My Rheumy just called to say that my temporal artery biopsy came back positive. She put me on 60 mg. prednisone and submitted a request for approval of Actrema from my insurance.
I’m not happy that I have it, but it does feel like a relief to know what is causing me to feel so poorly.
Great but not good if you get my drift. At least you know where you are which does make life easier and you can take some control. And of course, there’s everyone here to cheer you on.
Look after yourself. It sounds as if you are in good hands.
I am glad you will now get the appropriate treatment. There is plenty of expertise and experience on here if you have questions or issues as they arise.
Sorry, it is always a bit of a shock. I was relieved that it wasn’t something deadly.
Yes, me too. I felt so generally awful I started to worry about a brain tumor or something. It could be worse, so in that way, I’m thankful it’s GCA.
As Snazzy said, not good news but good news in you have a definite diagnosis and can now work with that. Hope all goes well and lots of people and expertise here to answer any future questions.
At least now you can look after yourself and thank good ness you caught it in time.
Good luck with everything…..
All the best with your treatment! It’s quite a relief to have a definitive diagnosis, isn’t it? Hopefully you’ll see a marked change in your symptoms with that dose of Prednisone. I have found this forum to be absolutely invaluable. Read lots of the posts going back, as well as the FAQ’s. I found being informed as possible very empowering in this difficult time.
Good you have a result and there can be no argument as to what it is!
Sounds like your rheumatologist knows what she is doing. Stay involved with this group and you will do well. Only the best.
Thank you all, for the well-wishes and all the great information on this site. xo
I was diagnosed for GCA in the summer of 2001. I had to adjust my thinking and realize this is a long term deal, not just weeks or months. I've had a few challenges along the way, but I am now off pred. and taking weekly injections of Actemra. The high doses of pred. got me all wired up and had insomnia, but immediately helped my symptoms. Those side effects do get better as you reduce. All the best as you begin this journey!
Think you mean 2021 😊... at least I hope you do..
Oops! 2021 is correct. Good catch!
Didn't want you to frighten the horses... or rather the newbies...😊
It’s good that you know for sure and can be treated appropriately. I wish I knew for sure. I’m being treated as if I have GCA not knowing if it’s right At least now you know. Best wishes and hope all goes well.
Hi Mooreby,
Thank you. I just went and read your post about your experience with GCA, and your symptoms seem pretty conclusive compared to mine. Sorry you missed the window for a temporal biopsy, but it could have been inconclusive there as well, as I think PMRPro or DL explained. I’m shocked you have to wait for Nov. for MRI and MRA; I am having mine this Thursday. (They scheduled it at a local hospital rather than a diagnostic clinic.) I guess I am wondering if there is another site that could get you in faster? I hope we both have a straight path of tapering down appropriately and successfully, with no relapses or sight loss. (Or even weight gain! I eat extremely low carbs-Keto style, so am hopeful about that.) We’ll see, life is full of the unexpected, isn’t it?
by the way, I lived in the San Diego area for a year, one of my kids was born at sharp hospital. One of my daughters is living in San Diego currently.
Yeah, I wish I could have had the biopsy, but it is what it is. My Rheumy or PCP doctors don't seems too concerned by the later MRI or MRA, but they didn't give any other options. They said since my insurance already gave me pre-approval that we had to go by the pre-approval
I am really watching by diet thinking I was going to gain 40 lbs in 4 weeks but I have actually lost pounds. I have cut out white flour, sugars, and doing low sodium and basically following an Anti Inflammatory diet. It's just eating healthy. There are tons of cookbooks on Amazon and recipes online.
I actually am feeling the best I have in years! No aches or pains, I have lots of energy, very active using my muscles, and happy. Just not sleeping well.
Not looking forward to the crash and reality.
I've had a very similar journey to yours and know the relief of finding out what wasn't right with my body and understanding that it would eventually go into remission, even though there may be ups and downs along the road.
Wishing you all the best in your tapering regime. This group is the absolute best for coming to a good understanding of all the issues and getting moral support when morale is low 💗
Update on possible GCA
GCA update
Update on my GCA/Large vessel vasculitis journey: off pred and back to normal (with TCZ) 
GCA update
