On prednisone and my treatment plan

I’ve been bouncing around the respiratory clinic for the past week, conferring with my pulmonologist and getting  full PFTs and simple bloods done. I also checked in with my gp this week. And the concensus is: it would be best for my asthma control if I had full control of my prednisone usage. In other words, I get a nice fat supply of steroids and decide when I need them.

Woah. This is different. In the past, I have had one course on hand to use in a pinch, like if I was travelling or something. The conditions are that I have to see my pulmo regularly (which I already do) and tell him exactly how I’m adjusting my treatment. The plan here is to sidestep the germy walk-in clinic and hopefully avoid emerg altogether. In case you didn’t know: I’m NOT on prednisone longterm, but I have an exacerbation every 1-2 months that requires treatment with oral steroids. For the past couple years I have averaged 9-10 courses a year. When I say it like that, it sounds shocking. This is TOO MUCH PREDNISONE and I wish it wasn’t like this but the flares come and avoiding taking it only lands me in the ER. That is not where I like to be.

I am kind of wary, will I know how to use it appropriately? Am I a responsible enough patient to be given full control? My pulmo says yes but I have my doubts. True, I know a lot about asthma and I certainly am used to how my own asthma presents itself. I was teaching the med student in the clinic a thing or 2 today. Poor guy was only second year and was sooo confused about asthma meds.

Here’s hoping I just stay well and won’t have to make too many executive decisions.

Long day…

Here’s a rundown of what my appointments were like today, for those interested. First off was allergy testing. The actual skinprick didn’t show anything out of the ordinary, just the regular dust mite, tree pollen, animal dander etc etc etc. I wasn’t tested for food allergies today, and while I can’t think of any foods I’m suspicious of, I would hate to miss a food allergy, especially since most foods are pretty easily cut out of your diet. I still need to go do my IgE test, which will determine a potential next step in treatment, as well as blood tests for specific moulds, which I have a feeling will show something. The allergist was very good, and had many suggestions for the actual treatment of the asthma itself. He gave me some free symbicort samples, yay. He also thinks I should use alvesco as an add-on steroid as opposed to pulmicort. Apparently it has less side effects, and he was all like ” I *heart* alvesco” and then he gave me a free sample. Ok then.

It seemed it was just me and the senior COPDers in clinic today. Oh how I miss going to the Children’s Hospital, where I could sit and watch Dora the Explorer in the waiting room. The pulmonologist and I hit it off really well. First I had to go downstairs to do spirometry. I did a good job! I couldn’t see the actual numbers so I can’t say for sure, but I peeked at the computer screen and my curve looked *perfect*.  The RT who had me do the PFTs was so friendly! But then the nurse was all like “It says on your chart that we are doing medicated spirometry today, and that won’t give us a good enough idea of what shape your lungs are in and you should really try to go off your meds before your appointment and blah blah blah”. And I was all like “Well I have been having a very hard time breathing lately and I sort of have this life that I have to live so there was no way I was going to spend my weekend flaring so that I could prove I have crappy lungs”. Except I said it much more politely,  OF COURSE. But then the doctor came in and he was great. The charts from my last ER visits were all in my file so he could read them right then and that really helped to give him a good idea of what my attacks are like. Remember how I said that I only went to the ER once last spring? Yeah, well apparently I showed up there THREE times. The notes were right there on my chart, so there was no denying it. Sooo, how could I not have remembered that??

This doctor is a fan of peak flows, so he wants me to keep a peak flow diary for the next month. So, I actually have to go out and buy a peak flow meter that is not for children, as I believe I have outgrown my pediatric one. I go again to see him the day before I leave for home, which is actually kind of a bummer but I think the pfs will give us something to go on so this is a good thing. Then I go home and transfer everything to my doctor there for 4 months. Never a dull moment, I suppose.

Now, I must madly study for my biology lab final tonight. After that is done, I will feel much much better. Sorry for the ramble on!