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View Full Version : Anyone on or have tried LYRICA? CNS Lupus/siezures



angela
02-17-2007, 12:13 AM
hi there! been around, but am a newbie poster. my neuro wants me to get off of neurontin for lyrica. i think mainly for neuropothy (??) and siezures. i had a siezure, fell down stairs and am suffereing short term memory loss, going thru speech and physicall therapy. feeling like i have to start all over again, because the fall started a very bad flare, and now it's CNS. am starting rituxan/cytoxan rounds monday.

was diagnosed 10/2004 and am currently on 15mg of prednisone (down from 90mg/day); plaquinil; neurontin; mobic; kadian; msir; norco prn; oxycodone prn. thanks for your hep, and may post my crazy story in the newbie area, but just wanted info on the lyrica since doc wants me on it like yesterday...???

thanks again :)

Saysusie
02-17-2007, 11:41 AM
Hi Angela;
Lyrica was approved by the FDA in 2005 to be used for the two most common neuropathic pain conditions (the management of neuropathic pain associated with diabetic peripheral neuropathy [DPN] and postherpetic neuralgia [PHN]). It is said to provide rapid and sustained pain relief and is the first FDA-approved treatment for both of these neuropathic pain states, which are distinctly different from arthritis or musculoskeletal pain.
Neuropathic pain, one of the most debilitating forms of pain, is caused by nerve damage that can result from underlying conditions, such as diabetes, auto-immune disorders or shingles. The pain of DPN is often described as burning, tingling, sharp, stabbing, or pins and needles in the feet, legs, hands or arms. PHN is a complication of shingles, a painful outbreak of rash or blisters on the skin caused by a reactivation of the same virus that causes chicken pox. Each year, about 150,000 Americans develop PHN, which is often characterized as constant stabbing, burning, or electric shock-like sensation.
Lyrica provided rapid and clinically meaningful pain reduction in a significant portion of patients, with pain relief beginning as early as the first week of treatment in some patients. Pain relief was sustained in studies of up to 12-weeks duration. It has also been shown to significantly reduced the pain of fibromyalgia syndrome, has improved sleep and fatigue and improved other patient-reported conditions including bodily pain and fatigue in other auto-immune disorders. Patients taking Lyrica also reported reduced fatigue on a scale of severity, distress, degree of interference in activities of daily living, and timing.
IMPORTANT: If you are taking Lyrica for your seizures, it is important that you do not stop taking Lyrica even if you feel better. It is important to continue taking the medication to prevent seizures from recurring.
Do not stop taking Lyrica without talking to your doctor. Stopping suddenly may result in insomnia, nausea, headache, or diarrhea.
Lyrica may cause problems with your vision including blurry vision. Contact your doctor if you experience any changes in vision.
Talk to your doctor immediately if you experience unexplained muscle pain, tenderness, or weakness, excessive tiredness or fever.
Use caution when driving, operating machinery, or performing other hazardous activities. Lyrica may cause dizziness, sleepiness or blurred vision. If you experience any of these symptoms avoid these activities.

I hope that this information has been helpful to you. Let me know if you need anything further!!
Peace and Blessings
Saysusie

MARYCAIN
02-17-2007, 11:42 AM
Angela, I don't know anyone who is taking it right now, but everything I've read about it seems very promising. I'm on neurontin right now - for neuropathy and also for seizures - it seems to stop working after a while - maybe that's why your doctor wants you to switch? Hopefully someone on the board will be taking it and can answer your questions.

angela
02-18-2007, 08:09 PM
thanks marycain! yes, i think that why my neuro doc want me to switch. been looking at al the side effects and my hubby is greatly concerned. the neurontin has stopped working, and my seizures aren't getting worse, but not better. my rheumy doc want me to start cytoxin/ritucan again. just a bit frustrated is all. just as we thought we'd caught the "moving target" that is lupus, it jumps up and starts running again!

anyway, thanks again! be well!

MARYCAIN
02-18-2007, 08:42 PM
Angela, if you try the Lyrica, I hope you will let us know how it works for you - I'm going to have to change from the neurontin soon - just hate the thought of adjusting to another new med.

When you mention cytoxan / rituxan, are you getting both meds at the same time, or do they give them some time apart? Just wondering about the protocol - I've been off cytoxan for a while - going to have to start back on it next month, but it's combined with IV pulsed steroids.

GlassHalfFull
02-19-2007, 12:55 PM
My Dr just put me on it -- I haven't started the samples yet -- but I'll let you know what I think of it....

angela
02-24-2007, 04:16 PM
Hi marycain! sorry for just now getting back to you. had cytoxan/riuxan monday and tuesday. it lays me out for a few days. anyway, they give it to you over 4 days, 2 weeks apart. example, rituxan is first on monday, wih cyoxan second on tuesday. then i go back 2 weeks later. al while getting iv pulse steroids. there's other pre and after meds too. for me, they take my bood work first, then mix the chemo based on labwork.
are you doing just cytoxan,or both? let me know how you do, ok?

hey thanks half full, keep me posted.

be well :)

MARYCAIN
02-24-2007, 04:28 PM
I'd been on cytoxan combined with the pulsed steroids - I had to stop the cytoxan for a while because my white count got below 2000, but I still get the pulsed steroids - I'll start back on the cuytoxan this month if my white count is high enough when they check it next time. I was wondering about the rituxan because my rheumie has mentioned it, but I always got the impression he meant instead of cytoxan, not with it. My insurance won't cover the Rituxan because it isn't FDA approved for lupus, which seems kind of silly since most of the meds given for lupus aren't FDA approved for it.

angela
02-25-2007, 11:40 PM
rituxan's given w/ or w/o cytoxan. i tried it a few times just by itself, and it helped, just not enough. how often do you go for cytoxan? do you just do pulsed steroids, or do you take the dreaded prednisone too? check w/ yr insurance co about coverage because sometimes it just takes a letter from the doc (mine is like that) saying that you need to try this now.

be well!