Clinic Update # Gajillion

I had clinic again today. No surprises meant I left a happy girl. My PFT's were stable and now that I'm on Doxy I feel pretty good. Just a little fatigued here and there, along with intermittent belly pain, but that's to be expected when on 4 antibiotics. The only thing left is waiting the few days for the culture results to come back...

One thing that I have been experiencing lately is peripheral neuropathy. This can be a side effect of long term Zyvox use. Basically, neuropathy is nerve damage that can be permanent, that is sometimes caused by medication toxicity. This is manifesting itself in me by causing intense tingling in my hands. It feels like they're asleep, but no amount of moving them around takes the sensation away. Each episode that I've had has lasted from a couple minutes to an hour, and it most often occurs in me at night. Honestly, at this point it's just annoying. Not painful at all. However, neuropathy can get very severe. It can cause debilitating pain or lead to the loss of all feeling in the hands or feet. I was supposed to have 7 months left on the Zyvox. It is a very important component in abscessus treatment. However, Dr. Dazzle wants me to discontinue the drug immediately. He thinks the danger of having to deal with permanent nerve damage outweighs the benefits that I am getting from the drug right now. Some studies in South Korea show that abscessus can be treated sucessfully with Doxycycine, Amikacin and Azithromycin, so this will be my new plan. I tolerate the Doxy well, even though it makes it torturous to be in the sun. Guess I'll have to try to be a hermit again this summer :-/

I also signed my consents for a new study I will be starting on Monday. What's adding one more drug to the mix after all? I will be doing a double-blind Spireva study. I did a Spireva study a little over a year ago, but it was just testing the reactions of CF patients to the medication. This time they are looking for evidence that the drug can improve lung function. I have 2/3 chance of getting the drug versus the placebo. This is probably the 40th study I have participated in since childhood...no joke... I am the study queen!

So all in all it was a great appointment! Now, I'm just keeping my tingly fingers crossed that my cultures show that I have no new lung inhabitants...