My husband has lived with PC for around 14 years & has been on lupron injections since. 250 mg Zytiga & 5 mg prednisone were added 3 years ago. & despite usual hot flashes, fatigue, blood pressure ups & downs, did well.
The last 6 months he has been extremely fatigued, shaky, lightheaded. His blood work hasn’t shown a big problem except cortisol a little low. 2 months ago, since we were planning to go to S Texas for 4 months, his oncologist put him on a Zytiga vacation till April & be tapering off prednisone to see if that would help.
My hubby’s fatigue has gotten worse—almost dehabilitating. We have been blaming that on low cortisol, prednisone changes etc. We just got blood tests back that showed his testosterone was less than 10 (normal is 87-780). His PSA & other tests were ok.
I’m looking for sone advice. He is 84 but used to being very active. Thanks in advance.
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quilt-abit
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The point of the Lupron injections and Zytiga was to get T to those low levels -- that's what those drugs do -- and after so many years on those drugs it is not surprising that his T has not recovered after a short time off Zytiga, especially if he still gets a Lupron shot!
Has he had any sort of scans to see if the cancer is progressing even with a low PSA? It is also possible that he has a condition that is entirely unrelated to either the cancer or the cancer treatment, especially since he tolerated the low-T meds so well for so long.. Did he ever test positive for COVID? The symptoms sound like he is not getting enough oxygen distributed by the blood, which could be caused by several things -- have they all been ruled out by his PCP?
Holy cow... I tested positive on July 5, and also had the Covid cough for 5-6 weeks! One of the worst coughs I've ever had. During that time I seemed to have a low-grade fever, was sensitive to sunlight, and was very fatigued with shortness of breath on exertion (SOBOE).
The SOBOE, and general weakness and fatigue, returned in late Oct, and really could not be explained by either my cancer or its treatments. (Even though I was becoming more anemic at the time, the symptoms seemed too severe for the level of anemia.) I was tested to be sure I was not having heart or lung problems, and was all clear there.
Best guess is, the COVID reactivated some virus that I had been carrying dormant for years... that is apparently not uncommon. So that is a possibility to consider. As for treatments, nobody seems to know... I finally started taking several OTC antihistamines when I had COVID, which seemed to help clear it, but they did not help me in Nov. But a short course of dexamethasone really gave me some energy back recently (and by this time, I was quite anemic, too). So this speaks to what others are saying about problems with tapering the steroid... perhaps needs to go back on it for awhile?
The purpose of Lupron and Zytiga is to low the testosterone below 20. Many of us have testosterone that is unmeasurable.
Consider to consult with an endocrinologist. Zytiga blocks the production of hormones of the adrenal glands and he may have a "adrenal insufficiency"caused by zytiga, even when prednisone was tapered off correctly. His low cortisol may be an indication of this insufficiency.
I got adrenal insufficiency when I went off of Zytiga and stopped taking Prednisone. I tried to wean off it, but that was impossible. Some of the symptoms are extreme fatigue, loss of appetite and dehydration. It can be life-threatening. Mine was really bad, felt like I was dying. I just started taking Prednsione again and came back to life fairly quickly.
I have to take 10mg of Prednisone per day for the rest of my life now.
What happened to me was whenever I tried to get down to 2.5mg it was like hitting a wall and I would have to go back up. It takes a little while for it to get out of your system so it can sometimes look like it's OK, but then a day later when the levels go down even more, things get worse. There's a lag there that can confuse things.
The key here is that the fix is simple and fast providing you don't let things get really bad. If it is adrenal insufficiency, it will respond quickly to even a fairly small dose of Prednisone, It's really obvious. I'd say I was in pretty bad shape by the 2nd day wthout any steroids in my body. I couldn't even get off the couch, no appetite, just felt terrible. My doctor told me to take 10mg of Prednisone and see what happens. In one hour, I could tell I was getting better. In 3 hours I was half way back to normal. So it's not hard to tell.
My morning Cortisol was 8 so sounds like mine might be worse than his.
Run all this by the doctor of course, don't take this as advice. It's just my experience and what I know.
Unless it's come up significantly since that test, Cortisol at 3.1, is not a level you can function on without supplementing. No way. People with Addison's disease are at that level. If your doctor expects you to go off steriods at that level, I'd get a referral to an endocrinologist. Again this is based on what I know, talk to an endocrinologist.
This was exactly my husband's experience when he was taken off Zytiga & prednisone. A trip to the ER (May '22) confirmed he was in an adrenal crisis. Like you, he's now under the care of an endocrinologist and takes a hydrocortisone maintenance dose. His adrenal function has never recovered, but he's managed it well. Any hint of illness we have to double his daily dose.
Thanks for sharing. To me, it's pretty obvious what his problem is with such a low Cortisol trying to go off steroids. I have a good Oncologist, but I feel like he kind of dropped the ball on this one. I also had an adrenal crisis and it could have been prevented. Fortunately the fix is easy and fairly quick as long as you don't let things go too far.
I am similar to him. PC 15 years, age 77, mPC 12 years, Lupron keeps my T down to 3, PSA <0.1. I wouldn't try to raise T. I question Predisone. But you know, everyone is different. As for fatigue, I recently got a treadmill and I feel that just a little walking each day strengthens my legs/feet. A little weight lifting keeps me from withering upperbody. I'm a coffee drinker in mornings. But fatigue is always with me. Never really excited about any kind of work.
I'm 61, been on Lupron and Erleada for almost 3 years, my testosterone is in the 20s. My symptoms are not nearly that extreme. Everyone is different. You should go back to your oncologist for advice. Best of luck.
Low testosterone is the whole goal of the treatment. Eventually most treatment fails as the cancer cells adapt to one and another is then tried. Weakness is also a side effect of treatments and the cancer itself. Hopefully his doctor can suggest something to make him more comfortable. As you can see by other replies, every person as well as their cancer is different, and one size does not fit all. Listen to his doctor, he knows your husband's history and situation best. Good luck.
I was on 5 mg of prednisone and had fatigue. My doctor rasied that to 10 mg and that helped. Then the fatigue came back. Cortisol level was very low. I was then put on Florinef (another type of steroid and my levels rose and my BP went up. Feel pretty good now. Had to play with the Florinef dosage to get it where my BP was in the normal range. How is your husbands BP?It could be low. And his HR? Mine was low and I had to get a pacemaker.
My husbands BP has been running low lately.— has been higher in the past. Heart rate in the low 60s. I had wondered if there was a replacement for prednisone. Did your Cortisol go up? .
no. The prednisone does not increase cortisol. It mimics it so it acts like an increase in cortisol. The florinef was to increase my BP because it was in the 40’s and 50’s. The pacemaker is the only way to increase the HR. Mine was as low as 35 at night.
I have never felt the same since being Zytiga for about 4 months. The last testosterone check came back <12. Why do they insist on a continuing Lupron injection every three months. I can barely function, but the don't seem to care. I just failed chemo too, so now it's on to Pluvicto. Pain is starting to set in and my last round of docetaxel was Jan 10th. That shit should be out of my system, but it sure don't feel that. Quality of life is starting to suck.
Thank you to all who responded to my post. It warms my heart to know there are people out there willing to help. We appreciated the ideas & personal experiences you shared. So much to consider. Everyone’s PC is different but we are all in this together.
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