Prednisone vs Pneumonia/Sepsis

I cannot comment regarding the tie to the melanoma treatment, but I do have a lot of experience with endocrinological issues and tapering off steroids. One question — is your husband on any antibiotics, or are the doctors saying there is no bacterial infection? Prednisone is notoriously hard to wean from. The positive about the drug is that it is long-lasting and only needs to be taken once a day. Hydrocortisone, on the other hand, mimics the body’s natural production more closely, and it must be taken two-three times a day. It is easier to wean down from hydro. At 15mg prednisone, that is the equivalent of 60mg hydrocortisone. The physiological dose (the amount needed for healthy people for normal functioning) is about 20mg. Assuming your husband is producing no steroids on his own, he is getting a triple dose … which is not an uncommon need during times of illness and stress. If it were me, I would ask to be switched to hydro, and frontload the dosage in the morning (30mg at 8a, 20mg at 2p, 10mg at 6p). Then you could tweak the dosage based on symptoms during the day. If the side effects become onerous (weight gain, insomnia, easy bruising) you could wean down by 5mg or 2.5mg and see how well he does.

I’m not familiar to what your husband is experiencing but I also developed sepsis the first time I took a high dose of steroids. I also developed pretty much every side effect. (Desxamethasone, 40mg, 7 weeks) although the glaucoma eventually went away. They are a beast.

Sadly, most doctors do not realize how quickly adrenal insufficiency can turn into adrenal crisis and become life-threatening. In general, my advice to my patients in the endocrine community is “Too much (temporary) steroid won’t hurt you, but too little can kill you. ALWAYS err on the side of too much.”

I fear some of the answers here may have strayed from some of the most important points of your questions.
Congrats on your husband’s NED status! I cannot tell you what is going on with your husband from afar. However, it sounds serious and needs to be addressed in a more definitive manner. (A truth that you are more than certainly aware!!!)

In my long experience with immunotherapy (as a patient, researcher and reporter) side effects are myriad and often confusing to patients and providers – especially providers who are not well versed in them. Pneumonitis, a fairly common side effect of immunotherapy, is often mistaken for pneumonia – though, just to make things complicated can turn into pneumonia. Here is a quote from just one report on it:
“Pneumonitis associated with anti-PD-1/PD-L1 mAbs is a toxicity of variable onset and clinical, radiologic, and pathologic appearances. It is more common when anti-PD-1/PD-L1 mAbs are combined with anti-cytotoxic T-cell lymphocyte-4 mAb. Most events are low grade and improve/resolve with drug holding/immunosuppression. Rarely, pneumonitis worsens despite immunosuppression, and may result in infection and/or death.”

Here are a zillion reports on pneumonitis: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=pneumonitis
There are also many ways in which immunotherapy can create cardiac toxicities. Some articles addressing that ended up in those linked above. But you can use the search bubble on my blog more specifically if you wish.

Here is a treatment algorithm for pulmonary side effects to immunotherapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/excellent-pdf-on-how-to-deal-with.html
Clicking on the link within the post takes you to a clearer pic and description.

Steroids are life saving in many of the adverse reactions to immunotherapy. However, they are not without side effects of their own. So it is important to manage their use in a way that meets the needs of the patient’s condition. Like other posters have noted (and you are already aware) endocrine glands that produce needed hormones (from insulin to cortisol to thyroid hormones) can all be adversely affected by immunotherapy. However, ascertaining if those are depleted can be determined by some fairly simple blood tests that your local oncologist or even PCP can order. Treating the patient as though these glands have been affected when they have not can be quite deleterious.

Finally, side effects to immunotherapy can develop while on the drugs as well as after they have been stopped. For instance in one article in this report: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/do-melanoma-peeps-with-side-effects-to.html
Researchers note: “One treatment-related death (1.1%) occurred in a patient who had multiorgan failure 70 days after the last dose of NIVO plus IPI.”

Melanoma doesn’t play. But, neither do these side effects. It is unfortunate that patients and their families must yell and scream to get the care and attention they need, but if we must so be it!! Being hospitalized repeatedly with “fluid in the lungs and around the heart” is a medical emergency – not something that you guess at the treatment of. It is not easy and we do not always win given how the provision of medical care is doled out no matter the country we are in, but I would arm myself with data I felt was pertinent to my case and proceed to yell and scream about it until an objective and through examination (included appropriate lab work to evaluate all aspects of endocrine function) were provided. You can always seek the care of a melanoma specialist apart from the oncologist you already see for a second opinion if need be.

I hope I have provided some help. I wish you and your husband my best. Celeste