Just a little update ... Dexomethasone

While on Zytiga, patients are given low dose prednisone 5mg twice a day. The idea is to replace what is lost because of the Zytiga rather than to provide extra steroids. One cannot stop taking external steroids abruptly as that would cause "adrenal insufficiency" - a very debilitating condition. Corticosteroids have to be adjusted slowly and cautiously. Long-term high doses are catabolic (break down tissue), cause fluid retention, high blood pressure and breakdown of the immune system. Some have used dexamethasone rather than prednisone with Zytiga, but the dose is 0.5-1 mg daily (the dose he is taking now - 2mg twice a day is a very high dose and cannot be sustained for long periods)

Kathy77,

I had a similar miraculous reaction to Dexamethasone shortly after DX almost 3 years ago. I was having trouble controlling rib pain from mets and ended up in the hospital, completely unable to function from the pain. They tried IV morphine, fentanyl, etc. to little avail. Then a hospitalist came up with the idea of trying the DEX and it was the silver bullet we were looking for. Almost immediately, like within 15 minutes, I was getting significant relief. It was exactly what I needed and I was naturally very reluctant to stop taking it when my prescription ran out (2 or 3 weeks?), terrified we'd be back in the same old pain situation. But that did not happen. By then, I was at an appropriate level of oral morphine and oxycodone for breakthru pain, and I have remained well controlled basically for 2 1/2 years now.

I too am on Zytiga/Prednisone now. I've been taking that for about 15 months and it works well for me. My PSA has gone back down from 178 to 1 or so, though the last reading wasn't so great at 2. It may be starting to lose its effectiveness. For now, I continue with that and feel very good. I even played golf the week before Christmas.

I never considered using DEX instead of Prednisone with the Zytiga. I kind of like having a trump card in my back pocket, knowing that if I do have another horrible pain episode, that we have something to try that has worked before and I have not built up any particular tolerance for.

Good luck to you and your Dad.

Thank you so very much for responding gmoose and thank you for your well wishes. Good to hear that you stayed well after coming off the Dex. It's great to hear that you have been doing well on Zytiga... Let's hope that it's not losing its efficiency ... I believe there are other options following Zytiga and it sounds like you have a great medical team behind you so I'm sure that psa will go down again. The main thing is you're feeling well

This board has helped me a great deal. Last week I was practically having a 'breakdown'... To read your story is quite inspirational. My hope is returning... I'm still very worried but hearing from you guys, who are going through it.... It's quite amazing and is teaching me just to try and take each day as it comes.

All the very best to you X

Hi Kathy,
So glad to hear about your dads recent improvement in how he feels!

Long term steroids can lead to problems, especially at the higher doses. OTOH, in the world of anesthesia, dexamethasone(Decadron) was a bit of a wonder drug, also considered an over all feel good drug. We(anesthesia) liked to give it most especially if there had been any difficulty with establishing a secure airway, i.e. difficulty or multiple tries needed to get the endotrachial tube in the right spot, and especially in children. And I never knew an ENT surgeon(tonsillectomies etc) who did not request we give it- if we did not already give it on our own.

We gave it in doses of .25-.5 mg/kg. So even for a 20kg child(44 lbs) that would be a 5 mg one time dose, obviously more for adults, often 10mg or more. It did have it's potentially negative side effects even in the short term(like raising blood sugar in diabetics), but for us, the positives like less nausea and air way swelling and even pain reduction far outweighed the potential negatives. Actually, over my 36 year career, I don't recall any actual bad SEs that we could unequivocally blame on the decadron rather than the large # of other drugs we gave at the same time.

So I am not completely surprised to hear of your dads apparent positive response to it. But the risk to benefit ratio in the long term is something you guys will need to figure out along with your doctors who are prescribing it. Hard to say if- in your dad's case- the good will not significantly outweigh the bad. It may well.