Nebulized Colistin & Join Pain?
Hi Everybody,
For those of you who nebulize colistin, have you noticed any joint or tendon pain?
I neb it every other month, and I've begun to notice that 2-3 weeks into the months I'm on it I start getting pain in both my hips and shoulders.
I'm wondering if it's related to the colistin. Any insight anyone?
Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 21, 2015 Category: Respiratory Medicine Authors: Nervous1 Tags: Adults Source Type: forums
zythromax long term?
Hi. No diagnosis yet for my 8 yr old daughter. Just had more blood work done today. Waiting on results of PCD panel. Depending on results, will see CF doc in WI or head to indy or cincy. So, daughter was sick recently. Xray showed probable partial lung collapse and possible pneumonia again. Trying to get sputum sample from her. Pulm wants her on zythromax MWF all winter. I don't know what dose but pharmacy double checking before dispensing b/c high dose. I guess this is used as preventative for inflammation. Anyone heard of this? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - November 21, 2015 Category: Respiratory Medicine Authors: mom2girls Tags: Newly Diagnosed Source Type: forums
I'm 36!
Holy Cow! I'm 36 today, folks! PFTs 96%. STILL GOING! CF WON'T TAKE ME DOWN JUST YET!
<3 (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: welshwitch Tags: Adults Source Type: forums
Wearing masks in public may help wearer from getting flu
For anyone who has heard of the sudden decline of CF patients after getting a mild cold or flu, some to the extent that they are now on ventilator, I believe it is imperative to wear a disposable mask in public places such as the grocery store, mall or hospital during flu season. Who cares if people look at you funny? Better to get curious glances than end up on ventilator. Our lungs are fragile and deserve protection.
Advice from mayo clinic:
Should I wear a flu mask to protect myself from the flu?
Answers from James M. Steckelberg, M.D.
It can't hurt and it might help. Some studies have shown that using a surgical ...
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: ladybird Tags: Adults Source Type: forums
Working on disability - SSDI
Can anyone relate recent experience with working while on SSDI? Have you been audited by SSA as a result? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 20, 2015 Category: Respiratory Medicine Authors: ladybird Tags: Adults Source Type: forums
Fascinating back story on vertexs step into cff
http://www.bizjournals.com/boston/bl...html?ana=yahoo (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 19, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
NSAIDs inhibit ovulation
I think this is worth posting in the Pregnancy forum, as people with CF are often put on a regimen of Ibuprofen. It was not one of the three NSAIDs tested, but it's perhaps relevant nonetheless, especially at the CF dose. And even for CFers not trying to conceive, this may help understand your cycle and it's relationship to your meds (as well as things like weight, stress, and infection).
http://www.medscape.com/viewarticle/846552
"The women were assigned to one of four treatment regimens: diclofenac 100 mg/day, naproxen 500 mg twice daily, etoricoxib 90 mg/day, or placebo.... 'All control patients on placebo ovul...
Source: Cystic Fibrosis Pregnancy Forum - November 17, 2015 Category: Respiratory Medicine Authors: Melissa75 Tags: Pregnancy Source Type: forums
long term linezolid
Hi, I'm new to this forum. I don't have cf, I have bronchiectasis, but I have had mycobacterium abscessus for 2 years, and intermittent pseudomonas, so many of the threads here are very relevant and useful to me.
I've had various iv regimes and am currently on imepenem and tigecycline with azithromycin.
I specifically want to ask for experiences people have had using linezolid.
I've had it for short periods ( 4 weeks at 600 mg a day) and sense that it helps ( sensitivity is intermediate) My physician is very cautious about side effects (which I like) and he's reluctant for me to h...
Source: Cystic Fibrosis Adults Forum - November 17, 2015 Category: Respiratory Medicine Authors: carolinen Tags: Adults Source Type: forums
the recalls we never learn about!
So a couple weeks past when getting a new delivery of drink supplement the coordinator discovered that there was a recall covering the product we had, but thankfully it wasn't the lot we had at home. From our discussion it sounded like medical supplies etc are usually handled from the suppliers and thus not published more broadly, so I went to fda.gov to request email updates of various recalls in the event. A couple days ago the following came through. This looks like it's been an issue for years and who knows what the hospitals/clinics are doing. Augh.
Endoscope Washer/Disinfectors by Custom Ultrasonics: Safety Com...
Source: Cystic Fibrosis Adults Forum - November 16, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Pseudomonas Aeruginosa Erradicated
I was wondering if anyone on this board has ever known or heard of anyone diagnosed with CF getting Pseudomonas Aeruginosa and then completely eradicating it through antibiotic treatment (verified by a specimen via bronchoscopy)? Thank you. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 16, 2015 Category: Respiratory Medicine Authors: zumiestar Tags: Adults Source Type: forums
Please help!!!
i HAVE A 14 YEAR OLD SON THAT HAS HAD HEALTH PROBLEMS HIS WHOLE LIFE. HE HAD RSV WHEN HE WAS A FEW WEEKS OLD, FAILURE TO THRIVE AT A COUPLE MONTHS OLD AND PNEUMONIA EVERY WINTER FROM AGE ONE UNTIL ABOUT 11. WHEN HE WAS 4 WE NOTICED HE WOULD WHEEZE AND STRUGGLE TO BREATH WHILE WATCHING TV WHICH WE THOUGHT WAS WEIRD BUT WOULD ALWAYS SELFCORRECT IN A FEW SHORT MINS. AFTER A FEW MONTHS WE NOTICED THAT HE WOULD STRUGGLE TO BREATH AND THEN WOULD END UP IN THE BATHROOM WITH DIARRHEA.....EVERY SINGLE EPISODE!!!! IT STARTED OUT HAPPENING ONCE A MONTH AND PROGRESSED INTO 2 OR 3 TIMES A WEEK. WE TOOK HIM TO MULTIPLE DRS AND HOSPI...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 14, 2015 Category: Respiratory Medicine Authors: kadesmom Tags: Newly Diagnosed Source Type: forums
Cystic fibrosis smartvest airway clearence vest machine
Selling 2 BRANDNEW ( Barley Used) SMARTVEST Machines
Asking 7,500 a piece!
OBO
Comes with
- Vest machine
- vest ( teal, or purple)
- Carrying case
- hose
- user manual
One vest has only 65 hours on it
unsure of the second
*** EMAIL FOR MORE DETAILS ***
I do have paypal, and am able to ship anywhere, may asking for shipping depending where you live.
Email- Aprillynn2195@gmail.com
US ONLY CAN TEXT 717- 404-7054
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Source: Cystic Fibrosis Adults Forum - November 13, 2015 Category: Respiratory Medicine Authors: Aprillynn921 Tags: Adults Source Type: forums
Surviving on Disabilty
I've always been one of the "lucky ones" with mild CF. Of course things have declined over the years, but last year I was still doing well for a 36 year old with CF. In 2014 my FEV1 was hanging out in the low 70s. Then I caught a bad bug September 2014, and within 3 days I went from being healthy, to laid out in the hospital for 3 weeks, on oxygen for the first time ever, with an FEV1 of 51%. I've been struggling ever since. I had another drop and round of IV antibiotics in May, and my FEV1 now ranges from mid 50s to mid 60s. I tried to return to work afterwards, but between the exhaustion and shortness of breath...
Source: Cystic Fibrosis Adults Forum - November 12, 2015 Category: Respiratory Medicine Authors: Starfall99 Tags: Adults Source Type: forums
Smartvest SQL by Electromed inc. for sale (machine and cord only)
Hi, I have Smartvest SQL for sale. Works great, it has 84 hours of use. By Electromed inc. Please email me with offer.
Thanks Email:
Urkidn@sbcglobal.net
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Source: Cystic Fibrosis Airway Clearance Techniques Forum - November 11, 2015 Category: Respiratory Medicine Authors: Bill Eismin Tags: Airway Clearance Techniques Source Type: forums
Interesting new clinical trial for 661/Kalydeco
Was checking to see if next generation details were at clinicaltrials.gov and didn't find but discovered this study, which I hadn't been aware of:
https://clinicaltrials.gov/ct2/show/...lmonary&rank=1
It is a small study for 661/Kalydeco, not the Phase 3 for homozygotes going on now, but a Phase 2 looking at "extrapulmonary systems." Primary end point is mucociliary clearance, and secondary endpoints include (beyond FEV), change in gastrointestinal pH, change in sweat chloride, change in nasal potential difference.
This is interesting to me because the FDA at the Orcambi discussed (if I recall correctly) t...
Source: Cystic Fibrosis Adults Forum - November 9, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
