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How does taking Prednisone help IPF patients
As I read thru IPF articles I find many patients are prescribed Prednisone by their pulmonologist. What are the benefits of taking Prednisone?
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62 Replies
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Hello Dave, a majority of the patients who are prescribed prednisone are PF patients. They are prone to have more inflammation and the prednisone is prescribed for that reason. Take care, Mark.
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Dave,
I had shared this before. I was prescribed Prednisone in 2019 for what was diagnosed as inflammation of my lungs at a 20 mg dose. I was on it for a year and I experienced 13 vertebrae collapsing. When I asked my pulmonary doctor if I was improving lung wise, he said “I dont know what you have.”
I switched pulmonary doctors and my new doctor immediately said I have IPF. But the damage was done to my spine and the loss of 5 1/2″ of height and my ribcage resting on top of my hips has rendered me pretty much home bound.I cannot recommend Prednisone. I believe I should only have been on a lower dose for a shorter time. Now I’m getting a Prolia shot every six months to rebuild my bone strength.
Make sure your doctor knows what you ought to be taking.Jim
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Soon after my original diagnosis of ipf a pulmonologist at National Jewish warned me not to stay on prednisone for “long periods”. I have found that 2 10 tablet 20mg courses annually (not consecutively) when traveling has been OK. Prednisone is definitely a “feel-good” pill for me so I’m careful.
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What is the typical dosage of Prednisone for PF patients? I have been prescribed both tapered prescriptions for flareups that last from 10-20 days as well as a daily dosage of 10 mg of Prednisone that went on for several months. The 10 mg. dosage seems to reduce my coughing and allows me to exercise more I would appreciate any feedback about what dosages of Prednisone have worked for others. I say this knowing that Prednisone has significant side effects.
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I have IPF two weeks ago my Dr prescribed 2 20mg prednisone/day for 7 days. I believe the steroid burst help my daily activities Dr says it can be repeated when necessary. The steroid did increase my morning BG number but they returned to normal as soon as I stopped taking them.
dave
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I just started on Prednisone . This was my second morning. 40 mg the first week. Down to 30 mg the second week. I have ILD grey matter on my lungs. Not permanent scarring which is good. Terrible coughing attacks in the morning. And after eating. Dry heaves. Just awful. I believe the predisone is helping. I read that you can get fat face. Gain weight. And get short fused. Looking forward to getting answers. Thanks
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I have had IPF for 4 years at first I had no quality of life. After talking to my Dr. He put me on Prednisone been on it for about two years at 10mg what a difference I know there are side effects but to me the benefits out way the side effects. I also know that there is no cure at this time. Just take a day at a time. You will have good days and some not so good. Just keep a positive attitude.. Prednisone has certainly helped me.
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Hi Mark I had this medication 20years ago. Started on 40mg,reduced to 20mg and was on that for five years. Took 2years to come off completely. I had put on 56lb in that time but I managed to lose it in about a year. Side effects for me were apart from the weight- a hump on the back of my neck,greasy skin , and facial hair. I was also hyperactive, couldn’t rest, I used to get up at night and do housework. I also developed osteoporosis. My lungs are worse now and I am back on the meds and oxygen. Just taking it all one day at a time.
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Since I wrote that last piece I have stayed on Prednisone at 20 mg per day. No side effects . Can breath normal. My oximeter reads 94 and above. No more major couphing or dry heaves or phlegm.
Need to get another lung function test and CT scan to see if the grey matter I have had gone down. All I know is predisone is a wonder drug for me!
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Hi Mark,
I had started on a 40mg tapering dose. At the 40mg and 30mg dose, I had no dry, tacky cough, no post nasal drip, and no phlegm in my throat, it was wonderful. At 20mg my cough returned, although not bad and only a few times a day. Now that I am on 10mg (will be there for at least a year, unless I have an exacerbation), the post nasal drip, the cough, and the phlegm has returned but still not as bad as before the pred, but very annoying. I think we all have a different reaction to a tapering dose. I do not feel as ravenous as when I was on the 40mg dose. But I still worry about long term effects, esp. osteoporosis.
And yes, prednisone is a wonder drug, but with this comes the dark side of it also.
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What are the side effects of taking predinisone at 10 mg daily? Does it effect your appetite?
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Great to hear that. I am hoping that predisone will be a wonder drug for me. My coughing attacks dry heaves and phlegm is just awful when I get up and after eating. Best regards
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Yes. Prednisone definitely increases my appetite regardless of the dosage and yes, I usually gain weight when I am on it. I can not say what the specific side effects are at 10 mg. So far none for me.
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Hi Arthur,
Good question, though I’m afraid I’m not qualified to answer. Hopefully a few folks chime in and share their personal experiences with what doses they’ve been prescribed Prednisone. I do know that it is common for doctors to prescribe a dose based on an acute exacerbation/flare up (if they see Predisone suitable) then to have patients taper down once things settle. I’m not sure if this is helpful, I’m glad others are chiming in.
Char. -
@tayla
Hi Pat,
I can only speak to my experience, but unfortunately yes, Prednisone at 10mg increases my appetite and I also notice a bit of a “moon face” or “steroid cheeks”, which I don’t like. My usual dose is lower, but occasionally I am on 10+ mg when I have a flare up. Hopefully your experience with it isn’t too bad.
Char. -
I am on 10mgs of Prednisone for permanently, upped to 40/60 when having a flare up, without it live is unbearable with the coughing. I have not had one side effect bar the fact that I could eat a scabby dog, so self control is important there. Sorry you have the moon face effect, so far I haven’t and have been on Prednisone for 2 years.
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But did your coughing stop? Did your breathing get better? I will take a moon face over my coughing attacks dry heaves and phlegm. Best regards Mark
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Mark – Is you cough a productive cough? You mention phlegm so I assume it is. Is a portion of the phlegm coughed up in the morning thick/viscous and colored?
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Thank you for sharing Susan. It’s so nice to hear you don’t have any unpleasant side effects (aside from appetite increase) from Prednisone, even the increased dose for flare ups. That is great news 🙂
Char. -
I take 20mg a day of Prednisone. Taking them as made a big difference to my breathing. I was really struggling before but not quite so bad at the moment.
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Hello All! I have been on prednisone for a year. I started at 60 mg per day to reduce the extreme inflammation in my lungs that originally caused my PF. The high dose was immediately effective for being able to breathe better. I had all sorts of side effects – grew a goatee, beard, long hairs in strange places on my body, chipmunk cheeks, 20 lb weight gain in one month, random hard fatty spots in various places and hot flashes like during menopause! But overall, it was so worth it to be able to breathe much better. Over the past year, I have tapered off to 10 mg/day now. I haven’t lost the weight, but some of the facial hair is reduced. As I came off the high doses, I also started losing hair on my head in big amounts.
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Hello all,
Since 2012 I started taking prednisone 15mg per day together with other medication. The dosages were increased during flare ups and then decreased again. The moon face start appearing about 2015, and pro diabetes started too. I didn’t payed much attention to pro diabetes and I continued my lifestyle. Minimal exercise, eat everything, work from home. To cut the story short about June 2016 I was diagnosed with diabetes T2. Now on insulin and pills and only this year I managed to control the diabetes with the drugs and healthy diet. So ladies and gents diabetes T2 comes from prednisone as a very nasty side effect. Please make a favor to yourselves and check for pro diabetes and if you have it please eat healthy go on a diabetic diet. It is a very difficult situation to have PF and diabetes!
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I have found prednisone to reduce coughing and the mucus from my nose, but only if I take at least 20 mg a day. I have advanced IPF which may account for the increased dosage needed to help me. 10 mg daily did me no good.
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Hi Jerry,
I am on a tapering dose of prednisone. When I was on 40mg, I had no dry, tacky cough, no post-nasal drip and no thick mucous in my throat. Everything was still fine when I dropped to 30mg. But when I dropped to 20mg, I started coughing again, but nowhere near as bad as it used to be, but I still coughed. My post-nasal drip came back and the phlegm in my throat, not as with the cough, it wasn’t nearly as bad as pre pred.
Marilyn
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My pulmonologist has refused to increase the Prednisone, but I must admit on a bad day I do take 20mgs instead of the 10. Coughing reduced and not blowing my nose nearly so much, this effect seems to last for several days, I have advanced lung diseases and on 6lts O2 by day and 2 1/2 lts at night.
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Immediately upon diagnosis of PF from an as-yet-unidentified autoimmune disease in April, 2013 I was put on 50mg/day. I read the information sheet and when I saw that weight gain is a typical side-effect, I decided to pay strict attention to what I ate. “Mindful” eating really helped me. If I was out for a meal I would eat half of what was on the plate, and took the rest home to eat the next day. At home I put a serving of food on a plate and that’s all I ate, despite the fact that for the first two or three years of being on Prednisone I felt hungry ALL the time. I might have gained 5 pounds, but that was good since I’d lost 15 pounds prior to being diagnosed (went from 130 to 115 lb) because I was so sick I couldn’t eat. I also got hair on my face and on the back of my hands. Although I finally got off Prednisone in June, 2017 to this day I still can’t sleep without a sleeping pill, although I’m down to half or a quarter of Zopiclone per night. At one point I had to take 1 1/2 pills to get any sleep. On two occasions I didn’t have any Zopiclone so was awake for 42 hours straight one time, and 36 hours the other. It’s a challenging drug but in my case, a life-saver. There were many more side effects including become very hyper and “wired”; thinning hair; heartburn; unsteadiness on my feet; ringing in the ears; loss of sense of taste or metallic taste in my mouth; lack of impulse control; and others.
I also had Retuximab by infusion a couple of months after diagnosis and it, along with the Prednisone, seemed to really work. Very best wishes to everyone on this journey!
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Long term use of Prednisone even at low doses (eg, 5 mg) can result in drug to drug interactions, bone density weakening, diabetes, skin cancer, and impact to blood pressure meds, among other side effects. It can mask serious organ problems such as a malfunctioning appendix, sometimes until it is too late. At the end of the day, it’s a matter of weighing the risks against the benefits. The lower the dosage, the lower the risks. I have been on a 5-10 mg dose for the past 10 years and know first hand the side effects I have to manage, but it has been worth it to me to live a very productive life post-transplant at 78 yrs driving fast sports cars and spending winters on the beach in Florida. So, do not let these risks scare you but be sure to understand what they are and learn to monitor and manage them very carefully.
Les
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Hello Pat, after 9 months of mystery, I was diagnosed with the autoimmune disease Sjorgrens Syndrome. It rarely attacks an organ and in my case, it attacked the lungs, leaving me with PF. Have they figured out what your autoimmune disease is yet?
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Good afternoon everyone. I had a appointment with my lung doc this morning and so far so good. I have been on prednisone for about 5 months off and on. I got this doc after my other retired and it took awhile to get another doc. This was the first drug he prescribed because I was coughing like crazy. He put me a sliding scale to start, to get the coughing under control. When it was controlled, he took me off. This didn’t last long and I started coughing again. So went on a steady 10 for awhile. Then while he was vacation, had an attack of coughing that wouldn’t stop. So, my family doc put me on 20mg for a week and that helped. After my visit this morning, my lung doc is putting me a daily dose of 5 to see what happens. May go back to 10 if things flare up again.
I haven’t had any side effects so far. The doc said that prednisone does effect your bones and makes them brittle. So I am getting a bone density test to see where I stand on that. Will find out later.
That is all I can say about this drug. It does seem to help. He wanted me to start on either Orev or Esbriet and I told him no. I have read about to many side effects on them.Maybe later as this disease progress may change my mind. I have been doing a lot of research on all the drugs in the pipeline for our illness. There are a lot of them getting funding and some are in the final stage of the trials and are looking for us. Most are showing no side effects like the for mentioned.
Well, that’s my thoughts for today. You all have a good day and even better Thanksgiving with family.
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I have IPF. I was fairly stable until 7 weeks ago when there was a fire in my building. I have been on prednisone 3 times since then. Smoke inhalation caused my cough to become very bad. We have tried various doses and titration to wean me off, but so far the coughing comes back as soon as the dose is decreased. I’m hoping this 3rd time is a charm because the side effects are unpleasant.
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Thanks for this information on you being on Prednisone. I just started this week. First five days will be 40 mg then following week to 30 mg for the second week. My coughing attacks in the morning are brutal with dry heaves and phlegm.
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Hello Regina, I’m sorry you had to be exposed to smoke inhalation. What a terrible experience that must have been. I can’t even imagine how that felt but I know it has to one of the worst things that could happen to a person with fibrotic lungs. I’m hoping this third time is a success for you. Hopefully your inflammation is slowly removing itself from your body. Please take care, Mark.
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Hi Les, thank you for sharing and pointing out the pros and cons of prednisone. I too am on 5 mg a day. This medicine is a contributor to my extension of life because of a lung transplant. It’s also great to hear you are enjoying your gift of life. Take care and congrats, mark
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Hello Randy, thank you for sharing. I too am monitored for bone density and have to date been given two infusions of reclast, which helps slow down the deterioration of your bones. It sounds like you have an excellent team overseeing your health. Take care, Mark.
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Hi Regina
I was also exposed to severe smoke inhalation when my neighbour cut down a field full of fairly tall Christmas trees, (his business) then set fire to them and went on a break, the fire burnt for three days and covered my house with smoke for the entire time. Seriously bad effects on me, first of all the cough, then a nasty infection and lung damage, the cough was eventually brought under control by gabapentine, an epilepsy drug, I still cough more than I used to but this is because of the advance of the fibrosis now top and bottom of both lungs. I do advice you to ask for a scan to see if you have adversely affected by the smoke inhalation.
Best of luck, hope you don’t have any long lasting effects
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Morning Les Viegas
It is true that women are much more likely to suffer more with the bone weakness effects of taking Prednisone long term, for me so far so good after three years now, started on 2 1/2mgs and am up to 10mg per day and more on a flare up, I have absolutely no side effects from taking the drug, even when on high doses during a flare up. As I hate cows or goats milk, I drink almond milk for the calcium and take extra strength calcium tablets to help keep as much bone density as I can, so far so good.
I also refused Orfev, Esbriet and CellCept because of the nasty side effects, for me quality is better than quantity of life left.
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My experience with CellCept has been little to no side effects. I am on 3000 mg a day. I know everyone is different. It has brought my inflammation down and now I am beginning a slow prednisone taper.
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