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sorry guys got that wrong, but wanted to ask if anyone has heard of the following med`s
Lyrica for fibromyalgia, also known as pregablin, a anti seizure reported to help with nerve end pain in fibro.
Also Benlysta or Gilenya which the royal society for lupus New Zealand recommend for lupus flares?
interested in hearing your reply
cheers
Hello JON,
I've not taken Lyrica but at the moment Faye (moderator) and also Tiffany are taking it, so if faye does'nt reply on here you could always ask her about it.
Regarding Benlysta or Gilenya heard members are on the drugs so i really hope someone answers you in due course.
Terri :)
Hi Jon, I briefly tried Lyrica for neuropathy (nerve pain in my feet). It worked within days. Unfortunately, it also made me really sleepy, but I plan to try it again at a lower dose when I can handle the sleepiness.
Hi JON,
I hope the info as helped off RB...are these the meds they're offering you to take?
Terri:)
Hey Jon
Havent taken either one but has a long talk with my immunologist about the Benylsta and he said he wasnt impressed with the test findings. He was telling me that there is a drug underway in Europe called something 22 that actually targets and turns off the immune system at a cellular level. Its still in development but hey that sounds intriguing. Hoping you are well
Julie
Hi Jon, I've been on Lyrica for about 2 months. I began with 50 mg at bedtime. Honestly, it worked right away as far as the nerve pain associated with fibromyalgia. And I slept better at night. Then after a month my dose was increased to an additional 75 mg to be taken at bedtime and the 50 switched to noon. Because of nausea in the afternoon and brain fog I stopped taking the 50mg at noon but i have continued the 75 at bedtime. I hope to try increasing it again with the suggestion of taking it in smaller amounts.
I know several who have taken for at least 2 years and have so appreciated the relief. My daughter's father in law (a doctor) says it is tolerated well. I am extremely sensitive to meds so I may be overly cautious. But I do not want to give up yet and am willing to try again. Really this is the only real help I've received from the constant pain.
The fact that it is used for seizures makes me wonder the longterm affect if I quit taking it? I do not have a follow up until 2 months so I'm left wondering.
Faye
You guys are awesome thanks for all the help, off to see my specialist in a month and will talk to him about these and will let you know how i get on, god bless to you all
from Jon and Jude