Prednisone/radiation pneumonitis - 1269246

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willy11
Prednisone/radiation pneumonitis - 1269246

Hi, I am correctly taking prednisone for radiation pneumonitis. I have read some posts on here that say some patients can be told that they have radiation pneumonitis, but it can be something underlying. From scans and testing it seems this is radiation pneumonitis. My question is I have been on prednisone for 2 months now. I'm in the process of tapering down to 10 mg per day now. The tapering was done slowly. I realize prednisone can give energy and I'm finding as I've tapered down my energy level has dwindled. The cough has slightly returned and shortness of breath. Is this a normal reaction? I know there is a crash aspect to tapering. It's just that I felt much better on the higher doses. My oncologist and pulmonologist tell me I may have to be on a dose that helps for a few months. Is it a good idea to be on prednisone for months? Willy

catdander
Hi Willy,

Hi Willy,

Yes, it's sometimes necessary to be on prednisone to control these symptoms. However it's important to taper off if it's possible to alleviate side effects. Be careful with tapering, it's a very individual process where sometimes it's more important to raise the dose instead of lowering it. It's good you are aware and watchful of your own situation so to balance the benefits with the side effects. The doctors here have written quite a bit the subject. http://cancergrace.org/search-results?q=steroid%20taperin and http://cancergrace.org/search-results?q=steroid%20taperin

I hope you find the balance.

Janine

willy11
Hi Janine,

Hi Janine,

Thank you for responding so quickly and sending the links about tapering off of prednisone.

Yes, it is a balance to taper down from 60mg. I have done it in small increments and it's showing me what is helping and what is not. The goal is 10 mg by next week, so I'm almost there. I feel some people are tapered down too abruptly and it can't be good for the body. Well actually I'm not certain how good prednisone is for the body either, but in certain situations it does help.

Willy

catdander
Completely right Willy.

Completely right Willy. While prednisone has its benefits a balance is important to find and the person taking it is best to understand and adjust it. A flawless example of why self advocacy is the best way to move through illnesses.

willy11
Catdander,

Catdander,

With going through almost a year of nsclc 3b I have quickly (and at times not so quickly) learned that you do have to be your own advocate. Thank you for your response.

Willy

catdander
Who else is better suited to

Who else is better suited to say how you feel on the prednisone but you. With nsclc there are so many "if"s and "depends" that go into describing options that your knowledgeable input is crucial. Good for you, many people don't have that piece that makes them need to know and dig further.

Keep us posted.

Janine

willy11
Hi Janine,

Hi Janine,

As the saying goes "this ain't my first time at the rodeo!" Prior to the LC I've had 4 cervical reconstructive surgeries so that definitely showed me that as patients we have to go by what we feel is best for ourselves. Surgeons don't live with the pain and total titanium in their neck. Oncologists don't live with lung cancer. I respect their knowledge and opinion, but we all have to do research on this, listen and learn from others going through it, etc. It's our life at stake.

Willy