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New to TOBI

JRB52

New member
Hi...

I was recently diagnosed with CF and am now working with my doctor to find a treatment plan that will work for me. I've had bronchiectasis for 30 years and it has never been properly treated so my breathing capacity has been extremely compromised and my PF is very low.
I started TOBI 12 days ago along with albuterol and saline inhalations. I seemed to be taking it with no noticeable side effects for the first week, but the past few days I'm having a feeling of greater pressure in my lungs/chest and more trouble with my breathing and assume it must be the TOBI. Is this common when people start the meds? I had tried Pulmozyme for a few days before beginning the TOBI and discontinued use of that for now because it also caused pressure and discomfort in my lungs. I don't want to try too many new meds all at once--if I have a reaction I won't know the cause. I'm also diabetic and I think the new regime is affecting my blood sugar levels. I guess it will take a while to figure it all out.
Would love to hear about anyone else's experiences with starting/taking the medication.

Thanks so much!<img src="i/expressions/heart.gif" border="0">
 

JRB52

New member
Hi...

I was recently diagnosed with CF and am now working with my doctor to find a treatment plan that will work for me. I've had bronchiectasis for 30 years and it has never been properly treated so my breathing capacity has been extremely compromised and my PF is very low.
I started TOBI 12 days ago along with albuterol and saline inhalations. I seemed to be taking it with no noticeable side effects for the first week, but the past few days I'm having a feeling of greater pressure in my lungs/chest and more trouble with my breathing and assume it must be the TOBI. Is this common when people start the meds? I had tried Pulmozyme for a few days before beginning the TOBI and discontinued use of that for now because it also caused pressure and discomfort in my lungs. I don't want to try too many new meds all at once--if I have a reaction I won't know the cause. I'm also diabetic and I think the new regime is affecting my blood sugar levels. I guess it will take a while to figure it all out.
Would love to hear about anyone else's experiences with starting/taking the medication.

Thanks so much!<img src="i/expressions/heart.gif" border="0">
 

JRB52

New member
Hi...
<br />
<br />I was recently diagnosed with CF and am now working with my doctor to find a treatment plan that will work for me. I've had bronchiectasis for 30 years and it has never been properly treated so my breathing capacity has been extremely compromised and my PF is very low.
<br />I started TOBI 12 days ago along with albuterol and saline inhalations. I seemed to be taking it with no noticeable side effects for the first week, but the past few days I'm having a feeling of greater pressure in my lungs/chest and more trouble with my breathing and assume it must be the TOBI. Is this common when people start the meds? I had tried Pulmozyme for a few days before beginning the TOBI and discontinued use of that for now because it also caused pressure and discomfort in my lungs. I don't want to try too many new meds all at once--if I have a reaction I won't know the cause. I'm also diabetic and I think the new regime is affecting my blood sugar levels. I guess it will take a while to figure it all out.
<br />Would love to hear about anyone else's experiences with starting/taking the medication.
<br />
<br />Thanks so much!<img src="i/expressions/heart.gif" border="0">
 

Printer

Active member
Hi:

I was dx at age 47, 23 yrs ago. Both Pulmozyme and TOBI gave me flu like symptoms and I had to discontinue each of them.

I hope that you ate going to a CF Clinic and not a local hospital.

Bill
 

Printer

Active member
Hi:

I was dx at age 47, 23 yrs ago. Both Pulmozyme and TOBI gave me flu like symptoms and I had to discontinue each of them.

I hope that you ate going to a CF Clinic and not a local hospital.

Bill
 

Printer

Active member
Hi:
<br />
<br />I was dx at age 47, 23 yrs ago. Both Pulmozyme and TOBI gave me flu like symptoms and I had to discontinue each of them.
<br />
<br />I hope that you ate going to a CF Clinic and not a local hospital.
<br />
<br />Bill
 
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