuff we took decades ago and not currently. Dunno, I just think we're all basically screwed up the ass.

Hey great, you can make my cd4 counts over 1,000 but I still have arthritis every day in every joint and can't remember where I put my penis last night (not that it works). Thanks, Doc!

Meanwhile if some unfortunate LTSer decides to halt all of their medications and sign a DNR form and get their pajamas ready for morphine and hospice we all get in a tizzy and clutch our pearls.

[mitch777]

I think a lot of all these issues we are all having are simply what happens when you pass the two decades point of HIV infection (on average) and not connected to meds, or if it is connected to meds it's from stuff we took decades ago and not currently. Dunno, I just think we're all basically screwed up the ass.

Hey great, you can make my cd4 counts over 1,000 but I still have arthritis every day in every joint and can't remember where I put my penis last night (not that it works). Thanks, Doc!

Meanwhile if some unfortunate LTSer decides to halt all of their medications and sign a DNR form and get their pajamas ready for morphine and hospice we all get in a tizzy and clutch our pearls.

I will ignore your last post as this one has lot's of truth.

[wolfter]

MissP, I've thought about that exact issue many, many times.  Quite frankly, it scares the shit out me that meds might keep me alive for a couple of more decades just to have it ruined by dementia or worse.

In that sense, we're still relevant in that we'll be the first generation to face long term infection and discover how it affects us.  It'll be difficult to show causation.  How would you determine if it was the drugs, the virus, or a combination? 

I know that replacing the Isentress gave me an immediate recovery of some of my lost cognitive abilities.  Not sure if it was drug, or the severe insomnia as a result of the drug.

[Ann]

For all who is curious, Mark and I left a department store and decided to walk to Lake Michigan.  We stood there dumbfounded for a while before deciding on a direction, any direction.  An hour later, we found the lake that was right behind the store we started at.    COGNITION BE DAMNED. 

You guys couldn't find Lake Michigan??? Golly!

[mitch777]

You guys couldn't find Lake Michigan??? Golly!

We knew where it was however we walked down a few blocks and then over a few blocks instead of the other way around. In other words we could have been walking along the lake but instead....

Logic just wasn't in the cards for us that day. lol.

[Jeff G]

When I first moved to Chicago the Sears Tower and the lake made navigation possible for me or I would have been just as confused .