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

I have RA - a different autoimmune disease. But challenges are similar. I think the most important thing I needed my children and grands to understand is that the final arbiter of whether I feel a specific activity is threatening to me is me. They are all problem solvers by nature and in some cases by training. But I don’t want a visit that’s riddled with offering activities they believe will be safe and putting me in the position of saying no. It’s frustrating to them and painful to me.
So if everyone is peaceful with the ground rules of just being together then go. But if there are germy 3 yr olds in the room maybe they can blow kisses from across the room 🙂

For now - fall back on your rules of how to gather during covid. Everyone understands that.

Are you aware that Actemra needs to be stopped if he has any infection? Prednisone puts your husband at a greater risk of an infection too but Prednisone can't be easily stopped. Out of an abundance of caution, maybe waiting awhile before having this visit would be better. There are alternatives to face to face visits these days.

I was diagnosed with Reactive Arthritis long before PMR was diagnosed. Reactive arthritis derives its name from a reaction to an infection. I still have reactive arthritis. I dread getting any and all infections. All hell breaks loose whenever I get an infection. I remember those respiratory infections that persisted for months.

Maybe waiting until you know for sure Actemra is working and his Prednisone dose is much lower before having this visit would be reasonable.

Thank you!! Very good advice. They all can relate to COVID rules. That was very helpful.

That sounds very reasonable and something they can understand. I know they don’t want their dad to be like he was last month. And thank you for mentioning stopping Actemra if he gets sick. Our doctor told us to do that. I feel he is at super high risk while still on 70 mg of prednisone. We’re very new to all this so still trying to understand it all myself.

I trust @dadcue ‘s instinct and judgment relative to how to live with PMR and all that implies. . Waiting sounds like a good idea. Maybe until late spring and you can do most of your interactions outside?

I agree waiting would be wise. I’ll discuss all of this with my kids. I know they want the best for their dad. I’m going this weekend and my husband has asked me to wear a mask. Especially when I’m hugging the kids and close to them. Which is most of the time. Then there’s a big party on Sunday and hopefully people will understand when I’m wearing a mask. I have to do my part to keep him safe. I run a home childcare and preschool and we always wear masks when we’re around the kids. We never stopped after COVID. It’s harder with grandkids who want to snuggle and get Grammy kisses. We have let our guard down a number of times and have gotten sick every time. Things ar different now with these medications and his condition.

I meant we’ve let our guard down when visiting our grandkids. That’s what triggered him getting so sick after the holidays.

I'm relatively new to these biologics so you have more experience than me.

I didn't have many ill-effects from prednisone when I used high dose Prednisone but only in short term bursts for reactive arthritis and uveitis. I thought PMR was a blessing when I was given a long term prescription for prednisone.

I made many mistakes taking Prednisone for as long as I did. I wish I could have another chance when I was first diagnosed with PMR. I would have advocated for Kevzara or Actemra after a year or two if PMR persisted that long even if there aren't any guarantees. My rheumatologist said a TNF-inhibitor was my other option. Even though Humira didn't work well for me, there was some valuable information that was learned.

All the medical literature says that taking prednisone on a long term basis can cause serious problems.

I met with two lots of family over the holidays, at their suggestion. I explained to each that I have an auto-immune condition that means if anyone I get close to has anything at all, I will catch it where others may not, and I will catch it twice as bad, due to my immune system being compromised. I made it clear that I wouldn't be able to meet up if any of them was even slightly unwell. They agreed to meet outside and I said I may be wearing a mask. I didn't end up wearing a mask as all of them seemed so well. They all kept their distance and absolutely respected the need to minimise infection risk.

Young children are high risk for catching and spreading things, especially if they regularly mix with other children. Assuming your adult family members are well, is there any chance they could have the little ones looked after at home and travel to your place to see your husband? I totally understand him not being willing to travel right now. Catching something during travel is just as risky as catching something from the children.

Thank you for sharing that. I feel fortunate that I was able to figure out he had developed GCA about 9 months after he was diagnosed with PMR. There is so much good info out there thar I knew what to ask for (temporal biopsy) to get a quick diagnosis. The rheumatologist first fought me saying she didn’t think he had it. I argued with her that he had PMR for months and suddenly developed every symptom for GCA except blindness. I told her I wasn’t waiting around. She ordered the biopsy and two days later he was diagnosed. We since have a new rheumatologist. She messed up a number of times. We now have a great one! He was out on 80 mg prednisone and landed in the hospital for a couple days. He finally started getting relief after three days of IV infusions of high dose steroids. A couple weeks later we started the Actemra injections. I had to ask about that too and then fight for it. Fortunately our insurance covers it. We’re hoping it’s going to help him taper the prednisone quickly.