Inflammation Banter

I have had two awesome convos with others have issues similar in nature to mine, I definately want to capture these so I can go back and reflect later.

Laura Montana girl

I can soooo relate to what you are saying. I often feel the tight wheezy feeling even though my pft's are not down that bad, but it always turns into infection if i don't treat it quickly. I also culture ABPA, and my doc is in the process of getting me on xolair. Anyway... that's not really my point...... My point is that the ONLY thing that helps me when I start having the wheezy's is pred, and even though I despise the side effects (moon face, irrationality, sleeplessness, jitters, screaming at the dog for reasons he has completely no control over...ect.ect.ect) It is really the only thing that helps with the wheezing, not even my breathing tratments will do the trick. My docs, both the ones at my old clinic and the one I am seeing now prescribe prednisone when I start exhibiting these symptoms. I know that pred can mask the syptoms if you are actually getting an infection, but for me, many times a couple weeks on pred will help with the wheezing, and i will not develop an infection. However if I do nothing the wheezy's almost ALWAYS land me in the hossy with a flare. I would say on average I am usually on pred at least twice a year, but many times it is more often. I am currently taking pred, and have been doing so since dec. I haven't found anything that really helps with the side effects, except I was thinking if maybe they could ease me into the pred the side effects might be less. I've noticed that after a couple days my body kinda adjusts and I don't feel so irritable, and the tears don't flow as freely, so I'm thinking I will ask to be put on a smaller dose and ease my way up to the big dose and the ween myself back down (don't know if this will work or not, but hey it's better than insta-crazy Laura) I also try to take it as early in the am as possible, to kinda counter act the sleeplessness, but still there are times when i need an ambien when I'm on steroids. I know one of the side effects of long term steroid use is thinning of the bones, so I have to have DEXA scans yearly to check my bone density, but that's all I can think of at this moment........... Hope this helps!!! BTW does the xolair work for you? OK big DUH on my part!!! Another side effect of long term steroid use is, of course steroid induced diabetes...... don't really know how that one slipped my mind, considering prednisone is probably the leading reason I now wear an insulin pump.OK big DUH on my part!!! Another side effect of long term steroid use is, of course steroid induced diabetes...... don't really know how that one slipped my mind, considering prednisone is probably the leading reason I now wear an insulin pump.

Laura - THANK YOU! Funny my symptoms come on differently than yours but I can relate to exactly what you are saying I get back pain, followed by a pressure around lower lobes (where I have scarring on outer peripheries that would be most likely to 'touch' sac when inflammed), then intermittent pleural pains that will last a brief second and then increase in frequency and length, tiredness, then lack of sputum movement then I will get a day or so where I get really junky mucous and then a bleed. Pretty much verbatim I can follow that pattern same as PMS or any other bodily 'rhythm'. I never really wheeze but I do start getting short of breath like going up stiars whihc is not my norm and I start getting a excercise reactive cough which for a daily excerciser SUCKS! I had a lady ask me if I was contagious a bit ago. All well. On the diabetes ugh, my family is rampant with it---whomever says there is no link to carrier symptoms I call BS if they did a study on my family I am 100% positive they could prove it. Anywya I digress. So both my sisters are type 1 and I have been trending towards diabetes world since I was first tested at 12/13. Right now I am able to counter problems by eating high protein/complex carbs but we shall see and thank you for the reminder. Also, interesting that you have ABPA, did you mean you culture aspergillus? I do not culture asp but I do have ABPA and the xolair HAS been wonderful for me, I will not go without it now. You can see my blog, a side of cf for my journey with xolair. I HIGHLY recommend it especially given the symptoms you describe.

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Originally posted by: Nightwriter Yes, Yes, Yes, Nicole. This is my story also. You are soooo lucky that you have doctors who recognize this. You are on this site far longer than I am, so that you may have read some of my posts. This is ALL I talk about. So your theories are going to help you so much! Thank you!

I will go back and search under your name as time allows but if you have a blog or a summary it would be most appreciated. I tend to be a very educated, pro-active, aggressive patient known for getting my way LOL and I am sooo happy that i have changed clinics last year. I went in to them saying 'this is my first feb with you guys and this is what will happen' and it worked!

I wish that I had found my doctor years ago who treats the inflammation just like you are talking about. She said that it really was too bad, because I sustained so much permanent lung damage (also bronchiectasis) that could have been avoided.

I went 21 years without being diagnosed after which I diagnosed myself and still got referred to a shrink and NOONE will ever treat me like that again so if I get to where someone is not taking MY knowledge of MY body serious I am OUT OF THERE! I can totally relate and you are right I am fortunate to have gotten fed up and transferred. So this new doctor: it helped that my bronch last year was clear, clear, clear the doc said he saw less mucous than any average Joe until he got to the lowest lobes he could and then he found some but they showed me the salt water mucous cocktail it was very light in color and well pink too of course since Ihad had a bleed but I think that convinced him also he took pictures and everything looked more bright pink/red that I think it was supposed to. He was surprised though that there was not 'massive inflammation' nothign striking and reportedly less than an average CF'er but I always follow a weird pattern and never fit the mold. I am ALWAYS the square peg medically speaking. Oddly enough this weird 'inflammation issue' I had last year that made me pursue a new clinic got to the point where for whatever reason after the second round of antibiotics when I could tell I still had something infl going on I got completely non productive like I have never been in my LIFE, then bled shortly after, which after that was was when he did the bronch.

When I first went to my doctor, she came up with a plan to reduce inflammation. I remember getting a cortisone shot and a very brief course (maybe 10 days of oral steroids) to get me started. I had to also reduce the inflammation in my nose (I was 100% blocked on one side and I didn't know) by using nasal washes and nasal sprays. The dripping down is a big source. Then I had to get rid of carpet, add a quality air filter and vacuum, remove fragrances, etc. I was tested for asthma and allergies. Put on antihistimines (I saw you take Xolair).

I have recently stopped wearing perfume, gotten breathe healhty mask for cleaning, dusting, hair spray use etc, I have been on xolair and allergy shots for 2 years. I switched from zyrtec (which is drying) to allegra and have a few more sinus headaches but find mucous movement easier. I could NOT have done allegra before getting allergies under control I just got too severe headaches and after taking EVERYTHIGN zyrtec worked best. We do have two dogs which I am allergic to but once my current serum vial is out for dogs that vial will be made 10x stronger and I will work up to it so that should help too (there is new data last year showing they could increase serum level on dogs). My DH tries to keep dogs bathed regularly and we have 3 beds we wash, air outside, store and rotate to keep them manageable. We have all hard wood and tile so that really helps. I love our dogs but I have talked to him about once they are old and gone getting something a bit more allergy friendly, he hates small dogs but perhaps a labradoodle LOL but I digress. Other things I have done is slowly switched to using alot cleaners to vinegar, baking soda, and bleach--this is a work in progress. As the stuff I have now runs out I am goign to look into less scented bath body products etc as well. I also am trying to arrange for my sister to come over and do some stuff that bothers me and for DH to take over ajax duties like tub scrubbing etc when other things just arent cutting it. I dont have a huge amount sinus issues, especially given extent my allergies, I dont culture anythign and nothing is blocked but I have notbeen checked by an ENT in years so probably should get an update. I do rinses when I am sick or feel the need. Now that my allergies are under control I have little to no dripping issues but the sinus's do act up with every pressure or season change. We will be in teh house we are in right now (which isnt bad but basemeent gets damp--hubby sprays bleach when that happens and was built in 1878) for a few more years but the next house is going to be built or gutted and have some VERY specific things to make it a breathing heaven!

I went from severe hemopytsis, and constant IV's, including inhaled Tobra in addition to always feeling sick to fairly normal. In the beginning, I was still sick every few months (sometimes with bleeding, fever, bad cough) but used Tobi and was fine. The illnesses started getting farther and farther apart. I couldn't believe it. My baseline FEV1 was 37%. Within 2 years it hit the low 50's, enough to go back to work and live a "normal" life gain.

I am sorry to hear you had to get that ill to get someone to listen to you. My baseline FEV1 did increase significantly when I started being ubber compliant, excercising, treating my allergies, and using xolair. The fact that when you take a steroid, you get better proves there is inflammation at work like you said. Especially when you see IV's didn't do the trick. My doctor tells me that short term steroids are okay. I take inhaled steroids every day, and if I'm sick and not getting better, I get a low dose shot. I don't know what meds you take and if you want I will share with you what I do. In addition to taking appropropriate meds and mucus clearance, I do take a number of anti inflammatory supplements. You can do a search under my name and find them. Always check with your doctors because what I do may not be right for you.

I take: allegra (most effective non drying on market) singulair (why not treat every potential allergen avenue available) zithromax (again with teh macrolide and inflamation benefits a good idea) prevacid 2/day (recently discovered acid reflux was irritating my lungs and causing inflammation, my reflux seems to have increased from occasionally needing once a day to always needing 2x/day) advair HFA 230/21 (changed from discus with new doc and higher strength this helped, old doc thought I should wean off of advair completely since I was treating allergies and ggetting xolair WHAT ever I refused) Nasacort (most effective for me and I have tried them ALL of course in winter my sinuses bleed but doesnt seem to matter which one I take that happens) birth control (my bleeding and inflammation also appear tied to my hormone levels, long story, this is an experiment)
Xopenex (I do this or 3-4 puffs albuterol before my treatments but am going to ask to switch to xopenex inhaler too)
Pulmozyme (2 vials once a day, for someone with high FEV1's studies have showed twice daily dosing beneficial, most clinics dont rx this way I requested it at old clinic and does great by me and in no way appears tied to my bleeds, It is supposed to be one vial 2x a day but I have found the other way more effective for me not to mention time efficient)
TOBI (I do month on month off not true 28 days, thinking about changing but again I do better alot times with HTS months than TOBI months.

Any time I am not doing TOBI I do just the xopenex and pulmozyme in the morning and then HTS at night)

Supplements: 1000mg vitamin c 2x/day,
Magnesium mg? tue/thur/sat and every day on abx (this is to replace the mg antibiotics leach from your system),
Calcium 500mg 2x day (previously had osteopenia but now am +1 instead -1 so no more!)
gut flora supllement (varying kinds and dedication to taking them)
B complex (cant hurt right?)

I would like to take more supplements and am looking into what vitamin levels macro micro trace I can and want to have run to help spur this on. The reason I am not more into supplements is because I just weaned my daughter this summer and I am planning to get pregnant again this year so I am very cautious. I believe in educated experimentation on myself but not my child(ren).

So I love your theories. If you do anything in your life to remove triggers it will add to your progress. Remember, in addition to actual allegies, there are irritants and chemical sensitivities that raise the inflammation which cause exacerbations. Most of the time, after an exposure, and subsequent symptoms (increased mucus, cough, fever and/or bleeding) I can treat the inflammation with my doctor's guidance, and I can get better without antibiotics. If I can't get the mucus out (such as being restricted in coughing because of bleeding), then it can turn into infection.

THanks! I addressed the triggers and my attempts at reducing them above. Let me konw any additional suggestions that are not TOO extreme, I do like to keep a life balance in perspective as well. Well scratch that tell me everything and I will decide what I think will fit in my life budget etc. So I konw taking steroids could allow an infetion to get a strong foot hold have you found problems when goign on abx after takign steroids?

I did have an exposure which I believe kicked this months process into high gear. I had clothes for DD stored in basement in tubs with moth balls well we had brought them up and I asked him to wash them. I had never used real moth balls before. When I got home he had opened them and had them in piles to wash and the whole HOUSE smelled horrid horrid horrid it was really bad even though he was already washing them. He immediately took the others out on back porch and continued washing repeatedly the ones in teh washer but that was also a day of a torrential down pour and our basement got wet so he also overdid it on the bleach (trying to be a sweetie and keep me safe) and so the two together did me in and I got some pain that night, a tiny spot blood next morning which I thougth was from my sinuses, and then the next day was when I got streaks blood for sure from my lungs.

I'm very interested in hearing how you progress.[/Q]

I will keep you posted, thanks!