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

What an awesome advocate you are!!

I have a different perspective on this because I’m a daughter of someone with PMR.

I would just be honest with them and let them know what to expect. If you can, try to keep it simple, then try to answer their questions. But you may know your kids better and what they’d need to feel reassured.

I think the scariest thing with most medical conditions is not knowing what to expect. I had to be the one to explain my dad’s condition to his very strong-opinioned brothers and sisters, and my cousins. It’s one thing to Google it, but I think most people are sort of aware that each experience is different.

I told our family PMR is a serious condition, but it’s not uncommon and thankfully there’s well-established and effective treatments for it. With GCA the effects are scarier, so I had to explain what was being done to monitor for GCA. For those who didn’t understand an autoimmune condition or this specific type (we have autoimmune in our family, but PMR presents differently than what any of us are used to causing such debilitating pain and affecting the muscles rather than the joints, and the arteries in the case of GCA).

I have too many backseat drivers because a lot of my family are in the medical professions (and I am not, but I have chronic pain so have a lot of experience), so their questions involved how do we know it’s PMR, what tests were run, what were the results what medication, what dose, has he been screened for PMR, etc. I just told them the sketch of it to respect my dad’s privacy.

And once they felt more assured that my dad was on a path to recovery and we had a solid plan of care, and crucially they knew what to expect about how it would affect him in the short and medium term and what he’d look like when they saw him—that he would appear very fatigued and weak, that the prednisone taper would be a long haul, they were okay, or at least not as anxious.

For my family at least, knowing there’s a plan and we’ve definitely experienced medical trauma, so feeling more certain that the plan of care makes sense and we can trust the doctors he has went a long way.

It was still jarring to see him in the condition he was in, but I have to believe it didn’t make things worse for me to tell them what to expect.

Sorry for the trials and tribulations.

My daughter and family live 5000 miles away. We get together one place or another every year.

Meanwhile, my daughter and I use FB Messenger almost every day (similar to Zoom). She's cooking dinner while I'm having breakfast. It is probably more time spent together than if she lived in the same town!

Please consider this type of visit rather than in person. Your husband's immune system is terribly compromised, he needs to heal before he visits.

I use Covid rules these days too,

@nancy53
Thanks!! We also use FB Messenger, FB Portal and FaceTime. All are wonderful ways to stay in touch. My husband honestly doesn't even like to travel yet he would like time with his kids and grandkids. Sadly we have to travel to see them, or they have to come to us.

I spoke with my sons and they had an idea that just might work - rent a large house on the beach where we all have our own space (we always get the master bedroom on the annual family vacations.) I could be very careful in choosing the house so that he could be separate from everyone when needed, and that had a place where he could eat away from everyone if needed. We could also find a place that had a nice outdoor area for meals and activities and choose a warm time of year.

They both have researched his illness on their own and now understand what is at stake. So they are willing to do whatever we need to make things work for my husband. One of my sons is into music like his dad. They started this "5 at 5" daily ritual where my husband sends my son 5 songs he likes, my son listens to them on his evening walk, and they discuss the songs afterwards. This has brought them so much closer and has been very good for my husband. He just began texting a few months ago so it's a new world for him. Our other son decided this weekend he would start sending his dad daily short clips of mind-body connection type videos (he and I are firm believers in the mind-body connection - we saw it work in the 90s when I got very sick, was told I'd never get better, told the doctor not to tell me things like that and went on to do as much research as I could finding ways to heal my body that were more on the alternative side. It took 4 years but I fully healed and recovered and shocked them all.) I know he can't wish this away and that is not what my son or I believe in. We do believe that there is power in positive thinking and visualization, and having a firm belief that you will heal. So I think these short videos will be another very useful thing for him that will also bring them closer.

My sons are now sorry they didn't listen when I kept telling them they should do a sons/father trip to a place they all wanted to go. I said you never know the future so don't keep waiting. But they're young and they thought they had all the time in the world. This has changed their view a lot and this weekend they told me they regret not doing it and asked me if I thought they might still get a chance. And when. I told them he needs time for the prednisone and Actemra to work and gave them a timeline of 6 months to 2 years, not knowing myself what a good timeline would be. I think that would be another positive thing for my husband to have to look forward to. A trip with his two sons only. I spent a few hours with one of my sons this weekend for the first time in years. We're always all together. It was absolutely one of the best things we've done in a long time and was one of the highlights of my trip. My other son made sure to sneak in some moments alone with me too, though not as easy for him right now with a baby and 4-year-old. But we'll find the time somehow in the near future. It's crazy how we let time fly by without doing some of the most important things that would mean the most to us.

What great ideas!

You are 100% right about the power of positive thinking. I have several dear friends and the ones I want to spend the most time with are the ones who live by the motto that the glass is half full - or overflowing! The naysayers are wonderful people, just not as inspiring to me now that I need all the positivity I can take.

Good luck to your husband. He's lucky to have you.

@nancy53
At this stage in life I feel the same. I love my friends who live by the glass is 1/2 empty and I find they exhaust me after a while. Especially since what's happened with my husband. I feel like I need all the positivity in my life I can find and have little desire or patience for the negative. When I'm with people who live by the glass half-full or overflowing motto I feel uplifted and better. There's definitely something to it.

I was diagnosed with GCA last July. It was very scary, I was hospitalized for 5 days. I was on a high dose of prednisone, then tapered off. I am now on a Actemra injection (self administered) every 2 weeks. I was told by my rheumatologist that it is unknown why you get an autoimmune disease, something in your body triggers it. As far as autoimmune diseases go, GCA is one of the more common ones. After a couple of weeks at home after I got out of the hospital, I went about my normal life. I never stopped seeing my grandchildren, I traveled to Florida with them. I take my travel cooler with my injection & go. My motto is “it could be worse”. Of course you still have to be careful, wear a mask on a plane, try to eat healthy, exercise. But life is short, try not to miss it. Hope this helps.

@dbyme
Thanks for your perspective. I'm going to read this to my husband. He's scared to do anything and I'm afraid he's going to miss out on everything. When you got out of the hospital and went on Actemra after high-dose prednisone, were you also on prednisone for some time? They had my husband on 80 mg prednisone and once a week Actemra injections. He was hospitalized two days and went to a clinic for the last IV infusion (3 total). They did say his was the worse case they'd seen and that at first, it was resistant to treatment. Until they did those infusions. We've tapered over the past month to 60 mg but that is still very high. 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. Otherwise, he's not in pain so he's happy about that. He does worry about his immune system with both the prednisone and Actemra. His doctor put the fear of God in him when she told him what could happen if he got a virus. So I get why he's scared and doesn't want to go places right now. Maybe when we've tapered to a much lower dose of prednisone and with the weekly Actemra injections he'll feel better and the doctor will lighten up a bit. At least we have a good doctor - our first was awful.

"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.

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.