I just learned that I may GCA, in the process of getting a biopsy Thursday. My labs and MRA and MRI was normal. The right sided headache has been present for almost 20 consecutive days. any one that was diagnosed still able to hold a full time job? These headaches for me are nearly delilitatin😢
We are so sorry to hear about your headaches but hope you will soon have an accurate diagnosis. With treatment, many people with GCA find that they can lead a normal life including holding down a job, but you may have to take some time off (if possible) to help your body heal during the early weeks of treatment. We have additional resources about GCA on our website www.vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/. If you do have GCA, we offer virtual support groups where you can meet other people with vasculitis including GCA. I know there are a couple people who attend the 11:00 AM Central Wednesday group that have GCA www.vasculitisfoundation.org/living-well/find-support/ Our patient support coordinator can also connect you with others living with GCA if you have questions you'd like to ask them www.vasculitisfoundation.org/connect/
I have had pmr for about 3 years. Recently I have been having systems of GCA. Headache, terrible malaize, vision blurring and some jaw claudication. I also skin on each side of my forehead that really rough and scaly. I also have shortness of breath like someone is sitting on my chest. Can this be from GCA. I go to get a temporal artery biopsy one teusday. They started me on 40 mg of prednisone but I weigh 320 lbs and it just seems to me that I need a larger dose. The 40 mg has helped but I still have a constant headeache.
I am so sorry to hear about all of the symptoms you are experiencing. The temporal artery biopsy should provide your healthcare providers with enough information to determine whether or not you have GCA. I'm glad the biopsy will happen soon as it is important to diagnose and treat GCA quickly. Here is a link to the American College of Rheumatology/Vasculitis Foundation clinical practice/treatment guidelines for GCA. www.vasculitisfoundation.org/giant-cell-arteritis-gca-takayasu-arteritis-tak-guidelines/ Refer to the medical management of GCA section for treatment guidelines. If you have GCA, the severity of your symptoms, how your vision is being impacted, and other factors will all be important in determining the optimal dose of prednisone. Discuss the ongoing symptoms you are experiencing with your doctor and consider sharing the clinical practice guidelines with them.
@@andrewtaylor9799 You're welcome. And I'm grateful for Dr. DeMizio's explanation of the Kaplan-Meier plot as I was having trouble decoding what it meant until he explained it.
Excellent video. I had GCA incident this Spring but no vision loss. Sed. rate was up to 104. It went down to 22 a month later. Very scary disease, not sure what brought it on...delayed stress possibly?
You are asking the questions we all have-what triggers a vasculitis flare? We wish we knew. We're so glad to hear that your GCA was diagnosed and treated promptly and that it did not result in vision loss.
@@vasculitisfoundation I didn't receive any treatment. The situation cleared away on its own. However my doctor insisted I have a temporal biopsy. The biopsy took place almost 2 months after the event. No giant cells were seen "with suggestion of a possible healed arteritis." The vascular surgeon called it "...possible burnt out GCA versus negative." I'm unsure if a repeat is possible and have been searching the videos here for any information about that.
I have excerpted a section from this journal article which partially answers your question. webeye.ophth.uiowa.edu/eyeforum/article/gca/index.htm "C-Reactive protein (CRP): Our studies indicate that estimation of CRP (an acute phase plasma protein of hepatic origin) is a highly reliable, reproducible and rapid test. CRP reaches abnormal levels within 4-6 hours and can increase up to 1,000 times, and also shows a much more rapid response to treatment than the ESR. Unlike ESR, it is not influenced by age, sex or hematologic factors. It generally runs parallel with the ESR; however, in some cases, CRP is not elevated when ESR is. This dichotomy between the two tests is very helpful when ESR is elevated due to conditions unrelated to GCA. Normal value is
In the linked study below of GCA, the median level for CRP was CRP = 54.7 mg/L, with the highest level seen = 100.5 mg/L and the lowest = 23 mg/L. If the study isn't visible, search for "Predictors of relapse and treatment outcomes in biopsy-proven giant cell arteritis: a retrospective cohort study". Watch the units with CRP measurements: some use mg/dL for which scores will be 10x lower than the same measurements reported in units of mg/L.
@@vasculitisfoundation how can crp be useful if gca patient had a level of 0.5mg/dl? that level is a normal crp stat. crp can also be an indicator of other inflammatory conditions and not gca?
@@vasculitisfoundation will gca go away on its own if it is not treated with prednisone? it seems that over time with other methods of anti inflation that it would disappear?
We are so glad you found this webinar to be helpful. Additional resources, including information about virtual support groups can be found on our website www.vasculitisfoundation.org
Great speaker and presentation. Thank you.
Thank you for your kind words. We are so glad you found this helpful.
I just learned that I may GCA, in the process of getting a biopsy Thursday. My labs and MRA and MRI was normal. The right sided headache has been present for almost 20 consecutive days. any one that was diagnosed still able to hold a full time job? These headaches for me are nearly delilitatin😢
We are so sorry to hear about your headaches but hope you will soon have an accurate diagnosis. With treatment, many people with GCA find that they can lead a normal life including holding down a job, but you may have to take some time off (if possible) to help your body heal during the early weeks of treatment. We have additional resources about GCA on our website www.vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/. If you do have GCA, we offer virtual support groups where you can meet other people with vasculitis including GCA. I know there are a couple people who attend the 11:00 AM Central Wednesday group that have GCA www.vasculitisfoundation.org/living-well/find-support/
Our patient support coordinator can also connect you with others living with GCA if you have questions you'd like to ask them www.vasculitisfoundation.org/connect/
I have had pmr for about 3 years. Recently I have been having systems of GCA. Headache, terrible malaize, vision blurring and some jaw claudication. I also skin on each side of my forehead that really rough and scaly. I also have shortness of breath like someone is sitting on my chest. Can this be from GCA. I go to get a temporal artery biopsy one teusday. They started me on 40 mg of prednisone but I weigh 320 lbs and it just seems to me that I need a larger dose. The 40 mg has helped but I still have a constant headeache.
I am so sorry to hear about all of the symptoms you are experiencing. The temporal artery biopsy should provide your healthcare providers with enough information to determine whether or not you have GCA. I'm glad the biopsy will happen soon as it is important to diagnose and treat GCA quickly. Here is a link to the American College of Rheumatology/Vasculitis Foundation clinical practice/treatment guidelines for GCA. www.vasculitisfoundation.org/giant-cell-arteritis-gca-takayasu-arteritis-tak-guidelines/
Refer to the medical management of GCA section for treatment guidelines. If you have GCA, the severity of your symptoms, how your vision is being impacted, and other factors will all be important in determining the optimal dose of prednisone. Discuss the ongoing symptoms you are experiencing with your doctor and consider sharing the clinical practice guidelines with them.
@@vasculitisfoundation I biopsy came back negative for QCA
We are glad to hear you don't have GCA, but hope you receive an answer to what is causing your symptoms.
Quite good summary on Giant Cell Arteritis.
We are so glad you found this video helpful.
@@vasculitisfoundation Thanks for including the Kaplan-Meier plot at 31:26.
@@andrewtaylor9799 You're welcome. And I'm grateful for Dr. DeMizio's explanation of the Kaplan-Meier plot as I was having trouble decoding what it meant until he explained it.
Excellent video. I had GCA incident this Spring but no vision loss. Sed. rate was up to 104. It went down to 22 a month later. Very scary disease, not sure what brought it on...delayed stress possibly?
You are asking the questions we all have-what triggers a vasculitis flare? We wish we knew. We're so glad to hear that your GCA was diagnosed and treated promptly and that it did not result in vision loss.
@@vasculitisfoundation I didn't receive any treatment. The situation cleared away on its own. However my doctor insisted I have a temporal biopsy. The biopsy took place almost 2 months after the event. No giant cells were seen "with suggestion of a possible healed arteritis." The vascular surgeon called it "...possible burnt out GCA versus negative." I'm unsure if a repeat is possible and have been searching the videos here for any information about that.
are you still able to work full time
@@LeticiaGutierezI had already been retired for 3 years when the GCA incident happened.
when he says a crp is robustly elevated for giant cell, then about how high or which range is the robustly elevated level?
I have excerpted a section from this journal article which partially answers your question. webeye.ophth.uiowa.edu/eyeforum/article/gca/index.htm
"C-Reactive protein (CRP): Our studies indicate that estimation of CRP (an acute phase plasma protein of hepatic origin) is a highly reliable, reproducible and rapid test. CRP reaches abnormal levels within 4-6 hours and can increase up to 1,000 times, and also shows a much more rapid response to treatment than the ESR. Unlike ESR, it is not influenced by age, sex or hematologic factors. It generally runs parallel with the ESR; however, in some cases, CRP is not elevated when ESR is. This dichotomy between the two tests is very helpful when ESR is elevated due to conditions unrelated to GCA. Normal value is
In the linked study below of GCA, the median level for CRP was CRP = 54.7 mg/L, with the highest level seen = 100.5 mg/L and the lowest = 23 mg/L. If the study isn't visible, search for "Predictors of relapse and treatment outcomes in biopsy-proven giant cell arteritis: a retrospective cohort study". Watch the units with CRP measurements: some use mg/dL for which scores will be 10x lower than the same measurements reported in units of mg/L.
@@vasculitisfoundation how can crp be useful if gca patient had a level of 0.5mg/dl? that level is a normal crp stat. crp can also be an indicator of other inflammatory conditions and not gca?
@@vasculitisfoundation will gca go away on its own if it is not treated with prednisone? it seems that over time with other methods of anti inflation that it would disappear?
@@vasculitisfoundation what other conditions are associated with gca, such as eustachian tube dysfunction or tinnitus ?
Thank you ❤❤❤❤❤❤
We are so glad you found this webinar to be helpful. Additional resources, including information about virtual support groups can be found on our website www.vasculitisfoundation.org
The volume on your webinar EQ is way to loud.
Not for me