Inflammation Confirmed

ok so to update. I did the two weeks of steroids, that ended about 3 weeks ago, I had a check up yesterday. During that first week steroids I also removed all cleaners from my house and stopped using fabric softener (replaced with white vinegar in downy ball).


My FEV1 is 3% HIGHER than it has EVER been, thats right ever! Last time I did steroids it took me a while before I got fully up to speed and I have not been hitting gym as hard as normal. FEV1 of 108% and FEV25-75 was 90% my FVC was 124%--previous high 111, I have seen small airways higher but 90ish is my 'normal' and especially good given its March which is a tough time for me. Oh and I was also a bit under the weather with sore throat etc.

My doctor took a LONG time between when I heard him grab my chart from the door and when he came in, I found out he went back to look and see if I had ever had #'s this high. I have had 103% a few months earlier before I started feeling the inflammatory winter problems I get set in. I have had 105 once before at other clinic but the instrumentation is completely different and I am not sure they are comparable. I am not saying this to say 'ooh look at my #'s' I am showing the big difference because normally I would have done 2 weeks IV's and not gotten that high and not felt as good lung wise.

As the doctor said, "I think we are on to something here". Basically he said a small subset of cf population does seem to have a larger inflammatory, allergy, asthma, type problem than they do with infections. He siad sometimes we will need just ABX's, sometimes, just steroids, sometimes both and we will have to discover what my 'pattern' is, he said his patients like this can tell him what they are experiencing fairly accurately, like I did when I came in february with my same symptoms I always get in feb.

I will still be looking to improve my health and eliminate any triggers I can but I am very glad to know that I have an effective treatment. He said he would not expect any side effects long term for my health from usage 1-2x per year, if we had to extend the time or use it more frequently then we would more closely monitor for osteoporosis or diabetes.

I told him about my efforts to 'green up' my house via cleaners scents etc. He said given the fact I am allergic to everything airborne they test for, I have ABPA, take xolair with huge results etc that it makes alot sense. He said whether it is immune modulated response, sensitivity, or true allergies it is all going to do the same-relatively speaking, same thing and that unfortunately the symptoms often mimic typical cf symptoms and it can be hard to pick up the difference. Hallelujah someone believed me!

So I guess moral of the story is listen to your body, research, talk to others and ADVOCATE for yourself. Goodness knows this wasnt easy it took leaving my normal clinc, driving 70 miles to a new one, and months of testing and treatments to get it all figured out but I think we ARE on to what I need--now--finally!