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Author Topic: Any thoughts?  (Read 3491 times)

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Offline indy

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  • Posts: 9
Any thoughts?
« on: October 05, 2008, 12:04:00 AM »
My partner and I have tested positive several years ago.  We have chosen not to take med's till now.  He came down with PCP (which is all cleared up now) and PML.  He is taking Azithromycin, Sulfamethoxazole/TMP DS T and Atripla.  First week on it.  He has improved.  I have read the Atripla will help his PML, is this true?  It has improved I think.  He is still unsteady on his feet but, not near what it was.

He has not had any side affects!  He does sleep a lot and is in the sheets most of the time.  I guess my real questions are: How long will it take for him to feel better?  Will it help his PML?  What I read PML is real nasty and not a lot of hope.

Offline atlq

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  • Posts: 518
Re: Any thoughts?
« Reply #1 on: October 05, 2008, 08:02:00 AM »
Indy,

I am sorry to hear about your partners troubles. PML is one of the nastier OI's. That said, it has been shown that effective anti-retroviral treatment can halt its progression and reverse many symptoms (based on how well the immune system reconstitutes itself).

It takes time however. First the Atripla must stop the viral replication and then the immune system must begin producing new cd4's. So hang in there.

Hopefully your story will help others by illustrating the need for  regular cd4 and VL testing and the need to begin HAART well before your cd4 counts are so low that you have to deal with infections like these...

Best... :)
« Last Edit: October 05, 2008, 08:06:20 AM by atlq »
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Any thoughts?
« Reply #2 on: October 05, 2008, 08:38:13 AM »
Hi Indy, welcome to the forums.

You might want to read the Lessons found elsewhere on this website. There's a whole section on OIs.

We also have a man by the name of Ron who blogs on this site. He's come back from the brink with PML and his blog is well worth a read. He truly is an inspiration and his progress has been nothing short of phenomenal. Click here to start off with his first, introductory blog from back in May 2005.

The fact that your partner is already improving bodes well for the future. Good luck and keep us posted.

Glad you found us.
Ann
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Offline indy

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  • Posts: 9
Re: Any thoughts?
« Reply #3 on: October 05, 2008, 08:34:07 PM »
Thanks for your response!  He has good and not so good days.  His balance is almost normal after a little over a week.  He did have a couple of days of set backs.   He only has 14 Tcells and sleeps

Right now I really don't know what we were thinking.  We just refused to go to the doctor and all of this time we have never been sick.  We ought into to much about positive thinking.  We did not want to go on meds when we felt fine.  Also, we are a little vain and did not want to have any of the physical side affects.

We have both lost mates to aids (and many friends)  and I guess it was just easier to ignore the facts.  Hopefully we have time to get back on track!

When I found out I was poz in '90 I just asked that I could live to till 40.  Well, at almost 47 now I am asking for more time.

Offline Assurbanipal

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Re: Any thoughts?
« Reply #4 on: October 05, 2008, 09:07:29 PM »
Hi Indy

Hope you and your partner feel better soon.  PCP and PML combined are a lot to deal with.  I see you say his PCP is "all cleared up" but even after you get out of the hospital there can be weeks of needing to sleep a lot from that.  I remember taking morning and afternoon naps and sleeping 10-12 hours a night for the first few weeks after coming home from the hospital, only giving up the naps after  6 weeks or so -- and that was without PML 

The best thing is that he is getting plenty of sleep and responding well to HAART. So hang in there.

Best wishes
Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Any thoughts?
« Reply #5 on: October 08, 2008, 04:39:22 AM »
Hello & Welcome Indy,

I agree with Assurbanipal.  He will neeed lots of sleep to help his body heal.

Don't expect things to happen too quickly or get upset over a setback here and there. 

You've made a huge change and that takes a lot of courage.  So, congradulate yourself for taking these positive steps towards treatment and take every thing one step at a time.

Best of Luck to you both!
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline indy

  • Member
  • Posts: 9
Re: Any thoughts?
« Reply #6 on: October 11, 2008, 04:11:52 PM »
My partner continues to do very well.  He went to the dr. last Thursday and she was shocked at how well he is doing.  He is walking pretty normal and almost all of his little ticks are gone as well.  Except when he gets tired.  I truly believe he is going to lick this!  He does not have to go back to dr. for another 2 months. 

Thanks again for all of your input!

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Any thoughts?
« Reply #7 on: October 11, 2008, 05:04:39 PM »
Glad to hear your partner is doing so well.  Hope you are taking care of yourself too.

Best wishes
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline atlq

  • Member
  • Posts: 518
Re: Any thoughts?
« Reply #8 on: October 11, 2008, 10:07:57 PM »
Its good to hear things are going well. My thoughts are with you both....


“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline a2z

  • Member
  • Posts: 193
Re: Any thoughts?
« Reply #9 on: October 12, 2008, 01:14:16 AM »
Good luck with this.  What I have found through this website is that all good things are possible.
Dates are blood draw dates:
5/23/14: CD4 895 --.-% VL UD - Truvada/Isentress
09/21/09: CD4 898 27.0% VL 120 - back on track, same meds.High level enzymes, but less so
06/15/09: CD4 478 21.8% VL 1150 - high liver enzymes... looks like I may not be resistant
05/22/09: Fixed insurance, resumed medicine
04/17/09: Ran out of medicine, could not resolve insurance problems
04/01/09: CD4 773 28% VL 120 - high liver enzymes
12/01/08: CD4 514 23% VL 630
10/17/08 started Reyataz, Norvir and Truvada. -- possibly minor neuropathy, but otherwise okay.
9/10/08: CD4 345 17%, VL > 78K
8/18/08: CD4 312 18%, VL > 60K (considering meds)
12/19/07: CD4 550 28% VL > 100K (no meds yet)
Diagnosed 10/23/07

Offline indy

  • Member
  • Posts: 9
Re: Any thoughts?
« Reply #10 on: October 20, 2008, 01:16:49 PM »
Has anyone heard of anyone making a complete recovery from PML?  My partner continues to do well.  He still gets weak and has a little loss of balance.  So much better than it was.  Almost 100%.  He does have a few ticks and I don't think he is 100% mentally.  Again, so much better than before though.   He was close to death.  I don't think a month has even passed.

Offline indy

  • Member
  • Posts: 9
Re: Any thoughts?
« Reply #11 on: November 18, 2008, 01:07:12 AM »
Has anyone experienced mood swings while taking Atripla?    My partner has always been more of a "half empty glass rather than half full".  Well, now he is a lot of times just down right mean to me and to others, even complete strangers.

I am not sure if it is the med's, PML, depression or what.  I do know that at times it is very hard to live with.  I know he gets upset because he is not able to do the things he used to do.  However, he is so much better than he was.  Just a couple of months ago he could hardly walk and fell down a lot.  That is not the case now.  He is ALMOST back to normal other than his short fuse and I can tell he is not what he used to be mentally.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Any thoughts?
« Reply #12 on: November 18, 2008, 11:43:17 AM »
Hi Indy

Glad to hear he is improving so fast.  Don't know if you have looked through the other resources on this site, but there is a page that goes through each of the drugs and notes side effects etc.

Here's the link to the page on Atripla
http://www.aidsmeds.com/archive/Atripla_1577.shtml

Note in particular:

A small number of patients have had severe depression, strange thoughts, or angry behavior while taking Sustiva, one of the drugs in Atripla. Some patients have had thoughts of suicide and a few patients have actually committed suicide. These problems tend to occur more often in patients with a history of mental illness. You should contact your doctor immediately if you think you are having these symptoms, so your doctor can decide whether you should continue to take Sustiva.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline vardis

  • member
  • Posts: 1
    • Vardis
Re: Any thoughts?
« Reply #13 on: December 02, 2008, 06:28:53 AM »
Best wishes to both of you.
Please have a look at Vardis

Offline indy

  • Member
  • Posts: 9
Re: Any thoughts?
« Reply #14 on: February 14, 2009, 01:23:26 AM »
Thanks everyone for you input.  Life for my partner has take a down turn.  It has only been a few months since he has started taken Atripla.  He saw great improvemet with his PML for awhile.  It was like a miricale.  It now seems to e coming back.  He does not have much strength in his legs ect.  Is this normal?  He does not see the Dr. until the 27th.

 


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