Prednisone tapering

Posted by larryf954 @larryf954, 3 days ago

I finished ADT on 12/21 and I’m having a difficult time tapering off of the prednisone I was given along side the Zytiga along with Orgovyx. I’ve been tapering for 7 weeks from the 5mg I took for 6 months. My energy levels are still very low, I’m having more hot flashes than I did during treatment and I’m frustrated that my MO has not given me much support in the tapering process. Based on my research I requested cortisol and ACTH blood test and I asked chatGPT what it(?) thought. Unfortunately, the testosterone blood test is still pending, as I think that can also be part of the problem. I’m at 1.5 mg per day and it told me to hold until I felt better - approximately 2 weeks. Anyone have experience to share on this subject and do you think I should go to an endocrinologist in lieu of my MOs minor attention to my issue. Thanks.

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I would suggest lots of data on Polymyalgia Rheumatica site. Anyone on prednisone longer than 2 weeks can have an issue tapering. Your symptoms fit exactly an adrenal insufficiency.

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I used this method for a benzodiazepine taper I did. However, I used (full fat) to help with the bioavailability of the medication, it also made the mixture a little more precise (for me) as I slowly tapered off...I hope that makes sense. It worked well for me.
Its a 3 part series of vids



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The problem with tapering prednisone is pretty common. I tapered off for about six weeks, but when I stopped completely, I was exhausted in the afternoon and had to get sleep. I didn’t realize at the time that I should’ve continued a little bit of prednisone

Over at the advanced prostate cancer weekly meetings with Ancan.org This has been discussed repeatedly. Some people just need longer tapering than others. The results varied greatly.

I think you are confusing prednisone with lack of testosterone. Your hot flashes have nothing to do with prednisone, it is caused by a lack of testosterone. Some people it comes back quickly and other people it takes a long time. My brother was on Lupron for six months, His testosterone came back very slowly, so his hot flashes continued, as well as the fatigue for at least nine months after stopping.

I know you’re waiting for your testosterone results. I suspect they’re not gonna be a very high number.

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@jeffmarc

The problem with tapering prednisone is pretty common. I tapered off for about six weeks, but when I stopped completely, I was exhausted in the afternoon and had to get sleep. I didn’t realize at the time that I should’ve continued a little bit of prednisone

Over at the advanced prostate cancer weekly meetings with Ancan.org This has been discussed repeatedly. Some people just need longer tapering than others. The results varied greatly.

I think you are confusing prednisone with lack of testosterone. Your hot flashes have nothing to do with prednisone, it is caused by a lack of testosterone. Some people it comes back quickly and other people it takes a long time. My brother was on Lupron for six months, His testosterone came back very slowly, so his hot flashes continued, as well as the fatigue for at least nine months after stopping.

I know you’re waiting for your testosterone results. I suspect they’re not gonna be a very high number.

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The strange thing is that when I was on the ADT my hot flashes were minimally sensed. Now I feel them more frequently and stronger. So while I understand they’re associated with the reduced testosterone perhaps they are less tolerated or the sensation is more noticeable with the reduced prednisone. I’m not stating that as scientific fact; rather it’s an explanation of my circumstances as best I can account for my condition. Thank you for the reply

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@larryf954

The strange thing is that when I was on the ADT my hot flashes were minimally sensed. Now I feel them more frequently and stronger. So while I understand they’re associated with the reduced testosterone perhaps they are less tolerated or the sensation is more noticeable with the reduced prednisone. I’m not stating that as scientific fact; rather it’s an explanation of my circumstances as best I can account for my condition. Thank you for the reply

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Prednisone provides cortisol for your body. If you have low cortisol, you have fatigue and from the below web information, you can also have hot flashes. It would be interesting to see what your cortisol test results are. It sure sounds like you should be on a little bit more prednisone. Talk to your doctor about this, The below information sure seems to tell you that it’s too little prednisone.

From the web
A lack of cortisol can potentially contribute to hot flashes, as low cortisol levels can disrupt the body's hormonal balance and impact the brain's temperature regulation, leading to hot flashes even when estrogen levels are not significantly low; this phenomenon is sometimes referred to as "stress-induced hot flashes" due to cortisol's role as a stress hormone

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@jeffmarc

The problem with tapering prednisone is pretty common. I tapered off for about six weeks, but when I stopped completely, I was exhausted in the afternoon and had to get sleep. I didn’t realize at the time that I should’ve continued a little bit of prednisone

Over at the advanced prostate cancer weekly meetings with Ancan.org This has been discussed repeatedly. Some people just need longer tapering than others. The results varied greatly.

I think you are confusing prednisone with lack of testosterone. Your hot flashes have nothing to do with prednisone, it is caused by a lack of testosterone. Some people it comes back quickly and other people it takes a long time. My brother was on Lupron for six months, His testosterone came back very slowly, so his hot flashes continued, as well as the fatigue for at least nine months after stopping.

I know you’re waiting for your testosterone results. I suspect they’re not gonna be a very high number.

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You are so correct when I stopped 5mg prednisone two weeks ago: cold Turkey. Afternoon was sleep time. Hope I get over this stoppage soon. Lol

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Thanks for that information- I’ve sent my test results to the MO and I’m awaiting / hoping for feedback. The AM results are:
Cortisone 13.7
ACTH 55.5
My research shows that the elevated ACTH (in normal range) level indicates that the pituitary gland is overworking to get the adrenal glands to produce more cortisol. As a consequence the adrenals still need support.

However, the cortisol is in the normal range also, so I think it’s the symptoms that is telling chatGPT that I still need the prednisone. Any further feedback is appreciated.

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@gmr60

I used this method for a benzodiazepine taper I did. However, I used (full fat) to help with the bioavailability of the medication, it also made the mixture a little more precise (for me) as I slowly tapered off...I hope that makes sense. It worked well for me.
Its a 3 part series of vids



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Thank you - I found this very helpful

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Btw - the testosterone test results just arrived and I’m surprised to see that it’s at 378ng after a level of < 2.5 for 4-5 months. In that I’ve read other people have waited many more months than the ~2 I have waited, I am grateful.

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@larryf954

Thank you - I found this very helpful

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Glad to help.

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