|
|
Post by supergrandma on May 29, 2011 11:00:46 GMT -5
Just wanted to update everyone with me and Daxas. I seen my specialist on Wed. and I will be staying on the Daxas. I am sorry in one thread I thought my Fev # was 21 but in Nov. of last year it was 23 and it is still at 23 which I think is great considering the test in Nov. I was on Pred. at the time. I have lost two pounds since last Nov. but I have noticed my appetite seems to be increasing each day so hopefully I will gain some back because at 80 pounds I am a walking skeleton.
I asked him about any new drugs coming down the pipe and he said not for about 18 months.
My biggest concern is the weight loss but I have been losing weight even before I was put on the Daxas and I will be watching it very closely otherwise I have no side effects now and I do feel overall much healthier.
|
|
|
|
Post by maryaz on May 29, 2011 23:03:14 GMT -5
supergrandma; That is good to read that you have no side effects. I hope it keeps working for you. Seems most that I have read are having side effects even if able to stay on it.
|
|
|
|
Post by susanny on May 30, 2011 7:37:27 GMT -5
I am glad to hear that you are able to stay on the Daxas and that you are receiving benefits from it. A lot of people would think that that 2 lb weight loss wasn't bad at all, but I, and a couple others of us, do understand that it can be a real issue, even that tiny bit. I wish I knew how to help you gain it back, struggling myself and have no idea what to do. But at least you are maintaining and not losing any more.
Perhaps you can tell us how you are feeling...what makes you believe in the Daxas? I know you said your FEV1 has remained the same, which is good of course, but what else do you notice is different from before? Can you breathe easier, are you less SOB? Have you had any exacerbations at all since you started it (did you make it through the winter without any sickness?) I know I'm not the only curious one here and your answers are important for anyone trying to make a decision as to whether the possibility of improvement out ways what so many have experienced in the side effects.
Thanks for sharing your story with us! Hope the good results continue and keep getting better all the time.
Sue
|
|
|
|
Post by Blossom/Jackie W. on May 30, 2011 8:23:42 GMT -5
Sue had a lot of questions there Supergrandma but if you could supply as much info as possible I know that folks are truly interesting in knowing/reading it.
Also; William Kramer.... if you have any addional info for us it would be great as well!
And; for anyone reading or looking for info.....We've a number of threads that have gone on here if anyonone wants to read up on it further.... Just start looking down the list of headings in the COPD area.
|
|
|
|
Post by williamkramer on May 30, 2011 14:03:15 GMT -5
Hi Folks,
Well, I am now miserable. I'm into the 4th week and the side effects have kicked in with a vengence and I am more short of breath now then when I started. I keep my spirits up be reading and re-reading the positive trial reports and chatting with my doctor. I will attempt to make it for the recommended 8 weeks and will keep you posted.
|
|
|
|
Post by maryaz on May 30, 2011 18:09:18 GMT -5
I don't recall ever reading about a medicine that you took that you had to endure such side effects before it kicked in. Just wondering if any of you have thought about it? I realize that this is the instructions but still most the time you don't go so long with side effects like this. I know when Spiriva came out, it could take up to 4 weeks before realizing that it worked. It didn't have side effects to endure while waiting. Just wondering???  |
|
|
|
Post by supergrandma on May 30, 2011 21:02:46 GMT -5
Hope this answers some of your questions. I had a flare up in Mar./Apr. but nothing since then. Some days I have really good breathing days and others days not so good so to say that the Daxas is helping with my SOB is hard to say at this point. I am wondering if perhaps it might depend on what type of Copd we each have on the end result. I know I was put on it so that I would not get so many infections and I usually don't get many in the summer so I will have to wait till the fall and let you guys know then.
But like I said before I feel better and definitely have a lot more energy than I have in a long time.
Hope this answered all your questions Susanny
|
|
|
|
Post by susanny on May 30, 2011 22:41:51 GMT -5
Thank you, Grandma. I appreciate your taking the time to share your experience with us. Just one follow up question: when you had this last exacerbation, was the duration shortened at all as well as the symptoms slightened?
I guess it's mostly a waiting game now. I hope you continue to tolerate the Daxas and that you see big reductions in your set backs.
|
|
|
|
Post by zar on May 31, 2011 5:45:03 GMT -5
|
|
