new GCA patient

[Birdfriend]

61 year old Caucasian female live inChicago Metro. Sudden onset on severe headaches , jaw pain , Ear pain , neck pain in April’23.

Diagnosed with GCA after temporal biopsy.

Started on 60 mg of pred for 6 weeks. Now on 35 mg with weekly Acterma shot.

Feel good during day- regularly exercise , stay fit. But by late day, early evening feel like emotional roller coaster and need to go to bed early. Definitely side effects of Pred.

[PMRpro Ambassador]

Hi and welcome, Looking forward to hearing more from you

[SnazzyD]

Hello and welcome. Yes, that sounds par for the course due to two powerful immunosuppressants and your immune system attacking its own body. Your medications don’t stop that happening, they prevent the build up of the resulting inflammation which causes things like blindness. One of the issues with Pred is that it gives you false energy at a time when you need serious rest for a serious systemic condition with serious meds. Some people feel constantly tired but wired and others feel energised or back to normal and inadvertently over do it. It does burn itself out in its own time, but you’re early months still so you may need to respond to that feeling done in and moderate your activity. Another thing to consider is that Pred affects muscles and ligaments so they are less tolerant to exercise, especially repetitive or explosive, which doesn’t always show up early on. Sorry, it all sounds a bit negative, but early intervention increases your chances of a less bumpy ride! 🙂Oh, and a low carb diet will help control your blood sugar and weight which can go crazy with Pred. Others will be along with more info.

[Birdfriend in reply to SnazzyD]

Thanks for the info/encouragement 👍

[DorsetLady PMRGCAuk volunteer]

Welcome

If you haven’t already, maybe have a read through this -

healthunlocked.com/pmrgcauk...

[Birdfriend in reply to DorsetLady]

thank you

[Viveka]

What Snazzy said. In the early days in particular its better to put more emphasis on rest and relaxation and to moderate exercise and activity to give your body a chance to get used to things. As you decrease the amounts of meds, you're likely to be able to be more active again without the crash. You've come to a great forum. Loads of expert advice on all things GCA/PMR.

[Birdfriend in reply to Viveka]

Thank you

[Preacherball]

Welcome to the forum! Sorry you are dealing with this illness. I'm north of you in suburb of Minneapolis. I was diagnosed in June of 2021- two years ago. I was also on pred. and Actemra. I had some setbacks along the way (you can read my bio.), but I just recently finished pred. and I am now on weekly Actemra shots only. Rheumy says to continue for 6 months, and then I hopefully will be able to start reducing Actemra shots, with hope of being done by this time next year. High doses of pred. definitely disrupt sleep, like drinking coffee during the night, but this gets better as you get to lower doses. Other than the times I experienced respiratory issues, which I first thought were flares, but probably were infections, I've been able to live a largely normal life. Best wishes as you move along on this journey.