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Research studies

I just got a call from my old doctors office asking if I would be interested in a research study-it is a biologic and is made for people with low IgE and who are on or who end up on doses of oral steroids throughout the year.  The research coordinator was telling me that one patient that is in this study averaged prednisone every month for the last year and once she started the drug, hasn't had any pred in 6 months and has improved her lung capacity 12%.  I don't know how I feel about it-biologics scare me to death-what would some of you do?

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  • Pljohns

    I'm in the middle of changing docs-the one at the severe asthma clinic I will be going to in Sept works closely with this research dept so I think I can hold off until then and ask.  They are sending me all of the info on the study later today  in e-mail so I'm a bit anxious to see what it is.  She did say it was a biologic injection.  This same research group did studies on Zolair and Nucala before they came out.

  • K8sMom2002

    Wow! I can understand your excitement and your hesitation. 

    The as you work through this. 

    What about biologics worry you the most?

  • Pljohns

    They just haven't been around long enough to have long term studies done or cancer studies done on them.  I know this research group well-I applied to be in a study 3-4 years ago but my lungs wouldn't cooperate and I didn't meet criteria to be included. Biologics alter the very cells of your body and how they are made up and how they react and that in itself freaks me out.

  • Jen

    @Pljohns How do you feel about this research study after reading the information they emailed to you?

  • Pljohns

    It still scares me to death-I'm going to talk to the new pulmo about it when I see her in 2 weeks and see what other options are out there.

  • K8sMom2002

    I think that's a great plan, Lynn! I will say that biologics have been out for several years now, so they're getting "real world" tested on many other disorders. And several other members here have tried biologics.

    There's no one right answer for anyone. Still I know you — you're going to carefully study this and talk with your doc and make the right choice for YOU. 

    Research is so important, and I know that it's the key to finding answers for us folks with asthma.

  • green881
    Pljohns posted:

    Biologics alter the very cells of your body and how they are made up and how they react and that in itself freaks me out.

    Don't know anything about Biologics, but my reading is they are proteins that block various receptors.  I'm not sure that is the same as altering every cell in your body? Anyone know more?

  • K8sMom2002

    Chemistry was never my strong point, I'm afraid! I know that whenever I'm considering a new treatment or medication, I use an acronym that a friend shared with me:

    BRAND:

    Benefits – what are the benefits?

    Risks – what are the risks?

    Alternatives – are there any alternatives?

    Nothing — what if we choose to do nothing?

    Decision – something that we AND our doctor can agree on as the best course for our family.

  • Pljohns

    Ooooo-I  like that-makes you put everything down where you can clearly look at what matters.  Thanks!!!

  • green881

    BRAND sounds logical, as Spock would say.  However there is a minor problem with that:  As a smart person told me just recently (a doctor actually!):  Life is a struggle against bad data.  For B, R &  N in many cases you have little to no reliable data.  As for Alternatives, I often find it hard to get straight information from the medical community.  Don't know why.

  • K8sMom2002

    That is something to consider, @green881, but I've tried to look at the prescribing leaflets and info on new drugs and I've talked with my doctor about how different medications would help our family. Sometimes when the doctor hears my questions, it helps prompt a conversation or a memory of research that the doctor has read about.  And sometimes, when I've brought up doubt or hesitation, the doctor will say, "Well, let's try x, y or z first." 

    Pharmacists are also good about giving you info — they are, after all, experts in medication and chemistry!

    How do you figure out whether a treatment is right for you?

  • green881
    K8sMom2002 posted:

    That is something to consider, @green881, but I've tried to look at the prescribing leaflets and info on new drugs and I've talked with my doctor about how different medications would help our family. Sometimes when the doctor hears my questions, it helps prompt a conversation or a memory of research that the doctor has read about.  And sometimes, when I've brought up doubt or hesitation, the doctor will say, "Well, let's try x, y or z first." 

    Pharmacists are also good about giving you info — they are, after all, experts in medication and chemistry!

    How do you figure out whether a treatment is right for you?

    Maybe I was being a bit tongue-in-cheek.  What I really mean is the medical community doesn't have much data readily available themselves for new treatments.  Doesn't matter who you ask or what you read.  The simple reason is that such data is not required.  What I am talking about is "quantifying" the benefit and risk.  As I understand they simply have to show the FDA it has a statistically measurable effect at treating the disease it claims and that it is safe.

    A simple example is the cramping side effect of LABAs.  I had it (moderate to mild) and I see many posts on boards saying the same thing.  But try to find a reliable percent statistic on that, good luck.  I know this also from a decade ago trying to find a study that quantified beclomethasone vs fluticasone.  

    I think in practice it is just more trial and error. If the existing stuff is working poorly for you, if you are on a lot of pred etc, they'll try something new, especially if the side effects are not that serious and/or easily reversible.  They just switch back if it doesn't work out.

  • Pljohns

    Still haven't decided about this yet and part of it is I have a history of meds working backwards on me or having reactions to them.  My current list of meds I can't take is about 25 and growing-and it's not the OTC meds-it's antibiotics and a lot of other prescription stuff-along with every single asthma med currently on the market.  That's why I use a COPD drug off label-it's the only one that has worked that I didn't have a reaction to (a couple of the asthma meds I had anaphalatic reactions too).  Sure I have the side effects from this one, but at least it hasn't almost killed me.  

    Two years ago I tried to get into a research study for a biologic-after a ton of testing, the director of the research center called me and told me he was afraid for me to be in the study.  He was afraid that if I had a problem with the biologic, he wouldn't be able to turn it around and with my history of problems with meds, that was a very real possibility.  I've sworn off them since then.

  • K8sMom2002

    Lynn, you bring up a good point … I hate that meds have not worked "as advertised" for you. Maybe there is ONE drug out there that does work and will help. I have faith!

    @green881, I do understand. We had a similar issue with our DD and a medication. We had an issue that was similar to the anecdotally reported side affects. Our doctor wasn't sure that the anecdotal reports were actually cause-and-effect related, so he was hesitant to make a change. But then when I talked through it with him, he decided that a short break would test things out without harming DD. It turned out that it wasn't the cause of her issue, but she wasn't worse off, either — so since he's conservative about prescribing drugs or keeping kids on medications, he suggested we not start it back. 

    It all goes back to doing exactly what you and Lynn seem to be doing — talking with your doctor, and together weighing the odds and figuring out how a medication is likely to work with you. 

    PS — I like your sense of humor!