Welcome, Ginetteps

[susanny]

, Ginetteps!

Glad to have you join the forum. There is a wealth of information to be found here and many who are ready to help you with any questions you may have. Also, come and join us "AT The Fence" and see how we're living with COPD. Feel free to jump in whenever you feel comfortable.

Sue

[John]

[peter]

Welcome to the group Ginetteps

[sandy07]

Welcome. Don't be afraid to ask questions.

[Deleted]

Thanks for your welcome. Live in Toronto (Don Mills), Ontario, Canada. Been diagnosed recently, but my Dr. thinks he might have misdiagnosed me... will see a lung doctor mid-September. Have been given some medication (Spiriva and Advair) that seemed to constrict my airwaves, had to stop anyway for full PFT. Did not want to start them again, got Ventolin 4 x day. Have a serious dry mouth problem, Dr. seem to have prescribed Sialor (that I should get Tuesday from the pharmacist) but there is no information at all on Internet about that medication. WHo makes it? What ingredients are in there, what are the side effects? Nothing at all. Nothing!!! Hesitate to take it as, beside the dry mouth and slight anxiety, I feel fine. Debating if I'm going to take it or not. What do you think?

[susanny]

Here is some information on sialor. Seems to be for dry mouth, but there is also something that dentists recommend that is over the counter, not sure but think it's called biotene? Ask a pharmacist or call your dentist and ask him/her. Comes in a mouth rinse or a toothpaste and works really well.

I had some trouble with Advair and couldn't take it. It made my airways constrict, also, and made me very short of breath (SOB). If you do go back on the meds, ask your dr to let you try each of them separate to see which one is causing you problems. When I tried to find out, I stopped the Advair for a month and got better, then went back on it and got worse again. So I don't use that anymore. There are other meds you can use instead. The Spiriva is a totally different type of med and I hope you are able to continue with that one since it is basically the only med designed specifically for COPD. I and my husband have found it to be of great help.

Did you already have the PFT and if so, what was your FEV 1 %? If you don't know you can get a copy of the test results from the dr's office by asking....you have that right to own it. If you haven't had the PFT yet, when is your appt?, when you see the lung dr in mid Sept? Good luck. I hope you don't have Copd, but if you do there's lots you can do to help yourself out.

Take care, and good luck! Sue

[Deleted]

Thanks for the info, Sue. Sorry for the delay, had computer problem. Was given both Spiriva & Advair after I went to my Dr's office and rushed into his office all panicky: told him I was so panicky that I needed something to breathe. Then he looked at my file and talked about the first Spirometry test done at the end of July and said something like: when your numbers are below 70, you are COPD! The therapist who did that Spirometry test told me she was doing it only to prove to my Dr that I was in bad shape and should not have the metacholine test scheduled for Aug 21, but recommended to switch it for a full PFT. Got it and the therapist did not officially gave me the results, but by her answers to my question, I have a feeling that my numbers have improved. After stopping both Spiriva and Advair for that test, I was taking only Ventolin. Still taking it.

By the way, I spoke to a friend who has asthma (diagnosed in her 20’s) and she told me to watch out with Ventolin. It makes your lungs lazy and they ask for Ventolin more frequently. She told me, like you, to take back Spiriva and Advair, one at a time for a certain time and see if I get the bad side effects I had before stopping them. (the COPD helpline also told me that). She also told me to take one puff of Ventolin about 5 minutes before taking Spiriva and/or Advair to open the ”airwaves” and then the medication will be more effective -- also read that in this forum. She takes Ventolin and Advair, and she told me it works perfectly for her. Because I see the lung specialist on Sept 17, I will not make drastic changes to what I’m taking right now and will bring all the medications and info to him, and wee what he thinks about that.

Regarding the dry mouth, have bought the Biotene product that the pharmacist recommended to me while I visited the pharmacy.I will try that. Regarding the Sialor, the pharmacist finally phoned me about it. I found who makes it (Pendopharm) and got info. In some provinces, this medication is considered as having an “Exception Drug Status”. For now, I will stick to the Biotene product and will not take Sialor as the medicinal ingredient (Anetholtrithion) has a counter-indication when it comes to the liver and/or other organs related to the liver. I already have pain in that area so I will wait for the advice from my gastroenterologist (I see her on Sept 21).

Thanks a lot for replying, Sue.

[susanny]

Your very welcome. I have another suggestion, relating to using the Ventolin prior to using your other meds. Our Respiratory Therapist has made up a chart with the correct order he suggests meds be used. Most if not all of us follow this and get good results. It can be found at this link:

www.emphysema.net/inhaler_sequence.asp

I used to inhale my Ventolin-like inhaler (Proventil) prior to using my other meds but wasn't getting good results. Then I saw this and tried it and found it works a lot better. Now what I do is use my Proventil about 2 hours before using my other meds. This opens up my lungs but gives it a chance to clear out and let the other meds get through. I would suggest you try it and see if this doesn't help better. There is a scientific reason behind it having to do with the pathways that enable the meds to work.

I'll be interested to hear how the Biotene works for you. I take a lot of meds that dry out my mouth and it has caused severe dental problems in addition to thirst, so you want to be sure to use it.

Take care, Sue