1. < Polymyalgia Rheumatica (PMR)

Giant Cell Arteritis Diagnosis

Posted by oztrax @oztrax, Mar 24, 2023

I think GCA is a better name than Temperal Arteritis, as it affects more than just head arteries.
This last week I’m sure I have this condition, after 2 years of tests, specialists and a few thousand dollars searching for a diagnosis.

Fatigue isn’t the right word, it’s more like complete weakness in all my muscles and body. Have lost 12 kgs without even trying.
I was 56 years old when the fatigue started, 6 months later then inner ear vertigo, tinnitus and ear pain. Eg climb a ladder and vomit a few minutes later….ENT said it was Vestibular Migraine, with no cause or treatment available, but vestibular testing showed hydrops (inflammation in inner ear) .Migraine headaches were unbelievable.
Was bed ridden with this for 2 months then another 6 months before getting back to work full time.

End of last year I had GI issues, painful shoulder and lower back pain for no reason.
Around this time noticed tender scalp, which was very painful around right temporal region. Told the ENT about it and he said it was just muscular, nothing to worry about………
Last 2 months bad shoulder pain in both shoulders , minor pain both hips and both elbows. Looked like PMR, also had elevated liver enzymes, urine tests always showed dehydration and low Uric acid.

Also suffer from Psoriatic Arthritis which has been severe in the past affecting my fingers and toes, take Arava (leflunomide) daily for this, had been on methotrexate and sulfasalazine before this over the last 10 years or so.

So last week my scalp was so sore it was stinging around the right Temperal and right occipital areas. I was researching PMR at saw GCR mentioned and knew that’s what I must have.

Will have a temporal artery ultrasound next week, but I think they should also ultrasound occipital and frontal lobe areas as these are painful as well.

My question is : in my case this has been a slow progression of this disease , which is atypical and some of the symptoms previously where not always present . Also up to 2 months ago , blood tests were normal.

Maybe the Arava/Leflunemide and previous methotrexate slowed down both the onset and progress of the disease and hopefully I don’t have any permanent artery damage.

What are your thoughts and advice

Regards
OZ

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Mike | @dadcue | 5 days ago
In reply to @kathren "I appreciate everyone sharing their stories. I am thankful to find this group. I thought I..." + (show)
@kathren

I appreciate everyone sharing their stories. I am thankful to find this group.
I thought I was recovering from a severe case of PMR for 18 months, dropping down to 2 mg. of prednisone and a weekly dose of MTX 2.5 mg, when I suddenly experienced GCA ten days ago! I can't put my head down, I have pain on the right side of my face both in front of and behind my ear. I haven't been able to sleep laying down as the throbbing and discomfort make it impossible. I sleep (when I can relax) sitting up on our couch.
My rheumatology practice is down to two rheumatologists (mine moved to another state in June) but they won't have a replacement until October. So my appointment is September 23!! I was put on the "waitlist"- my PA advised I call every day explaining my pain and asking where I stand on the "waitlist." He also said when the pain is too bad, take a Tramadol. I don't want to get addicted. He assured me that I won't since I take them so sparingly.
I turn 84 nxt month and am depressed to think I have to start back on prednisone and that this disease can cause blindness ad stroke. My DNA is northern Europe. No one had this disease. My mom lived to 97 and my dad age 90. Thank you for listening. It seems all of us receive some different treatments. I live in a small GA town an hour away from Augusta, GA and the medical centers and doctors.

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You do need to get it evaluated ... don't wait. I have never been diagnosed with GCA but I have been treated for PMR for many years. My doctors always ask me about any symptoms of GCA every time I see them. They have always emphasized that I need to report those symptoms if they ever happen.

I get plenty of facial pain and visual disturbances but I have never been diagnosed with GCA. I have been diagnosed with "other things" but that doesn't matter because any symptoms like you have while you are diagnosed with PMR require an early evaluation. Go to the emergency room if you have to in order to get it evaluated.

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maddboat02 | @maddboat02 | 5 days ago

Re: ultrasound, be aware you may be negative and you still have active GCA. My ultrasound was negative and doc encouraged me to have biopsies which of course came back positive on both sides.

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mam24 | @mam24 | 5 days ago
In reply to @kathren "I appreciate everyone sharing their stories. I am thankful to find this group. I thought I..." + (show)
@kathren

I appreciate everyone sharing their stories. I am thankful to find this group.
I thought I was recovering from a severe case of PMR for 18 months, dropping down to 2 mg. of prednisone and a weekly dose of MTX 2.5 mg, when I suddenly experienced GCA ten days ago! I can't put my head down, I have pain on the right side of my face both in front of and behind my ear. I haven't been able to sleep laying down as the throbbing and discomfort make it impossible. I sleep (when I can relax) sitting up on our couch.
My rheumatology practice is down to two rheumatologists (mine moved to another state in June) but they won't have a replacement until October. So my appointment is September 23!! I was put on the "waitlist"- my PA advised I call every day explaining my pain and asking where I stand on the "waitlist." He also said when the pain is too bad, take a Tramadol. I don't want to get addicted. He assured me that I won't since I take them so sparingly.
I turn 84 nxt month and am depressed to think I have to start back on prednisone and that this disease can cause blindness ad stroke. My DNA is northern Europe. No one had this disease. My mom lived to 97 and my dad age 90. Thank you for listening. It seems all of us receive some different treatments. I live in a small GA town an hour away from Augusta, GA and the medical centers and doctors.

Jump to this post

I was diagnosed with GCA in November 2024. As soon as myMD/PCP realized what my symptoms (which did include all that you mention plus some loss of vision in my right eye) indicated, she sent me for lab reports to check on inflammation, gave me a shot of prednisone (don't know the amount) and prescribed prednisone at 60 mg per day to protect my eyes. She also contacted a vascular surgeon for the needed biopsies. Only then did we discuss finding a rheumatologist. The prednisone immediately took care of my symptoms. I saw a rheumatologist a few weeks later and he picked it up from there. So, I think getting back to your PCP immediately would help. It is all about protecting your eyesight. I am 82 years old and successfully tapered off the prednisone and have been on Actemra ever since without problem. Best wishes. It's a difficult journey but not too bad. No one in my Northern European family had this either. Just lucky, I guess.

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1 reply
Mike | @dadcue | 5 days ago
In reply to @mam24 "I was diagnosed with GCA in November 2024. As soon as myMD/PCP realized what my symptoms..." + (show)
@mam24

I was diagnosed with GCA in November 2024. As soon as myMD/PCP realized what my symptoms (which did include all that you mention plus some loss of vision in my right eye) indicated, she sent me for lab reports to check on inflammation, gave me a shot of prednisone (don't know the amount) and prescribed prednisone at 60 mg per day to protect my eyes. She also contacted a vascular surgeon for the needed biopsies. Only then did we discuss finding a rheumatologist. The prednisone immediately took care of my symptoms. I saw a rheumatologist a few weeks later and he picked it up from there. So, I think getting back to your PCP immediately would help. It is all about protecting your eyesight. I am 82 years old and successfully tapered off the prednisone and have been on Actemra ever since without problem. Best wishes. It's a difficult journey but not too bad. No one in my Northern European family had this either. Just lucky, I guess.

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Has all of this happened in less than a year? ... that is incredible!

It seems to me that diagnosis and treatment of GCA is changing rapidly. I'm so glad things are going well for you!

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1 reply
mam24 | @mam24 | 5 days ago
In reply to @dadcue "Has all of this happened in less than a year? ... that is incredible! It seems..." + (show)
@dadcue

Has all of this happened in less than a year? ... that is incredible!

It seems to me that diagnosis and treatment of GCA is changing rapidly. I'm so glad things are going well for you!

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Oops. I meant 2023. But things have gone very well.

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1 reply
jcb25 | @jcb25 | 4 days ago
In reply to @jeanrod825 "I was diagnosed with GCA in October 2024. I woke up one morning and my vision..." + (show)
@jeanrod825

I was diagnosed with GCA in October 2024. I woke up one morning and my vision was blotchy and patchy with grey areas. Went to see Retinol Specialist and he knew immediately from symptoms I had been having. Very painful in jaw area and headaches. He started me on 80 mg prednisone per day and sent me to a Neuro Opthamologist. After couple of months she dropped me to 60, then 40 and I am now down to 3 mg for 1 week, 2 mg for next week, then 1 and then every other day for a week. About 1 1/2 weeks after going down, I would get. extremely tired. I also do better in after noon. All blood work has always come back normal. When they did biopsy, they did remove an occlusion. Has anyone had a recurrence and had to get back on prednisone? I hope I never have to get back on prednisone. Awful.!!!! Good luck to all of you. So thankful for this group.

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Hello! What you woke up to that morning is exactly what happened to me this past April, only it was in just one eye. You described it perfectly!! Was that in both eyes for you? And what is your vision like now? I hope your vision is back to normal. I was immediately put on steroid infusions every 24 hours for 4 days and have been on prednisone ever since. I also do Actemra infusions every 4 weeks. My vision in that eye has gotten better, but there are still grey blotchy areas. And yes, my prednisone tapering has definitely caused fatigue. Thank you for everything you wrote! And I am so thankful for this group as well!

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1 reply
beebee123 | @beebee123 | 4 days ago
In reply to @kathren "I appreciate everyone sharing their stories. I am thankful to find this group. I thought I..." + (show)
@kathren

I appreciate everyone sharing their stories. I am thankful to find this group.
I thought I was recovering from a severe case of PMR for 18 months, dropping down to 2 mg. of prednisone and a weekly dose of MTX 2.5 mg, when I suddenly experienced GCA ten days ago! I can't put my head down, I have pain on the right side of my face both in front of and behind my ear. I haven't been able to sleep laying down as the throbbing and discomfort make it impossible. I sleep (when I can relax) sitting up on our couch.
My rheumatology practice is down to two rheumatologists (mine moved to another state in June) but they won't have a replacement until October. So my appointment is September 23!! I was put on the "waitlist"- my PA advised I call every day explaining my pain and asking where I stand on the "waitlist." He also said when the pain is too bad, take a Tramadol. I don't want to get addicted. He assured me that I won't since I take them so sparingly.
I turn 84 nxt month and am depressed to think I have to start back on prednisone and that this disease can cause blindness ad stroke. My DNA is northern Europe. No one had this disease. My mom lived to 97 and my dad age 90. Thank you for listening. It seems all of us receive some different treatments. I live in a small GA town an hour away from Augusta, GA and the medical centers and doctors.

Jump to this post

I have GCA - diagnosed earlier this year.
If you are suspected of having GCA and not being treated for GCA/can’t get an appointment, in my opinion you should go to the ER because of seriousness of untreated GCA including sudden and irreversible blindness.
I had an early ER visit after suspected GCA and initial treatment. In addition to addressing vision issues it helped to get my treatment on track/going before I had a rheumatologist.

REPLY
checlark | @checlark | 4 days ago
In reply to @kathren "I appreciate everyone sharing their stories. I am thankful to find this group. I thought I..." + (show)
@kathren

I appreciate everyone sharing their stories. I am thankful to find this group.
I thought I was recovering from a severe case of PMR for 18 months, dropping down to 2 mg. of prednisone and a weekly dose of MTX 2.5 mg, when I suddenly experienced GCA ten days ago! I can't put my head down, I have pain on the right side of my face both in front of and behind my ear. I haven't been able to sleep laying down as the throbbing and discomfort make it impossible. I sleep (when I can relax) sitting up on our couch.
My rheumatology practice is down to two rheumatologists (mine moved to another state in June) but they won't have a replacement until October. So my appointment is September 23!! I was put on the "waitlist"- my PA advised I call every day explaining my pain and asking where I stand on the "waitlist." He also said when the pain is too bad, take a Tramadol. I don't want to get addicted. He assured me that I won't since I take them so sparingly.
I turn 84 nxt month and am depressed to think I have to start back on prednisone and that this disease can cause blindness ad stroke. My DNA is northern Europe. No one had this disease. My mom lived to 97 and my dad age 90. Thank you for listening. It seems all of us receive some different treatments. I live in a small GA town an hour away from Augusta, GA and the medical centers and doctors.

Jump to this post

I’m 83. Still in good shape. Work out 5/week, play singles tennis 3/week, mostly feel normal good. I say this just to let you know my normal situation. I have PMR/GCA. Have been on prednisone about 2 years. Recently went from 3mg down to 2mg. My PMR symptoms were still under control at 2mg but my GCA reared its ugly head big time. Went back to 3 mg and was better, bumped up to 5mg and now feel normal. Will try to get down to 3mg. But 3or5 is fine with me as long as everything stays under control. If you have GCA symptoms bump up on prednisone till they go away. Long term prednisone use side effects are nothing compared to the hell that untreated GCA will give you. Just my opinion…

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kathren | @kathren | 4 days ago

Thank you, folks, for your replies.
Tomorrow they (the practice where I have been going for PMR the past two years) will do labs on me as well as give me an injection of prednisolone (80 mg) to help with the pain for GCA.
When my new rheumatologist reads the report and checks the notes from my former rheumatologist who left the office in June, he will set up an office appointment with me.
The office had not yet hired a replacement for my doctor so the two left in the practice are dealing with her patients too.
I am glad that I don't have to go to the ER which is what my granddaughter in medical school wanted me to do yesterday when she learned of my condition. She was concerned about the possible outcomes for untreated GCA.
I have a September 23 appointment with this new doctor. But now he will get the lab results and hopefully move me up on the "waitlist."
It is important to have this connection. We live in different areas with different doctor opinions and treatments. Sharing with each other helps!
Be well!

REPLY
Mike | @dadcue | 4 days ago
In reply to @mam24 "Oops. I meant 2023. But things have gone very well." + (show)
@mam24

Oops. I meant 2023. But things have gone very well.

Jump to this post

Even so ... you are doing extremely well. I took prednisone for 12 years before I learned how well Actemra worked for me. I got off Prednisone relatively quickly after Actemra was started.

I wish I could get a do over and be treated with Actemra from the get go.

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