Thank you for posting this this. I would love to get a reply. I will be 60 in October. On May 4th my right eye I could only see out of half of it. It was getting late so I went to bed. The next morning it was Still the same. So I went to the eye Dr and he said I was having an eye stroke. So he let me leave driving. I remember getting to my neighbors and walking down the yard when the whole eye went out, and I lost my balance and fell onto the porch, bruising my head and my hip and breaking the top of my foot. That's the last I remember and the only specialist is an hour away. I ended up being in the hospital for 7 days.. Blood clot in my right eye and blind. I still have vision in my left eye, but not the best. I had to wait 3 weeks to get a screw in my foot because of being on 80 mg of steroids. I am still on 50 mg of prednisone and been getting infusion's. The last one I received was 2 days ago. Yesterday was the best day I had since all this started. The infusion was tocilizumab, and it felt so good to feel good for at least a day! My face is like a balloon that is going to pop. I know this is a older video, but please please if there is anything anyone can help me or my Dr out with reply. Thank you!
Hi Penny. Were you diagnosed with GCA or are you worried that you have GCA? If you contact our patient support coordinator with any questions you have she can try to answer them and provide information for you and your doctor. Email her at jhall@vasculitisfoundation.org or click on this link and complete the contact form. www.vasculitisfoundation.org/about/contact-2/ There are programs in different parts of the country (called GCA fast track programs) that your doctor can contact to help move the process forward for a quick diagnosis.
I was diagnosed with GCA and temporary aretis June of 2023 my eye Dr saved my eyesight after loosing vision in one eye going to the next he had a sed rate of blood work done I was at 97 and should be at 30 I was hospitalized and given predazone for four days my eyesight restored I am now 6 months of lower predazone levels and started actemra two weeks ago and feeling fantastic. My RA Dr has me lowering the pregazone and I will keep you posted I live in Florida and have the best Drs helping me. I'm suppose to be on actemra two years . My sed rate and all my blood work after a week and half of actemra and 40 mg was the best on all the blood work ordered . I am a 70 yr old woman my name is Lorraine
We're so sorry to hear that Mary. The Vasculitis Foundation is working to increase awareness among the general public and medical professionals so that a vasculitis diagnosis can be made in a more timely manner. One hopeful sign is an increase in what are sometimes called "GCA fast track centers" where patients are seen very quickly so that they can get the proper testing and imaging if a medical provider suspects GCA vasculitis.
@@vasculitisfoundationis there a specialist for GCA in the Dallas/Fort Worth worth area? My mother was recently diagnosed with GCA and has lost total vision in her left eye. We're unsure as to who she needs to be treating her. She is under the care of a neuro Opthomolagist right now.
Thank you for posting this this.
I would love to get a reply.
I will be 60 in October. On May 4th my right eye I could only see out of half of it. It was getting late so I went to bed. The next morning it was Still the same. So I went to the eye Dr and he said I was having an eye stroke. So he let me leave driving. I remember getting to my neighbors and walking down the yard when the whole eye went out, and I lost my balance and fell onto the porch, bruising my head and my hip and breaking the top of my foot. That's the last I remember and the only specialist is an hour away. I ended up being in the hospital for 7 days..
Blood clot in my right eye and blind. I still have vision in my left eye, but not the best.
I had to wait 3 weeks to get a screw in my foot because of being on 80 mg of steroids. I am still on 50 mg of prednisone and been getting infusion's. The last one I received was 2 days ago. Yesterday was the best day I had since all this started. The infusion was tocilizumab, and it felt so good to feel good for at least a day! My face is like a balloon that is going to pop.
I know this is a older video, but please please if there is anything anyone can help me or my Dr out with reply.
Thank you!
Hi Penny. Were you diagnosed with GCA or are you worried that you have GCA? If you contact our patient support coordinator with any questions you have she can try to answer them and provide information for you and your doctor. Email her at jhall@vasculitisfoundation.org or click on this link and complete the contact form. www.vasculitisfoundation.org/about/contact-2/
There are programs in different parts of the country (called GCA fast track programs) that your doctor can contact to help move the process forward for a quick diagnosis.
I was diagnosed with GCA and temporary aretis June of 2023 my eye Dr saved my eyesight after loosing vision in one eye going to the next he had a sed rate of blood work done I was at 97 and should be at 30 I was hospitalized and given predazone for four days my eyesight restored I am now 6 months of lower predazone levels and started actemra two weeks ago and feeling fantastic. My RA Dr has me lowering the pregazone and I will keep you posted I live in Florida and have the best Drs helping me. I'm suppose to be on actemra two years . My sed rate and all my blood work after a week and half of actemra and 40 mg was the best on all the blood work ordered . I am a 70 yr old woman my name is Lorraine
my husband lost 80% of his vision before diagnosed.
We're so sorry to hear that Mary. The Vasculitis Foundation is working to increase awareness among the general public and medical professionals so that a vasculitis diagnosis can be made in a more timely manner. One hopeful sign is an increase in what are sometimes called "GCA fast track centers" where patients are seen very quickly so that they can get the proper testing and imaging if a medical provider suspects GCA vasculitis.
@@vasculitisfoundationis there a specialist for GCA in the Dallas/Fort Worth worth area? My mother was recently diagnosed with GCA and has lost total vision in her left eye. We're unsure as to who she needs to be treating her. She is under the care of a neuro Opthomolagist right now.