Saga continues on.....again.....

[Kern1410]

Hello all!

I’m sitting here at the cardiologist. New blood work show levels at normal - but just reduced down from 40mg to 30mg. When I went below 30mg is when my symptoms reappeared. I’m hoping for the best! This might be symptom based and I will have to fight this on my own. So far all doctors want me off prednisone - but I’m scared to go back to that pain. I’m going to see if I can get an ultrasound of my cartoid arteries to rule those out and then the Rheumatologist on Friday to really dig in (but I doubt he will - he already said by phone he thinks I’m too young for GCA) then off to neurologist. I don’t know what else to do? My friends and family think I’m crazy - but I guess you gotta do what you gotta do for peace of mind and your health!

I’m reading your posts of travel and sunshine. Where I live - it’s supposed to be 102 today! 😳 have a good day everyone!

[DorsetLady PMRGCAuk volunteer]

Hi again.

Too young? What age are you?

Your bloods may be okay at the moment but that may be because the Pred is keeping them artificially low - not sure if they’ve been raised in past. However if you’ve just reduced from 40mg to 30mg - too big a drop most of us would say - then it may take a week or so for your bloods to reflect that. Symptoms are the key! So if you get any return of symptoms (no matter what you bloods say) - you’ll know you’ve gone too low again.

Good luck with Rheumy appointment.

[PMRpro Ambassador]

48 is NOT too young - no-one told GCA it has to wait for a specific birthday. When the new guidelines were drawn up saying "over 50" there had been great lobbying for it to be lower.

Why are you at the cardiologist?

[Blearyeyed in reply to PMRpro]

Yes , but it is a shame that it didn't get told to wait .

48 is only unusual , 46.5 for me , it is the symptoms not age that matters.

[PMRpro Ambassador in reply to Blearyeyed]

Don't get me started!!!!!

[Blearyeyed in reply to PMRpro]

Ooh go on😋😂😂😂

[Kern1410 in reply to PMRpro]

For my blood pressure - and to keep ruling everything out. My BP was not under control very well prior - but with the prednisone - it’s pretty high. They did an EKG and sent off the ultrasound of he cartoid for insurance approval.

[PMRpro Ambassador in reply to Kern1410]

Some people find their BP stablises on pred - it was vasculitis causing narrowed arteries that caused it. Do hope they do something useful.

[Kern1410 in reply to PMRpro]

BP still high. All doctors still pushing migraines. I’m on my 4th day of 30mg and I started having the fluttering / light throbbing in my temple, eye a little blurry and droopy in the a.m. No way a migraine cycle could last this long buried under predisone. I guess I have more research ahead.

[PMRpro Ambassador in reply to Kern1410]

Of course - for a patient with arteritis in large arteries the dose does need to be high enough to reduce the symptoms. Same applies for PMR, LVV and GCA - just the dose varies.

[Hidden]

I would be more surprised if your bloods showed markers whist you are on that much pred. I presume they will be checking everything. Hopefully you won't fall between a rock and a hard place. I am linking you the this paper, just for info. There have been a couple of people under 50 that were eventually diagnosed with Takayasu arteritis.

vasculitisfoundation.org/mc...

[Kern1410 in reply to Hidden]

Read through. MRI and MRA showed nothing from Saturday.

[Hidden in reply to Kern1410]

Well ticking alternatives off which is a good thing. Fingers crossed for diagnosis asap!

[Kern1410 in reply to Hidden]

Thanks!