Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
October 21, 2014, 08:53:00 AM

Login with username, password and session length


Members
  • Total Members: 23737
  • Latest: mithras
Stats
  • Total Posts: 642859
  • Total Topics: 48905
  • Online Today: 221
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

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: does PN go away?  (Read 1929 times)

0 Members and 1 Guest are viewing this topic.

Offline bill1322

  • Member
  • Posts: 17
  • this summer after I cut off the pony tail
does PN go away?
« on: December 23, 2008, 11:33:24 AM »
I've been Poz since 1984, and since 2003 I've been taking Viramune, Viread and Videx. This was my third HAART regimen and I started it after a 'structured hiatus' of two and half years. My Tcells went right back up to 750-800 and my VL down to undetectable within a few months.

Everything was fine until this summer my feet started to burn - particularly the soles. A Google search suggested diabetes. Blood tests said not so, but showed elevated MCV. That's 'Mean Corpuscular Volume' I found out right here on Aidsmeds. Could be caused by B12 deficiency, anemia, and other stuff including Periferal Neuropathy.

Well blood sugar is fine, B12 is fine, iron is fine, but my feet were really tingling. Aidsmeds.com tells me PN is a common side effect of Videx. I also read some of the posts on here and people asked "why are you still on Videx?" It's old technology.

Oct. 29 I saw me ID doc and she switched me off Videx and onto Emtriva. Other side effects then, mostly in the stomach and the bathroom. That part cleared up pretty quick and now I take the 3 meds at bedtime and one Viramune with breakfast.

In the last few days it seems the tingling in my feet is a lot less noticeable. A primary care doc giving a talk at the AIDS clinic said it was very unlikely the PN would go away or even get better, yet mine seems to have done just that.

Do you all think this is a temporary thing or a seasonal thing? Or could the change of meds really have made all the difference?

Bill
 



Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,974
Re: does PN go away?
« Reply #1 on: December 23, 2008, 03:24:01 PM »
Hey Bill,

I've heard one other member say that his doctor said it would eventually go away.  Well, I can tell you mine hasn't and I don't believe it ever will (and neither does my doctor).  I've had PN (peripheral neuropathy) since the early 90's, from the early HIV meds.  In the last few years, I developed diabetes, mostly uncontrolled until 3 years ago, which doesn't help.

Anyway, I would suggest talking to your doctor if it continues bothering you.  However, if it subsides, count yourself lucky. :-*
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: does PN go away?
« Reply #2 on: December 23, 2008, 03:28:07 PM »
My ID doc said the PN would go away but it would be a slow healing process.  I forgot to ask... How slow? and three years later, Osteopenia which has been helped with Physical Therapy and daily stretching exercises.  ;D  Have the best day
Michael

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: does PN go away?
« Reply #3 on: December 23, 2008, 06:54:16 PM »
Hey Bill,

My PN is pretty constant. It is just something I have learned to live with.

But, yours could improve. I've known others who have.

Hang in there.

HUGS,

Mark

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

Offline Miss Philicia

  • Member
  • Posts: 24,207
  • celebrity poster, faker & poser
Re: does PN go away?
« Reply #4 on: December 23, 2008, 07:57:04 PM »
My ID doc said the PN would go away but it would be a slow healing process. 

Are you sure that he didn't say "might" in place of "would" in between your tokes on the bong?  I can't imagine any doctor making such a statement, unless his medical degree was from the Barbizon School of Modeling.
"Iíve slept with enough men to know that Iím not gay"

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: does PN go away?
« Reply #5 on: December 23, 2008, 08:27:55 PM »
Are you sure that he didn't say "might" in place of "would" in between your tokes on the bong?  I can't imagine any doctor making such a statement, unless his medical degree was from the Barbizon School of Modeling.

Well Phylatio, Mon Dear

The conversation was a few years ago and there have been many more bongs than could be imagined...  I was the one who attended Barbizon School of Modeling and failed to graduate.  They moved the school to a loft upstairs, right before graduation and we couldn't find the stairs.   ;D  Have the best day
Michael
(whose elevator does not go to the top floor)

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: does PN go away?
« Reply #6 on: December 23, 2008, 09:56:25 PM »


Michael
(whose elevator does not go to the top floor)

We love you anyway. No, we love  you because you're vertically challenged.

Well, I do, if no one else.

 :-*
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 Oceanbeach

  • Member
  • Posts: 3,565
Re: does PN go away?
« Reply #7 on: December 23, 2008, 10:05:24 PM »
We love you anyway. No, we love  you because you're vertically challenged.

Well, I do, if no one else.

 :-*

Ann Dear,

My parents thought I learned to dress and undress so fast because of Modeling School.  That wasn't where I learned it.  Many have loved me  ;D  Have the best day
Michael

Offline lforsyth

  • member
  • Member
  • Posts: 245
  • Instaurator Ruinae
Re: does PN go away?
« Reply #8 on: January 05, 2009, 06:08:10 PM »
I haven't hear of this, but then again I haven't been in contact with others with HIV that much (they are all gone).  I wasn't put on meds until 1997 and am still on Viracept, Epiver and Ziret.  Long term affects of Viracept is diabetes which my Mother had.  I have pulled muscles in the bottom of my feet all the time and my legs are many times sensitive when the cat wants to climb up to have a good warm place to sit. It really hurts.

I'd like more information on this.  My Doctor is recommending that I start looking at changes to my meds.  I will have to be in Epiver because I have HIV since 1974-5. I was in the group that the vaccine was obtained from. Viracept scares me the most, especially the side affects "accidents".

By the way, 1984 is when I found out also.  I was with my friends and one guy read the CDC findings in the paper to us (Long Beach, CA).  We all knew we probably had it and we all did test positive.  They are all gone along with other friends from that era.

I look forward to reading more on this thread.

Thank you,

Larry
Tested POZ in 1986, knew there was something wrong in 1985. 04/2010 CD4: 975 Viral Load undetectable. Prezista, Norvir, Truvada, Acyclovir, Plavix, Lisinopril, Metoprolol and a bedtime snack of Lipitor (YUM)

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: does PN go away?
« Reply #9 on: January 05, 2009, 09:24:44 PM »
I haven't hear of this, but then again I haven't been in contact with others with HIV that much (they are all gone).  I wasn't put on meds until 1997 and am still on Viracept, Epiver and Ziret. 

I look forward to reading more on this thread.

Thank you,

Larry

Hey Larry,

The first time I found out about me and  PN, I was being treated at the Care Clinic at St. Mary's (Long Beach).  My doc changed my meds to Epivir and Zerit, but I do not remember if I had ever taken Viracept.  The symptoms went away in a short amount of time.

I moved to a small town which failed to provide an ID doc at the HIV Clinic and a med change was not acceptable to me.  My T-cells count was considered to be stable at near or around 350 and my VL was consistently undetectable since 1998, I was not considered to be in need of the visiting HIV specialists.  There were several years of pain before I moved to Sonoma County and my meds were changed.  I have been taking Sustiva and Trizivir for a few years now and the PN is "manageable" with exercise stretching and I get confused because I also have RLS and Osteopenia so I naturally forget which the Gabapentin is for.

I was sent to a Sports and Rehab Clinic for evaluation last Fall because Medicare will pay for evaluation and some training but not for a gym membership or continued care.  The continued care is at my expense and I can go back to the Sports Rehab clinic every 6 months for re evaluation.  I go again next month.   ;D  Have the best day
Michael

Online GSOgymrat

  • Member
  • Posts: 5,037
  • HIV+ since 1993. INTJ
Re: does PN go away?
« Reply #10 on: January 06, 2009, 08:32:42 AM »
Hi Bill,

Back when I was on Videx and Viramune I had what I think was PN, although I was never officially diagnosed because I never discussed it with my doctor. I had "pins and needles" feelings in my feet and toes. It was particularly noticeable at night and sometimes I would wake up with it. The symptoms stopped after I switched medications.

Offline bill1322

  • Member
  • Posts: 17
  • this summer after I cut off the pony tail
Re: does PN go away?
« Reply #11 on: January 06, 2009, 12:33:14 PM »
My PN, if that's what it was, continues to improve and is usually not even noticeable. I think it all has to do with the change from Videx to Emtriva. I go back for blood work in a month but in the meanwhile my feet have almost stopped having "pins and needles." I also take Cymbalta, which is supposed to help but I take it as an antidepressant instead of Paxil.

I'm really happy with the change in medication and my stomach and bowels are finally happy about it too!

On the latest bottle of Viread to come from the pharmacy I notice a yellow sticker - Take With Food. I've never seen that on Viread before. Is it something new? I take it at bedtime, with a calcium pill.

Bill

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: does PN go away?
« Reply #12 on: January 06, 2009, 12:37:32 PM »
Hey Bill,

My PN is pretty constant. It is just something I have learned to live with.

But, yours could improve. I've known others who have.

Hang in there.

HUGS,

Mark



Same Here, after 12 yrs. I've learned to live with it, my feet still get numb, and sometimes I can't feel them  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline bill1322

  • Member
  • Posts: 17
  • this summer after I cut off the pony tail
Re: does PN go away?
« Reply #13 on: January 06, 2009, 12:44:49 PM »
And for Larry:

I took Viracept for a few years between 1998 and 2002. I know what you're talking about with the "accidents."

I had a "structured hiatus" of two and a half years with no medication and when I started meds again I started with Viramune, Viread and Videx, with virtually no side effects until the PN this passed summer. I think the meds have come a long way since Viracept.

I would certainly talk to the doc about a change. I don't think you should have to put up with the "accidents" unless the doctor has a good reason to keep you on that drug.

Good luck,

Bill

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: does PN go away?
« Reply #14 on: January 06, 2009, 01:16:53 PM »
I developed PN in 1996. It's hard to pinpoint the cause, but it most likely was related to the Zerit and Videx that I had been taking at various times. For a couple of years it was extremely painful, often keeping me awake at night. Removing my shoes and socks helped some, as did soaking my feet in very cold water. Over the years the PN has quieted down quite a bit. It's still there and still uncomfortable, but the intense burning is now gone. Now it's mostly a tingling sensation that varies from very strong to barely noticeable. It's something I've learned to live with.

When the PN was very strong I tried various remedies, including acetyl-L-carnitine and alpha lipoic acid. They didn't provide any relief for me. I also took high-dose Neurontin, but that made me sleepy and dizzy and did not relieve the PN.

Allan

Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

 


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.