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Author Topic: Hairy leukoplakia  (Read 1707 times)

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Offline TabooPrincess

  • Member
  • Posts: 279
Hairy leukoplakia
« on: July 13, 2011, 10:28:35 AM »
Has anyone had this, and what were your numbers like at the time?  I'm going for dental confirmation next week but I'm certain this is what I have going by pics on the web and descriptions.  I thought my Cd4 would be too high for this so wondered if anyone else had experienced the same??

Guess it's time for meds.....
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Valmont

  • Member
  • Posts: 333
Re: Hairy leukoplakia
« Reply #1 on: July 13, 2011, 10:35:52 AM »
Maybe not your CD4 but your Virus Load that is high...  It is over 100.000 but in another way CD4 are still quite high...

Well, sorry not to help you more, but I prefer people with most experience that mine to give opinion about your question...
Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY/ATRIPLA/Mylan....
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50%
Dic 2013: Latent TB, started Isoniazid

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Hairy leukoplakia
« Reply #2 on: July 13, 2011, 11:11:40 AM »
I had mild OHL when I was about three months into my diagnosis (four years into my infection). At the time (2001-05-29) my numbers were VL 43,700 CD4 440. It went away on its own after a couple months, with no significant change in my numbers and no meds either.

Are you a smoker? Smokers tend to get OHL, regardless of hiv status, although it is more common in pozzies.

I'm a smoker and I did cut way down on my smoking when I was newly diagnosed. I had actually quit about two weeks before my diagnosis (the longest I've ever managed to stop smoking) but I only lasted about 36 hours into my diagnosis before I started smoking again, although I was smoking a lot less than previously. My doctor thought that re-starting smoking may have been what triggered the OHL and it went away when my mouth got used to me smoking again.

I've never had a recurrence of OHL, despite smoking at least 20 a day again for the past few years. 
« Last Edit: July 13, 2011, 11:13:11 AM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline aztecan

  • Member
  • Posts: 5,430
  • 29 years positive, 57 years a pain in the butt
Re: Hairy leukoplakia
« Reply #3 on: July 13, 2011, 03:06:08 PM »
I don't have anything to add regarding the hairy leukoplakia. Ann did a good job with it.

I would, however, have a sit down with your doc, were I you, regarding beginning treatment.

No, your CD4s are not tanked, but they had consistently been decreasing.

Moreover, your viral load high and appears to be increasing with each set of labs.

You're not on death's door, by any means, but you don't want to wait until you are to start treatment.

Just my 2 cents worth.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline TabooPrincess

  • Member
  • Posts: 279
Re: Hairy leukoplakia
« Reply #4 on: July 13, 2011, 04:46:58 PM »
I don't have anything to add regarding the hairy leukoplakia. Ann did a good job with it.

I would, however, have a sit down with your doc, were I you, regarding beginning treatment.

No, your CD4s are not tanked, but they had consistently been decreasing.

Moreover, your viral load high and appears to be increasing with each set of labs.

You're not on death's door, by any means, but you don't want to wait until you are to start treatment.

Just my 2 cents worth.

HUGS,

Mark


I think you are right.  I had posted a few weeks back about how tired and crap I was feeling - I feel a bit better over past couple of weeks but now my tongue looks really bad.  I also feel like I'm *waiting* to start the medication and that kind of stresses me out, so maybe I just get on and do it.  Although I think I'd have to put a good case forward here - I guess since it's free (nhs) they don't want people starting much before the 350 benchmark..  Anyway, I'm going to see my doctor tomorrow - they didn't want to see me again until november but I think that's too long.

Thanks for advice guys.  I keep looking at my tongue in the mirror and feeling sad.  Aside from vaginal thrush every now and again it's the only real reminder that I'm 'sick'.  As is the case it seems to be the mental stuff that hurts more than the physical.  Denial has been a useful friend of mine for a while now!!!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline mikeyb39

  • Member
  • Posts: 948
Re: Hairy leukoplakia
« Reply #5 on: July 13, 2011, 05:13:26 PM »
I had a little bit of the thrush when i first got diagnosed.  Doctor put me on an antifungal for a couple weeks, seemed to go away and haven't had any issues since.   

I really wish they would come up with a better name than Hairy leukoplakia , just don't sound right. lol
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Hairy leukoplakia
« Reply #6 on: July 14, 2011, 09:12:56 AM »
Princess, I know what you mean about the reluctance to start people between 350 and 500 here in the UK. However, with your high VL plus the problems you've been having (fatigue, feeling crappy, thrush, and the OHL), your doctor should agree that it's time you started again. If my VL were that high and for so long (over a year), despite my numbers hovering in the 400s, I know I'd insist that it was time to start. Good luck hun, you need to stay healthy for that beautiful baby of yours! :-*

edited to add.... I don't know if you saw my response to your thread in June, but I was thinking back then that it was time to talk to your doctor about re-starting ASAP. I'm glad to hear that you're seeing your doctor today instead of waiting until November.
« Last Edit: July 14, 2011, 09:18:40 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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