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Yeah, I won't take Levaquin anymore either. I'm thinking of adding it to my list of "allergies" too even if technically it isn't one.

Are you getting sunburnt? I met a CF friend today at the climic and she told me that she also doesn't tan and only gets sunburns. It has always been like that for me, even when not taking antibiotics that causes photosensitivity. I'm so white! <span style="text-decoration...

More and more studies find that doing preventive IV treatments is actually BAD, especially because it builds up resistance. My clinic used to do preventive IV treatments every 6 months for every CF no matter how good they were doing. They stopped doing that about 10 years ago.

Definitely increase your enzymes. Hardak : I knew a CF kid, she died when she was 15. She was on 10 cotazym every meal if I remember correctly. Her liver was trashed too. So it's possible that you really have to take a lot. I currently take 4 cotazym ECS20 every meal and one of my mutations is...

If you bleed so much, have your lung arteries checked. You might need an embolization to reduce the flow of blood to your lungs. Don't wait too much...

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>scanboyd</strong></em> I have 3 Pulmo-Aide compressors, one in the office and one in the Tv room and one in the box never opened. The ones that I am useing are over 10 yrs. old, waiting for them to die but they keep runing and...

I got the Pari Vios too and I ran into the same issue 11 months after using it. The rep told me not to use the blue nebulizers that come with it for Tobramycin, as it's too sticky and requires too much effort from the compressor to nebulize, causing it to break prematurely and that I should use...

I have been taking salbutamol and flovent. What's the difference? A nurse in another hospital than the one I usually go to asked me whether Advair was what I was taking, I said no, that I was taking salbutamol and flovent and asked what Advair was. She told me it was a long lasting combination...

The last time I took Levaquin, I was also given comcomittent prednisone. The effect was disastrous on my joints, tendons and muscles, although THANKFULLY it didn't cause any long term damage. So I have found a study that supports this. Read it here : <a...

250k a year... ouch. That's 20k a month.I am going to call to Vertex in Laval today. Also, I did some more research on the approval process of new drugs in Canada and I found this : http://www.mswatch.ca/en/ms-today/your-guide-to-ms-treatment-approval.aspx It turns out that "breakthrough" drugs...

That's great. I am not sure... but depending on the price, I think I could afford it with some help. I am brewing a petition text. It won't be only for Kalydeco, since a legislation like the two bills proposed in the United States to fast track the acceptation of breakthrough drugs would...

Wait, I thought it was possible to get meds from the US as long as we had a script for it? Edit : Nevermind... it's not.

What the hell?!? There goes my hope to get it off-label! This is ridiculous! I'm going to write to my deputy about this. We need a bill like US's S.2236 Advancing Breakthrough Therapies for Patients Act of 2012I'm in Quebec. I will be watching this thread closely.

According to THIS http://saltyspark.blogspot.ca/2012/05/where-ive-been.html It might work on 621+1G->T which is a splice site mutation! I have that mutation, I have to build a case.

I don't have a hard time to believe that we do better in cold climates... I know that I have a harder time breathing when it's hot outside... also, heat really increases the chances of hemoptysis, I guess because of vasodilation? Maybe... I live in the great white north and the cold has never...

Canada has a slightly higher median survival age for people with cyctic fibrosis, so I suggest you pick something in Canada. If money is an issue, you should see if you are eligible for Quebec public health care and prescription drug plans...

Wait, are you the one with Df508/621+1G->T who tried Kalydeco?

It usually goes like this : *COUGH COUGH COUGH COUGH COUGH COUGH* *People looking at me wondering if I'm okay* "Are you okay?" *Nodding while coughing my lungs out* "Flu?" "Nope, cystic fibrosis." "Oh." That's all. The thing is, cystic fibrosis is widely known here in Quebec. Many people don't...

It usually goes like this : *COUGH COUGH COUGH COUGH COUGH COUGH* *People looking at me wondering if I'm okay* "Are you okay?" *Nodding while coughing my lungs out* "Flu?" "Nope, cystic fibrosis." "Oh." That's all. The thing is, cystic fibrosis is widely known here in Quebec. Many people don't...

It has always been once a day too, ever since I started taking it when I was 6.