Update ..pulse therapy with methylprednisolone for GCA flare

[Grammy80]

Most importantly, thank you to all of you for your support. I wouldn't be where I am without you.

My intentions of an update were there yesterday, but I am here at any rate. I'm just a thankful 'Pred-mess' at the moment. After the first 1000mg on Thursday, I was just 'wired.' I sat up that whole day and whole night--greeted the sun, and off we went for infusion #2. I still had some eye and head pain after the first infusion, which disappointed me and scared me. I fell asleep during the second infusion, 90 min, and slept a few hours later. The infusion center is not usually open on the weekends, but I told the nurse I was concerned about letting my levels drop (??) over the weekend since I still wasn't pain-free. The nurse said she was willing to come in and give it to me on Saturday since she knew I was concerned. We were there at 7 am on Saturday, yesterday, with flowers for her!

I'd received a message from my rheumatologist to take 60mg prednisone per day after finishing with the infusions, and I will see him tomorrow, Monday. We will go over the neuro-ophthalmologist report then.

I'm feeling all the things one would expect, some I'd forgotten, I'm cold, and it is quite warm, I'm quivering like a fall leaf .....and when I go to think about something, well, it is just too much bother to sort it out. I can still see, so I'll take the side effects. Things are a bit blurry now, but I'm pretty sure it is due to all the cocktails I've been getting. I do think the fact that dim light seems quite dark may be something that stays, but we'll see.

When you are having your evening meal in the UK on Monday, I'll just be headed to the rheumatologist's office. I'm just hoping I don't hear any competing messaging between rheumy and neuro. I'll say competing baloney when I could use stronger language.

When I had the flare, I was six days from my fifth anniversary with GCA; I'll never take my eyes for granted. If I lost my sight, the ramifications would be enough to send my thoughts into the universe. So, one day at a time... again...I 💞 you... and feel your support even away from the computer. Thanks💞

[DorsetLady PMRGCAuk volunteer]

As always, my very best wishes to you…. you’re a lovely and very strong lady, although a bit bonkers [in the nice possible way😏 of course] at times.🌸

[Sillydogsmum]

I can't imagine how weird that dose of Pred must make you feel . All the very best .🌺

[Grammy80 in reply to Sillydogsmum]

.......$$$ really buzzed, high street value💞

[VeeWat]

oh Grammy, I hope everything works out for you in the best way.

Take good care

[Angelsmummy]

Bless you ,cannot even begin to think what you are going through,come so far now the monster is back.Stay strong dear Grammy,we are all rooting for you.Sending healing,kind thoughts .xx💐💐💐❤️🐈🫐

[Sophiestree]

Good to hear, and it will be interesting hear what your rheumatologist says later today. I'm glad the nurse came in for you on Sat, it never occurred to me that it wouldn't be a 7 day a week place. Phew!

Wired is exactly how I felt after 3 days of pulse therapy, and lots of napping ...

so pleased you are having the right treatment though and quickly.

[BarachoisBay]

Thinking of you in beautiful sunny Nova Scotia, Grammy, Take care.

[PMRpro Ambassador]

There's a top nurse!!!!!

[Sharitone]

So far; so good. Rooting for you, Grammy!

[Bluey-1]

Thinking of you Grammy. You’re really going through it. Take care. Hope the pred does its business and it all calms down.

[Skysey]

Sending healing thoughts to you Grammy. Hope you feel better soon. X🌼🌸☀️

[Grammy80 in reply to Skysey]

💞