Which is better -- an over-reactive immune system or a suppressed one?

Posted by Mike @dadcue, 13 hours ago

Now that I'm officially diagnosed with a rare type of cancer that produces too many hormones ... I'm wondering about this question.

Prednisone is widely used to treat autoimmune conditions like PMR. Prednisone is one of the most prescribed drugs in the United States. It is a great drug for a lot of people. No one is arguing that. But concerns are mounting about its long-term safety, particularly regarding a potential link to cancer.

I had a problem when I tapered off prednisone because of a low level of a hormone called cortisol. Now it turns out that several other hormone levels are too high. I don't have many symptoms but my doctor says I have carcinoid syndrome from functional neuroendocrine tumors (NETs).
https://www.webmd.com/cancer/neuroendocrine-tumors-treat
and
https://my.clevelandclinic.org/health/diseases/22103-carcinoid-syndrome
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Now my immune system and my endocrine system both need to be suppressed.

Fortunately my NETs are slow growing so I'm more likely to die from something else rather than cancer if I am treated. Unfortunately, surgery shouldn't be done with my immune system suppressed. At least the biologic I'm on can be stopped easily. It would be hard to stop Prednisone if I still needed it.

I was worried the biologic I am taking caused NETs. However there was evidence of cancer on CT scans from 2020 when I was still on Prednisone. Immunosuppression might have masked some symptoms of cancer including inflammation.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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