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Author Topic: Should I change meds?  (Read 7342 times)

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Offline markaj

  • Member
  • Posts: 80
Should I change meds?
« on: July 21, 2008, 01:33:43 am »
Hey everybody, new member / 1st post.  I've now been on Kaletra and Truvada for just over 2 weeks.  I think I've got over the worst of the short-term side effects but I still have intermittent diarrhea and I'm passing the most offensive smelling gas ever - the smell makes me feel sick and I find it all very embarrassing, especially at work, and let's just say that I think my sex life is pretty much over.
My Doc said I could switch the Kaletra to Sustiva but I don't know whether I want to risk the CNS side effects with that.  Does anybody know if these Kaletra side effects are likely to go some time soon?  Is Sustiva really that bad?  Would you stick it out with Kaletra or risk changing to Sustiva?  I'd be really grateful to hear what everybody thinks I should do.  Thanks. Mark.
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Should I change meds?
« Reply #1 on: July 21, 2008, 01:41:43 am »
The side effects might calm down after the first month -- they do for most.

Why aren't you taking immodium (or prescription loperamide) for the diarrhea if it's such an issue.  Did your doctor not suggest that?

Most likely it's the kaletra causing the diarrhea and the truvada causing flatulence.  Most people will at least experience diarrhea from kaletra, but the amount of this depend on the person.
"I’ve slept with enough men to know that I’m not gay"

Offline atlq

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  • Posts: 518
Re: Should I change meds?
« Reply #2 on: July 21, 2008, 09:28:02 am »
I have been on your combo for  about 2 1/2 years. It's really effective in terms of viral suppression, but , at least for me, had the symptoms you described. They should subside over time, but will probably not go away totally....I would stick with it for a another couple of months...once your VL is suppressed and your body has adapted to the drug, you might feel differently about it...Also, as Philly said, grab some Immodium and see if that helps...
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline newt

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  • Posts: 3,900
  • the one and original newt
Re: Should I change meds?
« Reply #3 on: July 21, 2008, 01:08:25 pm »
Taking Truvada with food, a proper kind of meal, reduces the farting. 

If you want to try Sustiva, do, it is fine for many people after the first few weeks, not everyone gets bad CNS side effects.  Alternatively, ask about Reyataz (atazanavir), also a PI, but kinder to the gut. 

They are both pretty much as good as Kaletra.

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

Offline Surviving

  • Member
  • Posts: 20
Re: Should I change meds?
« Reply #4 on: July 21, 2008, 02:22:32 pm »
based on my personal experience, any kind of meds newly introduced to the system will usually cause an inbalance in many areas.   

with regards to the diarrhea your system will become acclimated with the meds and then you will likely experience constipation and weight gain.

that being said, you will likely have to alter what you eat regularly and some of your favorite foods.   having a simple and bland diet is just as healthy and easier on your system if you eat the "same" foods regularly and consistently.   

i no longer drink coffee or soft drinks and other complex and processed foods.   my system stays constant and balanced as a result.

Offline markaj

  • Member
  • Posts: 80
Re: Should I change meds?
« Reply #5 on: July 21, 2008, 02:49:45 pm »
Thanks for all the great advice folks.  I'm going to get some Loperamide from my clinic and stick with Kaletra for the time being. I don't drink coffee or alcohol and eat the blandest food imaginable anyway - there's not much else left to sacrifice!
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline BT65

  • Global Moderator
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  • Posts: 10,786
Re: Should I change meds?
« Reply #6 on: July 21, 2008, 02:50:35 pm »
with regards to the diarrhea your system will become acclimated with the meds and then you will likely experience constipation and weight gain.

This is not always true, Surviving.  I've been on Kaletra now for quite a few months and I've never experienced constipation and weight gain as a result.  I would be a little more careful (especially it being your first post) about throwing around these generalizations to someone thinking about changing meds.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline Miss Philicia

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  • Posts: 24,793
  • celebrity poster, faker & poser
Re: Should I change meds?
« Reply #7 on: July 21, 2008, 03:15:35 pm »
I don't think I've ever heard of being constipated while on Kaletra, except maybe if you're snorting dope.
"I’ve slept with enough men to know that I’m not gay"

Offline Nashvegas

  • Member
  • Posts: 196
Re: Should I change meds?
« Reply #8 on: July 21, 2008, 04:23:47 pm »
You might also consider switching to a Truvada + Viramune combo.  I started with this combo one month ago, and found out today that I'm already undetectable.  And, knock on wood, absolutely no side effects to report.  I was very leery of Sustiva's psychiatric side effects, and didn't want to deal with the gastro-intestinal complications experienced by many with protease inhibitors, and Viramume has been really easy on my system thus far.     
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline freestate guy

  • Member
  • Posts: 36
Re: Should I change meds?
« Reply #9 on: July 21, 2008, 11:41:43 pm »
Good Luck with the Loperimide. I never tried it and stuck with over the counter Immodium  and diet changes. I did not know about Loperimide. I was afraid that too much Immodium would result in constipation.  In the end (3 years plus), I simply had to get off Kaletra because of the diarrhea and constant fear of diarrhea. My quality of life was greatly diminished in ways that it took me too long to realize. If it doesn't work out, as has been mentioned, there are alternatives out there that are effective. Just don't make the mistake I did and stay on the drug too long hoping that things will get better and can be somehow managed.
Mitochondriac

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Should I change meds?
« Reply #10 on: July 22, 2008, 09:31:17 am »
You might also consider switching to a Truvada + Viramune combo.  I started with this combo one month ago, and found out today that I'm already undetectable.  And, knock on wood, absolutely no side effects to report.  I was very leery of Sustiva's psychiatric side effects, and didn't want to deal with the gastro-intestinal complications experienced by many with protease inhibitors, and Viramume has been really easy on my system thus far.     


Good advice, Nash!  Viramune+Truvada was my last regimen, and the possible side effects from Viramune are less problematic than those with Sustiva (since "the rash" would occur with either) or Kaletra.  I have several friends delighted with their changes to this combo, too.

As for the diarrhea with Kaletra, adding a hefty fiber supplement or other good fiber sources may help more than loperamide.  Gives your system a binder for firmer stool.

Best,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline Surviving

  • Member
  • Posts: 20
Re: Should I change meds?
« Reply #11 on: July 22, 2008, 07:14:29 pm »
This is not always true, Surviving.  I've been on Kaletra now for quite a few months and I've never experienced constipation and weight gain as a result.  I would be a little more careful (especially it being your first post) about throwing around these generalizations to someone thinking about changing meds.

Everyone's system is different and undoubtedly you are an expert with your dietary needs.    My point was that it is easier on the system by avoiding extreme changes in diet.  Our meds are powerful and we should not take our bodies for granted by believing they are unbreakable and able to tolerate changes from that of being physically able and feeling wonderful, to being infected and stressed, to being medicated and saturated with chemicals that burdeni the body and the minds.     For me, I need to have a burger or pizza once every six or seven weeks.  My mind tells me I need it.   But in 48 hours my body will tell me that I need my Citrate of Magnesia.

It is true that this is my first post, but my infection is 20 years old, diiscovered 8 years later and i am still surviving as of today - thank you.

Offline ArisGreekSquared

  • Member
  • Posts: 46
Re: Should I change meds?
« Reply #12 on: August 19, 2008, 12:42:12 pm »
Just make sure it is the right fiber :) You could also take a stool hardener if you don't want the runs or take Immodium AD...The wrong kind of fiber such as insoluable will make you explode :) hehe.  I believe soluable is the correct one to bind you.

-A

Offline markaj

  • Member
  • Posts: 80
Re: Should I change meds?
« Reply #13 on: August 23, 2008, 08:09:01 am »
Thanks again everybody for the great advice. I've stuck with Kaletra and the Loperamide did the trick (my fibre intake was already pretty high anyway). i've not had to take Loperamide for a while now but things have gone from one extreme to another!!!
I started passing abnormal stools (really long and wide) and 2 weeks ago passed quite a bit of blood. My clinic took a stool sample, all was okay and I haven't bled since but in the last week i've had the most excruciating rectal pain - burning/stabbing/spasm like pain). I got myself to hospital and saw a military Gastro doctor. He said I have anal fissures (probably caused by large stools after loose stools for so long).  Although he didn't actually examine me as he said it was unnecessary and would be too painful.  He was going to write to my HIV doctor and work out what they should both do next.
For now i've been given Glyceryl Trinitrate/nitroglycerine ointment to apply twice a day and Movicol powders to take 3 times a day (to loosen my stools). I'm really not getting much relief. Has anybody else had anal fissures?
I really expected the Nitroglycerine to kick in by now but all I seem to get is a thumping head and feel sick after a few minutes of applying it inside.  I've been told not to take any pain killers because they will mess about with my stools. I really think this is the nail in the coffin with me for Kaletra and am going to switch to Sustiva as soon as I've finished the Kaletra i've already been given.
I'd really appreciate hearing about anybody's experience with anal fissures.  I have never been in this much pain before and I can't get comfortable at all, it's affecting my sleep and the pain is basically constant - not just before, during and after passing stools. As ever, any advice would be appreciated. Thanks everybody.
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline NewLife4Me

  • Member
  • Posts: 24
Re: Should I change meds?
« Reply #14 on: August 23, 2008, 11:13:45 pm »
Unfortunately yes, I have had a very similiar experience recently and all I can say is I feel for you man. PAINFUL!!! I was very ill at the time and was actually hospitalized thank God because they put me on Dilotted via IV for pain every 3 hours and believe me I asked for it 15 minutes before 3 hours were up. I was in the hospital for 3 weeks and was on this the first 2 and a half weeks. I was told that it could take up to 10 weeks to heal and this was in mid June and I still take a stool softener daily and still not 100% pain free.

Sorry that I can not give you any better news than that but invest in some tucks and just know it does get better, may not seem like it now but it does.

Offline Sydney

  • Member
  • Posts: 25
Re: Should I change meds?
« Reply #15 on: September 02, 2008, 06:39:01 pm »
"... am going to switch to Sustiva as soon as I've finished the Kaletra i've already been given."

Hi Markaj,  I noticed that you made the switch.  I'm interested in your experience with the efavirenz in Sustiva.  Have you had the CNS side-effects?  Keep us posted. And I hope the painful anal fissures have cleared up by now -  how's it going with you?

Offline Tempeboy

  • Member
  • Posts: 360
  • Like St Francis of Assisi I am wedded to Poverty
Re: Should I change meds?
« Reply #16 on: September 02, 2008, 09:35:28 pm »
Hey marcaj,

Are you still taking the loperamide?  Maybe a reduction in dose or break could alleviate constipation.  There are some effective over the counter analgesic (no really) creams for a sore bottom.  Prunes are good for shifting things gently.

It is a very confident diagnosis that your military man has given without physically examining you.  Nitroglycer  Could you get a second opinion?

I think it was fearless who recently posted about switching from Kaletra to Prezista with a complete resolution in diarrhoea.  I think he also said something about getting back in the saddle soon after!

Hope things improve soon.

x

Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline markaj

  • Member
  • Posts: 80
Re: Should I change meds?
« Reply #17 on: September 03, 2008, 01:40:16 pm »
Hey Sydney i've been on Sustiva now for 5 nights.  The only notiiceable CNS side effects so far have been I wake every morning suddenly at 1am (after taking Sustiva and Truvada on an empty stomach at 10pm) and am really agitated and restless - I cannot get back to sleep.  My doctor gave me some Zopiclone - this brought me an extra 2 hours sleep, waste of time! Today i've just got some Temazepam and intend to take 20mg before I got to bed tonight so hopefully this should do the trick - otherwise I have slept very little since Friday.  I do feel quite dizzy and light headed in the night and first thing in the morning but that's it really.  I don't regret (so far!) for one second making the change.  All my gastro issues have now gone already - even the offensive smelling flatulence.
Tempeboy I stopped taking Loperamide as soon as I could.  I thought the diagnosis of anal fissures was made quite speedily but whether they were my problem or not things have thankfully settled.  I have very little discomfort now. 
I just wish I could have had Sustiva in the first place and all this drama might have been avoided.  I hope I never see another Kaletra tab in my life!  The confidence I now have - words fail me - being able to go out and about and not worry where the nearest toilet is!!!
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline Sydney

  • Member
  • Posts: 25
Re: Should I change meds?
« Reply #18 on: September 05, 2008, 07:19:52 am »
I'm glad things are going better for you.  I start meds on Monday.  I've chosen the alternatives to what you're on - Kivexa (abacavir + 3TC) and Viramune (nevirapine).  Given your mix, if the CNS side-effects of efavirenz become a problem, there's good research evidence that you can swap from the Sustiva to Viramune.  Cheers, and I hope things go from better to best.

 


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