What to tell adult kids? Dad diagnosed with giant cell arteritis (GCA)

I got euphoria on 20mg and was wondering why I never heard of this drug. Of course they had tried prednisone at low doses when I was first diagnosed with RA - to no avail - so I never thought of it again. This dose was incredible. My flare was subdued and I was happy happy happy! But once I tapered below 15mg, the euphoria began to dissipate. Welcome to reality.

I cannot imagine 60mg.

"I notice side effects like he's jittery, hands shaking, only able to sleep about 5 hours a night so he's often tired, and sometimes it seems he's a little forgetful and clumsy. Not sure if these are classic prednisone side effects or not."

These are very likely to be prednisone side effects. I'm surprised he is able to sleep 5 hours.
I remember being on prednisone doses as high as 100 mg. It told my ophthalmologist that it was great because I didn't have any need to sleep anymore. My not needing to sleep lasted about a week and then I slept for 2 days when my dose was decreased to 60 mg.

Another interesting side effect of high dose prednisone is euphoria --- "a false sense of well being." I learned about euphoria as a side effect from prednisone from my ophthalmologist. I told him that I couldn't see my hand in front of my face and I was pretty sure my left eye was a "lost cause." He shined a bright light into my left eye and reassured me that I wasn't blind because I said the light was white. What I said next was more shocking. I told my ophthalmologist, "if I ended up being blind, I didn't care because I felt great!" That was when my ophthalmologist decreased my dose to 60 mg because I was feeling too good.

Be aware of the Mental Health Side Effects:
"Early in treatment (within several days), prednisone may increase feelings of well-being, anxiety, hypomania or mild euphoria. With long-term therapy, however, people may develop depression. Psychosis, referred to as corticosteroid-induced psychosis, can occur at doses of 20 mg or more per day with long-term use."

I don't want to scare you with all the possible side effects of prednisone. People generally don't experience all of the side effects from prednisone. However, almost everyone will experience some of the side effects. Sleep disturbances, the shakes and euphoria were some that I experienced.

Prednisone is needed at this stage. However, with some luck Actemra will allow him to decrease his Prednisone dose rather quickly. On a hopeful note, I don't seem to have any serious side effects from Actemra.

@dadcue
Darn! That is some scary stuff. I appreciate you sharing this. I will pass along his exact side effects to our new (and much more competent) rheumatologist so she can make the call if anything needs to change.

I will ask him but I don’t believe he’s had that euphoria feeling. If you have a moment could you describe exactly how you felt?

All of this is frightening. I’m trying to find the balance of being informed without being in a constant state of panic. I spoke with a girlfriend whose husband is going through his share of medical issues, so she is in somewhat similar position as I am. We agreed that we really need to take care of ourselves and take time to do things that make us happy so that we can be strong and be there for them. It’s hard to find that balance.

I have another girlfriend right now whose husband is in the hospital fighting a horrible cancer after a time of remission making our medical issues sound like a blessing. His counts are so low they can’t even allow him to brush his teeth for fear he could bleed to death. His bed is padded so he doesn’t accidentally hit the metal. So frightening.

It is nice to hear from people like you. It truly has helped me in different ways. So thank you!

The euphoric feeling I experienced was relatively mild. For me it was just happiness and an elevated sense of well-being. When a person has euphoria, the way they feel does not reflect the reality of their situation.

For example:
Being on the verge of losing my eyesight wasn't a good situation. However, I didn't care if I ended up blind in one eye because overall, I felt great.

Not sleeping for days was a good thing because I felt like I was being productive. I would do things just for the sake of doing something ... I didn't care if what I did was useful or not. I literally felt like sleep wasn't necessary.

I wasn't manic but I definitely had hypomania.

"Hypomnia is characterized by elevated mood in addition to behavior change including increased energy, increased confidence, increased activity, impulsivity, irritability, disinhibition, and a reduced need for sleep."

I wasn't aware of any of this when I was first diagnosed with PMR and started taking prednisone on a long term basis. I have done a retrospective review of my own behavior because I wasn't aware that something wasn't quite right in the beginning. Sadly, many people never become aware of what prednisone does to them

The body has a complex regulatory system. The cortisol our body produces plays a huge role in how our bodies function and maintain homeostasis. When we take prednisone, we basically tell our bodies that we can manually control how we function. We take the entire system out of autopilot and hope we can manage things under the guise of "managing inflammation."