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Author Topic: Peripheral Neuropathy  (Read 7577 times)

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Offline AndyArrow

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Peripheral Neuropathy
« on: April 10, 2008, 09:10:06 PM »
For the past several months I've been having this tingling in my feet.  It feels like they are asleep all the time and usually there cold.  It's starting in my hands as well just recently and I wondered if anyone else has had a similar experience and what the did or do for it?  Have a call in to my ID people.

thanks
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Peripheral Neuropathy
« Reply #1 on: April 10, 2008, 09:31:51 PM »
Yeah, that's probably what it is, though of course I hope not.  Were you on all those nasty things like ddi, ddc and hivid back in the 90's?  They'll probably put you on Neurontin, which is prescribed "off label" for PN as it's an anti-convulsant generally used more for epileptics (I think).  I take 3 x 300mg capsules each night about an hour before bedtime, as it's slightly sedating.
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #2 on: April 10, 2008, 09:39:39 PM »
Thanks for all the info.  It's really appreciated.  I was on Zerit in the 90s and I was on Dapsone for the past several months.  I recently read that Dapsone can also be a cause.  I could use a good sedative most of time  ;)

Thanks again!
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline next2u

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Re: Peripheral Neuropathy
« Reply #3 on: April 10, 2008, 10:34:27 PM »
dude, andy, you are soooo not alone. i was too "whatever" to post pn concerns here. it started bothering me last week and has become a daily occurrence. im not on meds and am having a tingling sensation in both of my hands and feet. its similar to the sensation of having a leg or arm fall asleep. sometimes it happens at night and it wakes me up. also, at times it feels like cool waves are passing underneath my skin, mainly my fingers. the shit scares the hell out of me, i don't want to have to think about not working because of it. right now it is mild and i would love to get info on how to halt or slow its progression.

anyhow, there are a couple of other threads here on the same subject. someone recommended some vitamins. others suggested massages or possibly acupuncture. if anyone has additional information or experience please let us know. there is a guy in my support group who had really bad pn from some of his meds. now, his pn is gone. it looks like it may not be a permanent fixture. i also have another friend who became handicapped because of hiv's affect on his nervous system but i don't know if pn was a factor. thanks for any feedback. 
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Miss Philicia

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Re: Peripheral Neuropathy
« Reply #4 on: April 10, 2008, 11:15:34 PM »
nextie, please keep in mind that there are several kinds of PN.  You're most likely having the kind that can happen, though a bit rare, after initial infection -- hence not caused by HIV meds.  Andy's been on HIV meds for a decade (I think) and the meds in the 90's were rather notorious for causing PN, and quite acute PN.  I've seen guys so debilitated that they needed to use a cane.
"Iíve slept with enough men to know that Iím not gay"

Offline next2u

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Re: Peripheral Neuropathy
« Reply #5 on: April 10, 2008, 11:53:09 PM »
thanks philly, didn't realize there were multiple pns out there. i was concerned about it worsening, whether from meds or not.

since im not on meds im not sure what to expect. to exacerbate matters, my dr's assistant cancelled my appt and now i can't see him for over a month. i don't really know what to do at this point. im not sure if there is much i can do and was hoping to reach others with a similar experience for advice. i didn't want to start another thread, so i figured id cast my opinion here. do you have more information about pn after initial infection? does it typically get worse? is it alleviated by meds or some other activity? of course ill pose these questions to my doc when i see him, but any info now would be great.

seriously, i think about it more than i want to and it's starting to fuck with my head. being poz, dealing with meds, my head is wrapping itself around these ideas, albeit slowly. this (the pn) is something that reared its ugly head and i can't stop looking at it. i keep thinking ill have to give up my job or worse. uggh, i don't know what to say and im sorry for hijacking this thread. 
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Miss Philicia

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Re: Peripheral Neuropathy
« Reply #6 on: April 11, 2008, 12:04:51 AM »
Here's a run down on various facets of PN:

http://www.hopkins-hivguide.org/diagnosis/organ_system/neurologic/neuropathy__peripheral.html

This link is more abbreviated, but you'll see that AIDP/CIDP type PN (section b) might be worth mentioning to your doctor.

http://www.aegis.com/topics/oi/oi-neuropathy.html
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #7 on: April 11, 2008, 12:15:56 AM »
Andy's been on HIV meds for a decade (I think) and the meds in the 90's were rather notorious for causing PN, and quite acute PN.  I've seen guys so debilitated that they needed to use a cane.

You are correct been on meds for a long time.  I've been reading up on it but always looking for more info.  Especially, since it mentions a burning feeling ... mine is a pins & needles kind of thing.  Feet & fingers falling asleep like next said.  Hopefully, I hear something from My NP soon.

Thanks again Philly
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline next2u

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Re: Peripheral Neuropathy
« Reply #8 on: April 12, 2008, 12:09:11 AM »
let us know what happens andy
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline rondrond

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Re: Peripheral Neuropathy
« Reply #9 on: April 14, 2008, 08:50:32 AM »
For the past several months I've been having this tingling in my feet.  It feels like they are asleep all the time and usually there cold.  It's starting in my hands as well just recently and I wondered if anyone else has had a similar experience and what the did or do for it?  Have a call in to my ID people.

thanks
AA

I too crixivan/epivir/zerit from 1993-2001. Went off that cocktail in 2001. I started my own vending business and was on my feet, running 7 days a week 15 hours a day. Last year, @ February, I noticed that my toes would start getting numb toward the end of the day and then my feet started to cramp. Stamping my foot or tapping , hard against the floor board would relieve the pain/numbness. I started to get to where stamping my foot did not work any more and then I had a DVT (blood clot) in my right leg. Now my foot/ toes are numb all the time with occasional twinges and 'rushes' of what feel like cold blood going through my foot and toes. I had a diabetes test, which came back as Borderline Diabetic and am now taking Gabapentin/300mgs/once a day before bedtime. It has not helped and I don't think I could handle a higher dosage as it makes you sleepy. I already 'nod out' and wake up falling out of my chair on the once a day. My arms/hands only tingle when I have nodded out and have been leaning on the armrest of the chair too long. hmm. not too helpful here except to say
*have you been checked for diabetes?
*possible blood clot/have you had any pain or swelling with the tingling?
*they keep talking about the side effects of 'old meds' ...if there were no symptoms from old meds at the time of taking them, has there been damage done that shows up after 7 years?
anyway, that's what I've experienced..
good luck with your metting with you ID.
"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 BT65

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Re: Peripheral Neuropathy
« Reply #10 on: April 15, 2008, 10:03:08 PM »
I'm on 2400 mgs a day of Gabapentin (Neurontin) and it doesn't make me sleepy at all.  Of course, my tolerance to drugs is high.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Peripheral Neuropathy
« Reply #11 on: April 15, 2008, 10:57:34 PM »
I get sleepy from mine - but I take all of mine (900mg) at bedtime so I'm OK with the sedation, which isn't wildly sedating even then.  I definitely don't feel sleepy still when I wake in the morning.

300 mg would be like a water pill to me.
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #12 on: April 16, 2008, 12:10:03 AM »
Thanks for all the insight.  Since I was away I haven't heard back from my ID people. 

I will need to find out about testing to see if I'm Diabetic.  I know those old meds worked on the hiv but they weren't too kind to everything else either.  I do love my sweets so that would be another thing to cope with.  Boy ain't life grand!  Actually, I know I could be a lot worse of so I am greatful.

I let you know where I hear something.  I already take something to help me sleep so anything that causes drowsiness is a good thing in my book.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: Peripheral Neuropathy
« Reply #13 on: April 16, 2008, 10:20:45 AM »
I do love my sweets so that would be another thing to cope with.  Boy ain't life grand!  Actually, I know I could be a lot worse of so I am greatful.
AA

Andy, just because I'm diabetic, it didn't turn me into a no-sugar person.  I still indulge.  I just try to balance things out.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Peripheral Neuropathy
« Reply #14 on: April 16, 2008, 03:08:36 PM »
Hey Andy,

Are you having any of the other symptoms of diabetes, such as being thirsty a lot, having to pee a lot, problems maintaining blood sugar levels? Just wondering.

I have PN that runs from my knees to the soles of my feet. Mostly just achy, but sometimes the stabbing, sharp needlelike pains. The feet do burn, especially if I am on them a lot. Sandals are a blessing, but not in frigid winter temperatures and I can't wear them at work.

I don't take Neurontin, or anything else for it. It is pretty much bearable for the most part.

Hey Next,

I know someone who has developed PN just from HIV. He'd never been on meds. But he is now, because it seems with this type of PN, kicking viral ass actually helps reduce the pain.

I wish you both good luck.

HUGS,

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

Offline pozattitude

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Re: Peripheral Neuropathy
« Reply #15 on: April 16, 2008, 03:49:04 PM »
hey Andy,

I took Videx (ddl) for 10yrs and I have PN because of it.  I take Cymbalta (which is an anti-depressant) and it helps me a lot.  I don't have the tingling and numbing anymore and only feel pain when I really push myself (mostly my left leg and my left hand).  The D drugs from the 90's are famous for causing PN.

good luck to you

Rich
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Miss Philicia

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Re: Peripheral Neuropathy
« Reply #16 on: April 16, 2008, 03:51:27 PM »
Cymbalta works for PN?  I took it as an anti-depressant 2 years ago but it was a sugar pill that only caused me to blimp up and my blood pressure to rise.

Guess I had a weird experience or something.
"Iíve slept with enough men to know that Iím not gay"

Offline pozattitude

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Re: Peripheral Neuropathy
« Reply #17 on: April 16, 2008, 03:58:05 PM »
Yep, Cymbalta is also used to treat diabetic peripheral neuropathy as found by accident in a study and lucky for me it has done its thing for me, including the depression.  :D
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #18 on: April 17, 2008, 01:43:14 AM »
Andy, just because I'm diabetic, it didn't turn me into a no-sugar person.  I still indulge.  I just try to balance things out.


I know what you are saying ... I just eat WAY too much sugar laden foods.  If it's a choice between a hardy meal or a piece of pie, the piece of pie is gonna win everytime.  I don't really enjoy cooking but I love to bake because I love eating the results so much!

As far as other symptoms that's a hard one to judge (haven't had my blood sugar levels checked recently.  I have always drunk large amounts of water/juice/coffee/iced tea/diet coke.  My mother was afraid I was diabetic when I was young because I was always thirsty & have a small bladder.

I appreciate all the advice.  I haven't heard back from my id people so I just left another voicemail and sent and email.  I'll let you know how things are going.

AA
« Last Edit: April 17, 2008, 01:45:26 AM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline pozattitude

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Re: Peripheral Neuropathy
« Reply #19 on: April 17, 2008, 11:05:48 AM »
AA,

I am a sugar FREAK...just like you I will eat the sweets rather than a real meal...My mom also was worried about me possibly becoming diabetic because I eat so much sugar and drink a lot of water and have a small bladder too...lol...
I constantly check my sugar levels and so far they are "normal".  I have a really bad case of Adult ADD and I think there is a link between my ADD and the sugar intake..I notice I don't crave sweets when I take my ADD meds but if I skip it, I can tell right away because I become the Cookie Monster...

Rich
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #20 on: April 17, 2008, 05:49:38 PM »

I notice I don't crave sweets when I take my ADD meds but if I skip it, I can tell right away because I become the Cookie Monster...

Rich
Hahaha!  I know exactly what you mean about being the Cookie Monster.  Scary how I can wipe them out. 

I just found out that my blood sugar levels are normal.  The doctors want me to have a blood draw to check for a B12 deficiency and in the mean time I will be starting on Amitriptyline.  They phoned it in directly to the pharmacy so I don't know the dosage yet but will pick it up tomorrow and let everyone know that the deal is.  thanks for you input.

AA
« Last Edit: April 18, 2008, 01:28:35 AM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #21 on: April 20, 2008, 12:51:04 AM »
I started 50mg of  Amitriptyline (generic for Elavil) last night.  I'm not sure how long it will take to feel any effects but I would imagine at least a couple of weeks. 

I've read that amitriptyline was originally used as an antidepressant but is now used often to treat chronic pain. 

The funny thing is I was already on prozac for depression and trazodone to help me sleep so I'm now on 3 antidepressants.  If in 3 or 4 weeks I'm not the happiest (fill in your choice of expletives here) then something is seriously wrong!  :D

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: Peripheral Neuropathy
« Reply #22 on: April 20, 2008, 05:51:54 AM »
I started 50mg of  Amitriptyline (generic for Elavil) last night.  AA

Andy,

Good luck with the amitriptyline. My doctor gave me a months supply, back in 2004, but I never started it. I had posted about it here :


http://forums.poz.com/index.php?topic=17133.msg218551#msg218551



 I Held off on it. Let us know how this works for you...


Take care of yourself--------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 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #23 on: April 20, 2008, 12:58:27 PM »
Ray

Thanks for the link.  I love reading other peoples perspective. 

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline rondrond

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Re: Peripheral Neuropathy
« Reply #24 on: April 20, 2008, 10:13:08 PM »
wow, sometimes you gotta walk a mile in someone else's shoes. My toes and bottom of my feet have been numb for months and I have been wearing nothing but sandals with adjustable straps to accomodate my edema. Today, I decided to put on my old work boots to mow the yard and I had to pull them off twice to check for rocks. Now, I know what some of  my friends were talking about when they said that there feet hurt, and I am ashamed to say, I did not quite believe them until today.
"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 AndyArrow

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Re: Peripheral Neuropathy
« Reply #25 on: April 24, 2008, 02:05:42 AM »
I understand rondrond it's hard to imagine when you don't feel it. 

It seems to be getting much worse rather quickly but since I just started taking something for it on the 18th I'll hold off before going into panic mode.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: Peripheral Neuropathy
« Reply #26 on: April 28, 2008, 09:50:54 AM »
I remember when we used to bang our feet against walls trying to get them to stop hurting, before treatments were available for PN.  Andy, let us know how you're doing.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: Peripheral Neuropathy
« Reply #27 on: April 29, 2008, 01:27:06 AM »
So far I'm not really feeling any improvement with the Amitriptyline but it's only been a little over a week so I'll have to wait and see.  I'm going to see a new ID doctor on the 7th (he is a lot closer then my current ID people) so I will check in with him and see what he thinks as well. 

I will also see what he things about my regular meds since everyone I haved talked to said it sounds like overkill.  Fuzeon/Truvada/Norvir/Prezista/Isentress.  And right before that I will have another proceedure done on my esophagus on 5 May.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: Peripheral Neuropathy
« Reply #28 on: April 29, 2008, 08:32:05 AM »
Andy, will you have to keep having these "procedures" done on your esophagus the rest of your life?  *shudders*

Well, as far as the PN is concerned, like I said previously, Gabapentin (Neurontin) works for me.  I do take a large dose (2,400 mgs a day), but that keeps it pretty well under control.  Let us know what the new ID doc has to say.  Good luck, baby.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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