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Hypersensitivity pneumonitis interstitial lung disease (HSID)
I have been on prednisone as high as 60 mg and was weened down to 9 mg as a treatment for hypersensitivity pneumonitis interstitial lung disease. I would like to know if there is another medication to use in place of the prednisone that doesn't have the side effects that prednisone does? How do you know as a patient when you can be taken off prednisone entirely and let your adrenal glands take over? What kind of physician would be able to determine if your adrenal glands were not functioning?
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Welcome @mec1944 to connect. I am so sorry that you have had to be on high doses of prednisone. I hate prednisone but it's the best there is for inflammation out there. We are not doctors so I can't recommend another medication but I can suggest that you ask your doctor if there are any others with less harsh side effects. I become a different person, mean and intolerant. Only your doctor should decide when you are well enough. "Hypersensitivity pneumonitis (HP) is an interstitial lung disease caused by repeated inhalation of certain fungal, bacterial, animal protein or reactive chemical particles, called antigens. ... Hypersensitivity pneumonitis is subdivided into two forms: acute and chronic. Symptoms differ for each form." google. If this disease has caused a lot of scar tissue than taking prednisone can lower the inflammation. Do you know what antigen caused your disease? Are you breathing ok?
I had it for a while now I just my lungs are hurting me more than before when I was told that I have this disease
Way do you dislike Predrisone
I was told it has a number of side effects if you take it long term. It lowers your immune system and you get frequent infections. I've been getting repeated respiratory symptoms affecting the eyes, nose, breathing and I have a nonproductive cough most of the time during this past winter. The pulmonologist has suggested taking CellCept that has many other side effects. I read that Olev is also used
I have just been diagnosed with fibrotic hypersensitivity pneumonitis. I am quite certain it is from the reactive chemicals in my husband's 3d printing lab in our house. I just had the bronchial lavage and HRCT which both strongly suggest this diagnosis. My Dr will be meeting with other specialists next week to review my case. Not an easy diagnosis
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2 ReactionsHi Merry
Just came across this....you turn into a mean and intolerant person????? I started Prednisone 40mg six weeks ago (2wks 40mg, 2wks 30mg, 2wks 20mg and now 2 wks 10mg and then stop) for what is now described as radiation-induced pneumonitis. I became hyperactive and organized a ton of stuff...fortunately it put me in a good mood, and I couldn't stop talking. But it doesn't let you sleep. So, I will be glad to be off of it. Unfortunately, in my case it means they can't do immunotherapy.
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1 ReactionVic- Will you be able to go on immunotherapy once you are off the prednisone?
The reason that I was on such a heavy dose, 60 mg (protocol is much like yours) was also due to radiation-induced pneumonitis. At first I acted much like you but as the months passed that feeling wore off and I was worn down.
I don't want to re-live that again. It wasn't very good. I only gained about 5 lbs but I had the prednisone cheeks! Not a pretty sight at all. lol
Merry
Hi Merry.
60mg is a lot!! How long were you on Prednizone and how did you taper down? I will be 8.5 weeks (10mg the last 2 weeks) and then totally stop and hope nothing comes back. I only had 3 sessions of SBRT, but they would have been stronger than if spread out.
My Pulmonologist had mentioned immunotherapy because I have lots of nodules. Now that Prednisone helped me, he calls it radiation-induced pneumonitis, and said I would not be able to do immunotherapy because of the radiation (not the Prednisone). I don't understand enough to know if that is only for now or permanent.
I found the below article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7499987/
Radiation recall pneumonitis induced by PD-1/PD-L1 blockades: mechanisms and therapeutic implications
Here are the Conclusions:
In conclusion, RRP induced by PD-1 blockade is the unique pattern of radiation-related toxicity. The clinical presentation was different from common RP and RRP induced by cytotoxic drugs. The immune checkpoint inhibitors may have evoked an inflammatory reaction in patients’ previously irradiated fields, with potential involvement of infiltrating lymphocytes and related cytokines. All RRP patients showed durable response to anti-PD-1/PD-L1. It was manageable, and sufficient steroids or corticosteroids are needed. A further analysis of the predictive factors is needed with the wide use of immune checkpoint inhibitors and high mortality of this kind of lung toxicity with combination treatment.
DEFINIITON
Radiation recall pneumonitis (RRP) is a rare but severe condition which has been mainly detected in the previously irradiated lung of patients with cancer after administering inciting agents, most commonly antineoplastic regimens including chemotherapy, targeted therapy, or immunotherapy.
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1 ReactionVic- I tapered down with the protocol that my doctor gave me. My last pill was a 5mg. I don't remember the exact times but it seemed like forever that I was on it. Sixty mg was a lot. I couldn't believe that he was making me do that much. I thought for sure it would be 45 mg.
Over a span of 26 years, I have had two lobectomies, three SBRTs, and chemo once. I am not on any daily medications but do an inhaler. I have never taken any type of immunotherapy.
I will definitely take a look at the information about RRP. Thank you so much.
Is there a permanent thread on Connect for Multifocal? We have this chronic form of lung cancer and information is limited so it would be interesting to get an idea of how various cases are playing out. Like how many years since diagnosis, how many nodules do they have, various treatments and complications. I am two years since diagnosis with 2 VAT surgeries and one SBRT with Radiation Induced Pneumonitis. My oxygen levels fall with exertion, could be several reasons.
With which SBRT did you have your flareup? Not with all of them?
Now that tests are posted and one tries to understand them, I looked at my pulmonary function tests. During my pneumonitis, I was almost qualifying for portable oxygen. After Prednisone, my test results came back up but not to the level they were in April - only half way.