severe asthma

[imported_Momto2]

Anyone else here have severe large airway chronic asthma? Its really kicking my butt right now to the point where I can barely take any inhaled meds since I am so hyperreactive. Any suggestions? IgE is normal, neutophils quite high. FEV 58%, but O2 hanging out between 92-95, drops to 88/89 during exertion, around 90/91 for sleep. Two years ago w/only mild asthma I ran a 10K with this same FEV. Now stairs wind me badly. Please help! Prednisone helps, but only a high dose and dont want to be on it for years. Docs are suggesting low dose methyltrexate. Any experience with this, anyone?

 

[welshwitch]

Yikes. No real advice, but I feel your pain. I HATE HATE HATE when my airways are reactive. I'm not officially diagnosed with asthma, but would definitely not be surprised if I had it. I've always had a high IgE. The wheezing, shortness of breath, and overall inflamed feeling drives me nuts. I can feel my skin itching and my eyes watering, too. Sometimes taking an anti-inflammatory helps me (Sudafed) -- usually before bed so I can get some sleep.

 

[jricci]

I don’t have any experience with Methotrexate, but I have had problems with severe inflammation. I'm guessing you are already on xopenex or albuterol and an inhaled steroid like advair or symbacort? At one point I tried qvar (steroid) in addition to advair. Beclomethosone is the nebulized version of this drug. I had an adverse reaction to it and it made my symptoms worse, but it is rare to have this problem (less than 1%) so it might be worth a try for you. If you do try it, I would go to the nebulized version as opposed to the inhaler ("puffer") I have found that the MDIs don't work as well on me, especially when inflammation is severe. The nebulized albuterol is much more effective than inhaler for me. Have you tried spireva? This helps with air trapping and did make a big difference for me with exercise tolerance. My IgE was never elevated, but if yours is, you may want to talk to your doctor about Xolair injections. I have heard people that have had great success with these. Also, are you on anything for reflux like prilosec or nexium? Even if you do not have reflux symptoms, there is something called silent reflux and this can be a major contributor to airway inflammation. If your doctor does decide to do a "trial" of a reflux med to see if it makes a difference, it can take up to 6 months for you to see a difference. I'm not sure why it takes so long, but this is what my GI doctor and CF doctor told me. I'm also on high dose Ibuprofen (1200mg twice a day). There was a study out a couple of years ago that had mixed results. It showed a greater improvement in children. However, my doctor contacted docs at Case Western who were involved with the study and decided to try it for me. Your ibuprofen levels have to be monitored. If your level is too low, it can actually cause a worsening of symptoms so you have to be careful. What mutations are you? One of mine is a residual function mutation. I’m pancreatic sufficient and have been off label Kalydeco for 2 weeks and my inflammation has been greatly reduced. I almost feel guilty for saying this. I feel so lucky to have this medicine and only hope that one day they will find something that is effective for everyone with CF. I wish you the best of luck.

One last thing, you may want to re-post question in the adult section, you may get more views and more responses.

 

[imported_Momto2]

Thanks Welchwitch for the empathy. Every little bit helps. jricci, what a great well-thought out response. Yup, already on nebbie albuterol, used to help a lot, now, not so much. Currently on advair, one of the few things I do not hyper-react to. Tried Beclomethosone, didnt really work. Tried spireva, didnt work well. My IgE is not elevated at all, so I dont think Xolair would help. Have been treated for reflux for over 20 years, seems to be well under control. Tried the high dose ibuprofin, didnt seem to make any difference. I'm a ddf508, completely PI, but dont take enzymes, have no GI issues now though tons as a child/teen. Go figure. My neutrophils are pretty high, so they're thinking that if they kick my immune system down a bit with the low dose chemo meds, my lungs might have a chance to chill. Anyhow, thanks so much you guys. Just getting some support is really helpful. (FART2)

 

[imported_Momto2]

Update- The methyltrexate seems to be helping. I think we've pinpointed the inflammation cause....looks like I've developed CFRD. Once we get it under control, hopefully the asthma will improve.