Giant Cell Arteritis Diagnosis

Hello everyone. I was diagnosed with Giant Cell Arteritis in April of this year, after having symptoms of jaw pain, scalp tenderness, pain at my left temple and a severe headache... and then waking up to only seeing blotchy gray areas out of my left eye. This was due to the evolving central retinal artery occlusion happening, which can be seen in GCA. I was admitted to the hospital and immediately put on a massive steroid infusion every 24 hours. That actually cleared up some of the blotches after the first infusion, but I still have areas of gray blotches in the center of my left eye vision. After four days in the hospital, I was sent home and started prednisone at 60mg. Soon after, I started seeing a rheumatologist who put me on a slow tapering schedule with the prednisone. I am now down to 8mg and will be finishing the course in October. In addition, I get Actemra infusions every 4 weeks. I am wondering if anyone else has had this kind of vision impairment happen with GCA. As mentioned, I can still see out of my left eye (which I am immensely grateful for), it's just that I see gray blotchy areas straight ahead. Also, I am wondering if during your tapering down on prednisone, has anyone experienced a drastic change in mood and energy level as you go to the lower mg tapering. I did read that this is common, but after feeling so "hyped up" on the higher doses, when I hit 12.5mg's, I definitely felt feelings of being kind of "down", moody, and cranky/irritable. I've tried to counteract those feelings with exercising more, which has helped some. Thank you in advance and I am so happy to have found this support group.

Hello, @jcb, and welcome. I'm sorry you lost part of your vision to GCA. I came very close, but my vision turned out ok. I went to the emergency room a little over a year ago when I started having strange vision problems. The vision in one eye would blur for a few seconds. It was like looking at an Impressionist painting. I had all of the other symptoms of GCA that you list except for the headaches. I also took the infusions for 3 days, and started prednisone at 60 mg per day. I also take Actemra injections weekly.

Your taper has been a lot faster than mine. It took me about 36 weeks to get down to 8 mg per day. I'm at 1 mg now, and I hope to be finished with prednisone in mid-August. I've had occasional down times as I've tapered, but they never lasted more than a day. Usually it was just for a few hours. I haven't had any other symptoms of PMR and GCA or prednisone withdrawal since I started treatment over a year ago.

It might have helped me that my rheumatologist had me stay at one dose for a full month occasionally. For example, I stayed at 10 mg for a month. then tapered to 5 1 mg at a time for 2 weeks each. Once I got to 5 I have tapered 1 mg every month. My rheumatologist wanted to give my adrenal glands a chance to become active again by tapering slowly below 5 mg.

I have PMR and GCA. It’s been about 18 months. Started at 60mg of prednisone and recently got down to 3 mg and all my blood test markers were normal. I really believe the PMR is gone. Went to 2mg and quickly had GCA symptoms, sore scalp, runny nose, neck pain, headache, etc. but no PMR symptoms. Went back to 5mg and GCA symptoms went away. Seems like prednisone can handle my problems with minor side affects (fatty face and fat around my middle). I’m going to stay on 5mg until I see the doctor in October. If 5 mg can keep my symptoms at bay with these side effects, I can live with that.

Just wondered, are you not also on Actemra? Many on this list are able to eventually move off of prednisone due to monthly Actemra infusions (or weekly injunction). I have GCA, and am down from 60 mg prednisone to now 12.5, with monthly Actemra, reducing 2.5 each month, hopefully eventually down to 0 prednisone.

Hello everyone. I was diagnosed with Giant Cell Arteritis in April of this year, after having symptoms of jaw pain, scalp tenderness, pain at my left temple and a severe headache... and then waking up to only seeing blotchy gray areas out of my left eye. This was due to the evolving central retinal artery occlusion happening, which can be seen in GCA. I was admitted to the hospital and immediately put on a massive steroid infusion every 24 hours. That actually cleared up some of the blotches after the first infusion, but I still have areas of gray blotches in the center of my left eye vision. After four days in the hospital, I was sent home and started prednisone at 60mg. Soon after, I started seeing a rheumatologist who put me on a slow tapering schedule with the prednisone. I am now down to 8mg and will be finishing the course in October. In addition, I get Actemra infusions every 4 weeks. I am wondering if anyone else has had this kind of vision impairment happen with GCA. As mentioned, I can still see out of my left eye (which I am immensely grateful for), it's just that I see gray blotchy areas straight ahead. Also, I am wondering if during your tapering down on prednisone, has anyone experienced a drastic change in mood and energy level as you go to the lower mg tapering. I did read that this is common, but after feeling so "hyped up" on the higher doses, when I hit 12.5mg's, I definitely felt feelings of being kind of "down", moody, and cranky/irritable. I've tried to counteract those feelings with exercising more, which has helped some. Thank you in advance and I am so happy to have found this support group.

Hello everyone. I was diagnosed with Giant Cell Arteritis in April of this year, after having symptoms of jaw pain, scalp tenderness, pain at my left temple and a severe headache... and then waking up to only seeing blotchy gray areas out of my left eye. This was due to the evolving central retinal artery occlusion happening, which can be seen in GCA. I was admitted to the hospital and immediately put on a massive steroid infusion every 24 hours. That actually cleared up some of the blotches after the first infusion, but I still have areas of gray blotches in the center of my left eye vision. After four days in the hospital, I was sent home and started prednisone at 60mg. Soon after, I started seeing a rheumatologist who put me on a slow tapering schedule with the prednisone. I am now down to 8mg and will be finishing the course in October. In addition, I get Actemra infusions every 4 weeks. I am wondering if anyone else has had this kind of vision impairment happen with GCA. As mentioned, I can still see out of my left eye (which I am immensely grateful for), it's just that I see gray blotchy areas straight ahead. Also, I am wondering if during your tapering down on prednisone, has anyone experienced a drastic change in mood and energy level as you go to the lower mg tapering. I did read that this is common, but after feeling so "hyped up" on the higher doses, when I hit 12.5mg's, I definitely felt feelings of being kind of "down", moody, and cranky/irritable. I've tried to counteract those feelings with exercising more, which has helped some. Thank you in advance and I am so happy to have found this support group.

Wow! Very similar to my situation. Same symptoms in mid April except no vision loss as I guess I caught it early. Biopsy May 21 confirmed GCA,
Started at 40 mg of Prednisone that increased blood pressure into the 140/85 range. Now down to 10 mg and BP has moved closer to normal. Plan is to go to 7.5 mg in three weeks and start Acterma infusions in mid August.
I am exercising 90 minutes a day ( weights, spin bike, elliptical, treadmill) with no pain of any kind.
The Acterna side effect list has me a bit nervous. No thrilled with the RA practice here as always seems reactive versus proactive. Going to Mayo Clinic in Jacksonville next week for consultation and opinion.
My other bloodwork is normal. Northing out of normal range. Seems like I may have panicked initially when I told RA doc here that I wanted off of Prednisone as soon as possible. Seems like there are folks who have been on it for years and years that as still walking around and living a decent life.
I stated on a few other posts it seems impossible to predict anything since every person reacts differently to the meds and side effects.
Hope you eye issue clears up.

Hello, @jcb, and welcome. I'm sorry you lost part of your vision to GCA. I came very close, but my vision turned out ok. I went to the emergency room a little over a year ago when I started having strange vision problems. The vision in one eye would blur for a few seconds. It was like looking at an Impressionist painting. I had all of the other symptoms of GCA that you list except for the headaches. I also took the infusions for 3 days, and started prednisone at 60 mg per day. I also take Actemra injections weekly.

Your taper has been a lot faster than mine. It took me about 36 weeks to get down to 8 mg per day. I'm at 1 mg now, and I hope to be finished with prednisone in mid-August. I've had occasional down times as I've tapered, but they never lasted more than a day. Usually it was just for a few hours. I haven't had any other symptoms of PMR and GCA or prednisone withdrawal since I started treatment over a year ago.

It might have helped me that my rheumatologist had me stay at one dose for a full month occasionally. For example, I stayed at 10 mg for a month. then tapered to 5 1 mg at a time for 2 weeks each. Once I got to 5 I have tapered 1 mg every month. My rheumatologist wanted to give my adrenal glands a chance to become active again by tapering slowly below 5 mg.