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Who has GCA, Giant Cell Arteritis?

Posted by wendy517 @wendy517, Apr 21 4:30pm

Getting biopsies done tomorrow, both temples. Long time coming, been having crashing headaches and vision issues for awhile now but all got a lot worse on a visit with my daughter in Florida (I live in NJ & Poconos).
ER visit thurs, asked to "please check for GCA". Was given morphine, toradol & nausea med IV cocktail, CT scan, bloodwork and sent home with diagnosis: Headache 😔
Headache persists, my daughter asks for help from the APN she works with yesterday. Got a 10am cancelation office appt with a vascular surgeon today, scheduled for biopsies at the hospital tomorrow morning 🙏 God was certainly looking out for me and sent blessings....

What can I expect from the biopsies, possible GCA diagnosis (it kind of seems likely). My Mom has it, they caught it after 1 Headache for her because she has PMR and I dont. She's had no relapses thank God. Who else can relate to the horrible headache and eye aches??

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Profile picture for elizabeth22
elizabeth22 | @elizabeth22 | 16 hours ago
In reply to @eaod "Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the..." + (show)
Profile picture for eaod @eaod

Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the Actemra works for you as it did not work for me. I am still at the trial and error stage. Here is my story. I received my diagnosis in Jan 2025 (at the time I was 67yrs old). I had severe temple pain in my right temple for a week or two. Went to see my Primary Physician and she started me on the high dose prednisone (60mg) then referred me to a Rheumatologist and a Surgeon. I had a biopsy done a week later. Because of the high dose of prednisone, 6 days prior to surgery, I was told that the results might come back as negative which is what happened. Once the pain went away we started decreasing the Prednisone. Once I got down to 7.5mg prednisone the temple pain returned (relapse #1). I had to go back up on the prednisone dosage (30mg) until the pain went away. We decided to try Actemra as I decreased the prednisone again. I used Actemra for 4 weeks then ended up with diverticulitis so had to stop the Actemra. While continuing on the decrease of Prednisone I got down to 10mg and the pain came back (relapse #2). I had to go back up on the prednisone dosage (cant remember if it was 20mg, 30mg or 40mg on this relapse). My Rheumatologist suggested we try Methotrexate as we decrease the prednisone dosage. Methotrexate caused me to be extremely tired and out of breathe when I did any physical activity. I am usually a go go go person so this was really causing issues with daily life. We discontinued Methotrexate and continued decreasing the prednisone. I got down to 8mg prednisone and the pain came back. Ended up back at 40mg prednisone (relapse #3) until the pain went away. Unfortunately the pain took longer to go away this time then the last 2 relapses. Rheumatologist suggested we try Rinvoq while we decrease the prednisone. We have been decreasing the prednisone every 2 weeks. I am now down to 7.5mg (as of 5 days ago). So far so good. I am a little skeptical though as this dosage is where I had my first relaps. Fingers crossed the Rinvoq works. If the Rinvoq works with the 7.5 mg prednisone we plan on staying on the 7.5mg for a few months before we trying going down to 6mg prednisone. The goal for me and I believe everyone else taking prednisone for this disease is that we can get off prednisone completely. Hopefully you will not have to go through any relapses and Actemra will work for you. The downside to all this prednisone, for me, is each time I have to go up on the dosage it puts more weight on me. One of the prednisone side affects that has hit me hard. I am hoping that once I can level out on the prednisone some of this puffy weight will come off. I have not lost any vision yet but I have seen my Ophthalmologist twice in the last two months because my vision in the left eye seems to be getting blurrier. He feels it is just a change in my vision. I go back in another 2 months to have it checked out again. I don't know if this is also a side affect to all of the prednisone I have had to take or not. Time will tell. Don't want to cause you to worry but wanted to give you a picture from someone that has not had a lot of luck with these other medications. I truly hope your journey with this disease is not as trying as mine has been. I check this site about once a month so please keep us updated on how you are doing. Saying prayers for you and everyone else dealing with this disease.

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@eaod
Hi. What a journey! I do hope the Rinvoq is effective so you can get off the prednisone. I also had the classic puffy face from the prednisone when I was in high doses. It does go away. I still get headaches but I think it’s because I don’t hydrate enough. It’s good you’re seeing the ophthalmologist on a regular basis to make sure your blurry vision is a result of the prednisone and not due to the temporal arteritis.
All the best to you.

REPLY
Profile picture for elizabeth22
elizabeth22 | @elizabeth22 | 16 hours ago

Good luck with your biopsies. They shave the temple area and numb you. I didn’t feel a thing but still have scarring 15 months later. Take care of yourself. I’m still getting the headaches but not the eye aches. Is GCA hereditary? It seems there’s not much research on it. You mentioned your mom has PMR. PMR falls under the category of temporal arteritis, I think.

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Profile picture for gailcha
gailcha | @gailcha | 5 hours ago
In reply to @eaod "Hello @gailcha , please let me know what your rheumatologist decides to try next. Sounds like..." + (show)
Profile picture for eaod @eaod

Hello @gailcha , please let me know what your rheumatologist decides to try next. Sounds like you are still at the trial and error stage also. Are you still doing the actemra IV along with the 15mg prednisone or just on 15mg prednisone right now?

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@eaod
Definitely trial and error- so much fun. 😬
Prednisone and Actrema.
Good luck.

REPLY
Profile picture for momac59
momac59 | @momac59 | 5 hours ago
In reply to @eaod "Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the..." + (show)
Profile picture for eaod @eaod

Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the Actemra works for you as it did not work for me. I am still at the trial and error stage. Here is my story. I received my diagnosis in Jan 2025 (at the time I was 67yrs old). I had severe temple pain in my right temple for a week or two. Went to see my Primary Physician and she started me on the high dose prednisone (60mg) then referred me to a Rheumatologist and a Surgeon. I had a biopsy done a week later. Because of the high dose of prednisone, 6 days prior to surgery, I was told that the results might come back as negative which is what happened. Once the pain went away we started decreasing the Prednisone. Once I got down to 7.5mg prednisone the temple pain returned (relapse #1). I had to go back up on the prednisone dosage (30mg) until the pain went away. We decided to try Actemra as I decreased the prednisone again. I used Actemra for 4 weeks then ended up with diverticulitis so had to stop the Actemra. While continuing on the decrease of Prednisone I got down to 10mg and the pain came back (relapse #2). I had to go back up on the prednisone dosage (cant remember if it was 20mg, 30mg or 40mg on this relapse). My Rheumatologist suggested we try Methotrexate as we decrease the prednisone dosage. Methotrexate caused me to be extremely tired and out of breathe when I did any physical activity. I am usually a go go go person so this was really causing issues with daily life. We discontinued Methotrexate and continued decreasing the prednisone. I got down to 8mg prednisone and the pain came back. Ended up back at 40mg prednisone (relapse #3) until the pain went away. Unfortunately the pain took longer to go away this time then the last 2 relapses. Rheumatologist suggested we try Rinvoq while we decrease the prednisone. We have been decreasing the prednisone every 2 weeks. I am now down to 7.5mg (as of 5 days ago). So far so good. I am a little skeptical though as this dosage is where I had my first relaps. Fingers crossed the Rinvoq works. If the Rinvoq works with the 7.5 mg prednisone we plan on staying on the 7.5mg for a few months before we trying going down to 6mg prednisone. The goal for me and I believe everyone else taking prednisone for this disease is that we can get off prednisone completely. Hopefully you will not have to go through any relapses and Actemra will work for you. The downside to all this prednisone, for me, is each time I have to go up on the dosage it puts more weight on me. One of the prednisone side affects that has hit me hard. I am hoping that once I can level out on the prednisone some of this puffy weight will come off. I have not lost any vision yet but I have seen my Ophthalmologist twice in the last two months because my vision in the left eye seems to be getting blurrier. He feels it is just a change in my vision. I go back in another 2 months to have it checked out again. I don't know if this is also a side affect to all of the prednisone I have had to take or not. Time will tell. Don't want to cause you to worry but wanted to give you a picture from someone that has not had a lot of luck with these other medications. I truly hope your journey with this disease is not as trying as mine has been. I check this site about once a month so please keep us updated on how you are doing. Saying prayers for you and everyone else dealing with this disease.

Jump to this post

@eaod
Thanks for sharing all this. Friday is my first follow up with my new Rheumatologist at Mayo since I got out of the hospital. He had me tapering like you did, every 2 weeks, 10 mg. Friday I go down to 30mg. I’m a little anxious about it due to I’m having more headaches again already. But keeping that journal of symptoms to talk about with the Dr.
And as I said in earlier post, maybe the Actmera will be the answer to getting me way down on Prednisone.
My family has a wicked sense of humor & are sending me memes of fat face babies & animals to poke fun at my “moon face”!
Gotta find something to laugh at, or else we can just cry sometimes!
I really appreciate all the wisdom. It does help me remember this process of healing will take time & I will be on this journey with my new unwelcome “passenger” called GCA for along time; the rest of my life. Got to accept I have to learn to live with it & be patient, take one day at a time. For today I am grateful. It always could be so much worse.

REPLY
Profile picture for istraz34
istraz34 | @istraz34 | 3 hours ago
In reply to @eaod "Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the..." + (show)
Profile picture for eaod @eaod

Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the Actemra works for you as it did not work for me. I am still at the trial and error stage. Here is my story. I received my diagnosis in Jan 2025 (at the time I was 67yrs old). I had severe temple pain in my right temple for a week or two. Went to see my Primary Physician and she started me on the high dose prednisone (60mg) then referred me to a Rheumatologist and a Surgeon. I had a biopsy done a week later. Because of the high dose of prednisone, 6 days prior to surgery, I was told that the results might come back as negative which is what happened. Once the pain went away we started decreasing the Prednisone. Once I got down to 7.5mg prednisone the temple pain returned (relapse #1). I had to go back up on the prednisone dosage (30mg) until the pain went away. We decided to try Actemra as I decreased the prednisone again. I used Actemra for 4 weeks then ended up with diverticulitis so had to stop the Actemra. While continuing on the decrease of Prednisone I got down to 10mg and the pain came back (relapse #2). I had to go back up on the prednisone dosage (cant remember if it was 20mg, 30mg or 40mg on this relapse). My Rheumatologist suggested we try Methotrexate as we decrease the prednisone dosage. Methotrexate caused me to be extremely tired and out of breathe when I did any physical activity. I am usually a go go go person so this was really causing issues with daily life. We discontinued Methotrexate and continued decreasing the prednisone. I got down to 8mg prednisone and the pain came back. Ended up back at 40mg prednisone (relapse #3) until the pain went away. Unfortunately the pain took longer to go away this time then the last 2 relapses. Rheumatologist suggested we try Rinvoq while we decrease the prednisone. We have been decreasing the prednisone every 2 weeks. I am now down to 7.5mg (as of 5 days ago). So far so good. I am a little skeptical though as this dosage is where I had my first relaps. Fingers crossed the Rinvoq works. If the Rinvoq works with the 7.5 mg prednisone we plan on staying on the 7.5mg for a few months before we trying going down to 6mg prednisone. The goal for me and I believe everyone else taking prednisone for this disease is that we can get off prednisone completely. Hopefully you will not have to go through any relapses and Actemra will work for you. The downside to all this prednisone, for me, is each time I have to go up on the dosage it puts more weight on me. One of the prednisone side affects that has hit me hard. I am hoping that once I can level out on the prednisone some of this puffy weight will come off. I have not lost any vision yet but I have seen my Ophthalmologist twice in the last two months because my vision in the left eye seems to be getting blurrier. He feels it is just a change in my vision. I go back in another 2 months to have it checked out again. I don't know if this is also a side affect to all of the prednisone I have had to take or not. Time will tell. Don't want to cause you to worry but wanted to give you a picture from someone that has not had a lot of luck with these other medications. I truly hope your journey with this disease is not as trying as mine has been. I check this site about once a month so please keep us updated on how you are doing. Saying prayers for you and everyone else dealing with this disease.

Jump to this post

@eaod
I drink a lot of water instead of eating, it helps keep the weight down. Also take Nutranize to help balance (?) the vitamins that Prednisone depletes. Has been helpful so far. No guarantee this will help you.

REPLY
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