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Author Topic: Currently off Meds  (Read 1448 times)

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Offline Chemteach7

  • Member
  • Posts: 15
Currently off Meds
« on: December 14, 2006, 10:57:31 PM »
I was having problems with the Doctor I was seeing back in April. So I took a leap of faith (not to mention my health was crashing pretty bad) and went to the University of Michigan HIV center. They ran a series of tests and geno and pheno. etc. and when they came back pretty much confirmed that all the med switches and so forth over the years I had developed resistance to all protease inhib., neucs and non-neucs... bar one or two possibilities. I could still use fuzion the new integrase inhibitors and some new meds that likely will show up in the pipe line. However, we come to the decision that going off the meds for now would be the best option. I have been positive for 13 years. Have over 500 t cells, usually a good viral load. No serious problems other that neuropathy due to long term d4T use. The idea is that holding off treatment is ok since the lack off current meds available for use is limiting and would exhaust my treatment options if need should come up. Also, with my T cells over 500, I really do not warrent meds. This is still freaking me out and I DO feel well. My blood work is freaking me out and I am getting really scared.................... My T cells have gone from 590 to 500 and my viral load from 5,000 to 168,000 in 6 months. I talked to them and they said that the point they will become concerned is 225,000 and 400 t cells but for now ride it out. What do you have to say ? What meds are comming ?

Offline Tucsonwoody

  • Member
  • Posts: 396
Re: Currently off Meds
« Reply #1 on: December 14, 2006, 11:07:03 PM »
Here is one companies plans - will post others if I find em -  this info just came out this week too

Merck plans to submit a new antiviral treatment for HIV, known as MK-0518, and an insomnia treatment called Gaboxadol to the FDA for approval in 2007.

You might take a look at this website too http://www.pipelinereview.com/joomla/index.php

I haven't spent much time on it so can't say it would give you the info you're looking for.

Maraviroc: Pfizer just announced plans to move this viral-disease medication into phase 3 trials to treat HIV-infected patients. Unlike currently available medications that fight HIV inside the structure of white blood cells, maraviroc is designed to block the cell's receptors and prevent the virus from entering the cell. Pfizer expects to receive regulatory approval, and, in the next few months, to begin enrolling patients in a study of the drug's effectiveness.
« Last Edit: December 14, 2006, 11:12:33 PM by Tucsonwoody »
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline ndrew

  • Member
  • Posts: 695
  • ....-.-.-.-.-.....
Re: Currently off Meds
« Reply #2 on: December 14, 2006, 11:08:53 PM »
Hang in there!  We are here for you...  stay healthy and practice things that relax and destress you (I should talk...)This virus is much slower than our thoughts, apprehensions and stresses!

With luv and support,
Drew

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: Currently off Meds
« Reply #3 on: December 14, 2006, 11:09:23 PM »
There is a thread started by Robert called "Thinking of taking a holiday? Think Again."  It has a link to a Chronicle article on this topic.  Sorry, I never figured out the cut and paste.  If you look right now, it will be on page 7 of this forum.  Have the best day
Michael

Offline MSPspud

  • Member
  • Posts: 613
  • Joined Mar 2005 - Formerly UofMurbs
Re: Currently off Meds
« Reply #4 on: December 14, 2006, 11:12:30 PM »
I'm not an expert, but I think you have enough time until the new drugs come out.  The integrase inhibitor is within less than a year and you always have fuzeon.  Even with two effective drugs and a few other semi-optimal choices you should do well on a new regimen.  Most people with that high of resistance have less than a hundred or two t-cells, so consider yourself still fortunate.  The key to this next regimen will be adherence & adherence.  Until then, try not to worry because that will not help.  I know that's much easier said than done, but it's all you can do at this point in time.  Keep us posted!

Offline gerry

  • Member
  • Posts: 522
  • Joined AM Feb 2003
Re: Currently off Meds
« Reply #5 on: December 14, 2006, 11:39:54 PM »
It's a very reasonable option to get off the meds since your CD4 is still fairly high and none of the current meds, other than Fuzeon, might be reliable.  There are some good data coming out with combining Fuzeon with MK-0518.  LINK

Were you also resistant to the newer PIs, including Prezista?  Also, was your resistance to NRTIs only on the basis of K103N genotype, or did you have other NNRTI resistant genotypes?  If it's just K103N, you might also be able to use TMC-125 with your next regimen.

Offline Eldon

  • Member
  • Posts: 2,664
Re: Currently off Meds
« Reply #6 on: December 15, 2006, 12:05:50 AM »
Hello Chemteach7,

Stay calm and ride this out. Your CD4's are in good count right now and your Doctors will be able to determine the best route suited for your meds.

Gerry and Newt are a good source for this sort of situation.

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Offline Chemteach7

  • Member
  • Posts: 15
Re: Currently off Meds
« Reply #7 on: December 15, 2006, 06:53:11 AM »
Thanks guys.... As far as the worry goes.... I guess its mainly myself. I have always been use to meds, good counts and so on. As far as the NNRTi'S I have no idea what genotype test was run or specifics on the test. I was told that. I had a few options on the list left including Prezista yes, and fuzion. The other or others, I dont know, kinda in la la land at the time. I was told that there were three possibily a max of 4 at this time, depending on my tolerance.  May I ask if many people are in this situation ? U of M seemed to make it sound like it was becomming more common

Offline red_Dragon888

  • Member
  • Posts: 2,811
  • Love and Be Love in Return
Re: Currently off Meds
« Reply #8 on: December 15, 2006, 07:13:14 AM »
I like the fact that you are actively trying to know what condition of your status.  I feel as long as you monitor your condition and research for ways to keep healthy, that you will do fine.  I hope everything will work out for you and remember, fear is good in moderation.  Don't let the fear take over.  Stay in control.
Joe
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: Currently off Meds
« Reply #9 on: December 15, 2006, 08:06:50 AM »
If I slow us down  here a bit and look more closely at your post, I hope that we may be able to sort out what is going on: I was having problems with the Doctor I was seeing back in April.  You had been seeing this doctor for a long time?  For a short time?  What were the problems exactly which made you make the move to the U. of Mich.? 

they came back pretty much confirmed that all the med switches and so forth over the years I had developed resistance to all protease inhib., neucs and non-neucs... bar one or two possibilities.   Why did you do all the med. switches?  Were you allergic to them?  Were you getting undesired effects, side effects?  Was anyone paying attention to doing genotype tests before stopping and starting? 

If you were naive to all treatment, your numbers, t cells and viral load would allow for stalling before starting treatment if you wanted to do so.  The idea is that holding off treatment is ok since the lack off current meds available for use is limiting and would exhaust my treatment options if need should come up.   I know that this information will be found somewhere on this site.  There may be clinical trials that the U. of Mich. could get you into.  My personal concern is since your virus has been beaten back will it be stronger in rebounding once you stop everything cold?  Otherwise, your decision makes sense to me.


This is still freaking me out and I DO feel well. My blood work is freaking me out and I am getting really scared.................... My T cells have gone from 590 to 500 and my viral load from 5,000 to 168,000 in 6 months.   I am with you in your reaction, believe me.  The problem is that your numbers are going to show that you are no longer on meds, cd4's decreasing and viral load increasing.  Perhaps your best defense, other than massage and relaxation approaches, is going to be as careful a monitoring system as you can have in place so that you feel that you know where you are until you are back on meds. again. 

Please keep us posted so that we can continue to offer what insights we may have as a group. Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Salteen

  • Member
  • Posts: 35
Re: Currently off Meds
« Reply #10 on: December 15, 2006, 11:01:51 AM »
I would say you don't need to freak out.  When I was 19 I myself just decided to stop meds.  I went to one doctor and he wanted to kill me with meds, my t cells were 200 or 300 something and my viral was 1,000, so I decided not to take his advice and go to another doctor.  It is possible for your t cells and viral to bounce back and forth, my t cells are at 200 and I might need to go back on meds but just waiting right now.  I think you will be fine to wait, and I think your body will thank you, clear it of some of those toxins the meds put in it. ;D

 


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