Tapering prednisone for hypersensitivity pneumonitis

Posted by artistjo @artistjo, Mar 6 3:52pm

Hello everyone, I’m so glad to have found Mayo Clinic Connect.

Six months ago, I was diagnosed with hypersensitivity pneumonitis and scarring in the lower lobes of my lungs. We don’t know what toxin caused the pneumonitis. There seems to be an autoimmune component to my lung disease, but my autoimmune disease tests all came back negative.

I’m in the fourth week of a five-week course of prednisone now. I started at 50 mg/day for a week and I’m to lower the dose by 10 mg/day each week. I’m at 20 mg/day this week, and on Monday I was in the emergency room with severe shortness of breath and extreme fatigue from prednisone withdrawal. The emergency room doctor determined that I needed a slower tapering schedule.

Since my diagnosis, I’ve been on three courses of prednisone, and I’ve repeatedly wound up in the emergency room or urgent care with severe withdrawal symptoms, mainly severe shortness of breath and fatigue.

My pulmonologist and his department always direct me to Primary Care or the emergency room when I have acute problems such as a respiratory infection or prednisone withdrawal problems. My pulmonologist’s focus is on refining my diagnosis and monitoring the progress of the disease.

As a result, a number of different primary care and urgent/emergency care doctors have treated me for my respiratory infections and prescribed/adjusted my prednisone doses/tapering. A prednisone tapering schedule that avoids severe withdrawal symptoms hasn’t been figured out for me.

I’d like not to be winding up in urgent care or the ER so often if I can avoid it. I’d like to do my part in arranging more consistent care for myself.

I’m sure I’m not the only person facing challenges like this, and I know there must be a solution. If any of you have dealt with problems in prednisone tapering or in finding your go-to person for acute pulmonary care, I’d appreciate any experience or guidance you’d like to share.

Many thanks,
@artistjo

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covidstinks2023 | @covidstinks2023 | Mar 6 9:20pm

Hey There, Some people simply do not do well with prednisone. There is another steroid taper called Medrol that works better for some people. If possible, I would change to another Pulmonary Doctor and get another opinion.

Did you have COVID by chance? Do you have asthma? Also, I wonder if a nebulizer with a steroid in it would help? God Bless you and praying.

connibar | @connibar | Mar 7 8:17am

@artisjo, I would have them keep digging into other autoimmune diseases, many are rare. My Pulmonologist could not find any and it wasn't until my husband wisely took me to the Mayo Hospital ER, where they were able to correctly diagnose me! I too, had trouble as my original pulmonologist kept weaning me off prednisone too quickly. My lungs needed it to breathe. I ended up in the ER with oxygen at 80 when he took me off it entirely. Get a 2nd opinion, if you can...

pb50 | @pb50 | Mar 7 9:19am

When I was on 20 mg of Prednisone recently, my rheumatologist tapered me down in 5 mg steps to a stop point over 16 days.

vic83 | @vic83 | Mar 7 9:47am

I had moderate case of radiation-induced pneumonitis and was put on Prednisone by my Mayo Pulmonologist. I started at 40mg for 2 weeks, then 30mg for 2 weeks, then 20mg for 2 weeks and finally 10mg for 2 weeks. I had no problem coming off fortunately. I also was given antibiotic Bactrim while at 20mg and above of Prednisone.
I agree with others that you check with other specialists. Autoimmune diseases also cause lung issues.

pb50 | @pb50 | Mar 7 11:18am

Also - consider a rheumatologist consultation. Contrary to public opinion, not all patients with autoimmune diseases have textbook blood results - I didnt for several years after my diagnosis of Rheumatoid Arthritis. At one point I moved and a new doc tested me and my RA Factor was now positive. But I had been treated successfully for five years at that point.

All that said to suggest you may need to self direct your diagnosis. Personally, I’d tell my pulmonologist I would like a referral to a rheumatologist to explore further whether there are autoimmune components to this, test results notwithstanding … that you aren’t ready to just accept the conditions without a better understanding.