GCA - Next step

[Spanky2019]

First apt with rheumy tomorrow. Referred by my neuro ophthalmologist. Been so sick. Weight loss has stopped. Thought I was suppose to gain weight on high dose pred? Also, still have Intermittent pain & blurriness in & behind one eye. Any ideas? Finally, I feel like a kid waiting for someone to tell me how to heal myself. An odd helplessness I felt decades ago when I was sick for extended time but wasn't on prednisone then. And I was in my 30's then. not 65 as I am now. Does that make any sense?

[PMRpro Ambassador]

Just as not everyone loses weight when they have PMR or GCA, not everyone gains weight with pred, some even lose! Even for those who do tend to gain weight it is not inevitable when you take some control and are strict about cutting dietary carbs.

You don't say how long you have been on pred or at what dose - not everyone is totally pain-free immediately, some not ever, and blurriness can be a side effect of pred which just confuses things.

And yes, of course it makes sense - chronic and severe systemic illness is a life-changing event at the time it strikes. It takes time to get yourself sorted out, to feel more human again and adjust to the new normal. Acceptance of that fact helps a great deal in learning to live well with whatever it is - and if you have to have an autoimmune disorder then this is one of the less awful ones as it does go into remission for the vast majority of people eventually. It may not be the 2 years or less some doctors will claim - but 4 to 5 years tends to be the limit for most GCA patients.

There will be others along soon who have walked the path you are on Stick with us and you will meet people who know exactly where you are.

[Spanky2019 in reply to PMRpro]

Thank you Pmrpro. Can't thank you enough for your info & support.

[SheffieldJane]

This all makes sense especially being reminded of a time you felt in limbo before in your life. Just for interest, what was the condition, when you were in your 30’s?

I hope your Rheumatology appointment sets your mind at rest.

[Spanky2019 in reply to SheffieldJane]

I had basilar artery migraine with brain stem ischemia. I was debilitated for days at a time. This at the same time having 5 little ones under 8 years old (which frankly now makes me sad thinking of that young me caring for so many children.) Our children suffered too and now... Just feel badly to bring my pain & sickness back into our kids/gkids lives as they all so beautifully are caring for their own families. FYI: I fell asleep after responding to Propmr last night. My middle of the night, might be your daytime. Lol! As always, thank you.

[SheffieldJane in reply to Spanky2019]

You gave them the skills that they are now able to use as they raise their own children. They are a credit to you. It’s your turn now to take great care of yourself and stop the “ mum thinking”. It’s a hard habit to break, I know.

PMRPro is so reassuring, I am not surprised she sent you to sleep. Good luck with your first Rheumatologist appointment, I hope she/ he is special.