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Author Topic: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!  (Read 1206 times)

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Offline Tempeboy

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  • Posts: 358
  • Like St Francis of Assisi I am wedded to Poverty

Hey all,

I have PN, treating with Pregabalin (Lyrica) and Nortriptyline (Allegron).

I have had it, really fed up with the pain - just from normal everyday walking. 

Please, please share if you know of anything that can help.  I just want to be able to exercise and walk - maybe even go out dancing! 

I am taking Lamivudine which I have heard mixed stories about.  Some say it can contribute, others say not.  Also taking Abacavir and Maraviroc.  I am happy to add, switch or whatever and would appreciate the experiences of others.

TB
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Online Jeff G

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #1 on: January 31, 2014, 06:57:52 AM »
 Peripheral Neuropathy is one of the most dreaded side effects of living with HIV and I understand how it effects all of your daily life . I have lived with PN since the early 90's and its been a roller coaster ride .

It was so severe at one point that when my doctor told me is was not going to ever get any better I was devastated . It did get a little better on its own after I got off interferon but I still struggled with it for years .

PN is not easy to deal with for doctors so they will give you the few meds that can sometime help and that's about it . I say you have a right not to live your life in severe pain and you may want to consider asking to be refereed to a pain management doctor who specializes in pain management and who has access to more treatment options your doctor may not consider .

If you are at the point where PN is impacting your life in a negative way I would insist on a that referral . Best of luck .   

Offline Tempeboy

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #2 on: February 11, 2014, 07:12:32 PM »
Thanks Jeff,

I have seen a Neurologist who specialises in HIV - going through tests, he wants me to have a lumbar puncture :(
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Online Jeff G

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #3 on: February 11, 2014, 07:27:53 PM »
A lumbar puncture is not the happiest way to spend the day but its not as bad as its sounds I promise .

I hope you find out what's up and come back with a good update . 

Offline mikeyb39

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #4 on: February 13, 2014, 11:47:06 PM »
Hi Tempeboy,
I know how difficult this is. my first treatment was on Atripla and I took it for about a year, then my feet started getting numb, then tingling and hurting to the point I could hardly wear shoes.

I went to the neurologist and had all sorts of tests, blood tests, MRI, CT scans and really never got a firm answer except my neurologist said that I more than likely have small fiber nerve damage.

He suggested that I have my doctor switch my meds to see if it helped, so I did that and after about 8 months on my new meds my feet finally started getting back to normal. My feet still get sore at times, but nothing like it was. 

I also take vitamin b12, acetyl L carnitine, N acety Cystein and alpha lipoic acid.  I feel that these supplements helped a lot when my feet were at my worse.

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

Offline guitargal

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #5 on: February 14, 2014, 02:50:28 AM »
my neuropathy comes and goes. it was gone for many years..now it is only a little bothersome..i tired lyrica with cymbalta for fibromyalgia didn't like it a all thats just me. and i don't think i have fibro anyway!

then about a year later i tried nortriptaline but never  liked any antidepressant but it DID help my feet! i went off it cause it mad me sad and cry..go figure.

but now i am starting the epzicom this weekend and worried about it coming back..
this disease sucks!
best to you. the low dose nortriptaline  is better than lyrica i think..i could't go up high enough on the dose because i felt really depressed and puffy so if you can get to the higher recommended dose of lyrica perhaps it will help. IDK
i guess you tried neurontin?

Online Miss Philicia

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #6 on: February 14, 2014, 12:29:09 PM »
I'm starting to think Lyrica is responsible for my recent weight gain. I started it back in July or August, then upped the dose to 150mg twice daily around November, then went from 175lbs to 190lbs.

But now if I want off of it (and frankly I don't think it's helped with PN/sciatica) I'll have to taper evidently, so I can't start to do that until seeing my doctor in late April.
"Iíve slept with enough men to know that Iím not gay"

Offline guitargal

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #7 on: February 14, 2014, 01:22:57 PM »
I just checked the Lyrica warnings again..looks like they added warnings since i was on it. it does say weight gain and CK levels , Creatine Kinase Elevations

"Instruct patients to promptly report unexplained muscle pain, tenderness, or weakness, particularly if accompanied by malaise or fever."
"LYRICA is known to be substantially excreted by the kidney, and the risk of toxic reactions to LYRICA may be greater in patients with impaired renal function. Because LYRICA is eliminated primarily by renal excretion, adjust the dose for elderly patients with renal impairment"

She put me on it (Dr. from pain clinic at renowned hospital)  because i have unexplained muscle pain! She also dxed me with fibromyalgia but when i got the records there is no mention of that word..

I really have no trust anymore in most doctors and i think i finally found one i can trust.

 Dr that prescribed to me never told me of side effects and when i experienced slight edema and severe depression i tapered off and stopped. i was on it 3 months in 2012. I had blurry vision too. I had like 5 pairs of reader glasses all over the place!

vision got better after i stopped  yes!   it never helped with my muscle pain.
 at the time i had/still have a low kidney function and never was told about that!  i should never have been prescribed it. as i was on tenofovir and that is already taxing on the kidneys.

good luck to you all.


another reason i should never have been put on it. thankfully it was only 3 months.

Listen to your body.

Online Miss Philicia

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #8 on: February 14, 2014, 01:27:28 PM »
I have muscle pain (in physical therapy now) but it's arthritis related and began pre-Lyrica, though it's possible that it's gotten worse during that period.

Once you have multiple things going on and doctors adding and subtracting meds left and right it becomes difficult to tell what's going on. Very annoying.
"Iíve slept with enough men to know that Iím not gay"

Offline Tempeboy

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #9 on: February 24, 2014, 01:25:38 AM »

Lumbar punctured - not too bad at all really.

I should add that the experience was made all the more pleasant by the very handsome ( read HOT ) doctor and fantastic clinic staff.

We await the results  ???
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline eric48

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Re: Peripheral Neuropathy - partial response to treatment - I AM OVER IT!
« Reply #10 on: February 25, 2014, 11:36:47 AM »
Vit. B12 worked for me...
Mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

 


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