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Author Topic: 26 years with HIV  (Read 6611 times)

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Offline queryme

  • member
  • Posts: 2
26 years with HIV
« on: February 23, 2011, 10:21:03 AM »
First this is my first post. I admit I am suspicious of things like facebook, blogs, twitter call me old fashioned I like phone calls and letters. So I am taking a baby step into this world by posting this message. 

My reason for writing is because of increasing problems with neuropathy in my feet and legs. I am working with my physician and started taking Gabapentin last fall. Initially it helped, though I found myself feeling tired and, well, for lack of a better word for it, stoned. But my feet are bothering me more and more, last night was one of those nights with stabbing pains in my toes, numbness on the bottom of my feet and a this feeling my feet are cooking from the inside out.

I called in sick to work today, I am exhausted from the symptoms and didn't sleep much at all, now my symptoms haven't changed much from last night.

So, just as I did back in the 80's when I first tested positive for HIV I am turning to the experts. I would welcome any information anyone has on what has worked for them and what doesn't work for them in treating and living with neuropathy.

Thanks.

Offline rondrond

  • Member
  • Posts: 1,712
Re: 26 years with HIV
« Reply #1 on: February 23, 2011, 11:10:05 AM »
Hi queryme,

Welcome to the forums, or welcome to posting.  :D

Sorry to hear about your neuropathy problems...there are many here who have the same issue. My friend, I'm afraid that is one of those questions that is not going to have an easy answer...everyone is different....with some of the same.

My term for cooking feet was 'hot ice' and the burning sensation is worse when I take a shower. I took Gabapentin, and there are others who do, at varying doses. Just make sure you always tell your doctor how you are feeling so they can determine if you are getting the correct dosage. There are also other medications that they might recommend.

I have been living with HIV for ,,,March 1st will be 18 years. I notice your title states 26 years, but you don't give much else for anyone to really give an informed answer to your questions. What meds are you on? How long have you been on them? What type of work do you do? Are you on your feet all day or sitting a lot? 

Sorry that I can't answer your question specifically, but there are some here who can.

Again welcome,
Ronnie
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline lilguru

  • Member
  • Posts: 30
Re: 26 years with HIV
« Reply #2 on: February 23, 2011, 12:07:11 PM »
I am going on 24 years with HIV.  I have had neuropathy almost throughout the entire time.  It varies on its intensity.  I am kind of lucky in that it hasn't gone above feet.  I did a clinical trial a couple of years ago and the treatment worked really well, but the procedure turned out to be too difficult to do in a clinical setting -- it took too long and required too much time.  It did seem to tone down my neuropathy.  I took gabapentin for 2 weeks but I didn't like its side effects.  I take Pamalor (nortriptyline) daily and it helps to keep the burning to a manageable hurt.  I would like to see what others are doing.  Nothing feels better to me than stepping barefoot onto the floor in the freezer section of my grocery store.  Good luck my friend, sorry that you are going through pain.
September 1987 - HIV+

Offline queryme

  • member
  • Posts: 2
Re: 26 years with HIV
« Reply #3 on: February 23, 2011, 08:40:01 PM »
Thank you both for your responses.  You are right, I forgot the other details. I started on AZT in 88 and later progressed through ddI, ddc and D4T and finally 3TC as monotherapy. AZT was part of several combos up until 1996. I took a drug holiday for about a year. The neuropathy was at it's worst in the mid 90's where I was at the stage where I couldn't stand to take a shower or sleep with covers on my feet. I tried Acetyl L Carnitine and it may or may not have helped.  I was symptom free from the late 90's until mid 2009 when I noticed my feet hurting and that my balance was off. I didn't associate it  with neuropathy until last year when the pain came back. I never got over the feeling of padding under my foot or the occasional shooting pain in my toes. Things have amped up the last seven months to the point where I am missing work due to pain and fatigue.

I picked up some Acetyl L Carnitine this morning to see if this would help and while I hate to see more pills in the pill box again I am going to try this and see if it helps.  I will take your advice and keep a journal to track symptoms. I am taking the max dose of Gabapentin and admit I am wondering if this is the best medication and I am at the maximum dose then I am not looking at a lot of options to treat this condition.

Okay this is sounding like whining. Let me stop. I want to close by thanking  both of you for sharing your thoughts and experiences. This is exactly what I liked most about the group support I got when I first tested positive years ago, sharing information with other positive people which, at least for me, did more to fight the sense of isolation and fear in those early years of the epidemic.  So big hugs to both of you.


Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: 26 years with HIV
« Reply #4 on: February 23, 2011, 10:32:59 PM »
Hey Queryme,

Welcome, first of all.

Next, I am right there with you. My neuropathy extends from my knees down and varies from day to day in intensity.

I also am taking Acetyl L Carnitine. It seems to help, but you have to consistent with it. My problem returns when I am too long without it.

I hope it provides you some relief.

Keep us posted.

HUGS,

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

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: 26 years with HIV
« Reply #5 on: February 24, 2011, 08:31:48 AM »

My reason for writing is because of increasing problems with neuropathy in my feet and legs. I am working with my physician and started taking Gabapentin last fall.
Thanks.


Hi there,

25 years HIV positive here.  My experiences with neuropathy are on going, and also seem to vary in intensity from one day to the next. Mine also starts from about the knees down, and I also have it in both arms, from about the elbows right down to the finger tips.

However, I don't currently take anything for it.  In 2004, just after starting on treatment, was when it was at it's worse.

It just seemed to come on overnight. I remember sitting one night watching TV with my partner, when I started rubbing my feet.  He asked if something was wrong, and I said that my feet feel,  as though they are asleep.  Well,... That was the start of it. For probably the next couple weeks, the pain was almost intolerable. I always explained it at that time as a severe frostbite type of feeling.

Taking a shower was painful, when the water would hit the feet. felt like nails hitting the feet. And trying to find a comfortable pair of shoes is close to impossible.

For a while I couldn't even drive my car, it hurt too much to push the clutch, and even the gas peddle.

I've also taken Acetyl L carnitine,  but haven't taken it for a while now.  Most of the time I can tolerate the neuropathy, other times I take an anti inflammatory.

In my case, as my t-cells climbed the pain became much less,  but it still noticeable everyday.


I still take my shoes off at work every night. I am glad I am able to to do this, otherwise, an 8 hour night would be pretty damn long.

I also hope you find some relief.


Ray
« Last Edit: February 24, 2011, 08:33:19 AM by J.R.E. »
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.

Offline wolfter

  • Member
  • Posts: 4,389
Re: 26 years with HIV
« Reply #6 on: February 24, 2011, 12:18:59 PM »
I can't address this specific issue as it's one of the few things I haven't suffered yet, but wanted to welcome you.  You'll discover a wealth of information here and I hope you discover the sense of community that I have.  I never joined any support groups until my latest illness and I now have so many people here whom I admire.

Welcome!
Greg
productivity breeds content

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: 26 years with HIV
« Reply #7 on: February 24, 2011, 07:33:35 PM »
Gueryme,
Welcome to the forums. Congrats on your 26 years of surviving HIV/AIDS. I am starting my 26Th year as well.

I have had Neuropathy for about 10 years now. I have tried about everything. Sorry to report nothing has really worked that well.
Has the gabapentin helped you at all? I have recently started taking Savella for my fibro...That has really helped me with muscular pain in my neck and shoulders. I thing it has helped with my feet cramping up.

Best of luck, hang in there!
Positive since 1985

Offline rondrond

  • Member
  • Posts: 1,712
Re: 26 years with HIV
« Reply #8 on: February 25, 2011, 11:02:34 PM »
Hi queryme,


Inquiring minds want to know. How are you today? Is the Acetyl L Carnitine working?
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline OneTampa

  • Member
  • Posts: 2,104
  • "Butterflies are free."
Re: 26 years with HIV
« Reply #9 on: February 26, 2011, 12:41:44 PM »
Welcome Queryme,

I also reached 26 years HIV+ this January.  I have not experienced the neuro pain discussed here but wish everyone the best and hope you get relief.

Take care.
« Last Edit: February 26, 2011, 12:43:15 PM by OneTampa »
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: 26 years with HIV
« Reply #10 on: February 26, 2011, 01:08:32 PM »
Welcome  :) lots of great info around here, and lots of knowledgeable folks too, I've been struggling w/ HIV/AIDS for the last 20 yrs. and I'm sure it may have been longer then this, again welcome  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Buckmark

  • Member
  • Posts: 1,520
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: 26 years with HIV
« Reply #11 on: February 26, 2011, 01:37:37 PM »
First this is my first post. I admit I am suspicious of things like facebook, blogs, twitter call me old fashioned I like phone calls and letters. So I am taking a baby step into this world by posting this message. 

Welcome.  I think you can find a lot of good people, information and assistance in the online world.  You'll also find a lot of crap, too, so you'll need to learn to think critically and separate the wheat from the chaff.

Quote
My reason for writing is because of increasing problems with neuropathy in my feet and legs.
...
But my feet are bothering me more and more, last night was one of those nights with stabbing pains in my toes, numbness on the bottom of my feet and a this feeling my feet are cooking from the inside out.

I called in sick to work today, I am exhausted from the symptoms and didn't sleep much at all, now my symptoms haven't changed much from last night.

One of the members of my therapy group suffers from neuropathy, and it was debilitating for him, as it sounds like it is for you.  He swears by acetyl l-carnitine -- religiously!  He's also done some presentations about neuropathy with our local ASO.  Different things work for different people, and not everything works for everyone.  It might be a worth a try for you.

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,854
  • Vegas baby!
Re: 26 years with HIV
« Reply #12 on: February 27, 2011, 05:30:54 AM »
Welcome to the long-term survivors.  I've been positive for 21 years, and have had neuropathy for several years.  I was on Gabapentin at like 900 mgs 3 x a day.  I got pretty dizzy while on this, so my doctor switched me to Lyrica.  I don't get the side effect of feeling drowsy like some others do.  My feet are still numb, with shooting pains sometimes.  I had a 5-speed car I had to give up, because I couldn't feel the clutch at all after awhile.  So, I empathize.  I hope the med you're taking works for you.  Please let us know!  I'm curious about it.  Again, welcome.
  L-
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline sorryass

  • Member
  • Posts: 77
Re: 26 years with HIV
« Reply #13 on: February 27, 2011, 06:05:15 PM »
Interesting reading here guys.  I also am a new member, 25 years hiv+.  DDI drugs are the likly suspects for the neourpathy problems lts's experiance. 

My doctor decided to use M-eslon for me.  It's a form of morphine, very slow release.  I do not get a "high", but I do get relief from the painfull neouropathy that if left unchecked would have me in agonizing pain, from my feet, to my finger tips.  I use 45mg, X2 Daily.  I do believe I will look into the Lyrica, and the acetyl-carnitine some of the members have mentioned they are useing.

All the best,
Bertram.   
Once a gardener,...............er!

*Ritonavir 100mg 2-Day
*Etravirine 100mg 2-Day
*Raltegravir 400mg 2-Day
*Prezista 600mg 2-Day

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: 26 years with HIV
« Reply #14 on: February 28, 2011, 12:59:38 AM »
Welcome Bertram,

Glad you've joined in.

When you get a moment, why don't you start a thread introducing yourself. There are a lot of nice people here and great support.

Again, glad you've joined us.

HUGS,

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

Offline lipoenvy

  • Member
  • Posts: 61
Re: 26 years with HIV
« Reply #15 on: March 02, 2011, 10:49:16 PM »
For me, extra B-6 and calcium-magnesium have helped.  But my neuropathy has been in the mild to moderate range.

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: 26 years with HIV
« Reply #16 on: March 03, 2011, 10:02:06 AM »
For me, extra B-6 and calcium-magnesium have helped.  But my neuropathy has been in the mild to moderate range.


Mine is at it's WORSE in the winter  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline mikejh

  • Member
  • Posts: 31
Re: 26 years with HIV
« Reply #17 on: March 03, 2011, 08:02:32 PM »
Hi Guys
Have had neuropathy for the last 8 years feet and legs plus hands and arms, it got worse after I were diagnosed with Aids CD4 37.
Have tried several medication incl Acetyl-Carnitine, Lyrica, Simbalta, Garbapenton 2700mg and nothing really worked. Were sent to a pain specialist by my neurolog and he gave me Avinza 45 mg tvice per day and Ocycodone 15 mg up to 6 tablets per day. These medications work well and I don't get a high feeling from them.
Mike
CD4   %
22 Sep 06   37     5  Started Atripla
5   Oct 06   82     9
1   Dec 06  258   13
25 Jan  07  263   14
1   May 07  403   18
6   Aug 07  438   22
7   Nov 07  417   19
30 jan   08  310   19
7   May  08  285   20
6   Aug  08  472   27
12  Nov 08  444   26
11  Feb  09 335    19
10  May  09  460  25

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: 26 years with HIV
« Reply #18 on: March 04, 2011, 08:42:45 PM »
For me, extra B-6 and calcium-magnesium have helped.  But my neuropathy has been in the mild to moderate range.


L,

You may want to be careful with additional doses of B6.  Larger, consistent doses of B- 6 have been known to cause PN. ( over 200mg a day)


http://www.aidsmeds.com/articles/Neuropathy_6911.shtml


"Conversely, taking too much vitamin B6 (more than 200 mg a day) can actually cause this condition." Taken from the above link.


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.

Offline 30Years

  • Member
  • Posts: 22
Re: 26 years with HIV
« Reply #19 on: March 22, 2011, 09:00:12 PM »
Cool!!!!  We are here to support one another.  I have been positive for 30 years....I was infected at age 7.

Offline Theyer

  • Member
  • Posts: 2,488
  • Current ambition. Walk the Dog .
Re: 26 years with HIV
« Reply #20 on: March 23, 2011, 04:54:27 PM »
First Welcome

After a 2 year period off experimentation with a Pain Control consultant  Fentalyn patches, Venlafaxin an anti depressant , Paracetamol.   The important part was to also find the dosage and stick to it wether pain was flaring up or not. This for some reason was very differcult .

However the above cocktail works for me.
Best wishes theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Sfteve

  • Member
  • Posts: 14
Re: 26 years with HIV
« Reply #21 on: March 31, 2011, 03:54:13 PM »
Hi everyone!

First of all, THANK YOU for this forum, BIG HUG to all!

I was diagnosed with HIV in Sept 1984 (I am 52 now), and after a long list of meds and some unfortunate events over the years I find myself doing fairly well. I have lost many friends and made many new ones along the way. I lived most my life in San Francisco, CA where I found no problem relating to my gay and POZ communities. Talking with friends about HIV/AIDS, everyday issues or new developments was very much part of my life until...

I recently moved to New Mexico where I find it very hard to meet other POZ men. I have tried some gay social activities but it seems like I run into solid walls when it comes to talking about HIV/AIDS.  :-\

 





HIV since 1984, Cancer survivor since 1996.
Tcells= 678, Undetectable
Prezista
Truvada
Norvir

 


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