Adjusting to life with temporal arteritis

Posted by MLeeB @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

@captainkenny

It’s Captainkenny. Have not been active on Mayo Connect for several months now for a couple reasons: GCA (temporal arteritis) sharing morphed into lots of exotic autoimmune diseases beyond my interest, and I was really turned off be several posts from obviously non-medical professionals, offering medical advice, which is irresponsible.
I was fortunate to have been quickly diagnosed and confirmed by biopsy with Temporal Arteritis only two weeks after my symptoms—headaches, tender to the touch forehead and temples, and jaw pain so intense I couldn’t chew my cereal. That was 16 months ago. Started on 40 mg Prednisone and symptoms were gone in 2-3 hours without return, except for two minor headache scares. Now down to 7 mg Prednisone and Methotrexate, see RA every 4 months and blood lab every 3 months. I’m 82 and workout at gym most days and walk an hour every day, so I’m grateful exercise doesn’t cause me problems because it’s been an important part of my lifestyle for many years. Good luck to all you GCA afflicted and stay positive.

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Welcome back, @captainkenny. Like @johnbishop said, Connect is a place for patients to connect and share experiences. So states the disclaimer https://connect.mayoclinic.org/page/about-connect/tab/disclaimer/

“All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.”

Having said that Connect clearly demonstrates the value of connecting with other patients to find you’re not alone, help problem-solve, learn new coping strategies, find trusted health resources, recommend care providers and so much more. Glad to have you contribute to the meaningful exchange.

How incredible that prednisone helped alleviate your pain within hours. Is the goal to maintain control of the pain with continued use of prednisone or is the hope to be able to reduce the dosage further and even discontinue using it?

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@colleenyoung

Welcome back, @captainkenny. Like @johnbishop said, Connect is a place for patients to connect and share experiences. So states the disclaimer https://connect.mayoclinic.org/page/about-connect/tab/disclaimer/

“All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.”

Having said that Connect clearly demonstrates the value of connecting with other patients to find you’re not alone, help problem-solve, learn new coping strategies, find trusted health resources, recommend care providers and so much more. Glad to have you contribute to the meaningful exchange.

How incredible that prednisone helped alleviate your pain within hours. Is the goal to maintain control of the pain with continued use of prednisone or is the hope to be able to reduce the dosage further and even discontinue using it?

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I too was just diagnosed with PMR. I have been treated for giant cell aortic arteritis. Just got off prednisone in July. By September I started having shoulder, leg, and arm pain. Had trouble combing my hair and sleeping on my side in addition to legs that ached. Apparently the former prednisone masked the PMR. Now back on 20 mg of prednisone and in four days, pain is gone. Plan now is to reduce the prednisone to 10 mg in two weeks. For anyone who has this, dont give up hope. There will be some solution to it even if the dosages of prednisone are different from mine.

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Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!

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@amptrooper

Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!

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Hello, @amptrooper, and welcome to Connect. You certainly have endured a lot in your 43 years with your motorcycle accident and the physical results of that plus now the symptoms that are plaguing you and for which you are seeking answers, especially whether it may be possible you have temporal arteritis.

Your thought of going to the community of people who have temporal arteritis to get some insights from those who've experienced it on your symptoms and whether they might truly add up to this disease – and then allow you to advocate for yourself with your medical team, armed with more input – is a very appropriate one. They may also have some thoughts about the scheduled ultrasound on your arteries you have coming up and what can be determined from that.

I'd like to invite @masonc @dchandler7 @captainkenny to return to this discussion to offer their insights and support, and I'd like to bring @bt56 @elderdiana @johnbishop into this discussion for the same.

What symptom, of the various you mentioned, @amptrooper, is bothering you the very most currently? How are you managing it?

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@lisalucier

Hello, @amptrooper, and welcome to Connect. You certainly have endured a lot in your 43 years with your motorcycle accident and the physical results of that plus now the symptoms that are plaguing you and for which you are seeking answers, especially whether it may be possible you have temporal arteritis.

Your thought of going to the community of people who have temporal arteritis to get some insights from those who've experienced it on your symptoms and whether they might truly add up to this disease – and then allow you to advocate for yourself with your medical team, armed with more input – is a very appropriate one. They may also have some thoughts about the scheduled ultrasound on your arteries you have coming up and what can be determined from that.

I'd like to invite @masonc @dchandler7 @captainkenny to return to this discussion to offer their insights and support, and I'd like to bring @bt56 @elderdiana @johnbishop into this discussion for the same.

What symptom, of the various you mentioned, @amptrooper, is bothering you the very most currently? How are you managing it?

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@amptrooper I was diagnosed when I was 58 and was told I was too young by the doctor that did my biopsy but my rheumatologist said not everyone fits in a nice neat box. When high doses of steroids made me feel better than I had in years my doctor said that was more convincing than any other test that I had Giant cell arteritis. Please don’t get discouraged and be your own best advocate. If you have any specific questions please ask

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@amptrooper

Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!

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Hello @amptrooper, I would like to add my welcome to Connect along with @lisalucier and other members. I have polymyalgia rheumatica (PMR) but it's currently in remission. My primary care doctor did ask me some questions after my second occurrence of PMR to find out if I had any pain or sensitivity in my scalp and other areas of the head. I asked him what would that mean and he said it's not uncommon to also develop/have Temporal Artritis along with PMR. I thought it was a little sensitive and he ran some tests and determined I didn't have it.

My thinking is along with that of @bt56, keep learning as much as you can about your health condition, keep asking questions and most important keep pushing the doctors for answers. You really are your best advocate. Another search tool I use that can be helpful is Google Scholar (https://scholar.google.com/). I'm not sure if you are familiar with it but if not give it a try.

Hope you have a very Happy Friday!

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@johnbishop

Hello @amptrooper, I would like to add my welcome to Connect along with @lisalucier and other members. I have polymyalgia rheumatica (PMR) but it's currently in remission. My primary care doctor did ask me some questions after my second occurrence of PMR to find out if I had any pain or sensitivity in my scalp and other areas of the head. I asked him what would that mean and he said it's not uncommon to also develop/have Temporal Artritis along with PMR. I thought it was a little sensitive and he ran some tests and determined I didn't have it.

My thinking is along with that of @bt56, keep learning as much as you can about your health condition, keep asking questions and most important keep pushing the doctors for answers. You really are your best advocate. Another search tool I use that can be helpful is Google Scholar (https://scholar.google.com/). I'm not sure if you are familiar with it but if not give it a try.

Hope you have a very Happy Friday!

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I neglected to say that I have both PMR And Giant Cell Arteritis so the tender spots on your head sounded very familiar

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@amptrooper

Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!

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@amptrooper

This is elderdiana. 3 years ago one night I suddenly went blind in one eye. Then 5 min. later my sight returned. About a month later my jaw ached when chewing. About a week later eye thing happened again. We were on vacation,so on returning home I called my doc. By that time the eye temporary blindness was happening every week or so. He said go to emergency room and they will know what to do. They did many testsover 2 days. Said Maybe I had TMJ in jaw and migrain headach in eye. Did not believe it could be temporal arteritis because I did not have headaches. My own doc said they should have done a biopsy to rule out temp. Arteritis. He insisted I go to another hosp for biopscy. It always says this disease does not start until we are 50. They also say headaches are present. At the first hosp. My sed rate was 47 which should have signaled possible temp. Arteritis, but they said that was because I was old. I was 78 at the time. So you are too young and I am too old. Thanks to my primary care doctor, I eventualky received the treatment I needed. We are all a bit different. I am still under treatment, take my meds, blood tests every 6 weeks.
and doing okay. Good luck with a diagnosis.

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Thanks for all your replies! I really appreciate it!
As to what symptom is the most bothersome… I don't know. Maybe my cheeks hurting. That's kind of how it starts. I mean it's always there but the intensity comes in waves. When it's starting to hit me hard the first thing I notice is my neck starts feeling kind of stiff. Then my cheeks start hurting and that quickly leads to my jaw and temples and the final stage is my head. Hurts to wear a hat or lay back on my head or comb my hair. My eyes kind of come and go with blurriness with or without the other symptoms. A lot of time it looks like I am seeing light smoke everywhere. Other times it looks like I am looking through water and I often see things like little black spots that zoom by.
The more I do, for example I had to go get groceries and run some other errands, the worse all the symptoms get. Soooo frustrated which, that makes it worse too! yay. I just want this to have a diagnosis and to start treatment.

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Just diagnosed. On 60mg prednisone for approximately 6 weeks. I have a side effect that none of my doctors can identify. I have jaw claudication and when I chew two golf ball size lumps appear between eyes and ears. Has anyone experienced this?

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I have not but my rheumatologist always asks if I have experienced jaw claudication since I have last seen him. He also checks to make sure my temples aren’t hardening or swollen. He says it’s a sign of relapse so maybe the 60mg isn’t controlling the GCA?? Once they put me on 60mg I felt so much better within 48 hours. Have you had anytime without symptoms? So sorry you are going through this.

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@bgaro

Just diagnosed. On 60mg prednisone for approximately 6 weeks. I have a side effect that none of my doctors can identify. I have jaw claudication and when I chew two golf ball size lumps appear between eyes and ears. Has anyone experienced this?

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@bgaro – from Tinkerbell – I guess you have Giant Cell Arteritis. Last October I tapered off of Prednisone after 1 1/2 years of GCA. I have never heard of the symptoms you mentioned.

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@amptrooper

Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!

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@amptrooper – You said you have had all types of blood work. I guess they have done a Sed Rate and CRP tests. My Sed Rate was 38 when they diagnosed me at Mayo Clinic. It does not have to be really high to have GCA. Also, had a biopsy the next day and it confirmed the diagnosis.

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@tinkerbell

@amptrooper – You said you have had all types of blood work. I guess they have done a Sed Rate and CRP tests. My Sed Rate was 38 when they diagnosed me at Mayo Clinic. It does not have to be really high to have GCA. Also, had a biopsy the next day and it confirmed the diagnosis.

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My biopsey was negative but my rheumatologist said I did have it based on symptoms and a sed rate of 80. This is very tricky to diagnose.

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@bgaro-The surgeon that did my biopsy said if the first side came out negative then they would have gone to the other side. I was so happy the right side came out positive so they did not have to do the other side. None of the doctors I went to in Orlando, Florida knew what was wrong with me. Finally we drove over 2 hours to Mayo Clinic in Jacksonville and went to the Emergency Room. I was diagnosed in 1 1/2 hours and they set the biopsy for the next day. Your Sed rate was a lot higher than mine was. The most important thing you can do is taper down slowly. I had problems from 20 mg to 17 1/2 mg and then had to go back to 20 for a few weeks and then went down 1 mg every 2 weeks to 10. It was a slow process but worth it in the long run. If you have any questions along the way let me know. It is a long journey and then of course the weight gain. You will gain weight in areas you would not have thought about. Good Luck!! Have you ever had the old Shingles Vaccine? They thought the reason I did so well was because I had the Shingles Vaccine.

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