Prednisone tapping

[Blueribbon63]

I was on Zytiga-Prednisone-Lupron for three months, SE horrible, mostly caused by Prednisone. I put in more than 30 pounds in this short period of time, couldn't sleep interrupted by extremely muscle cramps and feet twitching, high blood pressure (which I've never had in the past) All of this besides the well known Lupron SE, hot flashes, fatigue. Oncologist and I decided to stop Zytiga right away and tap off Prednisone. I had started with 10 mg, then cut in half to 5 mg to see if SE would decrease which didn't happen, tapped off for one week 2.5 mg, and two weeks taking 2.5 mg every other day, and I am done. In my next visit with Oncologist, my BP was high still, the muscle cramps stopped and am working out very hard to get rid of the nasty extra pounds. Dr suggested to start taking Xtandi,but to this day I have not taken it because my PCP found out a dangerous interaction with retroviral meds I take for HIV. Now after reading what SE XTandi could do to you, I am so glad I haven't started taking it yet! I did have my second Lupron injection (every four months) and can't wait to see what my oncologist has to say about a new treatment plan in two weeks when I have a follow up appointment with him. I wish you guys to make the best decision and may God bless you both.

[Tall_Allen]

Why were you taking 10 mg/day prednisone with your Zytiga? (the dose for HSPC is 5 mg/day) What is your BMD?

[Blueribbon63 in reply to Tall_Allen]

Great question, I've not had a DEXA test, so I don't know. Oncologist based her RX on results from PET SCAN. This is also the reason I didn't want to continue Xgeva (I only had one injection)

[Tall_Allen in reply to Blueribbon63]

DXA scans are cheap and easy - basically just an Xray. Ask for one.

[Gatodd in reply to Tall_Allen]

I am also taking zytiga with 5 mg prednisone twice per day (total 10 mg). Have been for 18 months. I’m not castrate resistant. Plan is zytiga for 24 months, firmagon for 36 months

I doubled checked the recommended dosage and I think I should only be taking 5 mg. Is this something to raise to MO? What are the effects of the additional prednisone?

[Derf4223 in reply to Gatodd]

You could try and split your 10 mg prednisone in half... I am not a doctor but I am HSAPc myself and take 5 mg as per my MO. If you've been on 10 mg for a while and go to 5 mg abruptly you might get some kind of sudden taper SE or 2-3. I'd work it with my MO if I were you.

[Grandpa4 in reply to Gatodd]

yes your body make about 4 mg of prednisone a day normally so 5 is 10% more but 10 is more than double. Many more side effects. It cause weight gain, sleep issues, bone loss, thin skin, easy bruising and diminished immune response.

[Tall_Allen in reply to Gatodd]

Yes, notify your MO immediately.

[Gatodd in reply to Tall_Allen]

the MO took me down to 5mg immediately. Hopefully, some of the shortness of breath will improve. Thanks

[SViking]

what would be the outcome of reducing the Zytiga dose by 50%? Would you also cut the prednisone dosage in half?

[Ron53]

Everyone seems to react a little differently, but here’s my experience with same. I complained to my Uro with most of the side effects you have, after having been on same meds for 18 months or so. He suggested switching from Lupron to Firmagon. That helped me significantly with the hot flashes. I went from having an episode every 30 min to just maybe 4-5 episodes per day. ( be aware it takes a while for the Effects of Lupron to wear off). He then brought my Predisone down to 5mg. All of that made feel much better for awhile. Only issue is Firmagon is a monthly injection in the tummy. (Nowhere near as bad as it seems if you have an experienced nurse). As I said, for awhile that worked great. Then I started getting horribly fatigued. Doc gave me 5 mg of Ritalin twice a day. Initially that was a game changer until it wasn’t. Oncologist checked my cortisol levels And it was below 1. Depending on the time of day, should be 5 to 12 or more. He then switched me from Prednisone to Hydrocortisone. Jury is still out, but I do seem a little better. Got to retest my Cortisol levels to make sure that’s higher.