1st rheumy update

[Spanky2019]

Rheumy thoroughly explained gca, possible prednisone effects, other risks and, said, "if you get to feeling better in 2, 3, 5 years you very well may have an aortic aneurysm. " Said you can't exercise this away, or mind over matter it away. He said this is a full body, systemic inflammation of vasculature and is very serious. So prescribed another month high dose pred, bone scan, labs, calcium, vitamin d, bactrim ds 3 X weekly. Labs monthly. Back to neuro ophthalmologist regularly but no injections to treat trochleitis which is continuing to give severe pain. He said injection into ocular area is contraindicated at this time. No arthroscopy for ankle & no miniscus repair in knee. Get a brace but procedures too risky at this time he said. Very direct and serious but cute - I'd take him fishing. Lol Hubby liked him too. We are sad, but I've learned to be a warrior. I'll talk another time what has taken me to the place that, at least tonight, I call myself a warrior woman. Not fun or easy though. Really so grateful for you friends. Hope I can pay it forward when feeling a bit stronger.

[Pristina]

Gosh you are a brave woman and kudos to your Rheumy for being totally straight with you, some treat us like idiots. I am new here but you have a lot of friends on on this forum who will support you all the way, I wish you the very best.

[Hidden]

Sometimes we need the proper info so we can adjust to what's really happening to our body. I am glad you had someone there with you and that despite the hard message, the Rheumy managed to come across as caring and supportive. Sounds like you are getting a good team around you.🌻

[Spanky2019 in reply to Hidden]

Yes Poopadoop, but just noticed written prescription. I think he increased prednisone to 80 mg. We live very rural USA. I will bring written script to our little local clinic but I didn't really look at rx at rheumy office. He's concerned about one eye very blurry & painful. I will have our pharmacy be sure it is written correctly. They wouldn't up pred to 80 mg for lil ole me, would they?

[Hidden in reply to Spanky2019]

Some people need that amount or more. Your Rheumy sounds really on top of everything. You definitely should ensure you have correct dose dispense if you are in a rural area and it's a time factor. So yes they have increased pred to 80mg for lil ole you. They are taking care of those eyes spanky. You might feel a little weird and jittery on high dose pred but for eyesight it's worth it. 😊

[Spanky2019 in reply to Hidden]

Yes, thank you, but I really am lil ole me. I'm not quite 4 ft 8 inches tall. Two hours ago I felt like a warrior. Right now I feel ... no, I question "how I can do this." Thank you. I'll figure it out but sure helps to share & get feedback.

[Hidden in reply to Spanky2019]

That is a whopping dose then. But hopefully it won't be for very long. It'll certainly contribute to ups and downs. I am sure others with GCA will have better info/advice/ experiences than me.

[Soraya_PMR in reply to Spanky2019]

How can I do this? One day at a time. One hour at a time if necessary.

Does this help? “Why would you not do this?”

Of course you’ll do it. It’ll be tough going I’m sure. But hang on in there.

Your rheumi sounds fab.

[SnazzyD]

Well, that would explain a few things. Such a lot to get your head around. To be told you can’t mind over matter something and or be a warrior blazing through is a blow if you that’s your go to way. You can still be a warrior but a careful one and hopefully when things improve less of a sad one. Take things day by day but it sounds like you’re no stranger to that. We’re all here to encourage you on.

[SheffieldJane]

You are indeed the warrior woman. I am glad you got a special Rheumatologist whom you can relate too and er take fishing! 😉

[Jackoh]

As has been said- one day at a time. Your Rheumatologist sounds on the ball- hang onto him!!