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Peripheral neuropathy is a bitch

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I have had PN for about 10 years, 2 weeks ago I could harldy walk with the help of a cane and could almost feel nothing below my waist.  Then a week ago I saw my first neurologist and was prescribed Lyrica- HUUUUUUUUUUUUUUURRRRRAAYYYYYYY.

I have my legs back , feel like I havent felt in 10 years, and still feel weak , the therapy should help.  I know it wont work for everyone, but, I feel like giving the guy, or gal who came up with it a big fat valentine.  Talk to your doc, maybe you can get a sample to try.  it worked for me, i feel 20 years younger ;)


I'm glad the Pregabalin (Lyrica) worked for synergyhomepage, however in at least one fairly large (n=151 for each group) randomized, double-blind, placebo controlled drug trial Pregabalin was no better than placebo for HIV neuropathy.

Pregabalin for painful HIV neuropathy: a randomized, double-blind, placebo-controlled trial.

Simpson DM, Schifitto G, Clifford DB, Murphy TK, Durso-De Cruz E, Glue P, Whalen E, Emir B, Scott GN, Freeman R; 1066 HIV Neuropathy Study Group.
Mount Sinai School of Medicine, New York, NY, USA.

Pregabalin is effective in several neuropathic pain syndromes. This trial evaluated its efficacy, safety, and tolerability for treatment of painful HIV-associated neuropathy.

This randomized, double-blind, placebo-controlled, parallel-group trial included a 2-week double-blind dose-adjustment (150-600 mg/day BID) phase, a 12-week double-blind maintenance phase, and an optional 3-month open label extension phase. The primary efficacy measure was the mean Numeric Pain Rating Scale (NPRS) score, an 11-point numeric rating scale. Secondary measures included Patient Global Impression of Change (PGIC) and sleep measurements.

Baseline mean NPRS score was 6.93 for patients randomized to pregabalin (n = 151) and 6.72 for those to placebo (n = 151). Pregabalin average daily dosage (SD) was 385.7 (160.3) mg/d. At endpoint, pregabalin and placebo showed substantial reductions in mean NPRS score from baseline: -2.88 vs -2.63, p = 0.3941. Pregabalin had greater improvements in NPRS score relative to placebo at weeks 1 (-1.14 vs -0.69, p = 0.0131) and 2 (-1.92 vs -1.43, p = 0.0393), and at weeks 7 (-3.22 vs -2.53 p = 0.0307) and 8 (-3.33 vs -2.53, p = 0.0156). At all other time points, differences between groups were not significant. Sleep measurements and 7-item PGIC did not differ among treatment groups; however, collapsed PGIC scores showed 82.8% of pregabalin and 66.7% of placebo patients rated themselves in 1 of the 3 "improved" categories (p = 0.0077). Somnolence and dizziness were the most common adverse events with pregabalin.

Pregabalin was well-tolerated, but not superior to placebo in the treatment of painful HIV neuropathy. Factors predicting analgesic response in HIV neuropathy warrant additional research. Classification of Evidence: This Class II trial showed that pregabalin is not more effective than placebo in treatment of painful HIV neuropathy.

My symptoms are dramatically worsening as I'm incapable of walking, sitting, or laying down without severe leg, back, arm and neck pain. CNS complications include: poor temperature regulation, chronic debilitating atypical headaches, hyperacusis and tinnitus. I've been looking at this review, which I may or may not have posted previously and I thought I would share it with you.

The neurologist I'm seeing at the VA hospital in Columbus, Ohio is considering this diagnosis but we won't know until more tests and biopsy. The treatment is ex costly.

Inflammatory Demyelinating Polyneuropathies

Incidence and Occurrence
Patients with HIV infection rarely may develop either acute inflammatory demyelinating polyneuropathy (Guillain-Barré syndrome, GBS), or chronic inflammatory demyelinating polyneuropathy (CIDP).(49) The incidence of these neuropathies is not known; GBS is probably no more common in the setting of HIV-1 than in the general population. However, GBS at seroconversion has been reported, and has been attributed to an autoimmune attack on nerves with resulting inflammation and destruction of myelin.

Patients with inflammatory demyelinating neuropathies present with progressive, usually symmetric weakness in the upper and lower extremities. There is usually generalized areflexia. If the illness is monophasic with maximal neurologic dysfunction reached within the first month, it is, by definition, GBS. Patients with clinical progression of the syndrome after the first 4 to 6 weeks have, by definition, CIDP. Nerve conduction studies may show multifocal conduction slowing and conduction block and help establish the diagnosis of a demyelinating polyneuropathy. Electromyography typically shows signs of denervation in clinically weak muscles. CSF protein is usually elevated and, unlike the demyelinating neuropathies in the general population, a mononuclear pleocytosis of up to 50 cells/µL sometimes occurs.

Although no objective data on efficacy in the HIV-1-infected population are available, most centers treat these patients with either intravenous immune globulin (400 mg/kg/day for 5 days) or plasmapheresis (5 to 6 exchanges over 2 weeks) in a manner similar to that used for non-HIV-infected patients. In patients with CIDP, repeated treatment at monthly intervals may be needed to achieve clinical stabilization.(49)

I have also had neuropathy type issues that atypical of your average neuropathy like semi-numbness in  the left lower arm & right hand as well as the more common burning pain associated with neuropathy and chronic migranes. I find that cymbalta does help some, especially with the burning sensation. My doctor didn't feel it was safe for me to take migrane medication along with all my other 14 daily meds. That EMG test was horrible. I won't be doing another one. Good luck.

I had developed some PN around 1998 but I was a patient at The Care Program at St Mary's, they caught it early, changed my regimen and I went back to "normal".  I moved to a rural area in Northern California and in 2 small town clinics in 11 years, an EKG, an MRI and 3 physical therapy (2) in small towns and ineffective. 

I had to live there and there were no other options without hours of driving.  I moved in 1999.  I was a runner and ran 2 miles every day back then.  The medical provider non-profit neglected to provide a living doctor to treat HIV.  They sent an FNP who saw the HIV patients while an MD in the Ukiah office signed off on the medical records.  I never my my doctor in 4 years of treatment.

My PN came back while I was a patient in their small town clinic.  The medical staff had never seen PN before, they liked to walk up the hall with me to watch my gait.  They made referrals, someone suggested, I purchase my shoes at BIG 5 because they sell seconds at a low price.

They referred me to a Physical Therapist next door who had no training on HIV and PN.  We had a few sessions, he said there was nothing he could do for me and suggested, I join a gym.  Within a couple of years, every step was in screaming agony and I could never run anymore.   

I moved to the nearest Title I EMA and got treatment.  While discussing PN, my new Provider said, it would heal but it will take a long time.  A few years passed, I asked that provider why I haven't healed on/with the PN, he sent me for a bone scan and found, I also have Osteopenia.  I was referred for more Physical Therapy, different Therapist, same organization, different town, same results, join a gym. 

I take Gabapentin 300mg for the PN and the Osteopenia and at night when the Restless Leg Syndrome (got that too) kick up, I try to elevate my legs higher than my heart which helps and I keep getting in and out of bed on my bad nights to stop the cramps in my feet and legs.

In the city, I have signed up for Physical Therapy at UCSF and work with a Therapist who has training on HIV and PN.  She has given me a series of exercises I can do at home without any special equipment and just the other day...  I was shopping at Macy's Mens Store, got to the ground floor and realized, I lost my cane!  I found it on the 5th floor.  Another time, I missed my cane in the morning and found it at a neighborhood convenience market from the day before.  I am improving and it is slow.  8)  Have the best day


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