antibiotics and resistance, general questions from a recently diagnosed

[zamanka]

I was diagnosed at 34 and I think it took 4 to 5 months for them to figure out what was wrong with me. I remember having medicine and lung clearance to start doing daily. I believe catching pseudomonas is why my case was brought to light.

The antibiotics you take are determined based on the infections in your lungs and how your health is. TOBI is a very common and effective antibiotic used for pseudomonas. I'm surprised it's not on your list as one that you've tried. This is one that I think people often take two weeks on/two weeks off or one month on/one month off. I believe this is partially to avoid becoming resistant. It does sound to me like it would be worth getting a second opinion on what you're on.

Please don't take this a discouraging, but I am on antibiotics all the time. This is because of multiple infections that have been giving me problems in recent years.

In terms of your husband remembering to take his medicine (I agree it's primarily his responsibility), I would suggest two things:
1) I take mine to coincide with meals. I put the medicine at the table where I eat to help me remember.
2) For other medication, I set a daily alarm on my phone that reminds me.

In terms of where you live, I've heard that living on a coast is good for people with respiratory problems. The salt water gets in your lungs -- kind of like hypertonic saline -- and helps keep them clearer. I find when I go on a beach vacation, this does hold for me. I don't think this is very scientific, though.

I grew up in the US but moved to Toronto (Canada) ten years ago. I was diagnosed with CF when I was with my last US insurance company (i.e., I never had to change policies as a CF patient). I don't know a lot about pre-existing condition rules, but I would definitely be worried about them. Obama's Affordable Care Act is supposed to get rid of pre-existing condition requirements, but I don't know the timing of that.

As Bill mentions above, the Toronto adult CF centre is fantastic. Because it's a large clinic (about 400 patients), they are familiar with many of the less common cases and symptoms. I feel confident in my doctors and the entire CF care team. I've also been observed by CF doctors from other countries who come to study with the Toronto program. Toronto is a city of immigrants and I've worked with people who have moved here from the UK and South Africa. My manager at a prior job had moved from London and he felt the cost of living in Toronto was much better.

Finally, my sputum results that are done each time I visit the clinic do include information on resistance to various antibiotics.

Sorry for the long response, but hopefully this contains some useful information.

Good luck to you and your husband!

Thanks for the all information and tips you gave, Michael!
Seems like you have a very similar story to my husband (catching Pseudomonas in your 30th). By the way have you got an idea where you caught it?
May I also ask you about your lung function? How it was when you were diagnosed and how is it now?..
I'm a bit worrying about the decline of 12%, seems to be too quickly and unpredictable.


Regarding the medicine: I'm now thinking why they never prescribed this for him, it could be two reasons for it: or Doctors thought that his lung function was pretty good and Colomycin (which is not as strong as Tobi) was enough for him at the moment, or it's because of the price http://www.medicinechest.co.uk/inde...ing&controller=product&pid=2674240&Itemid=461
that seems to be super expensive! I'm not sure how it works with this kind of very expensive medicines here, if we can get a discount or something? I will try to find out about it. Pulmozyme seems to be a very expensive medicine as well.
By the way, do you also use a vest as well? I've seen some videos that people are using this, but here we definitely need to find money by ourselves for it.
How the medical system works in Canada? Is it free there?

 

[zamanka]

Yea antibotics have horrible side effects on the body. I will take them is I do all my natural stuff for a week and see NO improvement, but in the last year Ive had IVs twice - but both time the doctors say my psuedo count was so low they didn't see how it was making me sick and 2 other times were orals bc the weather change gave me a nasty sinus infection that let to my chest. However I always ask for the lowest possible dose and duration - I also keep up with all my natural remidies. Garlic supplements have made my psuedo counts almost non existant as well as my staph which was so low last night they though it might have just been from sinus drainage and not my lungs. Also I have cultured MRSA since I was 16 and I haven't had one culture with it in the last year. Ive cultured many other drugs over the years and none of those have shown up either. I watch my mucus changes very closely to that at the first sign of something I start using natural remidies. You can NOT cook the garlic in order to get the antibiotic properties. You must use it raw (like juicing it) or in supplement form. However it has other properties so eating in anyway is great. There are also things like collodial silver that fight bacteria, ive not personally used it but I plan on getting some next pay check. Check out my blog www.insidecf.blogpsot.com I am all about treating my CF naturally.

Thanks for sharing this I told to my husband about the garlic effect you've wrote and he is really excited! He really loves garlic (FART) And we just had a dinner with lots of onions. I'm afraid he better keep distance from me now

btw, he asked if onions shouldn't be cooked as well?

 

[zamanka]

I'd be very cautious in forgoing medicine for natural treatments, absent scientific evidence it works. I am not opposed, but I agree with our son's CF doctor, whose position is that if it does no harm, then it is fine to try. But that wouldn't mean foregoing proven treatments such as antibiotics. That said, it does sound like your husband's doctors are not doing standard treatment with antibiotics and that a second opinion is needed.

Re the cost of private insurance--it depends on too many factors, but it would be more expensive than insurance through an employer. Why would you not just use insurance through an employer? One of you would be working a full-time job wouldn't you to be able to afford L.A. and make a move make sense?

Yes, it's always interesting about other ways to treat CF and healthy food is good anyway. But what I'm thinking is that before antibiotics was created someone should have already tried the other healthy way for treating CF then...

Did I understood right that standard treatment is Tobi (if pseudomonas) and Pulmozyme to nebulise and tablets only in crises?

Regarding the insurance - so the insurance cost is the same (around 3000 dollars as I've read about this good deal here: http://forum.cysticfibrosis.com/thr...r-insurance-Is-it-really-as-good-as-it-sounds
but if you have an employer he would just cover a part of the insurance's cost?

 

[zamanka]

I would just like to say in spite of what others on here have said. That yes that is how the Health Care system in America DOES work for some people. I've had 8 total months without insurance since becoming an adult because the County Assistance offices wouldn't put in that I moved (this happened on two occasions with two offices). Honestly, if you have a choice to NOT be in America with CF, and to be in another non-third world country. STICK WITH IT.

thanks!
how much this 8 months costed you by the end?

 

[MichaelL]

Sorry for the slow response -- I'm just seeing your follow-up now.

I don't really have any idea where I caught the pseudomonas. I lived in Chicago at the time, worked in a large office, took public transit. It could have been any number of places.

I moved to Canada about a year and a half after my diagnoses. Since I changed clinic, I don't actually know what my initial lung function. It's also somewhat confused because they changed the predicted numbers (used to convert real numbers to percentages) a few years ago, which dropped results by as much as 10%. My FEV1 is currently around 45%. I would guess I was in the 80% to 85% range when I was initially diagnosed. I picked up a fairy nasty bug -- mycobacterium abscessus -- in 2008. My lung function dropped a fair amount at the time I caught this bug.

The spirometry results can vary even day-to-day. Although 12% is a big drop, you can probably recover all or most of this through medication and lung clearance. You have probably already heard, but exercise is also very important in keeping lungs healthy.

Yes, TOBI is very expensive, although it looks like it's cheaper in the UK then in Canada (and cheaper in Canada then in the US). I'm fortunate that it's covered under my employer drug plan. If you go on TOBI, I would recommend the Podhaler over the nebulized version. In Canada, they are the same price, but the Podhaler is much less treatment time. Personally, I don't like Pulmozyme because I always end up coughing up blood the day after I use it. I know many people on here love it, so don't take that as an indication you shouldn't try it. However, I find hypertonic saline works better for me and it's significantly cheaper. In Canadian dollars, Pulmozyme is about CAN$1,100 for a month compared to about CAN$14 a month for hypertonic saline. Drug prices do vary by country, but this gives you an idea of price difference. I did not use either (hypertonic saline or Pulmozyme) until several years after I was diagnosed. I'm not sure if this was because of my better health or because of the drugs being newer.

I use a flutter device (http://evergreen-nebulizers.co.uk/mucus/flutter.html) for lung clearance. It takes some getting used to, but I find it very effective. This is what my doctor recommended when I was diagnosed. I tried using an acapella choice (http://www.smiths-medical.com/catalog/bronchial-hygiene/acapella-choice/acapella-choice.html) about a year ago, but ultimately switched back to the flutter. Here's a video that the Toronto clinic put together to demonstrate various lung clearance methods and discuss them: http://torontoadultcf.com/content/breathe-easier

Canadian health care varies by province, so I'm only familiar with the Ontario plan. All my doctor visits and hospital stays are covered. Prescription drugs is where the plan could be better. Historically, CF drugs were covered until the early 1990s. At that time they introduced drug coverage in cases where prescriptions exceeded a percentage of your income. However, they grandfathered CF drugs in use at the time of the changeover. That means many of my medications are covered by the provincial plan (e.g., Cipro, Pulmicort) but newer drugs are not covered (e.g., TOBI). Generally, prescriptions are picked up by a private plan provided by employers or the provincial plan if the costs exceed a percent of income.

Let me know if you have other questions.

 

[zamanka]

!

Sorry for the slow response -- I'm just seeing your follow-up now.

I don't really have any idea where I caught the pseudomonas. I lived in Chicago at the time, worked in a large office, took public transit. It could have been any number of places.

I moved to Canada about a year and a half after my diagnoses. Since I changed clinic, I don't actually know what my initial lung function. It's also somewhat confused because they changed the predicted numbers (used to convert real numbers to percentages) a few years ago, which dropped results by as much as 10%. My FEV1 is currently around 45%. I would guess I was in the 80% to 85% range when I was initially diagnosed. I picked up a fairy nasty bug -- mycobacterium abscessus -- in 2008. My lung function dropped a fair amount at the time I caught this bug.

The spirometry results can vary even day-to-day. Although 12% is a big drop, you can probably recover all or most of this through medication and lung clearance. You have probably already heard, but exercise is also very important in keeping lungs healthy.

Yes, TOBI is very expensive, although it looks like it's cheaper in the UK then in Canada (and cheaper in Canada then in the US). I'm fortunate that it's covered under my employer drug plan. If you go on TOBI, I would recommend the Podhaler over the nebulized version. In Canada, they are the same price, but the Podhaler is much less treatment time. Personally, I don't like Pulmozyme because I always end up coughing up blood the day after I use it. I know many people on here love it, so don't take that as an indication you shouldn't try it. However, I find hypertonic saline works better for me and it's significantly cheaper. In Canadian dollars, Pulmozyme is about CAN$1,100 for a month compared to about CAN$14 a month for hypertonic saline. Drug prices do vary by country, but this gives you an idea of price difference. I did not use either (hypertonic saline or Pulmozyme) until several years after I was diagnosed. I'm not sure if this was because of my better health or because of the drugs being newer.

I use a flutter device (http://evergreen-nebulizers.co.uk/mucus/flutter.html) for lung clearance. It takes some getting used to, but I find it very effective. This is what my doctor recommended when I was diagnosed. I tried using an acapella choice (http://www.smiths-medical.com/catalog/bronchial-hygiene/acapella-choice/acapella-choice.html) about a year ago, but ultimately switched back to the flutter. Here's a video that the Toronto clinic put together to demonstrate various lung clearance methods and discuss them: http://torontoadultcf.com/content/breathe-easier

Canadian health care varies by province, so I'm only familiar with the Ontario plan. All my doctor visits and hospital stays are covered. Prescription drugs is where the plan could be better. Historically, CF drugs were covered until the early 1990s. At that time they introduced drug coverage in cases where prescriptions exceeded a percentage of your income. However, they grandfathered CF drugs in use at the time of the changeover. That means many of my medications are covered by the provincial plan (e.g., Cipro, Pulmicort) but newer drugs are not covered (e.g., TOBI). Generally, prescriptions are picked up by a private plan provided by employers or the provincial plan if the costs exceed a percent of income.

Let me know if you have other questions.

It's so weird that for CFers there the danger everywhere, that they can pick up a bad bacteria at anywhere. So sorry for you and for everyone.
And thanks for telling your story and about Canada and the medication... It's good to know.
My husband has the Acapella but he doesn't use it and doesn't like it, I will tell him to try the Flutter!