who's over 50?

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bluevelvet73

New member
Thank you for all the responses. vivsmom, I take most of what you do and often more. The Tobi was not right for me. Very harsh and made me sicker. I am hoping to try nebulized Cayston as the IV form is what really knocks out an infection when I've been in the hospital. So far the people at 'Cayston' have denied my application for assistance. I do use nebulized Pulmozyme. Genentech, access for care has helped me with this.
There were some very helpful websites suggested that offer assistance that I plan on contacting. I do agree that having further testing and possibly finding any other CF mutation will be helpful for treatment.
One of the most difficult things right now is being on prednisone. I have a love/hate relationship with this drug. I've been up and down consistantly for 3 yrs and currently down to 11mg. Not quite able to taper off. Very frustrating. The steroids have caused Diabetes and other random symptoms and problems. CROSSING MY FINGERS THOUGH!!
I appreciate this Forum. Thank-you!
 
B

bluevelvet73

New member
Thank you for all the responses. vivsmom, I take most of what you do and often more. The Tobi was not right for me. Very harsh and made me sicker. I am hoping to try nebulized Cayston as the IV form is what really knocks out an infection when I've been in the hospital. So far the people at 'Cayston' have denied my application for assistance. I do use nebulized Pulmozyme. Genentech, access for care has helped me with this.
There were some very helpful websites suggested that offer assistance that I plan on contacting. I do agree that having further testing and possibly finding any other CF mutation will be helpful for treatment.
One of the most difficult things right now is being on prednisone. I have a love/hate relationship with this drug. I've been up and down consistantly for 3 yrs and currently down to 11mg. Not quite able to taper off. Very frustrating. The steroids have caused Diabetes and other random symptoms and problems. CROSSING MY FINGERS THOUGH!!
I appreciate this Forum. Thank-you!
 
L

litsa

New member
Thank you for your time, and Printer for your reply. I apologize for interfering in the subject and I am pretty sure that language is my barrier in understanding. I live in Greece, by the way, and unfortunatelly things here arent so good with CF. Imagine that there are only 3 clinics for Cf in the whole country, not mention only 3 hospitals testing DNA for cf. I have been diagnosed as a carrier. My son is a patient. Which all this to me has been explained, by doctors, as follows: a carrier does not get sick, doesnt need meds, enzymes, physio or anything like that. On the other hand, a patient of cf needs, in most cases, to take enzymes, do physio, meds and in severe cases be hospitalised. So, my question was and still is, whether a patient, with two mutations can be diagnosed so late in life, without previously exhibiting health issues that accompany CF. Sorry for asking again, but probably I am not getting it, or I've been misinformed by the doctors.. Thank you again.
 
L

litsa

New member
Thank you for your time, and Printer for your reply. I apologize for interfering in the subject and I am pretty sure that language is my barrier in understanding. I live in Greece, by the way, and unfortunatelly things here arent so good with CF. Imagine that there are only 3 clinics for Cf in the whole country, not mention only 3 hospitals testing DNA for cf. I have been diagnosed as a carrier. My son is a patient. Which all this to me has been explained, by doctors, as follows: a carrier does not get sick, doesnt need meds, enzymes, physio or anything like that. On the other hand, a patient of cf needs, in most cases, to take enzymes, do physio, meds and in severe cases be hospitalised. So, my question was and still is, whether a patient, with two mutations can be diagnosed so late in life, without previously exhibiting health issues that accompany CF. Sorry for asking again, but probably I am not getting it, or I've been misinformed by the doctors.. Thank you again.
 
P

Printer

Active member
Basically your Doctors are correct regarding CARRIERS but as I said before CARRIER status can change if a new screening shows 2 mutations.

Again, the answer is YES. Some mutations are "late onset" so health issues may not show up umtil later in life. There is a thread here that you should read.

CFERS OVER 40. Go to FORUMS then go to ADULT then scroll down (a few pages) until you find CF ers OVER 40.

Bill
 
P

Printer

Active member
Basically your Doctors are correct regarding CARRIERS but as I said before CARRIER status can change if a new screening shows 2 mutations.

Again, the answer is YES. Some mutations are "late onset" so health issues may not show up umtil later in life. There is a thread here that you should read.

CFERS OVER 40. Go to FORUMS then go to ADULT then scroll down (a few pages) until you find CF ers OVER 40.

Bill
 
L

litsa

New member
Bill thank you again for your reply.
Came across some articles last night talking about late onset and how its possible. Its just that I am still new on CF and my main knowledge was that you cant be patient and find out so late in life. Now I am more informed on the disease and thank you again for your time and patience!
Hope you all do well, and hope doctors and researchers will come up with some kind of med or cure for it.
 
L

litsa

New member
Bill thank you again for your reply.
Came across some articles last night talking about late onset and how its possible. Its just that I am still new on CF and my main knowledge was that you cant be patient and find out so late in life. Now I am more informed on the disease and thank you again for your time and patience!
Hope you all do well, and hope doctors and researchers will come up with some kind of med or cure for it.
 
P

Printer

Active member
litsa:

Thank you for your kind words. We are all here to help one another. Send a Personal Message to me any time you like. Don't apologize for your English, it is better than my Greek will ever be.

Bill
 
P

Printer

Active member
litsa:

Thank you for your kind words. We are all here to help one another. Send a Personal Message to me any time you like. Don't apologize for your English, it is better than my Greek will ever be.

Bill
 
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