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

Posted by Mike @dadcue, 1 day 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.

jabrown0407 | @jabrown0407 | 1 day ago

First, I am sorry that you have a Dx that includes the word "cancer" in it. I know it is very unsettling and something that takes time to accept and learn how to manage when it is not a case of needing immediate aggressive treatment. I wish you success on your cancer journey.
I have had a cancer that demanded immediate aggressive treatment as well as a Dx of cancer that requires long term management and monitoring. Neither is easy and both are isolating. People are only now hearing about managing cancer rather than treating it. It is not a well understood approach by the general public.
As far is your question as to which is better - my answer would be neither! I want an immune system that is in the happy zone and beyond that I do not agree that I need to score any other state. Sorry to be a wet blanket!

jeff97 | @jeff97 | 1 day ago

I'm sorry to hear you have cancer. I hope everything goes well with your treatment.

I took prednisone for 13 and a half months for PMR and GCA. Because of the GCA, I took a large cumulative dose over that time. Two or three months after I finished prednisone, I was diagnosed with 2 stage 0 melanomas. I am suspicious that the prednisone allowed the melanomas to develop, but there's no way of knowing.

I'm still taking Actemra. Based on a quick google search, it looks like there is less evidence about Actemra's effect on cancer.

John, Volunteer Mentor | @johnbishop | 1 day ago

Mike, I'm sorry to hear that you added another condition on your already full plate. Not sure if you have already searched for other discussions on NETs but there are quite a few that you may want to scan through for information - https://connect.mayoclinic.org/search/discussions/. I did see one in particular that might be a good start for information:
-- Neuroendocrine Tumors (NETs) Q&A with a NETs Expert
https://connect.mayoclinic.org/discussion/neuroendocrine-tumors-nets-qa-with-a-nets-expert/

kjoed53 | @kjoed53 | 1 day ago

I was diagnosed with PMR in March and it took 25mg prednisone to alleviate most of the pain. In May I was diagnosed with SMM and I was told that prednisone can mask the blood markers used to monitor it's progression and it suppresses the results of a bone marrow biopsy. For all the good of prednisone in the treatment of PMR and GCA, the health risks that are masked or suppressed by it are a real concern. It's definitely a trade-off, but for those of us unlucky enough to be diagnosed with a subsequent cancerous or precancerous condition, we can no longer accept that trade-off. I'm now at 7.5mg in my prednisone tapering, taking 3mg LDN and waiting for insurance approval to start kevzara.