Oh Bramitob: We are so disappointed....

To give a bit of background, I started on Bramitob a week after I'd come back from holiday in Ibiza. I don't know about you, but holidays in hot countries always seem to have a good effect on my chest, and I usually feel clearer and dryer while I'm there; whether that's down to the dry air or the sea air I'm not sure; although the last time I blew a massive 3.3 it was straight after a week by the coast in Wales in the middle of the summer. Maybe the NHS should pay to send pwcf off for a week in spain every winter, it'd be cheaper than IVs and perhaps just as effective? Just don't tell the Tories, or the Daily Mail ;-) I also finished off an old course of Cipro I had after the holiday to make doubly sure my lungs were squeaky clean for the test.

Anyway, I went to the hospital to do the first neb of the trial with the physio (they do this just to confirm there is no sudden drop in FEV1 an hour after the first dose of Tobi) After a few blows, all was well, in fact halfway through I figured out my blow technique has been all wrong (I was blowing too hard) and thanks to that (relaxing and blowing slower) I was able to comfortably blow 2.9; great! so all in all there was no ill effects after the first dose.

For the first week all was well, apart from a slight sore throat and the Bramitobi tasting of cheese. I even went on a solo mountain bike ride (both my mates cried off with excuses) in the rain with no obvious problems. However; by the second week, I was starting to get both a tightness and a wheezy rattle. And also, there was something I couldn't quite put my finger on; even though my sputum was thin and white, it was as if the sheer volume of sputum I was producing was starting to increase, to the point where it was causing me breathing problems. My long-suffering misses even complained that I was breathing noisily or "weirdly" in the night (and I hadn't been drinking either ;-)) So after consulting with the phsiotherapist (and the ever knowledgeable Telamere, who was also doing a similar trial) I decided to stop it.

Gutted, it's meant to be a lot more effective than Promixin and can even reduce the amount of IVs you need. Ah well...

Son of Tobi: Bramitob

Earlier this year I trialed Toni through the INeb with less than spectacular results (my chest got wheezy, gunky and crappy and I ended up on IVs) Was that down to the Tobi or was that down to a virus, the cold, icy winter and weight loss? I've done Colymycin nebs for many years now with no problems and I've done Dnase since the mid noughties.

Whatever anway, the CF Manchester team did suggest we retrial the Tobi with a different, isotonic brand to see if it that would have a better effect. I'm just starting a months trial of this. so far so good but it tastes like parmeggiano cheeses (or smelly socks); I'm not sure which. Or is it goat's milk? 3 days in and OK so far. I've decided it doesn't taste like Parmeggian cheese, it's more like milk that has been left out of the fridge too long...the physio said they'd made an attempt to improve on the taste of Tobi as well. I'm trialing the Bramitob in a Pari compressor nebuliser and it takes about 5 minutes. The only downside is I need to deliver it near a window to avoid exposing the family to concentrated Tobi mist, and it's freezing! ;-) In trials Tobi is rated to be much more effective than Colymycin in blitzing pseudomonas which is one of the reasons I'm quite keen to get back on with this.

To Be Continued...

Tobi, Tobi, Tobi, Tobi!

Went to the clinic the other day for my nebulised Tobi trial with the physiotherapist. The trial is to take nebulised tobramycin for a month and see how things go, and hopefully see some LF improvement over the next month as my blows have been a bit rubbish recently. We did the test and she also rejigged my iNeb with her laptop from tidal flow to TIM (Target inhalation mode) this is better because it quarters the time needed to do the inhalation, and it turns out I will need this extra time with all the extra stuff I'll be inhaling next month. She asked me about my iNeb compliance before she brought up a flow chart telling her exactly how compliant I had been with my nebs over the last 12 months! It turns out my compliance was only 70%, I was well embarrassed, I felt like a naughty schoolboy!

I had heard that Tobi was inhaled once a day, but for the monthly trial I will be nebbing twice daily with an old compressor neb (like I used back in the 80s! Doh!) You take it twice a day and also you need to nebulise Ventolin before it to stop the possible bronchiectasis. that'll be fine in the evening when the kids are in bed, but I will struggle to fit that into my morning schedule, which consists of getting showered, doing a bit of physio (in the shower), getting breakfast, getting Oscar and Abby dressed and fed, and dropping either Oscar or Abby off at nursery / school before work. I think I'm going to have to use the iNeb for Dnase in the car on the way to work, which I don't really like doing as it's not safe and I could get pulled over. The physio also said I should neb Tobi in a ventilated room away from the kids. Hum. Looks like I'm getting up even earlier in the morning...

Anyway enough moaning! I actually felt quite loose in the chest after the trial tobi neb so hopefully I will see some real benefit when the month is over.