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Prednisone
Try a low dose of prednisone everyday We have gotten wonderful results!!!
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15 Replies
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After being very sick and put on oxygen 24/7 I’ve had several series of prednisone and antibiotics. Always feel good while on them but not so good when done. Doctor is just putting me on 10mg per day to see if that will maintain feeling good and I’m hoping this works. Good to hear that it’s worked for you.
Peg-
Omg for Prednisone, Benzonate and Methylprednisolone all gave me arash, nausea, dizziness. I still haven’t gotten the Esbriet. But my dilemma has been my Insurance which is palin out being inhumane. I need to take Promathazine -Dm 4 times a day which is only every g hours, this new doctor agreed that I need oxygen, But again the Insurance is not helping. I keep falling so I addressed the need of pain medication which helps me a lot. I keep falling and now I have 3 tears in my meniscus, fractured nose and broke a tooth. And I asked her basically how much longer do, I have and she wasn’t too positive. It’s been two years now. I am constantly in bed and desperately trying to leave New Jersey. This place is horrible and now the cold weather kicked in and I get worse.
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After several months on high dose prednisone my pulmonologist tapered me down to a corticosteroid inhaler (Flovent HFA.) It targets the lungs so the bad systemic side effects (high blood sugar, bone thinning, insomnia) are eliminated and the SOB and cough remain improved.
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I was on up to 60mg while in the hospital but now back to 10mg. I really don’t think it does anything for me other than raising my blood sugar, requiring me to take additional diabetes medication. Sort of a lose/lose situation.
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Try this right after you eat and see if it helps your sugar…if you ever find that your blood sugar is high. https://www.youtube.com/watch?v=prF0d4pm7j0
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10mg is just 3 mg above the 7mg our own body produces.
For me, the additional 3mg is a very slight risk into any negatives.
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This is my first time joining in the conversation but I follow the postings.
I was diagnosed 5 years ago with hypersensitivity pneumonitis, etiology unknown. Many ups & downs treated with various doses of prednisone. My pulmonologist really wanted to get me off of it. He tried putting me on Azothioprine 50 mg daily. Unfortunately my GI tract didn’t like it, had to discontinue it. I have been maintaining quite well on 5 mg of prednisone for almost 1 year. My PFT in September shows little change from 6 months prior. I will have annual CT lung scan in May which will give clear picture. I cough a little in the morning , will take a generic Mucinex DM if necessary. Holding my own and grateful for everyday. Singing joyfully in my church choir. Good lung exercise.
Happy New Year to all. Enjoy reading all of your posts. Always something to learn. Judie
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First time posting.
I was diagnosed with IPF in early 2021. Lung capacity was diminished, but not enough for oxygen. Had a nasty cough and tired easier. Cough continued to get worse. March 2022 saw me in the ER due to the coughing and general weakness. Came out of the hospital on oxygen 24/7. Saw my pulmonologist, tested lung capacity was below 50%. He started me on 50mg per day of prednisone for one month, then 40mg for one month, etc. I had been seeing a pulmonologist at Mich Med (UofM Ann Arbor) and he wanted the level reduced weekly until entirely off. When I got to 10mg per day, I was back to coughing and tiring easily. Went back to 20mg per day and things seemed to stabilize, but the longer I was at this level the cough and tiredness returned. Pulmonologist ok’d increasing prednisone to 40mg, and within a few days the cough was gone and my energy level was starting to improve. I have a CT scan next week and a visit with my pulmonologist in January.
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Are you taking supplements that help with inflammation? Vitamin D, Zinc, melatonin 20 mg, omega 3’s.
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I have had good results with Prednisone. Earlier this year I started taking 40 mg/day for events that required energy on my part (travel, family visits, etc). While it greatly helped my energy level, I felt jittery and definitely had trouble sleeping. But I felt the benefits outweighed these effects. My pulmonologist was resistant to putting me on a regular regimen but was sympathetic to the benefits it provided me. We proceeded to trial various doses to determine a beneficial dose. We share the opinion that the minimum effective dose is the proper path, but I have been pretty clear with him that I am most interested in in the QUALITY of my life, not the QUANTITY. After a few months of trialing, it seems to me that 10mg is the right dose. I will boost it to 20mg on occasion. Each of us has specific individual reaction to IPF and our medications, but I have had great results with Prednisone and encourage evaluating it as part of your treatment regimen. BTW, I find it WAY more helpful the Esbrit/Pirfinidone and it is WAY cheaper.
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My mom’s doctor wants her on 20mg and we are concerned with side effects. She can’t sleep, brittle bones, mood changes…she is 80lbs. Is it worth it?
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I too have HP and have tried to get off Prednisone. I am now on 500 mg Cellcept and have weaned down over the year from 40 mg to 10 mg! My PFT & CT has shown no significant change. I also did terrible on the first drug you mentioned, Azothioprine.
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Dear Pete,
Why on occasion do you bump up the prednisone, stress, illness, ? Does your doctor go along with this? I am just curious. I have been on prednisone 7.5 mg for a year, I think. Thank you, Corgilover1
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Corgilover,
I get a bit of stimulation/energy boost when I bump the dose. So for normal, day the 10mg is fine. The increased dose is my “turbo”. And yes , my doc is OK with it. He and I have had an ongoing discussion, and we have jointly come up with this plan. I am very fortunate to have found a doc that listens and works with me.
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Until 2 years ago, I coughed all the time and got regular lung infections. The pulmonologist said I shouldn’t have to get sick all the time. I started 10 mg of prednisone daily and 250 mg of Azithromicin 3 days a week. I’m still on 3 liters of oxygen and Tellegra daily, but I don’t cough very much and haven’t had a lung infection in 2 years. The doctor says that my lungs have not decreased in the 2 years. It is the best I’ve done in years. Bobby
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Recently read that Azithromycin might help with fibrosis…i think it actually showed to reduce fibrosis in mice.
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Honestly, I had the worst reaction to Prednisone, Benzonate 100 which is “Tessalon,” by the way, and Methylprednisone. None of these crappy neds did anything for me. I was vomiting, experienced Nausea, I had rashes, couldn’t sleep, and had rashes. I don’t know, I am so tired of the medical negligence which, I am receiving. I am tired of the inhumane way that, I am being treated. My doctor is giving me a hard time putting me on Esbriet. I was waiting for almost 2 months for a nurse to stop by to do my bloodwork. The problem is I have noticed that my Ipf has progressed immensely. So, I either sleep a lot, or I can’t drink water which, I love drinking water but now, I throw up. I have completely lost my appetite, And for me even before I was diagnosed, I have always been a pain in the butt to eat. I seem to not get out of bed anymore, I cannot shower every day, but at least, from my conversation with this new doctor, she seems to be willing to give me oxygen. But the thing is I keep falling on my face so, I do need pain meds. I know some people when they get to the stage I am do receive pain meds. I have 3 tears in my meniscus. And this week I bashed my knee again. So. I cannot even place my foot on the floor. We all know that pulmonary fibrosis is a terminal illness and these doctors need to make us feel comfortable. I have had it with these doctors.
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I was diagnosed with an interstitial lung disease in November 2021. Then I had 65% lung capacity and not on oxygen or Prednisone.
I August this year, my oxygen saturation took a dive, and I ended up in hospital on intravenous cortisone and an antibiotic, blood tests revealing a virus and a bacterial infection. After 6 days, I was much better and went home. Not on oxygen except at night. Prednisone was prescribed at 30mg per day for a month. Thereafter it was dropped to 20mg per day for 2 weeks. Thereafter it was reduced by 2.5mg per week until by 3rd December I was off totally. I’m pleased that I’m off the Prednisone as I lost a lot of muscle mass and got a big stomach. Also, it made me diabetic, which I had never been before and suppressed my immune system, making me vulnerable to a lung virus. which could be fatal. The antibiotic necessary to protect against it is a Sulphur drug, which I am allergic to. So I’m very pleased not to be on Prednisone anymore. I have been taking Esbriet since February last year. Unfortunately, the fibrosis has worsened and now my lung capacity is only 40% and I am on oxygen full time – 2.5 LPM. I have started taking Serrapeptase and am about to start Nattokinase as well, in order to stop mucous and hopefully reverse the scarring of my lungs.
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Please let us know if you see positive changes from the Serrapeptase and Nattokinase.
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