Steroid dependent- 30 mg for 6 mo. When we lower, asthma symptoms return, missing work today

[Shadowcat04]

Hello Asthma Friends,

I have been on some amount of prednisone from 10 mg to 30 mg over the last year. But, since the wildfires here in Oregon in August, I’ve been on 30 mg. daily. I’ve had two exacerbations (which I was turned away from the ED for because I didn’t present with wheezing or low oxygen levels- I just couldn’t breathe). My pulmonologist is having me do one day a week of 25 mg prednisone and the 1-3 days after my asthma symptoms come back. I also take all the high dose inhalers- dulera, spiriva respimat, montelukast and a biologic- Dupixent. Now I’m 3 days after the 25 mg and woke at 3 am with severe asthma cough- took albuterol and about an hour to be able to lay back down and sleep again. Worn out and don’t feel well today. Asthma cough continues. Extreme fatigue. Are others on constant steroids? Severe asthma that doesn’t present normally? We are trying to get bronchial thermoplasty approved- but insurance is a big, fat no, so far. Any ideas or similar experiences would be appreciated!! Thanks

[DollyDutchGirl]

Hello Shadiwcat04. I believe that the USA’s Dulera is similar to the UK’s Fostair (which is available in two strengths, 100/6 or 200/6). As a severe asthmatic here in the U.K, like you, I am on a host of medications including, Fostair 200/6, Spiriva, Ventolin, Montelukast, Carbocisteine, Omeprazole and Mometasone Furoate. In an attempt to reduce the need for constant prednisone, my consultant has me taking an unlicensed programme of Fostair 2 x puffs am & pm, immediately preceded by 2 x puffs of Ventolin, also followed by the Spiriva am and Montelukast in the evening.....PLUS, up to FOUR additional puffs each of Ventolin and Fostair throughout the day as needed. The consultant’s theory is that regular intake of the inhaled steroids go straight to the lungs, building up to do the job consistently. However, oral steroids have to travel through every organ of the body before they get to the lungs - where they are needed - so, are effectively less efficient. I’ve been on this regime since September 2020 - and have only needed one x two week course of 30mg oral steroids since then...whereas before, oral steroids were a daily thing. Using the Inhaled steroids this way is know as MART (maintainable and reliever therapy). Maybe is a possible suggestion for your pulmonologist to consider...??

[Shadowcat04 in reply to DollyDutchGirl]

Thank you DDG,

That is where I was at before a couple of hospitalizations and then it took me FOREVER to recover after those hospitalizations (March 2019) and (Nov. 2019). So, yes, your MART idea is definitely where I’d like to be. I take omeprazole, like you, too. It’s all so very hard when you wake up struggling to breathe and coughing and needing rescue inhalers. My pulmo is just focused on lowering the prednisone. Meanwhile, I’m still struggling and suffering. It’s. hard. I appreciate your ideas and support. Thank you.

[kdr112 in reply to Shadowcat04]

Shadowcat, I have severe and persistent eosinophilic asthma. I assume your eosinophils have been checked and are elevated? I take Nucala once a month. I am on Incruse, Dulera, and Singulair. I was having asthma attacks every 4-6 weeks. I knew I had to do something different in order to have any quality of life. I went to Mayo Clinic in Rochester, MN. I had a CT of my sinuses and they were completely blocked. They did sinus surgery there and for the past two years I have only had 4 asthma attacks. My sinuses were constantly irritating my asthma. I have a relatively normal life now! I referred myself to Mayo after researching myself. If you have any sinus issues please have that checked!

[Christ0706]

Hi I hope you are well, I was steroid dependent for over 1 and a 1/2 years, I was on 8 tablets a day 40mg, my consultant had discussed with me to be slowly come off them, I had some complications as my severe asthma had started to come back, my consultant from Heartlands hospital in Birmingham Uk decided I had to be admitted to hospital to get off them as it is very dangerous just to come off them, I got worse while coming off them but eventually I got through it, but since coming off them I got worse and had lots of hospital admissions including going in to critical care and incubation, I’m on a lot of medication, after coming out of critical care my consultant decided to put me on biological treatment Mepolizumab, I had my first injection on the 12th February and got to have it every 4 weeks, it has knocked me about with some of the side effects but I know I need to try something different so I don’t put my family through what I did when I nearly died in critical care, At the moment I have not felt the benefit yet as I’m still the same as I was, I just hope it brings my eosinophilic levels right, I hope and pray you get the treatment to help you, we are lucky in the UK to get free medical care, I feel sorry for you as the health insurance must cost a fortune, good luck for the future

[Shadowcat04 in reply to Christ0706]

Hello Christ0706,

It was nice to hear your story. It is very similar to mine. Coming off the prednisone is not working very well. I am now doing two days a week of 25 mg and the other days 30 mg. The lowering makes my asthma flare and I have to use more albuterol puffs and neb treatments. My docs have me on the highest inhalers already and I take a biolgic- Dupixent. I don’t know that it works, but maybe it helps. Being in a constant state of asthma problems is not real fun for the family. My husband isn’t talking to me currently because I was snippy with him. It’s hard to feel bad constantly and stay pleasant. Not to mention, we all work at him to stay safe from COVID. Fun. Anyway, life is not easy for anyone, I suppose. We are still hoping for a bronchial thermoplasty procedure that my insurance said, “no” to in round one. Onto round two. Thanks for your story and point of view and listening.

[Christ0706 in reply to Shadowcat04]

No problems, hope you and the family keep safe

[HannahBenson]

Hi Shadowcat...I'm also on Nucala and I also went to the Mayo Clinic. It was the best thing I ever did as I could not reduce my Prednisone and keep breathing normal. My eosinophils would rise and as soon as they did...I would be gasping for air and back of Prednisone. I have been on Nucala for almost a year and a half..was able to taper off Prednisone (took about 2 months) and have not had to take Prednisone since then. I have reduced my steroid inhaler to 1 puff a day which is very little. My breathing is good and I only wish I had been told about Nucala before and did not have to suffer those two years on and off Prednisone. Good luck

[Shadowcat04]

Hello HannahB,

I’m glad that Nucala is working for you. I am not sure the Dupixent works, but it’s the only thing that seems available to me. I’ve had to start back to work (as a teacher at school). After 3 weeks, I am having another flare. I’m not sure if it’s the kids, the building or the extreme physical labor of having to set up and change my classroom. My doctor barely gave me any help- nebs 3-4 times a day, cough syrup with codeine (4 doses only) to help with nighttime cough and day if needed and rest. Check in on Monday and Tuesday. After I neb and if I’m not moving I’m okay. When I get up and move around, I feel out of breath and start coughing. Not good for getting back to work. Remote learning was much better for me. I am now in a terrible position. Struggle through working or stay home and miss work that will be difficult to hand off, since tomorrow is the first day of the program I set up. Argh!This is awful.