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?

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@aberon22

Likelihood of temporal arteritis? My dad - who is 94 - has been experiencing symptoms for over a month. They involve a headache or discomfort near the top of his head and going down to an area behind his left ear near his neck. We happened to be at a doctor's appointment last Tuesday and temporal arteritis was mentioned. We are in the diagnosis process. The doctor prescribed prednisone. This provided some relief though the symptoms have not disappeared. The doctor also referred us to a surgeon who has scheduled a procedure tomorrow for an artery biopsy.
Is this the right approach? I am concerned about the procedure at dad's age though he is generally fit and active. I am also concerned about his going under anesthesia. There is some history of significant sensitivity and he has experienced both very high and very low blood pressure. I have heard the biopsy can be done with a local but the surgery center seems to be scheduling more extensive sedation.
Anyone have feedback?

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I was diagnosed with giant cell arteritis/temporal arteritis over 3 and a half years ago. The steps your dad’s doctor has laid out for you sounds exactly like what happened to me. First I would like to ease your fear about anesthesia. I was just given shots in the temple to numb the area and the doctor took the biopsies and stitched me up. So far that has been the easiest part of this disease. I was put on 60mg of prednisone before I ever had the biopsy and have to say that I felt better within 48 hours. The problem comes when you have to reduce the dose of the steroids. I did fairly well until I got down to 20 mg. After that through trial and error We have learned that if I go down more than 1mg a month or sometimes 1/2 mg I start to have more inflammation and pain. I have been on a new drug for about a year now called Actemra which is a shot one day a week . The theory was that maybe it would allow me to get off the prednisone quicker but that has just not been the case. The up side is my bloodwork has been great while using the shot, but I still have relapse type issues but without the corresponding rise in c-restive protein or seed rate.
I wish your dad all the best

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@amptrooper

So I had the Ultrasound on my arteries yesterday. They had the results posted on my online chart in just about an hour. The results were that everything was "normal". So glad that even though I am currently sitting here in my recliner with one of those I shaped pillows keeping my head which is sore to the touch from touching the back of the recliner and my jaw is sore to the point that my wife says I don't open it all the way to talk and, my cheeks hurt, eyes are watery and blurry and feel like someone is trying to push them out of my head from inside and my temples feel swollen and hurt to the touch, that everything is fine and normal! So it's all just Normal! That must mean that everyone has this exact same thing happening to them too. I should just stop nothing the doctors and forget and live with this. So glad that I can finally move on from this because it's all just Normal!
😡

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Please don’t give up. If it is temporal arteritis the consequences for going untreated can be devastating. Also I hope you can seek a second opinion. I see someone else warned you about not relying on a ultrasound. I was also told that an ultrasound would not show if you have this disease. I was told that a biopsy is the only definitive way to diagnose this problem. Best of luck to you

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@crhp194

I have been diagnosed via a biopsy with temporal arteritis but have not yet started treatment. I don't have any of the symptoms so I suspect it was found early though I did have open heart surgery May 10, 2016 for aneurysm repair and arch replacement. I am 72 and ready for cataract surgery plus extensive dental work. My question-does taking prednisone preclude doing these procedures?

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I have polymyalgia rheumatic which sometimes travels with GCA. I have also been on high doses of prednisone. At the time of diagnosis, I had the beginnings of cataracts in both eyes. Within six months, I needed cataract surgery. Prednisone is like fertilizer to cataracts. My ophthalmologist removed the cataracts, and my vision was vastly improved. I have, however, had further vision problems related to the dosage or prednisone. If you have time for research, you might want to research what prednisone can do to vision.

The rheumatologist I consulted at the Mayo Clinic in Jacksonville, FL, told me that I needed to quickly report any vision changes to my doctor and to have my ophthalmologist regularly check my eyes. What I have learned is that many ophthalmologists no know more about prednisone's affects on vision than what I have found online. I am considering seeing if I can get another appointment with Mayo.

May advice to you is to do extensive research and to become an assertive advocate.

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@rachelp

I have polymyalgia rheumatic which sometimes travels with GCA. I have also been on high doses of prednisone. At the time of diagnosis, I had the beginnings of cataracts in both eyes. Within six months, I needed cataract surgery. Prednisone is like fertilizer to cataracts. My ophthalmologist removed the cataracts, and my vision was vastly improved. I have, however, had further vision problems related to the dosage or prednisone. If you have time for research, you might want to research what prednisone can do to vision.

The rheumatologist I consulted at the Mayo Clinic in Jacksonville, FL, told me that I needed to quickly report any vision changes to my doctor and to have my ophthalmologist regularly check my eyes. What I have learned is that many ophthalmologists no know more about prednisone's affects on vision than what I have found online. I am considering seeing if I can get another appointment with Mayo.

May advice to you is to do extensive research and to become an assertive advocate.

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@rachelp I am a nearly 80-year-old diabetic who needs cataract surgery but can't have it because of the high dose Prednisone I have been taking for GCA since I was diagnosed in January 2020. Although I am currently taking 3 diabetic meds, the Prednisone has caused very high blood glucose test results that often run as high as 395 no matter what I eat. That can cause blindness and other bad issues for a diabetic. Have you found good sources for info regarding Prednisone and vision changes?

I am hoping that the combination of the Actemra injections I have been getting for 4 weeks and the recent addition of the 3rd diabetic medication will help me get to a lower dosage of Prednisone

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@bt56

I was diagnosed with giant cell arteritis/temporal arteritis over 3 and a half years ago. The steps your dad’s doctor has laid out for you sounds exactly like what happened to me. First I would like to ease your fear about anesthesia. I was just given shots in the temple to numb the area and the doctor took the biopsies and stitched me up. So far that has been the easiest part of this disease. I was put on 60mg of prednisone before I ever had the biopsy and have to say that I felt better within 48 hours. The problem comes when you have to reduce the dose of the steroids. I did fairly well until I got down to 20 mg. After that through trial and error We have learned that if I go down more than 1mg a month or sometimes 1/2 mg I start to have more inflammation and pain. I have been on a new drug for about a year now called Actemra which is a shot one day a week . The theory was that maybe it would allow me to get off the prednisone quicker but that has just not been the case. The up side is my bloodwork has been great while using the shot, but I still have relapse type issues but without the corresponding rise in c-restive protein or seed rate.
I wish your dad all the best

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@bt56 Are you still taking Actemra? Has it helped?
I am a diabetic who just had my 4th injection and have high hopes it will help lower the prednisone dosage because it has elevated my blood glucose test results to dangerous levels. I could use some good news.

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Normal oh yes! I have been dealing with this for several years . Prednisone has been with me for many years now . unfortunately it s the only medicine that really helps .

It s a real mysterious disease. frustration for sure .
At least it s not a disease that totally takes
Us down from all
Life s activities . Good luck and hope it goes in remission soon
.

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@paddington

@bt56 Are you still taking Actemra? Has it helped?
I am a diabetic who just had my 4th injection and have high hopes it will help lower the prednisone dosage because it has elevated my blood glucose test results to dangerous levels. I could use some good news.

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@bt56 I am still taking Actemra; I will have my 12th weekly injection on 5/22. It is helping. Especially since my endocrinologist gradually increased the dosage of Glimepiride - the third diabetic medication I take in addition to Metformin & Januvia - from 1 to 4 mg. daily. My blood glucose test results have improved. Glimepiride can cause low blood glucose, so you need to be diligent about your testing and length of time between meals and make sure you have Glucose Tablets available. Since my January diagnosis, my Prednisone dosage has gone from 40 to 60 to 50 and is back to 40 now.

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I was diagnosed with temporal arteritis 2 months ago and put on 60mg. of prednisone right away...I have been slowly tapering down and just started on 2 weeks of 25mg. but still have alot of jaw discomfort and the feeling of exhaustion all the time. Does anyone else get a feeling of numbness over the face and eyelids? Also, the areas of swelling of the face and around the front and back of the neck neck? I asked about a specialist that deals with this and was told that my family dr. would be handling things and would set at which rate the prednisone would be tapered off...Any other insight of things or what will be happening would be great to hear. Being diagnosed during a pandemic is also nerve wracking....I am 72 yrs and did have a biopsy for confirmation....

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@angelbear4

I was diagnosed with temporal arteritis 2 months ago and put on 60mg. of prednisone right away...I have been slowly tapering down and just started on 2 weeks of 25mg. but still have alot of jaw discomfort and the feeling of exhaustion all the time. Does anyone else get a feeling of numbness over the face and eyelids? Also, the areas of swelling of the face and around the front and back of the neck neck? I asked about a specialist that deals with this and was told that my family dr. would be handling things and would set at which rate the prednisone would be tapered off...Any other insight of things or what will be happening would be great to hear. Being diagnosed during a pandemic is also nerve wracking....I am 72 yrs and did have a biopsy for confirmation....

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Hello @angelbear4, Welcome to Mayo Clinic Connect. I'm sure it must be frustrating and nerve wracking to be diagnosed and not being able to get the answers about what will be happening. @amptrooper @tinkerbell @jmjlove and others may have some information or suggestions for you.

Since you were only diagnosed 2 months ago and started on 60 mg prednisone dosage and are now at 25 mg, that doesn't seem to be slowly tapering down on the prednisone. I know each of us are different and tapering is normally based on how well the symptoms are controlled when tapering down. You can find more information on Giant Cell Arteritis (sometimes call temporal arteritis) on Mayo Clinic's site here - Giant cell arteritis - Diagnosis and treatment: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764.

Have you discussed the tapering schedule or your symptoms with your doctor?

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@angelbear4

I was diagnosed with temporal arteritis 2 months ago and put on 60mg. of prednisone right away...I have been slowly tapering down and just started on 2 weeks of 25mg. but still have alot of jaw discomfort and the feeling of exhaustion all the time. Does anyone else get a feeling of numbness over the face and eyelids? Also, the areas of swelling of the face and around the front and back of the neck neck? I asked about a specialist that deals with this and was told that my family dr. would be handling things and would set at which rate the prednisone would be tapered off...Any other insight of things or what will be happening would be great to hear. Being diagnosed during a pandemic is also nerve wracking....I am 72 yrs and did have a biopsy for confirmation....

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So glad you are tapering off. It s so bad when the dose is high. Been battling this for about six years. So glad to talk to others who have this rare issue.
Hang in there and the beauty of this post let s talk whenever you want?

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