I'm going to apologize beforehand because this post may be a bit erratic. My daughters FEV1 dropped from 97% to 64% from May to July with only S. aureus and H. influenza being cultured. Her pulm. started tweaking treatment times, current med doses and amounts to no effect. He added prednisone at the beginning of August and within a week, her FEV1 went from 64% to 83% and we were ecstatic! She goes back in Sept. for another PFT. My concern is the immunosupression that comes with taking prednisone. She just started school again last week and I'm nervous that she'll catch a bug (although not complaining because she IS doing well) and her pulmonologist is, too. My question is: Are any of you on the high dose NSAID therapy? I read this morning that inflammation is actually the main cause of exacerbations in CF. NSAIDs have been proven very effective, yet only 10% of CFers are prescribed high-dose NSAIDs due to the rare, but serious risk of gastric bleeding (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3425089/?tool=pubmed). Any thoughts on this form of therapy?
High dose Ibuprofen
- Thread starter NoelA
- Start date
Aboveallislove
Super Moderator
I asked our CF doctor about this and was told our clinic REFUSES to prescribe because of the risks. And that the main CF Clinic which does was the one which did the study. Not making a judgment, just repeating what was told me when I asked.
They considered at one point in time putting Abby on that when we couldn't get control of her nasal polyps but decided it would be a LAST resort effort after every other option was completely exhausted because it is very VERY hard on the liver and kidneys is what they told me. So I decided that I could cut polyps out, I couldn't regrow a kidney or liver, so I decided that it was not for us. That is what I was told about it, hope it helps 
Good luck!!
Good luck!!My son is 11 and has been doing the ibuprofen therapy for the last 5-6 years and does great. They monitor his levels yearly to make sure he is getting the right amount and that everything is working great. He has not had a tune-up in over three years. And I hope its several more. But everyone is different. Just weigh the pros and cons and do what you feel is in your child's best interest.
T
tarheel
Guest
I went to UNC as a kid- they did high dose Ibuprofen on most all of their kids. It worked amazingly well for me, no side effects or anything - though, one thing to note- for whatever reason it does not have an effect on adults (they think after about 17 it looses its effect for whatever odd reason)
Best of wishes.
Best of wishes.
S
sdelorenzo
Guest
My son was six when his pfts suddenly fell from 110 to 65%. His dr suspected aspergillus but my son had never cultured it. His pfts remained low for 18 months until a bronch finally showed aspergillus. Once he started aspergillus treatment, his pfts once again rose to above 100. His treatment includes IV steroids once, twice or three times a month as an afternoon outpatient. His dr is very concerned about oral steroids and hardly ever uses them for my son.
Sharon, mom of Sophie, 11 and Jack, 9 both with Cf, Grant, 3 and Paige, 1 both without Cf
Sharon, mom of Sophie, 11 and Jack, 9 both with Cf, Grant, 3 and Paige, 1 both without Cf
isabella Mendoza
New member
ibuprofen / steroids
Both of my sons were on very high doses of Ibuprofen for years (grade school and early middle school) until they both developed serious esophageal erosions due to the damage to their Gi tracts. One of them to this day has trouble swallowing (he is 24) and the other had multiple procedures to try to correct it. Be careful.
Both of my sons were on very high doses of Ibuprofen for years (grade school and early middle school) until they both developed serious esophageal erosions due to the damage to their Gi tracts. One of them to this day has trouble swallowing (he is 24) and the other had multiple procedures to try to correct it. Be careful.