Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 25, 2014, 05:41:44 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 631824
  • Total Topics: 47834
  • Online Today: 293
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 3
Guests: 175
Total: 178

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: pre existing neuropathy  (Read 1468 times)

0 Members and 1 Guest are viewing this topic.

Offline planonstaying

  • Member
  • Posts: 169
  • Hiv is the FOX,tcells the rabbit, CALL the HOUNDS!
pre existing neuropathy
« on: April 30, 2009, 09:53:18 AM »
I have neuropathy. Since other factors have been eliminated it's assumed it' hiv related because I didn't have the problem before. I will be starting haart after my next appointment. I am of course concerned about side effects but beyond that I am wondering if maybe my neuropathy will get better as a result. Has anyone here experienced an improvement in hiv related neuropathy after starting Haart? I am also scheduling vacation the week I start Haart. Did people generally feel that is a good plan or unneccesary?
If someone tells you  potential consequences of a behavior  it  doesn't  mean they jude you or mit    they may just give a shit about you

Offline thinkertwo

  • Member
  • Posts: 23
Re: pre existing neuropathy
« Reply #1 on: April 30, 2009, 01:41:03 PM »
Vacation is a great idea.  Have lots of things to do that can keep you occupied but leave everything open ended in case you need to rest or feel some changes that are hard to deal with... Also, I would use us.  Let us know the meds. you are on and if something comes up that is not serious like rash...ask us.  When I first started I ran to the doctors every other day.  The co pays got expensive and they wouldn't answer anything without seeing me...many symptoms are common and normal, if your concerned in anyway see your doctor. 

What type of neuropathy do you have and does anyone know the cause; HIV related or did it start with HIV infection?  I have an unusual form of Motor Neuropathy that started with infection and has gotten worse...I'm very interested in speaking to others in similar situations....

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: pre existing neuropathy
« Reply #2 on: April 30, 2009, 01:51:43 PM »
Plan,

If hiv is indeed causing your neuropathy, it may improve when you're on the meds. It would likely depend on how much damage is already done.

However, given your great numbers - a high CD4 and a very low viral load - it's really rather doubtful hiv is the cause of your neuropathy. Hiv-related (as opposed to med-related) neuropathy normally only happens in the presence of a very high viral load and low CD4s. (please don't think I'm doubting what you and your doctor have narrowed it down to - I'm just sayin', as they say...)  ;)

Good luck with starting meds - I hope they do the trick for you.

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

Offline thinkertwo

  • Member
  • Posts: 23
Re: pre existing neuropathy
« Reply #3 on: April 30, 2009, 02:04:41 PM »
Ann,

That's very interesting to me...Since I've been told that I"m one of under 50 people in the US with this type of Motor Neuropathy.  I was also assured that once i started Haart that the symptoms would stop, reverse...It's gotten worse.  I'm with you, over the last 2 years I am convinced (against 2 med teams at MA Gen and Beth Israel) that my condition is not HIV related but a "double whammy"...only one ALS doctor in agreement....I'm kind of stuck and have been told to try Ivig treatments with a 1 in 1000 shot that they may help....sorry to take up your space planonstaying....maybe it can help both of us....

Offline planonstaying

  • Member
  • Posts: 169
  • Hiv is the FOX,tcells the rabbit, CALL the HOUNDS!
Re: pre existing neuropathy
« Reply #4 on: May 01, 2009, 06:40:09 AM »
(Hanks for the support I am a bit scared.They are saying hiv related neuropathy because of the timing and the elimination of other causes.I understand it's unusual but it does happen ;/. I saw a Neurologist at Yale whoose area of expertise is neuropathy and He seemed quite confident it was hiv related and it probably wouldn't get worse. Although it is just small fibre damage He said with sometimes it can cause severe symptoms. Of course it could be frm something else and the timing coincidental since it's cause is sometimes unattributeable.
I see the Dr 6-22 so still. Have some time to adjust. With my numbers I thought I had years to go butresearch is pointing to waiting as unwise.
If someone tells you  potential consequences of a behavior  it  doesn't  mean they jude you or mit    they may just give a shit about you

Online BT65

  • Global Moderator
  • Member
  • Posts: 9,840
  • Vegas baby!
Re: pre existing neuropathy
« Reply #5 on: May 02, 2009, 08:37:16 AM »
Hey Plan,

I have neuropathy, but it started back in the early 90's from the meds they used back then.  Since then, I've been diagnosed with diabetes, which for a long while went uncontrolled, which, of course, made the neuropathy worse.  I take Neurontin for it, and even though my feet are numb, the Neurontin (plus I take a high dose of Ibuprofen) helps a lot with the pain.  So, there are treatments for neuropathy if it doesn't improve.  Keep your chin up.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline planonstaying

  • Member
  • Posts: 169
  • Hiv is the FOX,tcells the rabbit, CALL the HOUNDS!
Re: pre existing neuropathy
« Reply #6 on: May 02, 2009, 03:08:40 PM »
Ty, Neurontin worked for a bit but, Lyrica has been better and with less visual disturbances but a bit more sedating. It's schedule one but anyone abusing it should switch to otc cough medicine it's hella cheaper and stronger :P No narcotics for me  they are like pringles  I can't have one and know it. I guess if it ever gets there my friends will be busy delivering them or I could get a daily dispensor. My thinking just  changes   the second  I feel the oxycodone.
 I still have trouble once my shoes are on a while and  at night it can suck but it's manageable. it would be wonderful if the drop in inflammatory markers  treatment  gives  calmed my nerves down. Anyway, it doesnt keep me isolated which it was initially.  Shoes= pain was a license to  crawl in my cave.
If someone tells you  potential consequences of a behavior  it  doesn't  mean they jude you or mit    they may just give a shit about you

Offline J.R.E.

  • Member
  • Posts: 7,095
  • Joined Dec-2003 Living positive, since 1985.
Re: pre existing neuropathy
« Reply #7 on: May 03, 2009, 06:27:40 AM »
I have neuropathy. Since other factors have been eliminated it's assumed it' hiv related because I didn't have the problem before.


My Neuropathy didn't start until several months after medication was started.  The worst was in 2004. It very well could have been caused by long term effect of the virus, and the fact that my immune system was shot in 2003.( 16, t-cells) But, once again ...the neuropathy didn't start, until I started on medication.

I still have neuropathy. I am not taking any prescription for it. Most days it's tolerable, some days mildly annoying, but not all that painful. It's not as painful as it was in 2004 !!

In 2004, I did try Neurontin, with very little effect back then.



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.