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A MyLungCancerTeam Member asked a question 💭
Chapel Hill, NC
May 22
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Answer Summary

Members shared a wide range of experiences with extended prednisone use, from a few months to over 40 years, in response to the question about... Read more

Members shared a wide range of experiences with extended prednisone use, from a few months to over 40 years, in response to the question about being on it for an extended period. Several members described difficult side effects including insomnia, mood swings, blood sugar spikes, weight gain, cataracts, and serious complications like thrush and atrial fibrillation, while a few noted little to no trouble at lower doses. A recurring theme was that prednisone, though often necessary for managing inflammation and autoimmune reactions from cancer treatments, came with real challenges, and members encouraged each other to stay in close contact with their doctors about tapering and alternative options.

A MyLungCancerTeam Member

OMG! I was on them for 5 months for double pneumonia and pneuminitus. It really messed with my body and mind. I was just given prednisone and doxycyline? For headaches. Dr. Felt it was sinus related. I look at a steroid and immediately gain 5 lbs.

May 25
A MyLungCancerTeam Member

Actually, I am sure I was never on steroids, I was lucky

May 29
A MyLungCancerTeam Member

I have been on Prednisone for over 3 years. Starting at 70 mg. I am now at 10mg. I tried earlier to taper but by the time I was down to 6 mg my pneumonitis acted up so back to 20mg I went. This time I am tapering much slower. I will drop to 7.5mg in a month. The story behind this is I received on infusion of Durvalumab( Immunotherapy) 4-6:weeks later I contracted pneumonitis. I will have this the rest of my
life. Therefore, I will need an immunosuppressant to keep the inflammation at bay. My doctor has put me on a sparing agent to help get me off of Prednisone. Along with this issue I have, gained 25 lbs, have contracted A-Fib, gastritis, gastric ulcers, pancreatitis, kidney issues, skin issues as well as skin tearing and bruising. I'm constantly fatigued. Sleep eludes me one day and the next all I want to do is sleep. I take 10 medications a day. My experience with Prednisone is not a good one. I wish you luck and hope you don't have to take it too long.

May 23 (edited)
A MyLungCancerTeam Member

I am on it all the time . Back to 40 a day for 2 weeks weaning down by 5 every 2 works. For me it’s inflammation and fatigue. Had to be off for 2 weeks for blood work, thought I would end up in hospital again! Dr says we are going to try an injection ( one type would be once a month the other type 2x a month.) It is suppose to take your dependency off of predisone. No waiting for insurance approval. May be you could check with your Drs about that option.

May 22
MyLungCancerTeam

Yes, extended prednisone use does come up in the lung cancer community! A MyLungCancerTeam member shared that they were on steroids for six months after developing pneumonitis as a side effect of lung cancer treatment, and described the experience as quite tough.

Some side effects they noticed included:

- Difficulty Show Full Answer

Yes, extended prednisone use does come up in the lung cancer community! A MyLungCancerTeam member shared that they were on steroids for six months after developing pneumonitis as a side effect of lung cancer treatment, and described the experience as quite tough.

Some side effects they noticed included:

- Difficulty sleeping
- Increased anxiety
- Facial swelling ("moon face")
- Skin that bruised very easily

The skin bruising issue persisted even two years later, which is a good reminder that some side effects can linger after stopping steroids. Long-term steroid use like prednisone can affect the body in several ways because it mimics cortisol, your body's natural stress hormone. This can impact things like blood sugar, blood pressure, and heart rate over time.

It's really important to keep your care team closely informed about how you're feeling while on prednisone, especially if you're on it for an extended period. They can help manage side effects and adjust your treatment plan if needed. Everyone's experience is different, so open communication with your doctor is key! 💙

May 22

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