Dalisresp and other things

[wendyco]

A long time ago I mentioned I had tried a new (to me) med and at the time Colleen asked if I could share my info. just put together a few things on this past year.....hope I don't bore you all.......
For the past year my Doctor has had me on Azithromycin (zpak)
250mg every day. A few weeks ago we stopped it as she was told after patient being on for a year to take a break from it…..got to tell you, it did not help breathing at all but it did lower the number of infections I got that needed to be treated with antibiotics.
In the long run it did help and had no side effects….


Later this Summer I was willing to try Daliresp (Daxas) due to extreme SOB…I went on it and within 6 days my sciatic nerve went haywire and I had none-stop pain in my rear and right leg….per Doc’s orders I stopped the Daliresp and went on a pred taper , within 4 days the pain was gone. I went on a vacation shortly after but told the doc I would be willing to try it again when I returned. If it happened again we would know it was the med and not a coincidence. So came home and started up again and within 6 days the sciatic nerve went nuts again but this time, both legs were involved. Stopped the med and within 6 days all the pain was gone again….it never did help my breathing either during all of this…..I know many have tried and some have had great luck with it, but it’s not my friend……

And most recently I did a study through national Jewish, in Denver. The title of the study is:
“Cardiopulmonary Mechanisms Affecting Cognition in COPD”…It was a two part test and the first part is filling out a questionnaire about your health, quality of life, how you feel and then 3.5 hours of paper and pencil tests of memory and thinking skills. Also a pyrometer and six minute walk…..
The second part was at University hospital (where I had my LVRS) consisted of a urine test (no trouble cause I had to fast for 12 hours and no coffee or water before the test) and than an ultra sound of my heart and carotid artery….after these two I was to have a blood pressure cuff put on my arm for 5 minutes and then they release it and scan the artery in my arm…couldn’t do it as the machine crashed! No joke, just stopped working….they felt they had enough and would not make me come back down just for that test.
Almost forgot, had to wear an overnight Oximeter for two nights….
They will not tell you anything about the results but if something you did, had etcetc shows up that they have concern about, they will inform you and then you can follow up with own doc.

I try to do as many of these as I can hoping for the generation coming up. That somehow, someway all of this will ease their breathlessness and comfort…..

[maryaz]

Hi Wendy; I am just getting back to the board. Don’t know how much time I will be able to be here for a while but will try to check in now. I am reading to catch up. Starting at the top and working down. I saw the drug in the title and wanted to read as I know what it is.

I think JohnO uses the anti’s on regular basis but not everyday. I am not sure. I have been planning on specifically asking him because it is something I thought might work for me up the road. It is on my ‘to do’ list to inquire of John. I cannot imagine needing it everyday tho. Once I understand what he is doing, I could at least talk with my doctor about if I felt I needed it. I don't want anymore drugs than I have to. Sometimes, our breathing does want more.

That drug has some awful side effects if you are one to get them. I have read several people that suffer thru the side effects for quite some time in hopes of the drug improving their breathing. My doctor just mentioned the drug to me and I told him ‘no’. I wanted to see what others had to say and I don’t even want to try that one.

Thanks for all you do for the cause and for all the others that you help. You are a trooper. BTW, I am hanging in there. This week is looking better but never know from day to day.

[Colleen-NC]

Thanks so much for the update and info Wendy, I had no Idea it had so many side effects......

[debbieky]

After reading this I don't know if I want to try this med or not. My doctor gave me samples about 4 months ago and told me to give it a try. He said it would not improve my breathing, but would help reduce flare ups. I read a little bit about it online and decided I did not want to try it. I went back to see him yesterday and he was not very happy with me for not trying it and still insist I give it a try. He is concerned because every flare up causes me to lose more lung function. He said the major side affect was gastrointestinal. I hope he has been researching this medication alot!

Guess I will try it and see what happens. Wish me luck with this medication! I will let you know how it worked for me after giving it a few days.