After waiting 3 months to see a rhumatologist and just completing a bilateral temporal artery biopsy, I have been given the diagnosis of bilateral GCA.
My starting dose of Prednisone is 60mg (I thought that was really high for a small person with multiple other diagnoses that will be exacerbated by this medication) and I am feeling "overwhelmed"! Rhumy just told me to take for 2wks and we will discuss additional meds &/or taper protocol.
I have so many unanswered questions and this site has so much to learn from. I venture to say I will be asking for guidance as I process this devastating news.
I already want to thank everyone on this site for the information I am already reading!
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Abikitty
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Others with more knowledge will be along to advise you further, but lots of really helpful information to be found in FAQ'S that you may like to take a look at.
..and yes 60mg is a fairly hefty dose, but it’s given to protect sight, which is very important, and it’s only 2 weeks. Hopefully after that time, you can reduce in a sensible manner and feel less overwhelmed.
Read as much as you like, but don’t overload yourself too much, and try to take in everything at once - you won’t, it’s all new, and the Pred may well make it difficult to concentrate.
.and remember if you don’t understand anything - or feel anxious - just ask. There’s always someone around.
I’m only diddy and I was put on 60mg for a few days then put on 40mg for 6 weeks after my symptoms responded within 2 hours. People have higher, even 100mg. Don’t fret, it’s doing you a service even though it doesn’t feel like it. Objective, calm thinking isn’t easy on high doses because it can speed up the mind and make you less able to focus on all the information you suddenly have to hoover up. Being overwhelmed is par for the course as you embark on the journey to find out out about this mystery condition feeling like you have to become an expert with half a brain. Luckily we’re here to answer questions. I was the same, it does get better! TLC is the order of the day and be kind to yourself.
It might help you to jot down your questions as they arise. This will help alleviate the feeling of being so overwhelmed. It is lucky that we have so many people on here keen to share their experience and offer opinions. Nobody goes unanswered. It is an invaluable resource.
I have to ask: Did your PCP suspect GCA when you saw them? At what stage was GCA suspected which then resulted in a biopsy?
The suspicion of GCA should result in an emergency medical referral if the local hospital doesn't have a fast-track service for GCA. GCA is a medical emergency - just like a heart attack or stroke, You wouldn't wait 3 months for either of them.
Sorry for delay: my computer had an "attitude" and lost my files, which I had to do detective duty to rescue them. . .
My Primary suspected GCA at the peak of my symptoms ran labs and advised I go to hospital emergency room which diagnosed vertebrobasilar disease after numerous tests (including head and neck scan) ruling out possible stroke, focusing on extreme dizziness as one of my symptoms! They sent me to a neurologist for a consult.
However, my Primary already ordered the biopsy which confirmed bilateral GCA. I FINALLY got in to see a rhumatologist last week and am now on 60mg prednisone.
I was just recently diagnosed with GCA 5 weeks ago. And I'm only a little person as well, so big doses of pred really knocked me around a lot. I started with 3 days of "pulse therapy" – 1gram IV x3 then 50mg of pred orally until I saw the rheumie 4 weeks later. Had to temporarily go back up to 65mg when symptoms started coming back. Pred is mighty powerful voodoo juice with a major kick to it for sure, but it does the job of protecting sight and other damage from the inflammation that underlies GCA, so has its advantages.
I can really sympathise with feeling totally off the planet, spaced out and overwhelmed. My last few weeks have seen me swing from hyper to total meltdown, depression, wired but exhausted (sleep is a real problem!) and a whole feeling of my sense of self having gone out the window on holiday somewhere without me. It's actually sometimes quite distressing for someone like me who has always been pretty down to earth, practical and not prone to outbursts or histrionics, even though the wise ones of the forum here are most reassuring that it will pass and things will come back to some sort of "normality".
I'm now at 50mg, heading for 40mg in a few weeks and am noticing some slight improvement in things compared to the IV pred and 65mg.
So hang in there. It WILL get better, but I really feel for you at present and definitely send my best wishes – it's a bit of a wild and wooly rollercoaster ride isn't it!
Thank you for your kind thoughts. I can really relate to the "sense of self having gone out the window on holiday somewhere without me"! Up until this adventure, I was still competing in Triathlon and now am but a shadow of myself. . .Time to re-group and embrace the challenge.
Well you have certainly come to the right place for help. This site has given me everything I needed to help me through the very intimidating disease that is GCA. And everyone is so very knowledgeable and so full of common sense. I believe they have helped me 100 times more than my Rheumatologist. Prednisone can alter your personality somewhat at first, but just take everything in your stride, as I found out my altered personality disappeared when I started reducing. I do think it is important to eat the right sort of foods especially as your body and immune system need all the help you can give it at the moment. Google anti inflammatory foods and go from there. x
The dietary piece is a great challenge for me. My husband & family are first-generation Italian immigrants and any conversation always comes back to FOOD! I switched to AIP when I found out that "wheat" was the culprit. The carbs are going to be a challenge because I love all fresh fruit and am truly missing my morning smoothie!!!!
Wheat was my problem too - like an allergy, itching and a rash. Any other grain is fine - spelt, kamut, rye, no problem. Wheat - haven't eaten it for years. At present I'm on so much pred and now Actemra that I can eat proper pizza from the village pizzeria - no need to request gluten-free which although not bad don't have the same "bones" around the edge.
The advice I wish I'd been given when I was diagnosed is to relax, not worry and accept that things will get much better as the pred levels reduce. (Rheumy's never say important stuff like this.) Diagnosis and steroids feel overwhelming at first but high levels of pred are time limited and although it seems like a long time, tapering goes quickly and you will be able to look back at this time feeling like yourself again. Also, if you hit a level that gives euphoria, enjoy it while it lasts but don't overdo the activity!
GCA is difficult but not devastating once it is being controlled. There is lots of great advice on this forum, and everyone is individual. Some people have more challenges than others and some sail through but the important thing to focus on is that GCA is a time-limited condition. Good luck. X
Thanks for all of your posts, so far. The positive and inspiring comments give me reassurance that there is hope and that I am certainly not alone in this journey.
Perhaps consider keeping a daily diary too of dose taken and how you are feeling? PMR and GCA are long term illnesses and you will improve, but you won't remember how you were feeling some months on as your journey progresses. Just to repeat Cut The Carbs!!!
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