Anyone taking Linezolid? 3 times per week?

Posted by kathyjjb @kathyjjb, May 31 1:19pm

My NJH ID DR informed I may be able to reduce Linezolid from daily to 3 times per week. I had a blood test taken at 8am,10am, and 2pm, and the analyses of how the drug is metabolized determines dosage. I'm also curious if anyone else has been able to reduce other antibiotics taken orally to a 3 times per week regime.

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payette78 | @payette78 | Jun 1 10:28am

Any vision issues with Linezolid? It is one of my very few drug options after susceptibility testing and i am very nervous about that.

kathyjjb | @kathyjjb | Jun 1 1:16pm

In reply to @payette78 "Any vision issues with Linezolid? It is one of my very few drug options after susceptibility..." + (show)

No vision issues but I was only on 1 month. I recommend you get your vision tested before you start, and then at the prescribed intervals. When on Linezolid, be sure to follow a tyramine free (or low) diet. I highly recommend that your dr. does the blood tests that NJH did on me last week. My local ID Dr had me on 1200 mg Linezolid/day, after a few days at NJH, the dose was reduced to 600 mg/day. I should know what my future dose will be after the blood tests. I'm glad I went to NJH since they paused all my antibiotics and put me back on "watch and wait". My count was only 32 and the local radiologist read my CT incorrectly saying I had a cavity, which wasn't a cavity. I lost my voice with Arikayce and Nuzyra made me really nauseated.

payette78 | @payette78 | Jun 1 2:17pm

Wow yeah the linezolid label says something about safety after 28 days. I've been reading prescribing info and fda black box warnings and a lot of it is scary. So glad you have NJH in your corner. They will get you straightened out i have no doubt. I am in a small and medically underserved province of Canada and have seen signs that my docs don't know what they're doing as they have probably never treated this before. Not sure what to do other than insist they consult an NTM expert in Toronto. Best of luck on your journey. You're in the right hands now.

kathyjjb | @kathyjjb | Jun 1 6:03pm

In reply to @payette78 "Wow yeah the linezolid label says something about safety after 28 days. I've been reading prescribing..." + (show)

Do you have MAC or Abscesses? The only 2 that came up that weren't resistant were: Amakacin and Linezolid. But this was misleading, since they didn't test for everything at a local level. NKH found a few others that I could use. Same thing true to in US, as in Canada. There are few cutting edge experts out there. Depending on future CT scans, I may be going back on Linezolid? But 2700 mg per week (it may be that low depending on blood test results) is a lot less toxic than 8400 mg/week.
Also, the Arikayce was disgusting and they had me try inhaled IV Amakacin which is a lot easier to inhale. I hope you can find someone in Toronto. FYI: I knew NJH was my best bet, so I made arrangements to be seen without a referral. I have a PPO, so I didn't need a referral. My ID doctor was very supportive, and she also sent over a referral. It wouldn't hurt that you do some research as to where to go and pass it on to your doctor. If your dr isn't supportive. I highly recommend you find another doctor. Good luck! Kathy

payette78 | @payette78 | Jun 1 8:35pm

In reply to @kathyjjb "Do you have MAC or Abscesses? The only 2 that came up that weren't resistant were:..." + (show)

I have mycobacterium abscessus subspecies abscessus, so not MAC. Mine is also the hardest to treat and it is macrolide resistant, so no azithromycin or clarithromycin. The Canadian healthcare system works differently from down there. It takes jumping through bureaucratic hoops to get out-of-province care. I am hoping to talk to a fellow patient in Toronto tomorrow to see if she has any advice. The top NTM doc in Canada is in Toronto. She treats about 30 cases a year of my species. In a city of many millions. Best of luck to you too. I hope they find a treatment that is effective and doesn't cause you any more misery.

kathyjjb | @kathyjjb | Jun 2 8:46pm

In reply to @payette78 "I have mycobacterium abscessus subspecies abscessus, so not MAC. Mine is also the hardest to treat..." + (show)

That's exactly what I have, M. Abscessus, subspecies abscessus. Ugh! I'm sorry that you have to deal with that. Can't your drs jump through the hoops for you? Or contact the doctor for a consult? NJH is trying to get the word out about the Linezolid dose.
Do you know what else you will be taking? Do you have any cavities?

payette78 | @payette78 | Jun 2 10:53pm

In reply to @kathyjjb "That's exactly what I have, M. Abscessus, subspecies abscessus. Ugh! I'm sorry that you have to..." + (show)

No cavities. Just nodules and areas of atelectasis. Good to know about the linezolid dose. The docs in Toronto are up on the latest and even writing the book on some of it. My buddy there is a patient of one of them, Dr Marras. He sounds awesome. He is giving an online presentation on June 16th. Can't wait. Been waiting 4 weeks for the ID doc to get back to me with a plan. If it looks too toxic i am going to ask her to consult with the Toronto group. We have to advocate for ourselves, yes? i think even the experts don't have all the answers. Everyone is different.

kathyjjb | @kathyjjb | Jun 3 5:01pm

In reply to @payette78 "No cavities. Just nodules and areas of atelectasis. Good to know about the linezolid dose. The..." + (show)

No cavities do increase cure rate, so that's good. I'm very interested in hearing your treatment plan. I'll look up the presentation on June 16th. I agree, we certainly have to advocate for ourselves. I'm starting Acupuncture for my immune system and fatigue, and cupping to hopefully help with airway clearance. Not sure, I meet with the practitioner next Friday. I can't use the vibrating vest due to vertigo (BPPV), and thinking cupping might help?

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