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What to tell adult kids? Dad diagnosed with giant cell arteritis (GCA)
Polymyalgia Rheumatica (PMR) | Last Active: Apr 15 10:19pm | Replies (22)Comment receiving replies
@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!
Replies to "@dadcue Darn! That is some scary stuff. I appreciate you sharing this. I will pass along..."
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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."
https://www.mayoclinicproceedings.org/article/S0025-6196(11)61160-9/fulltext
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."