Linda Gid posted:

Debbie, have you started on Fasenra?  I have eased symptons on Prednisone, actualy the best when on IV steroids,Solumedrol.  Unfortunately both the side effects and the fact that we can't live on these causes me to struggle.  I have been on many (nearly all I think) types of new things that come out over the years.  My pulmonary Dr is my primary.  I would say I am not controlled at this point as I may have a few good weeks, then something triggers it and I am in terrible shape for months at min (only staying out patient due to the IV steroids and to a lesser degree oral).  I did Xolair when it first came out, stayed on a few years; eventually the every 2 week injections, cost and not being sure of it helping I stopped.  Was back on Xolair again the last 3-4 years, but as of two months ago I am trying Fasenra.  We'll see I guess

Hi, Linda-

I’ve had my first Fasenra injection in June and am hopeful, even more so since I’ve now also been diagnosed with eosinophilic emphysema (mild/moderate, so far, but showed up fairly quickly on my latest CT - the Fasenra may stop the eos from causing further damage).  I assume you have eosinophilia and your doctor’s determined that is your primary cause for your asthma?  I have Hyper Eosinophilic Syndrome (atypical) and the eosinophilic asthma is relatively recent for me. 

I have such serious allergies, and they were the primary triggers for my asthma for 60 years that Xolair has been a life-saver, but it didn’t happen quickly. There were small improvements, steady ones, but the overall improvement has been cumulative.  It became really noticable about two years in (6 years total now). I understand what a commitment the biweekly injections can be - and frankly, I initially qualified under their compassionate use because I had been dropped by my insurance carrier. Once I qualified for Medicaid (and now Medicare with Medicaid), it was covered.  But the expense is horrific  

 Xolair and Fasenra work on totally different underlying problems - Xolair on IgE, and Fasenra on IL5 and eos. So I am on both - and hopefully they will also make other preventive meds more effective for me. 

One thing that concerns me in your letter (and I’m definitely not a physician) is what you say about all the corticosteroids you are on and repeatedly. That is what happened to me - and it destroyed my body in ways that none of us were really prepared for. What I’ve learned the hard way is that if you are having to go back onto steroids (oral or IV), it should be setting off emergency warning lights. Our bodies are unable to eliminate steroids, so each new bout is making the ultimate damage worse, but also may have set your body up to almost become addicted to them (in my case, tapering doses frequently sets up a relapse, requiring more steroids, then taper, then relapse...).

I’m just trying to warn you about possibly needing to get much further into possible triggers (I had to change where and how I live, had to stop working - managing all this is a full-time job, and basically upended my life in every conceivable way). If I had known more about toxic mold and its ability to hide in walls without ever triggering normal awareness (by hiring a good environmental engineer, for example), or getting opinions about my case and even apparently unrelated medical conditions from other specialists/major med center, I might have saved not only my career and much of my lifestyle, but literally my life. But I stayed too long with one physician without getting new perspectives. 

Linda, I sincerely hope the Fasenra helps you, and you find other solutions, but please consider getting some work-up and consultations elsewhere.  I’m not saying you need to switch doctors, but we all can end up missing things due to over-familiarity or just lack of knowledge.

The single greatest mistake I made was not standing up and advocating loudly enough for myself.  I KNEW there was something wrong (some THINGS), but for a lot of subtle reasons (and more than a little fear of what I’d learn), I didn't until it was too late.  Please learn from my mistakes - research, ask questions, don’t back down. If a doctor brushes you or your questions off, thank him/her politely, gather your records and notes from them and go to the next one on the list. (A great way to find good doctors is to ask other physicians and nurses who they woukd go to, and major med schools can be great resources.)

And please, let me know how you do. Perhaps there’s a way for us to exchange personal email addresses.  I’ll be thinking of you.

Debbie, have you started on Fasenra?  I have eased symptons on Prednisone, actualy the best when on IV steroids,Solumedrol.  Unfortunately both the side effects and the fact that we can't live on these causes me to struggle.  I have been on many (nearly all I think) types of new things that come out over the years.  My pulmonary Dr is my primary.  I would say I am not controlled at this point as I may have a few good weeks, then something triggers it and I am in terrible shape for months at min (only staying out patient due to the IV steroids and to a lesser degree oral).  I did Xolair when it first came out, stayed on a few years; eventually the every 2 week injections, cost and not being sure of it helping I stopped.  Was back on Xolair again the last 3-4 years, but as of two months ago I am trying Fasenra.  We'll see I guess

When I had my last asthma attack after the breathing treatment I was also given 60 mg of prednisone in the ER and was sent home with a script for 40 mg a day for 6 days. 2 weeks later I was given another round of 40 mg a day for 5 days.

Corticosteroids have saved my life numerous times, but the cost - that’s been much higher than I ever imagined. It was learning how cavalierly some physicians dispense them, without ever properly educating patients/families about side effects - even at times lying about the severity of them - that shocked me the most, and made me determined to do what I can to educate everyone. And to see new and effective treatment protocols and drugs finally made available. Given the number of people with asthma, and the increasing numbers with severe, uncontrolled asthma, that is unconscionable. 

Hugs, Debbie ... those are some good points about people with severe asthma. I know many of our members have had to be on much higher doses for long periods of time. It is a hard struggle.

I believe this is a critical, and often overlooked, aspect of treatment and applaud your efforts. However, I think there’s a major flaw in your survey -  it asks only about short courses of oral corticosteroids, and not higher dosages. For asthma patients like me, with severe, hard-to-impossible to control asthma, short courses haven’t been effective in 25 years.

In addition, I now have some of the worst possible long-term side effects of steroid use because of having been prescribed an average of 60 mgs per day for 18 months by my former pulmonologist. The result has been devastating - it’s destroyed my body, made further asthma harder to treat, and ultimately disabled me completely. It triggered diabetes (also difficult to control as a result), early menopause (8-10 years early), chronic and severe steroid myopathy, and numerous other problems.   While my situation is rare, there are more patients who are in danger of joining me - in part because so many physicians are ignorant of the problems and symptoms of overdosage as are patients, and there are virtually NO NEW MECHANISMS TO TREAT ACUTE ATTACKS!  Prevent - yes, treat - no — not in almost 70 years. These problems are also exacerbated by the failures in our health financing system, where far too many patients cannot afford the care necessary to prevent or intercede early in treatment  

Luckily my current medical team is trying their best to help me - and new drugs like Xolair and Fasenra hold promise. But neither helps when I have an attack. 

Perhaps you can consider follow-up surveys to drill down on dosage levels, type of physician/problems with education and awareness, etc. 

Thanks for making this start!