Hi everyone, first time on the forum and really hoping for some support or advice.
My fiance started showing her typical asthma flare ups she gets in mid September through October.
Typically, while not fun, these go away eventually with steroids and inhalers.
This year, things escalated much worse than ever before. Even after a week of ramped up treatment, we had an ER visit followed by another one 2 days later, where she was hospitalized for 4 days.
She has improved, but very slowly, and a week later now we are seeing more mild flare ups as we ween off of steroids. She is on 6 hour duonebs, xopenex as needed, prednisone, all her regular inhalers and allergy meds.
We want to start Xolair but know it won't really give us short term relief.
Our lives are fairly consumed at this point with worry and anxiety, which of course just makes things worse. We don't know if or when we will need to make another scary trip to the hospital, its a terrifying experience and we did it 2 times in 3 days.
Anyone with similar experiences able to share how they were able to get better? Sounds like we are going back up on steroids today. We know we need to be patient but this is really taking its toll on us mentally.
She was up to 60 mils of prednisone at the worst of it. We started noticing her heading in the wrong direction again once we weened it from 40 to 20. One of the hardest parts about this is family and friends not understanding how difficult this has been for us.
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nrou24
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You say that your girlfriend starts asthma in September normally, which means something with the environment, humidity or mold affects her. You and she can try grandmother's recipes; keep the doors closed, do not go anywhere without a mask, take off your clothes at the entrance of the house and directly to the washing machine, both of you should take a bath including hair every day. On the other hand, eating healthy is essential, not sweet, and little carbohydrates. She can drink warm beverages, like soups with ginger and turmeric and teas. Also, fruit smoothies that have pineapple. (Without ice)
She can keep your chest warm and if you can buy thyme cream just-brand to rub it in her chest will be wonderful. Another thing is not use nothing with odors in the house, odor-free cleaners, laundry soaps, personal items like shampoo etc.
Try to do things that you like in home the months that she feels vulnerable.
Those little things improve a lot her quality of life; don’t give up.
Of course, at the medical level they will have to continue with everything your doctor says.
Yes yes! I switched to all natural cleaners, soaps, shampoos, deodorant, detergent, etc. no open windows in house or car. I like the navage system. I also do have to take sudafed 120 mg every 12 hours to get through allergy seasons with sometimes Benadryl added at bedtime. I’m already on all the rx meds.
I could have written this myself five years ago. I can tell you my experience and hope it’s helpful. You would need to talk to her allergy and asthma specialist to get agreement on implementing any of the strategies made medical team and I use. It may not be right for her. Prednisone was the key to halting my yo yo attacks and after two years of off and on with subsequent better and bad I was no better off. I was scared of the next attack and mounting hospital bills. I did not wean well. It was rough! My doctor said he was doing me no favors and put me on a daily dose and I tapered 1mg a month. I still had bad episodes and the side effects (SE) were horrible. He sent me to National Jewish hospital in Colorado. It took months to get in but I’m so glad I did! They tested me and did consults morning to night everyday for 7 days. I was there a total of 11. Stayed at a suites place for a nice rate (discounted). They send you a packet of hotels with agreed discounts, car rentals, etc. they discovered I had not only severe asthma but a few other things that complicated it quite much, explaining my course of events and why I was so unstable.
My doc here gave me the same plan that they do in the ER as first line. I also picked up some tips from support group members and he gave the ok one them.
1. Rescue inhaler every 15-20 minutes.
I react immediately to any signs of asthma issues, mucus starts to build or short of breath, can’t get a “full breath”, rapid breathing rate, chest pressure in sternum or one side, coughing spell, heart rate up and feeling woozy. Those are my warning signs, you know yours. I first try my inhaler. I take two puffs and very 15 minutes. If after 45 minutes it’s not gone I do my nebulizer.
If that doesn’t cease the attack I will go to 2.
2. Neb. I do an albuterol or duoneb. If I’m in a good ole real deal attack I will do an albuterol neb then an ipratropium neb then a saline neb then start the rotation all over. These are back to back. I may take my inhaler (albuterol) randomly too. If after three hours I’m not better or my heart rate is over 120 at which point I hold the albuterol Til it’s down 110 or less, I will go seek treatment. I’m the beginning I’d have attacks that slapped me out of no where and within 5-10 minutes I was dialing 911 feeling like I was leaving earth. My cheeks and ears and hands were numb, I was lightheaded, disoriented, feeling faint and my breathing wayyyyy out of control. Don’t play with those, call 911. You have to know your body and never hesitate to call for help. Don’t drive and have her walk or have delays at the door, call for help.
3. If I’m in an attack more than an hour or more I will take some magnesium and NAC. I also take one of my anxiety pills to help my body and mind deal with the issue at hand. They are prescribed to be taken when needed. If I’m more than three hours in, I will take an extra 5 mg of prednisone at that time. This all would need to be ok’d by your doctor. My endocrinologist, psychiatrist and asthma doc agree on this plan.
4. If 3 hours go by and I’m still in steady attack I seek medical care. Usually though, the attack is stopping for longer periods of time and eventually stops. Lord, I’m so sore the next day, feels like someone took a bat to my ribs. Wiped out for days.
Family. Ugh. Friends, double ugh. I tried every diet, supplement and treatment I found reasonable, even acupuncture and Chinese medicine. None worked. Still, I had to listen to ppl tell me how I should take this or that or eliminate this and that. I had to remind myself they meant well. After I got ALL my diagnoses at NJH when folks looked those up they were like “oh, I’m so sorry” . After they would see me leave work on the stretcher they would stop daily to check on me. I would even have ppl come warn me if someone sprayed perfume in the bathroom or wore cologne in the elevator or sprayed Lysol at a work station. Well meaning. What WaS hard was skipping events and gatherings. I cannot be around fire. I can’t tolerate loads of people in perfume and cologne. I can’t be around strong Cleaners. I can’t ride with Windows down on the Highway film of cars or 4 lanes with frequent lights and stops. I have a big can’t do list and that’s PRE covid. Now it’s worse and I’m triple vaxed.
Explain and let it be. If they don’t understand you just have to do what’s right for you. She’s the one who will pay if she puts herself in danger, everyone else will be breathing just fine.
PREDNISONE. Aka the devil’s tic tacs.
The docs at NJH told me, as did my Duke pulmonologist and endocrinologist that while it keeps me breathing I need to do all I can to get OFF it. It’s the # 1 goal. When I was given shots and iv and 40-60mg doses I ended up in agony with joint pain, like ice picks in my hips, knees, oh my knees, ankles and elbows. I would only allow my pcp or urgent care to give me 40 my of a steroid shot vs 120 mg. If they wanted to up my pred I wouldn’t do 60, 50 or even 40. I would do 20 . I did do 20 twice a day for three days once but it hurt. So for three years I’ve bounced 20 to 3 mg. Roller coaster. Antibiotics galore with bronchitis flares too. Then the SE went beyond my altered body appearance. I ended up with visual issues and subconjunctival hemorrhages.
I had double cataract surgery. My right foot hurt, could hardly walk, it was plantars fasciitis. Then my other foot hurt, months later I sought help, it was a fifth met fracture. Wore a boot 6 months. Made me walk funny so then the other foot developed PF again plus Achilles tendinitis. I have osteopenia, high blood pressure, had an ER visit because of it. Couldn’t read one word ona piece of paper In Front of me, headache and dizzy. After a year they started a Med after an other crisis of 180/116. Guess what? A simple HCTZ 25 mg and my BP is fine and never another eye bleed. But wow, another Med! Ugh! My skin tears and bleeds under the akin really bad with any bump or brush with objects. I have GERd now. My blood sugars were spiking, especially overnight. I’d just feel horrible and we decided to check them, that was the culprit. I was not diabetic. Down on 7 mg now they are normal.
The mood swings were terrible, I was easily tearful and irritable then apologizing. Sleep eluded me until recently when my doc prescribed something.
Get Off the Pred! It causes more issues! Find an endocrinologist to slow taper you working with your lung docs.
I take budesonide nebs twice a day. It’s a direct lung steroid and really helped me get some better management. I also started duonebs am, lunch or mid day and at bedtime. I do saline nebs with any mucus issues, 7%.
I am on dupixent, fasenra (adding the second biologic is a trial thing my doc is doing with me he read about) singulair, Allegra, pred7mg (I go down one mg every 6 weeks since I’m under 10 mg. Over ten it was 1 mg every 4 weeks), vit d3, mucinex 1200 mg every 12 hrs, qvar, symbicort, incruse ellipta, azelastine 2xd, flonase 2xd, saline nasal rinse with navage twice a day, fosomax once a week, famotidine at hs, lansoprazole 2xd, calcium, Wellbutrin naltrexone combo, buspar, trazadone, HCTZ, colace/senna, flomax, black kohosh, ashwaganda, azithromycin 250mg 2xweek, multi vitamin.
I discovered By a cat scan last week after a pain and hematuria event I have kidney stones, a distended gallbladder and gallstones. I’ve since been told to hold the calcium and vit D. I have no idea if that from pred or other meds or just genetics. I eat meat maybe once every couple weeks. We eat an abundance of fresh veggies, beans/peas and some grains.
The number one thing I think made me stabilize was leaving work permanently. Even on FMLa last year and short term disability, I was in the roller coaster, infections and flares. When I gave my notice I was better in two month. Much better in 4 mo the and now at 16 months I’m at my most stable since it all began in 2016. Stress was a huge trigger and I didnt know it until I left.
Don’t get me wrong, it was long past due and I mourned and cried and started therapy and meds because I had real issues with being “dependent” on my hubby buts it was not bad like I anticipated and I’m happy now.
I can focus on my health, resting, exercising when I have the ability and doing things to help me feel in control and like I’m living (Art, little container garden and keeping the house organized, cooking healthy meals).
I hope this sheds light on how perilous the “quick fix” of pred can be. It has its place and for those of us like us, a necessary evil. We just need to have it minimalized as much as possible to reduce all the damage it causes. They can’t prescribe big tapers for us like they do “healthy” folks. It further cripples us to dependence. We need it as a temporary cane or crutch , not a wheelchair. I was advised this by top docs across the country! In only 3 years and on relatively low doses I’ve got terrible long term damage from it!
Please contact me if you two wish to talk more. You can find me online or via social media as terri gibson fine art. In NC.
Best of health to you both,
Gigi
Ps: sudafed 120mg twice a day is necessary for me to keep nasal passages from swelling and developing sinus infections which ends up in bronchitis.
Sudafed can be very drying to the lungs and make you feel very nervous and anxious. Be careful about too many drugs this one can cancel at another. I ended up with shingles after a hospital stay four and an atypical asthma attack brought on by the flu vaccine.I’ve been on prednisone over five years for autoimmune condition call polymyalgia rheumatica it is the only treatment. We have a Sperry slow tapering schedule that has gotten people off the prednisone. Regarding steroid inhalers: they take two weeks to take affect. That’s what it says in the literature. So it is not a substitute for systemic steroids. I found sleeping with a humidifier at night making sure it doesn’t get too humid and it’s a hot humidifier not a cold one so it doesn’t spread germs into the air. I’ve taken Benadryl at times but I feel too foggy in the morning. Everyone is so different on how they can manage this thing. I found following some BUTEYKO
Practices for asthma quite helpful: relaxed abdominal breathing, slowing the breathing down even when you feel out of breath actually helps, taping my mouth at night so that I only breeze through my nose, not sleeping on my back only on my sides were helpful suggestions. Anxiety makes it worse because that constricts the bronchioles. There are breathing exercises for asthma on YouTube that I felt very helpful. Retired nurse anesthetist here.
Like Gigi, this sounds a lot like my life used to be. But mine got even worse. I have the most severe form of asthma, but it also turns out that I have an incredibly rare disease called hypereosinophilic syndrome (HES), which made my asthma much worse, and much less responsive to even extreme treatment protocols. It took almost 30 years for them to diagnose the HES, and before they did there were constant attacks like you are describing, with eventual lung damage. (Rather than describe mine, I'll just suggest you check out my blog/website AsthmaOdyssey.com for more details). I'd rather focus on a few things for y'all to do starting today/tomorrow.
First, it makes a difference where you are. If you are in the US, do you live in a major city with major medical centers, a small town with individual physicians, or a rural area with one general practitioner and a hospital some distance away?
Second, do you have private insurance? Are you covered by Medicaid/Medicare in the US, or the National Health systems in almost every other country on earth?
I know these may sound irrelevant, but they really aren't. The truth is, if you live in the US, your access to care is largely dependent on where you live and your ability to pay through insurance (much of which has substantial limits) or cash. And all of that affects what practical advice we can offer. Telling you to get a consult at the Mayo Clinic or Johns Hopkins won't help much if they are out-of-network and out of reach financially.
So I'm going to assume you are middle of the road. You are engaged, so perhaps in your late 20s, with insurance through your employer. In a city.
The first thing she needs to do religiously -- every morning before getting out of bed and drinking anything or using her inhalers or nebs because they can affect the reading she gets, she needs to take her PEAK FLOW. Knowing her peak flows in the morning (I track them on a spreadsheet and graph them) can tell you immediately when she is going to have a problem. She should also take them during the day, before each neb treatment or inhaler when she's sick, and on a regular basis (waking up, evening when first home, bedtime maybe). All those readings she should take with her to her appointments with her pulmonologist. The doctor may tell her when to take them, but most definitely will use the readings to guide treatment decisions.
It also can help with anxiety (which is a normal side-effect, both of asthma -- after all, you can't breathe right , and of many of the medications used to treat it).
She should have a PULSE OXIMETER at home, and you should both know what the different readings mean -- again established by her physician. Regularly taking her O2 rates and tracking them will help both of you understand that they normally fluctuate, sometimes quite a bit, and help her learn how the numbers correspond to how she feels. That will make it easier for her to monitor her body when she's having a sudden, acute attack -- the more information she can give EMS or someone trying to help, the better. Same is true of a home BLOOD PRESSURE MONITOR. It can help determine how severe an allergic reaction is occurring (if she is at risk for anaphylaxis -- make sure you have TWO Epi-pens at home and two she always carries with her, and store/replace them regularly).
In the short term, she needs an asthma action plan (AAP). One should have been prepared with her allergist or pulmonologist.
It should specify what actions she should take when she is well (and her lung function is within her optimal range), when she is getting sick (perhaps with an infection or cold -- and the lung function is within what range - - the high end of the yellow zone set by the doctor), when it is turning into asthma and she needs to take interventions (start prednisone, nebs, see her doctor right away -- the bottom of the yellow or red zone on the peak flow meter-- when she needs to get to the ER).
Discuss with your physician what steps she may need to take to allergen-proof your homes/workplaces. Is there a chance that her job is somehow triggering her asthma? (If so, she may qualify for changes under the Americans with Disabilities Act or other assistance. If nothing else, she may know what changes she may need to make in her life.
You both need to allergen-proof your homes/workplaces. In her case, if her allergy triggers are truly seasonal, there could definitely be a factor at her workplace with air quality, mold, perfumes/cleaning chemicals etc. At home, everything from construction to cleaning products, laundry detergent, air freshener, soaps/lotions, plant/food/chemical allergies. Check out the Asthma and Allergy Foundation of America website (aafa.org) and the links there -- there are more products and services and advice available now than ever before.
A couple of warnings -- it turned out that the condo I rented for 9 years had toxic mold in the interior wall cavities between the studs. Relatively small amounts got into the air through the tiny gaps around electrical outlets and baseboards. Even though I kept things scrupulously clean, having the vents and entire air system cleaned professionally each year, used HEPA filters, dehumidifiers, etc., that constant small amount triggered dramatic worsening of my asthma, and ended up causing irreparable damage from all the prednisone I was on to try to control it. It was only discovered when a freak flood in another unit forced the walls to be ripped out to the studs. And by then it was too late for me.
Does she have a medical team? If not, she needs one. At a minimum she needs her internist, her allergist and her pulmonologist. She many need a consult or two with a hematologist, and other specialists depending on aspects of her problems. The team needs to work together -- with the two of you! -- to determine the best treatment plan for the longer term. They should coordinate treatment for any other medical conditions.
There's an entire section on my website where I talk about things I wish I'd known or done, or suggestions for dealing with chronic problems. Asthma is usually a life-long condition.
But let me give you a little hope. When I was born in the mid-'50s, babies with severe asthma almost always died -- there simply were no ways to effectively treat them. But I didn't. I barely made it through my childhood -- missing 2-3 days a week of school, every week! But I graduated. And went to college. And eventually to graduate school. There have been major changes in the past few years, because of the HES and the complications from the damage down by the high levels of steroids for so many years, etc.
BUT, I turned 65 in May. I'm on Fasenra and Xolair. The Xolair has had great improvement, but slowly. I've been on it 9 years. I will always have allergies, but I can't remember the last anaphylactic reaction I had, I can accidentally have a tiny bit of a food I'm allergic too without having to run to the ER, and I don't even have to take antihistamines on a daily basis anymore.
But my miracle drug is Fasenra. I am one very rare patient. With the first injection, my extremely high eos simply stopped being produced AT ALL, and my bone marrow hasn't produced another one of the cells since June 2018 with that first injection. I'm not cured -- there's no cure for HES, no cure for the damage it has caused, but I've gone from preparing for my death (literally) to doing some part-time work. I still have asthma attacks, but I can usually treat them at home in consultation with my doctors -- I've been well-trained over the years, have everything stocked here, and know exactly when I have to call EMS to get me to the ER.
And I live alone. If I can do it, you and your fiance can do it. She's younger, probably far healthier, definitely without the decades of damage I had. The key is to tackle this together and recognize that you have to manage asthma. And that means you have a lot to learn.
Last thing -- asthma (really any serious chronic illness) can be tough on relationships. It's hard to watch someone you love struggling to breathe and not be able to help. It's also hard to watch them watch you and you can't do anything to take the fear away. You have to learn to talk about it. There are support groups -- and there are psychologists to help, too. Ask about or try some of the groups on AAFA.org -- they can be helpful. But do it now, don't wait until later.
Be pragmatic. For example, understand that when she's having trouble breathing, spending air on talking or answering questions for anyone other than medical personnel (they need to hear as part of the diagnosis process) is extremely painful and frustrating.
You can reach me through here, or my website, or even aafa.org. Let me know if you need anything else.
And remember something else. Your fiancee is lucky to have you. A lot of men would be too frightened to do what you did -- write, admit that you are scared and need help. You'll be okay. Good luck!
I have had asthma since I was a child. My mother smoked even when I was in bed having a horrible attack. I moved into my own apartment away from home at age 18. My asthma subsided and eventually went away. Put it together. After 50 years of having no asthmas attacks, I have developed COPD and have difficulty just breathing. I have several different inhalers and bought an oxygen tank for the times I really need to breathe. I'm thinking that the asthmas has returned in a more deadly form as I aged. I can hardly breathe after walking doing my errands. Going uphill is really difficult. I find just staying home as much as possible helps to relax my lungs but it sure has made my life very dull. I use the inhaler twice each morning and if while walking it becomes difficult to breathe, I have an inhaler in my purse and stop to use it, but it's not the answer. Just to rest helps. I believe the asthma developed over the years into COPD which will only get worse according to doctors. So, just keep breathing and resting is the only answer I get.
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