1. < Polymyalgia Rheumatica (PMR)

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

delilah2020 | @delilah2020 | Nov 23, 2020

Thanks so much for a response. Will talk to my doctor about checking out those hormone levels. I am 69. Yes I alway dress lightly even in my home when cleaning and cooking. Am going well at weight also thank you but we all need to work harder always and keep our bodys active. The cooler winter months will be kinder.

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angelbear4 | @angelbear4 | Nov 23, 2020
In reply to @delilah2020 "I do pretty good. I know if I overdue my overheating seems to happen and I'm..." + (show)
@delilah2020

I do pretty good. I know if I overdue my overheating seems to happen and I'm then fatigue. Hate grocery shopping as I always feel by the time I get to register I just want to leave the groceries and go. Have the hair sweat really bad to the point of using kleenex to squeeze the dripping out. I always feel people at grocery are staring at my due to it and thinking SHE must have a fever. Have had the head overheating problem before diagnosted with PMT. It seems to happen when I overdue. I have COPD/ Asthma also diagnosed years ago. Also old case of Lymes found on testings in June 2020. Wish I had more than GP sometimes guiding me but he does seems to be helping and knows how to decrease prednison. He has checked thyroid for the overheating but a okay. I often wonder if to much medication causes the overheating? I also want to loose more weight and I think that is the biggest hurdle I could do to help myself even exercising small at first and working upward. Being more aware of bad carbs and sugar in foods also will help us. We will be winners.

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You described my grocery shopping experience exactly...once at the cashier, I just want to get out of there and my hair is like I just stepped out of the shower. I must admit that I am more aware of what food I'm buying. I am overweight but never had these symptoms before prednisone. Losing weight is definitely on my agenda but wish I had more energy to get there.... Today, I lower my prednisone to 20mg. after starting at 60mg. 3 months ago so we'll see how this goes. You are right...we will get thru this and be winners...

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sophie32 | @sophie32 | Jan 31, 2021

Is vegetarian the best way to go with temporal arteritis?

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Amanda Burnett | @amandaa | Jan 31, 2021

Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal arteritis. I did this so that you would be able to connect with other people that are dealing with the same issues as you are. Have you tried going meat free? Can you tell us if it has helped at all?

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2 replies
654321 | @654321 | Jan 31, 2021
In reply to @amandaa "Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal..." + (show)
@amandaa

Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal arteritis. I did this so that you would be able to connect with other people that are dealing with the same issues as you are. Have you tried going meat free? Can you tell us if it has helped at all?

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Meat feee??? I have not heard about that one. Will have to investigate .

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sophie32 | @sophie32 | Feb 1, 2021
In reply to @amandaa "Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal..." + (show)
@amandaa

Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal arteritis. I did this so that you would be able to connect with other people that are dealing with the same issues as you are. Have you tried going meat free? Can you tell us if it has helped at all?

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Thank you for getting my post to the right place!
I was diagnosed as having Giant Cell Arteritis last week, and my doctor has suggested I change my diet. The health issues I have had, and still have, are osteoporosis, and wet macular degeneration (well controlled by Eyelea). I am not overweight, need no drugs for cholesterol. I did increase the amount of fat & protein in my diet over the past 12 months and then wanted less sugar. My Doctor has suggested a Mediterranean diet with less meat and fat, which I will attempt. I have always eaten a lot of fish, chicken and vegetables, dislike deep fried food. I will miss the fat - especially since I have been reading that possibly elderly brains need more fat. I am 88. I am curious if other people with different diets, including vegetarians, have adjusted their diets when diagnosed with this type of arteritis, and if so, what results.

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2 replies
artist01 | @artist01 | Feb 2, 2021
In reply to @sophie32 "Thank you for getting my post to the right place! I was diagnosed as having Giant..." + (show)
@sophie32

Thank you for getting my post to the right place!
I was diagnosed as having Giant Cell Arteritis last week, and my doctor has suggested I change my diet. The health issues I have had, and still have, are osteoporosis, and wet macular degeneration (well controlled by Eyelea). I am not overweight, need no drugs for cholesterol. I did increase the amount of fat & protein in my diet over the past 12 months and then wanted less sugar. My Doctor has suggested a Mediterranean diet with less meat and fat, which I will attempt. I have always eaten a lot of fish, chicken and vegetables, dislike deep fried food. I will miss the fat - especially since I have been reading that possibly elderly brains need more fat. I am 88. I am curious if other people with different diets, including vegetarians, have adjusted their diets when diagnosed with this type of arteritis, and if so, what results.

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Hi @sophie32. I was diagnosed with Giant Cell Arteritis in June of 2019. I hope you are in the care of a rheumatologist for your new diagnosis of GCA. You'll need to be closely monitored for lab work, vision loss, and more. My initial symptom was loss of vision in my right eye, which is a common fear with GCA. I was immediately put on Prednisone to avoid further vision loss. I don't mean to frighten you, but this is a serious disease and needs close contact with a specialist. Perhaps you already have that in place. I'm so glad you have no medications up to this point. Good for you! I'm 85, so we're both up there. lol
Do keep in touch through Mayo Clinic Connect. You'll learn much and have lots of support. Warmest wishes.
Laurie

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 3, 2021
In reply to @sophie32 "Thank you for getting my post to the right place! I was diagnosed as having Giant..." + (show)
@sophie32

Thank you for getting my post to the right place!
I was diagnosed as having Giant Cell Arteritis last week, and my doctor has suggested I change my diet. The health issues I have had, and still have, are osteoporosis, and wet macular degeneration (well controlled by Eyelea). I am not overweight, need no drugs for cholesterol. I did increase the amount of fat & protein in my diet over the past 12 months and then wanted less sugar. My Doctor has suggested a Mediterranean diet with less meat and fat, which I will attempt. I have always eaten a lot of fish, chicken and vegetables, dislike deep fried food. I will miss the fat - especially since I have been reading that possibly elderly brains need more fat. I am 88. I am curious if other people with different diets, including vegetarians, have adjusted their diets when diagnosed with this type of arteritis, and if so, what results.

Jump to this post

@sophie32 You said that you were diagnosed with Giant Cell Arteritis by a rheumatologist and that he suggested that you change your diet. Did he also give you medications to take or suggest a plan of care?

This information may be of some interest
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

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1 reply
sophie32 | @sophie32 | Feb 26, 2021
In reply to @becsbuddy "@sophie32 You said that you were diagnosed with Giant Cell Arteritis by a rheumatologist and that..." + (show)
@becsbuddy

@sophie32 You said that you were diagnosed with Giant Cell Arteritis by a rheumatologist and that he suggested that you change your diet. Did he also give you medications to take or suggest a plan of care?

This information may be of some interest
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

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This is my diagnosis and care plan for Giant Cell Arteritis : On the morning of January 27,2021 my ophthalmologist did a vision test and field of vision test. I was delighted as my vision tested at near 20/20, corrected, better than usual. I returned home, decided I should check with my Internal Medicine Dr. on the dark hard veins that had appeared on my forehead under my shaggy quarantine hairdo a few days ago, and had not mentioned to the Ophthalmologist. I was told to come in as soon as I could although I had no other symptoms. The Internal Medicine Doctor, felt the "veins", which were actually arteries, and immediately ordered C-RP and Sedimentation Rate blood tests, read the results, which were elevated.. He ordered a biopsy for next day by a Rheumatologist who diagnosed GCA, but as far as I know is not part of the care plan. I was put on 40 mg Prednisone for 20 days, then 30 mg for 9 days before the biopsy was read. I protested that, but took the drug anyway. I had a facetime visit by phone with my Internal Med Doctor, who is in charge of my treatment, a week later. My second C-RP and Sed test was yesterday, which is one month after my first ones., Apparently inflammation was wiped out.
My readings: Sed rate:Auto on Jan 27 was 67, on Feb 25 was 3 (0 -30 mm/hr) .
C-Reactive Protein on Jan 27 was 3.90 and on Feb 25 was less than 0.30 (0.00 - 0.50 mg/dL
My Prednisone dose is now cut to 20 mg/day.

REPLY
1 reply
kimh | @kimh | Feb 27, 2021
In reply to @sophie32 "This is my diagnosis and care plan for Giant Cell Arteritis : On the morning of..." + (show)
@sophie32

This is my diagnosis and care plan for Giant Cell Arteritis : On the morning of January 27,2021 my ophthalmologist did a vision test and field of vision test. I was delighted as my vision tested at near 20/20, corrected, better than usual. I returned home, decided I should check with my Internal Medicine Dr. on the dark hard veins that had appeared on my forehead under my shaggy quarantine hairdo a few days ago, and had not mentioned to the Ophthalmologist. I was told to come in as soon as I could although I had no other symptoms. The Internal Medicine Doctor, felt the "veins", which were actually arteries, and immediately ordered C-RP and Sedimentation Rate blood tests, read the results, which were elevated.. He ordered a biopsy for next day by a Rheumatologist who diagnosed GCA, but as far as I know is not part of the care plan. I was put on 40 mg Prednisone for 20 days, then 30 mg for 9 days before the biopsy was read. I protested that, but took the drug anyway. I had a facetime visit by phone with my Internal Med Doctor, who is in charge of my treatment, a week later. My second C-RP and Sed test was yesterday, which is one month after my first ones., Apparently inflammation was wiped out.
My readings: Sed rate:Auto on Jan 27 was 67, on Feb 25 was 3 (0 -30 mm/hr) .
C-Reactive Protein on Jan 27 was 3.90 and on Feb 25 was less than 0.30 (0.00 - 0.50 mg/dL
My Prednisone dose is now cut to 20 mg/day.

Jump to this post

Were you experiencing headaches? Did the dark veins just suddenly appear?

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