Investigating Inflammatory Issues

Kk so here is as brief as possible story.

Every feb like clockwork I get same symptoms which to me feel inflammatory related not infection, dont get me wrong sometimes I get infections brewing but not nearly as often as I feel I am having inflammation issues. I get back pain, tightness, intermittent pleurisy, etc. I will go in to my old clinic and they do PFT's that come out really good, showing slight reduction generally starting in small airways. I would tell them I AM getting sick, sure as heck show back up normally to the ER (why hemoptysis only happens after hours and on weekends is beyone me)2-3 weeks later with hemoptysis.

Despite not feeling I have an infection the answer was always there must be infetion in there SOMEWHERE. Ok sometimes I buy this but not all the time. I had one time JUST finished IV's and it happened anyway and they were baffled. Another time they had just seen me, I was clear as a bell and it happened.

Last year I had this happen and after two courses IV's, 5 meds, over 3 months I was not better the pleurisy got SEVERE the bleeding re-occured and I transferred to a new clinic that specializes in adults.

After ruling out all other factors they decided, especially based on what they saw in my bronch that it had to be inflammation based (what I had been saying all along but they not knowing my history or wanting to overlook anything were being precautionary with tons blood test, MRI, CT, Xrays, cultures, bronch etc).

I did 3 weeks steroids (2 weeks @40mg) and one week taper and sure enough after appt FEV were good but not all way back, two months later after all had calmed down etc I was back to having best numbers ever 103%FEV1 and 98% small airways. The FEV I was afriad I had lost and I hadnt EVERY seen my small airways so good when in conjunction with a good FEV1 plus my FVC was up too 111 which was a record. I was thrilled.

Now fast forward to this feb, last week I feel myself following typical pattern and start getting very slight blood streaks in sputum on friday for like 2 hours. Call nurse, tell her I was exposed to something irritating on wed (moth balls ugh) and hve been feeling tight we decide to monitor over weekend. Called monday said nope its not going away and went in this thursday told them the whole sheband about my theory on inflammation vs infection. Get this THEY AGREE.

Today's report FVC 111
FEV1 100 (down 3%)
FEV25-75% 88 (down 10%)

Yes, they had noted in my chart reaction to steroids was good, they had previously eliminated all other avenues and they decided I should start on steroids for 2 weeks. I am THRILLED! I hate steroids and I of course may need IV's anyway, I may get an infection anyway, but at least htey are willing to listen and think outside the box. I am especially concerned about getting sick while on steroids considering its 'going around' badly where I live.

My doc said he has seen a couple patients who seem to have these problems that are inflammatory in nature more often then infection. I culture PA, and achromabacter and have ABPA which I treat with xolair and is in 'remission state' I also have moderate bronchiectasis.

So this is a new adventure for me to explore this avenue. I am trying to figure out a way to do the steroids without driving DH crazy or gaining 10lbs since I have been trying hard and have LOST 10lbs and was shooting for another 10lbs. I am hopeful this will work, I am hopeful I will be able to avoid my feb IV's but I am trying not to get my hopes up. Just to make sure they dont get too up my lungs decided to give me mroe blood streaks today )(&*X^&)(#WE))!!!! but I did feel well this morning, ran two miles, and then this afternoon got some good stuff up which I hadnt been able to for a few days (another sign I always get). So my hope is now that the airways are opening up I will move some stuff that was stuck and this will be accounting for the blood. Unfortunately no breathing treatments tonight.

Ok I am off to bed, glad I can release this here because even DH just doesnt understand how huge this is potentially for me. I think we need to have a talk about a number of CF related issues. He tries so hard but I am jsut not sure how best ot explain some things or tell him waht I want/need during these times.

ok off to bed for real---steroids allowing!

TRACKING
29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper

15Dec2008 FEV1 103% FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 82

4Dec2007: FVC 99 FEV1 91 FEV25-75% 77