Chronic Steroid Dependant Allergic ASTHMA - Help

[Wills_Mum]

Hi - My name is Lucy and I am the mother of a beautiful 13 year old boy who has suffered chronic asthma since he was about 9 and life long issues with his skin and anaphylactic allergies - they all go together, dont they?, His life is extremely impacted by daily symptoms and we are reaching out to see if anyone has any ideas about what we could try or if there is another parent out there struggling like we are. He has been on daily prednisolone for 3 years (maintenance dose 15 but usually 25 - 30mg or high dose IV), his lung function is around 65 - 70%, we have tried Xolair (no success),  and also every type of preventer (singular, symbicort, ), buteyko breathing, chinese medicine, acupuncture, meditation,  change in environment etc etc. He is currently on an immune suppressant (cyclosporine) on top of his steroids and usual asthma meds. His IgE is about 7,000 (for those of you in the know with that you would know that is very very high). He gets to school maybe 2 or 3 days a week but has weeks where he is unable to do anything. His health is very unpredictable - well one day and hospitalised the next. We have a great team of doctors but I have never met another family dealing with such a chronically asthmatic teen (although we meet lots of inspiring families on hospital stays dealing with major major situations). He is the most amazing boy - in spite of his daily struggles and is much much loved. Does anyone have any ideas we could try or, if you are in the same situation i send you a virtual hug - you are not alone.

[Tinman4jesus]

Yes I too have had asthma and allergies since 3rd grade. 39 now. Be encouraged, he will likely have some good seasons of life ahead. The better I eat and more I exercise, the better my health. I also recommend taking Vit C, Magnesium Glycinate (better absorption) at bed and a multivitamin.

I most recent events have surrounded being exposed to mold in a new home 7 years ago. Since then I have been on and off prednisone like your son. It's a very hard place to be. It makes you feel crappy irritable and depressed. Taking steroids has caused weight gain, low testosterone, low vit D, and now early osteoporosis.

Xolair did nothing for me either!  Allergy injections helped for some of my years but not recently. Be sure to stay on top of allergy testing, as allergies can change every few years. It's recommended to be re-tested every 5 years. Develop a plan to avoid or minimize exposure the best you can.

Be on the look out for an anti-IL5 injection (I think it is called) expect to be approved this fall for allergic asthmatics.

I wish you the best!  

[Theresa3085]

Yes allergies and asthma go hand in hand. I was born with asthma and have dealt with it for 30 yrs now. I refuse to take any type of steroid and I avoid doing things that will send me into a full blown asthma attack. Does he have a rescue inhaler or does he use a nebulizer with albuterol sulfate? Maybe use that in conjunction with breo ellipta and find out about the albuterol or singular pill they might help with his breathing.

[ill13632]

you should go to a university specialist in asthma and allergy.  I have bad asthma also and can't exhale with resistance- my friend seems to think that it was antibiotics which destroyed my immune system?  I have a FEV1 of 69%

[Tammy2009]

Wow, I'm sorry I do not have much to say that might help - way out of my knowledge level. With the igE so high there is defintely something way out of whack with his immune system.  That particular antibody can be related to parasite infection - have they ever tested for parasitic infections?

Other than that I'm at a lost .... Find the best allergist possible and keep working at it!  Good luck and I admire you and your son for being able to handle all of that.