long term linezolid

[carolinen]

Hi, I'm new to this forum. I don't have cf, I have bronchiectasis, but I have had mycobacterium abscessus for 2 years, and intermittent pseudomonas, so many of the threads here are very relevant and useful to me.
I've had various iv regimes and am currently on imepenem and tigecycline with azithromycin.
I specifically want to ask for experiences people have had using linezolid.
I've had it for short periods ( 4 weeks at 600 mg a day) and sense that it helps ( sensitivity is intermediate) My physician is very cautious about side effects (which I like) and he's reluctant for me to have it longer, he's particularly worried about optic neuritis.I've not had any visual problems, but do get peripheral neuropathy in my feet, which mostly wears off when I stop it, though I have some residual tingling.
Apparently new guidelines for abscessus in cf are due to be released soon and will suggest longer term linezolid at 300 mg.
I'd just be interested to know if people have taken it for long periods,what dosage? what monitoring if any of your vision have you had? have you had side effects?

Just want to add that I'm in awe of all of you. I had good health till I was 50, can't imagine how you have lived with this since childhood and stayed so positive.

 

[Printer]

I would be curious as to why you are so sure that you don't have CF. I was dx at age 47 and a woman, from VA was dx at age 76.

Bill

 

[carolinen]

Hi Bill,
I've had genetic profiling done- no cf mutations. Normal sweat test. I think my doctors have been pretty thorough looking for underlying causes for my NTM- also looked for alpha1 anti trypsin deficincy and did full immune profile especially looking for interferon gamma deficiencies.

 

[Printer]

FYI There are almost 2000 known mutations, any two will cause CF. Early "genetic profiling" are for between 32 and 250 mutations. To rule out CF, even with a normal sweat test, you would need to have a FULL CF SEQUENCING.

If this has been done, great, otherwise it should be food for thought.

Bill

 

[amy123]

[FONT=Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif]Hi Caroline,
i have lots of experience with long term linezolid/zyvox. For me, 600 twice a day was too much for periods over 2 wks. I experienced severe neuropathy and bone marrow suppression requiring a blood transfusion. In fact for several years after that first experience, my doctors and I stayed away from it! As my m. abscessus progressed and options for antibiotics decreased, we started using it again at 600 once a day. I have had no problems at that dose and have been on it for up to 6 mo. and still counting.

I do have CF, diagnosed at 17. M. abs treatment on & off for 10 yrs. I'm 39 y/o mom & "retired" nurse. Hope this helps you make appropriate decisions for your care![/FONT]

 

[MichaelL]

I have CF and m. abscessus. I have been on long-term Lenezolid on two occasions. The first time I was on 600 mg once a day. After about 11 months, I started to have neuropathy in my feet so I stopped treatment. I had my feet tested and they determined the numbness was within normal range. However, the numbness continues six years later.

They put me back on it four years later. Initially, I was taking 600 mg every other day, but they increased me to daily after about a month. I was on it for 15 months that time. I started to have bursts of intense pain in my feet so they stopped it again. The pain stopped but not the numbness.

My doctor said that a new drug is coming out that's related to Lenezolid with less side effects. He wants to put me on the drug when it comes out, although I'm not sure when that might be. I think he said the name of the drug was Tedizolid, or something like that.

i'd not heard about side effects related to vision. They did not do any testing like that for me.

 

[carolinen]

thanks

Hi Caroline,
i have lots of experience with long term linezolid/zyvox. For me, 600 twice a day was too much for periods over 2 wks. I experienced severe neuropathy and bone marrow suppression requiring a blood transfusion. In fact for several years after that first experience, my doctors and I stayed away from it! As my m. abscessus progressed and options for antibiotics decreased, we started using it again at 600 once a day. I have had no problems at that dose and have been on it for up to 6 mo. and still counting.

I do have CF, diagnosed at 17. M. abs treatment on & off for 10 yrs. I'm 39 y/o mom & "retired" nurse. Hope this helps you make appropriate decisions for your care!

Thanks Amy, that's really encouraging.
I think my doctor is thinking of 300 mg once a day (I'm quite small) It's encouraging to hear you have tolerated 600 mg for a long time.

 

[carolinen]

Thanks Michaell
On 600 mg I started to get painful neuropathy after a month, but it settled a great deal after stopping it, leaving just a mild tingling. I had another month of it later that year with similar result. We are thinking of halving the dose next time.I have also heard about tedezolid, which may achieve higher therapeutic levels with less neuropathy( but, as I understand it, still the potential problem of bone marrow suppression). Sounds like this might be something really useful in the future for those of us with not many drug options left.
re the eyes, my understanding is that linezolid can cause inflammation of the optic nerve, just a s it does to the peripheral nerves to the feet. I was told to look out for colours looking less brighter, or printed words less clear- luckily neither happened.
Wish you good luck with your treatment. caroline

QUOTE=MichaelL;1053799]I have CF and m. abscessus. I have been on long-term Lenezolid on two occasions. The first time I was on 600 mg once a day. After about 11 months, I started to have neuropathy in my feet so I stopped treatment. I had my feet tested and they determined the numbness was within normal range. However, the numbness continues six years later.

They put me back on it four years later. Initially, I was taking 600 mg every other day, but they increased me to daily after about a month. I was on it for 15 months that time. I started to have bursts of intense pain in my feet so they stopped it again. The pain stopped but not the numbness.

My doctor said that a new drug is coming out that's related to Lenezolid with less side effects. He wants to put me on the drug when it comes out, although I'm not sure when that might be. I think he said the name of the drug was Tedizolid, or something like that.

i'd not heard about side effects related to vision. They did not do any testing like that for me.[/QUOTE]