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So as far as the port goes, if you have only had it for a month, it should start to feel much better soon. I had mine placed July 10th and I don't even feel it there anymore (except when they change the needle once a week). But it was sore for a while, I started to feel the same way, like is...

Working out started being a problem for me as well. I started coughing up blood depending on the the activity. My doctor decided that nothing with impact, so running, jumping, bouncing...really anything where you land. Also I shouldn't lift more than a quarter of my weight. All of those...

I had joint pain throughout my teenage years, when I was 20 I moved to CA and my doctor here prescribed colchicine (now colcrys) and it all stopped. My pain was in my hips and shoulders, so it was very debilitating. I would go to the ER in tear and leave pumped full of morphine because they had...

I was diagnosed not with MAC but a different NTM, m.absessus. My treatment began about 2 months ago. It's IV cefoxitin 2g every 4 hrs, oral biaxin 500mg 2x/day, and inhaled amikacin 2mL once a day. And yes for 6 to 12 months. But Infectious Disease just told me it could be as long as 18...

I had the same thing for years as a teenager, but when I came to UCSF my doctor prescribed colchicine (now colcrys) for me and now I only sometimes get joint pain (it's was my shoulders and hips, so really when it used to happen I couldn't move at all, I would end up in the ER pumped full of...

So does the person with CF have this joint pain? I had the same thing in my shoulders and hips.

PACmommy, Have her try drinking miralax once a day - not in water (they say tasteless, but I don't think they have actually tasted it), but juice, tea, or crystal light. I have had a lot of digestive problems with my CF and this seems to help keep me regular without obstructions that cause...

Okay, so I'm about to type a lot...sorry. So you do have a port? How often were they changing the needle and what gauge were they using? I'm using inhaled amikacin instead of IV because the side effects for IV can be renal damage and I have diabetes and have already had a kidney stone. Also...

I have not been to any other CF clinic in California other than UCSF. For 19 years I went to UMASS in Worcester, MA, but 10 years ago I moved to California and had a choice between Stanford and UCSF. I have not dealt with pediatrics there, only adult and they are great. They seem to know the...

Hi As of right now I am 2 months into my m.absessus treatment. The regimine they have me on was a collaboration between my CF team and Infectious Disease. I have a port and I take cefoxitin 2g every 4hrs, oral clarithromycin (biaxin) 500mg 2x/day, and 2mL of inhaled amikacin 1x/day. But that is...