Experiences with

Tobi

From Tobi

Exactly the same thing happened when her IV tobi was stopped in July: within 48 hours her sputum was worsening.

I know the half-life of tobi is 3 hours with normal kidney function, but that on it’s own doesn’t help me with the serum decline, and I’m guessing that there must be an established average elimination rate to have decided when peak/trough sampling should be carried out.

a chest x-ray revealing changes in lower left (where we know she has permanent damage anyway) and mid right, in keeping with the ridiculous amounts of sputum she was clearing for weeks; it’s a proper put your hand on her chest and you can feel it vibrating jobby, but after 15 days of her normal IV tobi

Small person (now aged 11) has had over 40 courses of IVs using tobi since birth.

Will be starting Tobi...inhalation tomorrow. When I look at the side effects, it scares you to death. On the other hand, I'm sick of coughing, and having dark green Phelgm, excessive sputum etc.....anyone out there experienced this ✌️

...............Tobramycin UCTD.............Undifferentiated Connective Tissue Disease The list will updated on a regular basis.

My son is 8 and cultures PAin the off-tobi months for the last 14 months. Hospitalized for Iv medication -though no clinical symptoms were present- but it seems he is colonized now. As i said he does not have clinical symptoms. We are serious about chest pt and all other medications.

I am very nervous about starting this treatment without a definite diagnosis of pseudomonas bug as having read up on the side effects etc of the Tobi inhaler I am scared unless it is definitely necessary .

I am getting repeated infections & my Dr suspects it may be there and suggests treatment with Tobi inhaled medicine . I am scared and reluctant to try it without a definite diagnosis but not sure what the alternative would be either. I have had I.

...............Tobramycin The list will updated on a regular basis.  

My consultant said 'if they licensed it for you nobody would pay for it'. This is discrimination as those with cystic fibrosis bronchiectasis get it in shed loads. In the US it is having a dramatic improvement for those with non cystic fibrosis bronchiectasis. I have struggled with bronchiectasis for