The IPF Patient's Experience with Prednisone

[Merle Sweet]

My blurred vision is not permanent, at least not yet. Waking from sleep and being exposed to light are two things that will blur my vision, cause my eyes to burn, and cause tears. Many months ago I asked my eye doc about this problem and after examining my eyes he told me I had dry eyes so he advised me to use any one of a number of over the counter eye drops. I had told him about my use of prednisone, but he said he did not know anything about that medicine.   A few months later I returned to the eye doc to tell him my eye/vision issues were not resolved with the drops he recommended. He told me I needed to use drops more frequently throughout the day so he recommended Retaine. These eyedrops do not have preservatives and therefore can be used frequently throughout the day as opposed to the drops I used initially which were limited to twice a day. He also told me I had cataracts beginning to form and that could be part of the problem. I agreed to try Retaine until I see him again in August. Retaine does correct the issues of blurriness, burning, and tears, but only until it happens again which could be two hours later or ten hours later. Some days I use Retaine eyedrops only twice, other days four or five times.  So, maybe I do have dry eyes and the beginning of cataracts, but based on the literature prednisone is known to have vision side effects. I will share my eye experience with my pulmonologist when we meet in August and am hopeful he might be able to recommend a steroid medicine to replace the prednisone I am on that does not have vision side effects. It would be a real bonus if another steroid did not cause sleep issues as well. Wishing you all the best Sue.
Merle

[Robert B]

In 1973 i had a lung biopsy and was diagnosed with histiocytosis X. Then, later with IPF. Immediately, i was put on 60 mg. of Prednisone but quit after 2 months and gaining 45 pounds. Obviously, it helped to stop the degression in my lungs. On and off i had infections and bronchitis. Several years later, as i was having regular lung infections (up to 5 a year), i took lots of prednisone. I began having major problems in 1995. I began oxygen in 2002. I was still having lung infections several times a year and coughed most of the time. Early this year, a new pulmonologist didn’t believe i should have infections like that and have to take so many steroids. He put me on 10mg of Prednisone and an antibiotic 3 times a week. It is the first time in years that i wasn’t coughing all the time. I started walking and got up to 5 miles a day. I feel good but I’m still short of breath and I’m still on oxygen at 3 lt. I’m being evaluated for lung transplants. As I’ve heard a few others say, I’m not sure and don’t even know what to ask. My life is not as limited as it was a few years ago. That is one reason I’m wondering. I’m 68. Is it worth it to go through all that out entails. I’ll keep reading and may get some clarity. Thanks for this site.

[Mark Koziol]

Hello Robert, I can’t make the decision for you but I’m currently hiking in southern Ohio at Hocking Hills. Before my transplant I could not walk 20 feet while sucking in 6-8 lpm of o2. I haven’t had any complications so I have been blessed in that aspect and it appears my donor, whom I’m extremely grateful for was a perfect match. The Cleveland Clinic transplanted an 80 year old man who is doing well. Whatever decision you make will be the right one. Best wishes, mark.

[Robert B]

Mark, that is exactly the kind of story i wanted to hear while making a decision. My health has gone up and down, mostly down. It would really be great to know what normal feels like. Thanks for your note. Bobby

[Lee Bridges]

Hello All. I have experience with prednisone just this week. And it’s not good. I was diagnosed with PF in 2020 after taking Amiodarone for 9 months. I went from being able to bike for 2 hours to being out of breath walking to my car in the driveway. I am on 2L o2 while sleeping. Amiodarone will kill you and it didn’t even help  my AFIB. A cryo-ablation has fixed that. I am 65 and in reasonably good heath otherwise.

Anyway, on May 10, 2021 my pulmonologist put me on 60mg a day prednisone. This stuff is not good for me.  My face has swollen. I have gained 10 pounds that I don’t need. I can’t sleep. I am constantly tired. I feel like my mind in in  a fog. I can’t concentrate. and the list goes on. Monday this week, June 14 2021, I called my PCP and told her I needed off this stuff right now. I have an appointment with the pulmonologist June 22, 2021 but I didn’t want to wait to start getting off this. I knew from reading that you can’t just quit this med.

She gave me the following weaning schedule: reduce to 50mg daily/1 week, 40mg daily/1 week, 30mg daily/1 week, 20mg daily/1 week, 10mg daily/1 week, follow up.

I can’t wait to get this med out of me. Would I take it again, no way.

[Ben Robinson]

I have had the most success with Prednisone than any other drug.  It is just that the dosage was critical for me to get dialed in.  There was significant concern about Side Effects enough that my initial Pulmonologist would not prescribe it, allowing PF to chew up my right lung for 4 years.  After changing Pulmonologists, we dialed in at 7.5 mg per day, then Bursts of 40 mg per day for 5 days every three weeks, then a 20 mg taper for one day, then back to 7.5 mg.  The Bursts are most effective.  Prednisone affects everyone differently, but I found that for me it loses its effectiveness after a week or two anyway.  Like it has this initial jolt and then fizzles a bit. So these bursts are perfect for me and 40 mg dosage for a duration no longer than 5 days has no side effects.  Anything under 10 mg has no side effects.  The only side effect I have encountered is as described above, called mood swings and difficulty getting to sleep, but I don’t call them that. Its more like an alert lack of fear where you don’t tolerate people messing with you and stand up for yourself.  So I like it and during my bursts, I can get some computer work done without sleeping my life away tired from my disease.  That is my wonderful experience with prednisone.  :-).

[Robert B]

Prednisone, my first experience was in 1973 when I was diagnosed with hystiocytosis. I was put on 60mg. After one month and 25 lbs. I wouldn’t Continue to take it. 40 lbs. by the time I was weaned but looking back, it may have saved me from more damage.  In 2003 I started on oxygen and was diagnosed with IPF. I coughed a lot and had lots of lung infections using prednisone for recovery. In 2020, I moved and got a new pulmonologist who said 7 lung infections in a year were unnecessary. He put me on 10mg daily and arithromiacin 250 mg 3 times a week. I’ve been on that new regime for over a year. I don’t cough like I did and for a while I walked a lot until I got shingles and quit walking. I had not thought about it as a side effect but I don’t sleep well, ever. I’ll check with my doctor soon. I’ve been on oxygen for 18 years. I have multiple problems but I’m, relatively, healthy for all that is wrong with me. I am grateful to be on a small dose of prednisone. I hope I don’t see long term damage that I’m not aware of. I’ve recently been in conversation about lung transplants. I’m 69 years old and unsure if it would be worth it. I’ve enjoyed reading others issues. Thanks.
Bobby in Arkansas.

[Susan Howitt]

Morning

 

I actually would not be without Predisolone.  Started off at a 60 mg dose like you but for 2 weeks only, sleep was a problem on a high dose, then weaned down to my maintenance dose of 10 mgs, been on that for three years with absolutely no problems.  At first I could eat a scabby dog but now al OK, I am allowed by my doctor to go up if I get an infection and slowly wean down again, way out in the country, easier for them than having to come out to me.  Hopefully once you get slowly down to a lower dose you will appeciate its benefits and all your other symptoms will dissapear.

I am 74 years old and stage four.

Best of luck  Sue

[Marisa Beard]

I am currently on 20mg of prednisone. When I try to wean lower I have absolutely no energy. I am also on 2000 mg of mycophenolate (soon to be increased to 3000). I have had weight gain (which certainly doesn’t help me get evaluated for a transplant) and I have issues with sleeping. Hopefully, in the next few weeks, we will try to reduce my prednisone by 5 mg. I need to lose weight!

[Terry Moriarty]

I gained over 100 lbs when on prednisone. I was already obese. I’ve lost 125 lbs on a medically monitored very low calorie diet (VLCD). My BMI is now under 30. I could probably qualify for a transplant, if I wanted one.  VLCD is a tough commitment, but effective, if you can stick with it.