Is anyone taking Sivextro? Please share any side effects. Thank you.
I was in Linezolid and stopped due to neuropathy in my toes and feet. Hoping it will go away after stopping the drug. Now my ID is working to get approval for Sivextro.
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@janetannfaust May I ask what infection they are planning to treat with Sivextro (Tedizolid)? I thought by now we had heard of every antibiotic ever used for NTM/MAC, but I do know that ID docs sometimes have to reach far for a solution when we cannot take the usual drugs.
sue1219
Yes, my diagnosis is M Abscessus. I started 3 antibiotics on August 21st and a week ago I noticed numb/tingling toes and feet. I was still taking Linezolid and that is a side effect. Went to neurologist on Monday and he confirmed diagnosis. ID assistant to stop Linezolid and he is trying to get other drugs approved to replace it, possibly Sivextro or Clofazimine(this was declined once already). I have other new stuff…..pre diabetes and anemia. More bloodwork today.
My other 2 antibiotics are Arikayce inhaled and Nuzyra (they replaced Amikacin & Imipenem). I messaged my ID about options he offered and declined Imipenem IV again, I felt terrible on that drug). I have an bronchoscopy scheduled for Dec 22nd because I can’t produce a sputum sample. I have BE too. I feel so much better not taking the Linezolid this week, except for my feet and toes.
Please share any thoughts.
Where did you get the NTA? Was it from DBS surgery?
My Mycobacterium Abscessus is in my lungs.
@janetannfaust Hi Janet, how are you doing? Did you ever get on Clofazamine? When I was at NJH last year, they had me sign a study consent form so I could get Clofazamine. I did not dig into the details since I am still on "watchful wait". for M. Abscessus subspecies Abscessus. I hope you are tolerating whatever you are on now. Keep me posted.
Kathy
Hi Kathy, Thank you for your message. My ID is still waiting for Clofazimine to be shipped, I was approved for the clinical trial. Will try to give a quick update….I started a seven week break in April from antibiotics due to elevated liver enzymes. ID is thinking it is from Nuzyra and when Gabapentin got added to my meds in January, so taking the two together maybe caused it. I need Gabapentin for my neuropathy in my feet so I can sleep. I only take one 100mg at night. Don’t like the drowsy feeling in the morning though. So my liver enzymes went back to normal during my break, my ID restarted me on Nuzyra and Arikayce 2 weeks ago and hoped to have Clofazimine by now., but not yet. I am having labs done tomorrow and if liver enzymes are elevated again ID will stop meds again till my August CT scan. That was the plan when we messaged last.
That’s nice you are on “watchful wait” Hope continues for you.
Janet