— From Beckymucha on Stocktwits. Friend in Lon
Post# of 148334
(Total Views: 718)
Posted On: 04/06/2021 9:08:03 PM
— From Beckymucha on Stocktwits.
Friend in Long haulers trial update:
Got 4th shots this am.
Every week she has pic taken at trial location and doc says she looks so much better than week before. Says the first week she looked like the “walking dead” in comparison.
Has barely used her wheelchair.
No nerve pain, feet no longer numb, has not needed to take gabapentin for 6 days.
Stabbing lung pain is gone (this was her worst symptom)
Brain fog and pressure in brain is gone.
Has started to work remotely again. Impressive as 4 weeks ago, there was no way this was an option.
Hoping that she can continue LL after trial completion (similar to HIV trial participants who have been on it for years).
She is absolutely convinced she’s getting the real thing as the difference has been night and day. Plus after each dose of leronlimab she has a niacin like flush that goes through her body. (She also gave me permission to post this)
She also says that each week before her next dose she can feel the LL start to wear off, but every week this is lessening. Believes the effects are compounding.
She’s pretty scared about the 4 weeks after the trial ends that she goes without. She has had LH for a year and has many terrible symptoms. Shes so scared to go back to LH misery. Can’t blame her
Friend in Long haulers trial update:
Got 4th shots this am.
Every week she has pic taken at trial location and doc says she looks so much better than week before. Says the first week she looked like the “walking dead” in comparison.
Has barely used her wheelchair.
No nerve pain, feet no longer numb, has not needed to take gabapentin for 6 days.
Stabbing lung pain is gone (this was her worst symptom)
Brain fog and pressure in brain is gone.
Has started to work remotely again. Impressive as 4 weeks ago, there was no way this was an option.
Hoping that she can continue LL after trial completion (similar to HIV trial participants who have been on it for years).
She is absolutely convinced she’s getting the real thing as the difference has been night and day. Plus after each dose of leronlimab she has a niacin like flush that goes through her body. (She also gave me permission to post this)
She also says that each week before her next dose she can feel the LL start to wear off, but every week this is lessening. Believes the effects are compounding.
She’s pretty scared about the 4 weeks after the trial ends that she goes without. She has had LH for a year and has many terrible symptoms. Shes so scared to go back to LH misery. Can’t blame her
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