New Meds... anyone have any experience with these?

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anonymous

New member
Hi!
I was recently seen by the University of Utah CF clinic (love it!), and they put me on some extra nebulized meds.... just wondering what ya'll think of these (if you've been on them).

First, they put me on Pulmicort (I'm already on advair 500/50, but they wanted me to nebulize a steroid as well).

Also, they put me on Hypertonic 7% (I did fine with it in the office... not too much coughing, but later in the evening became very SOB... anyone have this happen?)

Thanks!
Sonia
 
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tiregrl19

New member
Sonia I have heard many things about the Hypertonic solution--
basically medical salt water by what I have heard. My doctors are
looking into it, they are trying to decide what nebs are more
important. It is hard enough to get people to do Pulmozyme and TOBI
religiously let alone another. I have seen a couple articles on it,
supposedly it makes the airways slick and doesn't allow mucus to
stick to them and allows what is there to be coughed up more
easily. I have heard of many peoples PFT's to rise quite a bit.
There isn't enough research though to determine long term affects.
I was sent an article when the study was first released but I
deleted it unfortunately, here is a link to an article that I found
that says pretty much the same thing.<br>
http://health.yahoo.com/news/143250;_ylt=A9htfoxLJSNEXYAA2Tf3tMUF<br>

I hope this is a little helpful--- Good luck with your new nebs!!!
 
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Allie

New member
Ry used Pulmicort, and it was the most effective steroid for him. My little brother (severe asthme) Uses it too, and swears by it. It's why Ry tried it, actually. So It's all good from this end!
 
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thelizardqueen

New member
I used to use Pulmicort and another type of steriod turbo inhaler, but was switched to Symbicort which is Pulmicort and another type of steroid. It works great for me. I definitly notice a difference when I forget a dose.
 
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rebekahphillips

New member
Well I just did a run through with hypertonic solution with a resp. therapist. It really helped me. My therapist listened to me before and after the hypertonic treatment and heard a good difference in my lungs! So i am real encouraged about this. i heard that it improves lung functions!
 
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anonymous

New member
Both of my children used pulmicort. Dd for 3 years from age 18 m, ds for 1-1/2 yrs. They've both switched to advair because it's easier but the pulmicort worked well. Some hospitals use it to treat mild-moderate cases of acute croup so it must work faster by neb form because they don't do that with the inhalers.
 
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JazzysMom

New member
I have been on Pulmicort neb for a year & love it. I did try Advair last year & didnt feel it worked so I stopped it. I also was having SEVERE airway restrictions so I might not have been able to inhale it properly. Recently my doctor wanted me to try it again. I didnt want to waste the $$ so she gave me samples of Advair to try & see what happens before I fill a script at the pharmacy. I dont feel it helps. If anything I think it might actually make me tighter. I dont wheeze, but my chest feels heavier. I have learned that how I feel dont coincide with what the tests show so I will wait & see what shows up at my next appointment before making a decision on the Advair. I have only been back on it for 2 weeks so I need to be fair & give it a better chance! I always prefer nebs tho. I just feel that I get more into me. Yes I hate being stuck by the machine, but if it helps me its worth it!
 
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lovingBenandCambree

New member
Sonia,

I go to the U of U too. Which doc do you prefer? Carveth or Liou? Are you the same Sonia that is discouraged about wearing oxygen while exercising. If so I know that being in Utah and the altitude is a big part of it. Carveth actually just started me on the pulmicort as well adn I do like it. As for the Hypertonic, I tried it and then went adn did PFTs right after. My PFTS dropped 10 pts. Apparantly I had bronchospasm which is why I can't do Tobi anymore either. WE are going to try 3% next time I go and see if that helps. Good Luck! Oh and which part of UTah do you live in?

Emilee
 
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Scarlett81

New member
I'm on Pulmicort, 2 times a day. I feel great on it. I don't have as many coughing spasms-those morning fits.
I just started Hypertonic Saline-10%+3%. It's too soon to tell how it's affecting me. And I haven't had PFTs since I've been on it. But-I cough up more sputum than ever when I do it, and since I've been on it.
 
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anonymous

New member
Liza- Hi! They ended up putting me on Creon 10, thanks for asking. Its about 2 X what my pancrease had in it, but the closest they could find. It works fine (I don't see any difference). I'm hoping it even helps me put on weight in the long run. Maybe I needed a change in enzymes. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emilee- That's great that you go there too! Well, I really like both docs! I just had my very first appt. at the clinic so I saw Dr. Carveth. I have been in an insulin study there for the past year, and have also talked with and been examined by Dr. Liou. They both seem very smart and very understanding. I like how Dr. Carveth says, "I think we can do better", even though I am feeling pretty darn good! ha ha. Which do you prefer?

I don't actually live in Utah.... I live in Vegas and to say the least, care here is horrid. So, I don't go to the "center" (if you can call it that) here. I have always been just flying/driving to Utah for the study. Now, I will fly/drive for my appts. every 6 months or so and also be followed by an internal med doc here on the AF base.

I AM the same Sonia worried about the O2... this is mostly why I need a pulse ox here also.... since we're like 2000 ft. lower than SLC. So, we'll see. Thanks for all your information and putting my mind at ease a bit.

So, how often do you go into the hospital? They do continous IV's there, right? I think I will end up going home after a couple days and getting the meds figured out, cause I get really sick and run-down in hospitals and have panic attacks and am a control freak, so you can imagine my dismay at relying on someone else to do treatments, meds., etc.... lol

Oh, and I also cannnot do TOBI at all! Terrible SOB throughout the days when I do it. YUCK! 7% seemed ok for me, but like I said, I seemed really SOB later in the day. So, I haven't done it since. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, thanks for posting, everyone! I haven't filled the pulmicort yet, but plan on filling it in the next week.
 
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lovingBenandCambree

New member
I like both Drs. Dr. Liou I think is crazy but really what doctor isn't to some degree. I feel that he can be really negative at times and I do not like being around negative people, but then every now and then he surprises me. Dr. Carveth is more on the positive side still being realistic. Don't get me wrong it doesn't have to be roses for me. Tell me like it is but still be optimistic. I have blown them away with how well I have been doing in coming off Oxygen adn stuff. I am sure that you met with Heidi and Teresa as well. I adore them. I feel that they are more friends than anything. Especially Teresa! As for hospitals, well it really varies. I am trying to get it to twice a year but you never know how your body is going to respond. The first time I went in I was 16 and then once a year after that until I started a really stressful job, then I went in 4 times that year. Then after having Cambree it was 6 times that was awful. As of 2005 it was 4 times and I haven't been in since November so we are definitely getting this under better control. I usually stay in for the total 2 weeks. It is just easier than coming home and trying to take care of my IV and the baby. It works for us. I can understand your anxiety. I know the nurses and Respirtory therapists get annoyed with me because I am so on top of things and page them like 5 minutes before my meds are due so that I get them on time. Oh well you have to do what you have to do.

Good to hear from you!

Emilee
 
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anonymous

New member
Emilee,

Theresa wasn't there the day I went so I didn't meet her. I email Heidi freq. with my requests if I need anything, and met and chatted with her at my appt. for the 1st time. So, is she the coordinator or a nurse or what?!? What is Theresa? Will I usually see her too?

Thanks,
Sonia

p.s. Do you think having a baby made you "sicker" overall?
 
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luke

Guest
A couple med clarifications:


Liz,

Symbicort is actually pulmicort and formoterol (which is similar in its actions to serevent). So it is not actually 2 steroids but 1 steroid and 1 long lasting beta agonist (bronchodilator). It has not been FDA approved for use in the U.S. yet but is in the works. Our "equivalent" to symbicort is Advair.

Amy,

Intal is not in the same drug class as pulmicort. Pulmicort is a inhaled steroid where as Intal is a mast cell stabilizer. It does decrease inflammation but is non-steroidal.

Sonia,

I am unsure why your clinic wants you on 2 inhaled steroids...I would just watch for lung irritation(bloody sputum, bronchitis) to make sure your body can handle both.
 
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anonymous

New member
Luke,

The doc said she wants me on both for a "trial month" ... otherwise, if I stop one and start another, and get better (or worse), we won't know if its cause I stopped Advair or started Pulmicort. If I continue on Advair (which I feel works) and then add Pulmicort, and feel worse, we'll know its cause of Pulmicort. And, if I feel better, we'll know its cause we added that. I would then suggest we do a trial month without advair to see if I still feel better.

Its bascially all about a little "experiment" and being able to tell which is working.

Sonia
 
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anonymous

New member
Sonia,
Teresa is the respirtory therapist person that we talk to about treatments and such. Heidi was a nurse which is how I got to know her really well, then she applied for this job and is basically, the CF coordinator.
As for the question of whether my pregnancy made my CF worse, it is not really a black and white answer. I am sure that my doctors would say yes, but when I first got pregnant I was doing really well adn actually started to get even better at 4 months which is uncommon. Meaning that my PFTS went up. My doctors were amazed and said that I didn't need to come back for 3 months. I don't believe this ever should have happened. I don't blame the doctors. It is as much my fault, but I should have been seen at least once a month from that point on. When I initially got pregnant my health had been declining for the past year from stress from work. After getting pregnant I knew that I had to change something so I quit my job. While being pregnant I started to feel that I wasnt breathing as well but blew it off as well I am pregnant and this is supposed to happen. Then I tore ligaments in my rib and should have gone to the doctors then. I did shortly after but didn't do PFTs due to the pain. Anyway, if I do get pregnant again I would be much more proactive rather than reactive. I would go to the doc at any sign of discomfort just to see how things are going. Anyone that asks me about this that is what I tell them. If they get pregnant don't assume that anything is just because of the pregnancy and get it checked out. It won't hurt anything but only help your health and that of your babies.

Not signed in lovingbenandcambree

Emilee
 
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