Newly diagnosed 20 yr old

J

JustaCFmom

New member
Hi
My newly diagnosed 20 yr. old started taking antibiotics/anti inflammatory meds and inhalation of hypertonic saline. He says it is making him weak and he wants to stop. The doctor says he isn't taking anything that should make him tired.
His is VERY active and his FEV1 was 126. The clinic said his results were the highest they have seen. (He only got the diagnosis because of a sick sibling.
Any advice?
Thanks!
 
J

JustaCFmom

New member
Hi
My newly diagnosed 20 yr. old started taking antibiotics/anti inflammatory meds and inhalation of hypertonic saline. He says it is making him weak and he wants to stop. The doctor says he isn't taking anything that should make him tired.
His is VERY active and his FEV1 was 126. The clinic said his results were the highest they have seen. (He only got the diagnosis because of a sick sibling.
Any advice?
Thanks!
 
M

Mistyjo

New member
Why are they doing treatments if he is 20 and has no respiratory symptoms? My daughter doesn't get treated for respiratory at all. She does PFTs and throat swabs every 3 months but no chest pt or antibiotics.
 
M

Mistyjo

New member
Why are they doing treatments if he is 20 and has no respiratory symptoms? My daughter doesn't get treated for respiratory at all. She does PFTs and throat swabs every 3 months but no chest pt or antibiotics.
 
B

Beccamom

New member
My daughter remains in CF diagnostic limbo, but is treated for CF in part because the asthma medicines made her worst. As far as the medicine making him weak it is possible. If the anti-inflamatory meds are steriods they can lower you cortisol and that significantly decreased my daughter's energy. My understanding was that oral steriods are more likely to do this, but inhailed can also have that affect. My daughter had to do a morning cortisol blood test to confirm this.
 
B

Beccamom

New member
My daughter remains in CF diagnostic limbo, but is treated for CF in part because the asthma medicines made her worst. As far as the medicine making him weak it is possible. If the anti-inflamatory meds are steriods they can lower you cortisol and that significantly decreased my daughter's energy. My understanding was that oral steriods are more likely to do this, but inhailed can also have that affect. My daughter had to do a morning cortisol blood test to confirm this.
 
J

JustaCFmom

New member
Thanks for your input!

He actually had a "mysterious" cough for quite a while a few years back and did go to a pulmonologist then. The doctor didn't hear anything and we never followed up because the cough cleared up when he started running.

I forgot to ask if his culture had any bugs. His CT did show mild bronchiectasis.

He has stopped all the medicines and says hi is feeling better. Hmmmm. I am not sure what to do, especially since his case IS so mild.

Thanks for the support :)


The "anti inflammatory" medicine is azithromycin, NOT steroids.
 
J

JustaCFmom

New member
Thanks for your input!

He actually had a "mysterious" cough for quite a while a few years back and did go to a pulmonologist then. The doctor didn't hear anything and we never followed up because the cough cleared up when he started running.

I forgot to ask if his culture had any bugs. His CT did show mild bronchiectasis.

He has stopped all the medicines and says hi is feeling better. Hmmmm. I am not sure what to do, especially since his case IS so mild.

Thanks for the support :)


The "anti inflammatory" medicine is azithromycin, NOT steroids.
 
J

Julie7

New member
Azithromycin is an antibiotic, not an anti inflammatory medication. The brand name is Zithromax or Z pack (5 day treatment). It is a macrolide antibiotic used to treat infections such as (but not limited to) bronchitis or pneumonia. Hope that is helpful.
 
J

Julie7

New member
Azithromycin is an antibiotic, not an anti inflammatory medication. The brand name is Zithromax or Z pack (5 day treatment). It is a macrolide antibiotic used to treat infections such as (but not limited to) bronchitis or pneumonia. Hope that is helpful.
 
R

Ratatosk

Administrator
Staff member
IMO, it's important to be proactive with lung care -- so cpt/vest treatments a minimum of twice a day. We've been doing CPT/vest treatments 3 times a day on ds since he was a baby -- more if he's sick.

Zithromax is used differently in CF patients -- not as an abx but as an anti-inflammatory. Check the CFF.org website for information on this.
 
R

Ratatosk

Administrator
Staff member
IMO, it's important to be proactive with lung care -- so cpt/vest treatments a minimum of twice a day. We've been doing CPT/vest treatments 3 times a day on ds since he was a baby -- more if he's sick.

Zithromax is used differently in CF patients -- not as an abx but as an anti-inflammatory. Check the CFF.org website for information on this.
 
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